After Seroquel

Nancy Rubenstein del Giudice
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The topic of this article is Seroquel withdrawal: the process of withdrawal and the consequences of having taken this particular chemical for over ten years. In my case, essentially since it came on the market in 1997. In the thunder of stories breaking loose regarding psych drug withdrawal, I am hearing next to nothing about Seroquel and I feel a moral obligation to offer up my story for the common good. Be forewarned; it ain’t pretty.

In 2009, I discovered, as countless people have, that I had been massively misled. I learned that over a decade of suffering (including the loss of my children over suicidality) was not, in fact, suffering from an actual disease, but instead, the “side effects” of the drugs purported to treat it. The story of this betrayal by the medical community may be one for another time. Let me stick to the subject of Seroquel, and cut directly to the chase.

For many years I took 1,500 mgs of Seroquel as part of my cocktail. By 2009, I was down to 300 mgs of Seroquel and 2 mgs Ativan. It was at that point that I got “fired” by the mental health system of Asheville, North Carolina. It was not an acceptable choice to wean off the rest. My psychiatrist said to me, “People like you don’t get off meds.” I didn’t believe her. I had been doing a lot of research on my own. Since I was already an activist (being lied to often tends to politicize people), I had support within the psychiatric survivor community. You know who you are. Thank you.

I took my last dose of Seroquel in late November of 2010. Two weeks later I was rushed to the hospital with severe abdominal pain and bloating. If a competent neurologist had been there at the emergency room, he might well have remarked to the doctors who directed me to have a radical hysterectomy; “you idiots. She just got off a drug that acts on neurotransmitters. Ninety Seven percent of neurotransmitters are in the gut. This is drug withdrawal.” However, no neurologist was on the scene. Just me in severe pain, my partner Jim in extreme fear, and a bunch of men in white coats who project the certainty that they know everything (aka doctors). I had an unnecessary hysterectomy.

A month and a half later, visiting Alaska’s “neighboring state,” Hawaii, minus my uterus and ovaries, the same thing happened, and my health began a downward spiral. My sightseeing on the beautiful island of Maui was largely restricted to urgent care centers and the one hospital emergency room. I had highly resistant bacterial infections (a good clue that my immune system was not functioning well) and extreme reactions to food and chemicals (like cosmetics, alas). The best four hundred dollars I have ever spent (not covered by insurance, and Why IS that?) was a food sensitivity blood test. BINGO. I was off the charts on food as I had known it. Dairy, grains (not just gluten), yeast, corn, soy. Yes, all my vegan dreams down the drain. Oddly, or perhaps not, I received this information as the best possible news. This was something I could act upon, and since I love creative challenges, I began writing a cook book. My first title (suggested by Jim) was the “I’m Allergic to Everything Cookbook.” Now, a year later, the title may well be, “No Grains, No Pains.” The issue of sustenance, post Seroquel, was relatively easily addressed.

The issue of insomnia, was to put it oxymoronically, a nightmare. For more than a year I was lucky if I got three or four hours of sleep, and I went days (nights, really) in a row with absolutely none. I could not yawn. I was never tired. My body was fixed in a state of fight or flight that created severe inflammation, agitated exhaustion, and severe irritability. There were periods of crisis, but the clumsy interventions only made things worse (Ambien, which did not work and Haldol, which gave me 24 hours of uncontrollable facial movements).

My primary care provider is an advanced nurse practitioner at a “progressive medical center.” Avante specializes in naturopathic medicine. My treatment has focused on amino acids, vitamins, medicinal herbs such as passion flower, bio-identical hormone replacement, and melatonin.

I also have consulted regularly with my friend Ken Thomas, author of the book, “Side Effects; The Hidden Agenda of the Pharmaceutical Cartel.” Ken started Nurses for Human Rights and has worked tirelessly to help people recover from the harm caused by psychotropic drugs.

As of June, 2012, I am sleeping six or seven hours fairly regularly, although any stress whatsoever can easily set me back. Yawning brings me great pleasure and unexpected gratitude. Suffice to say that sleep is the body’s greatest treasure and the biggest challenge in both preserving mental health and surviving Seroquel withdrawal. The last issue I will discuss with you, patient reader, is the one that seems the least heard of, but the issue that has changed my life forever.

In 2010, while weaning off Seroquel, I developed photosensitivity. Progressively, I lost the ability to read, look at computers, TV and movie screens, and in July, 2011, I could no longer keep my eyes open long enough to drive safely.

Several eye doctors told me there was nothing wrong. It was suggested in writing that, “as I became more emotional my eyes got worse.”

This May, 2012, The Boston Center for Sight captured microscopic images of “striking damage to the corneal nerves.” This condition is called “Corneal Neuropathy.” It is considered progressive and permanent.

The label on Seroquel has, for two years now, stated that patients on Seroquel should see their eye doctor every six months. It lists as a side effect, “eye pain.”

What the label doesn’t say is that forty percent of the body’s pain receptors are in the cornea. In summary, Seroquel withdrawal is a misnomer. The damage my body has sustained as a result of ingesting this toxin is an unfolding phenomenon of unknown destination.

Drug companies are unlikely to fund studies on a subject that could result in their drug being taken off the market. I don’t see the FDA as an entity separate from the drug companies.

In my experience, after researching this topic for over two years, the only book out there worth having is “How to get off Psychiatric Drugs Safely,” by James Harper, available through “The Road Back” website. Regarding the supplements recommended, which are now sold separately to avoid conflict of interest, I would just caution that I don’t think the Omega 3’s are strong enough, that the Body Calm (which is Montmorency Cherry) can be agitating to some people who may be in an advanced state of oxidative stress. My concern with their probiotics is that they may not be appropriate for everyone. For people with small bowel overgrowth (est. between 17-30% of the population) most probiotic formulas fuel unwanted bacteria. There are similar problems using some probiotics for people with Irritable Bowel Syndrome, Celiac Disease, Crohn’s Disease, and Ulcerative Colitis. For people with these conditions, there are companies that make diet specific probiotics.

Overall, James Harper is the most comprehensive truth teller out there about the science of how these drugs act, what withdrawal can be like, and how to get through it. It is critical to keep in mind that every person is different. Three things are always the same; doctors know nothing about withdrawing from psychotropic drugs, there is no existing research, and there is no safe place of refuge. As bleak as this sounds, it is the truth.

What I hope for is that my story will coax out of obscurity some of the others like myself, who took the bait when Seroquel first came out, who followed the regime of high doses as recommended for over ten years, and have been Seroquel free for more than a year. These accounts will help the millions of people who now believe that “Seroquel is the new Sominex.”

There will be two distinct groups of people to answer my call. One group will be people who had actual symptoms of mania or psychosis before they were “treated” with psychotropic drugs. The second group, the one to which I belong, is the group of people who were experiencing a depression during a difficult life transition (Divorce, mid-life crisis, death of a loved one, etc.) and were misled into believing they had a chemical imbalance that required medication, “just like a diabetic requires insulin.”

Either way, these two groups have important stories. Let us fill this silent abyss with the voices of experience.

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382 COMMENTS

  1. Nancy, I appreciate that you shared your painful story and I’m so sorry for what you went through. I worry a lot about the way Seroquel seems to be handed out like M & Ms – as you point out, it is being prescribed as a sleep aid for people with no psychiatric history (not that it should be prescribed to anyone!), which just boggles the mind.

    I hope some of the psychiatrists who post on Mad In America will read your piece and respond in a thoughtful and non-defensive way to what happened to you and so many others who trusted in their psychiatrists.

    • Hi Nancy,
      I am so pleased I found your experience with Seroquel. I hate this drug…I have also done much research and was diagnosed Bipolar 2 10 years ago…due to a messy divorce. Why I have been put on an anti-psycotic for bipolar 1 (i only recently discovered) I am still trying to obtain a straight answer from my doctor. Is it a money making racket?? I have been on numerous drugs and finally Seroquel (and many others) for 2 years now with horrible side effects. I told my doctor a week ago I want to go off this drug completely. He was not at all happy. I have been told to go from 600 mg to an immediate 300 mg then to nothing. Gosh, the stomach pain, nausea, food aversion, dizziness etc. I thought I might have a stomach ulcer… It was horrid. My eyesight has gone from fine to really bad (is this possible). I started weaning my self down less aggressively . I am now on 100 mg . I even began wondering if my Dr wanted me to have radical side effects to come rushing back to him. The side effects on the drug: wow weight gain – which I just managed to keep under control with extreme excercise , the want to eat was terrible ( i never craved sweet ever before). My blood pressure sky rocketed, my cholesterol was terrible, holding a coffee cup in the morning without coffee all over the floor from the shakes was awful. Try act normal and sane with these side effects. I am quite sure I am more normal without these horrible drugs. Just how to get them out my system and what to take in its place I don’t know. I don’t even know where to begin. I did notice the book you mentioned. Is that a good start? You mentioned each person is different in their response to Omega 3 etc…any ideas/suggestions how to do this? I am tired of poisoning my system for so long with no idea of the long term damage that these drugs are causing. Truly appreciate help

      • Hi, a response to the above…My eyesight was so concerning and I had NO CLUE, had forgotten it could have been the Seroquel until I just read this. I have always been extremely nearsighted. Yes, Seroquel does require regular eye checks and it can cause eye problems. Your shrink should have told you. In fact, it is required. I recall that for quite some time, my prescription was radically changing. My ophthalmologist is the only doctor I currently have that I trust. He actually didn’t know what was causing the rapid eye changes but had me coming in once every six months. Each time, my prescription would be different. I couldn’t afford to change my glasses each and every time. I wasn’t on antidepressants in recent years except briefly, thank goodness. I found that Lamictal caused double vision, and immediately stopped it. (My shrink denied that Lamictal will cause this but it’s one of the most common side effects.) My eye doctor also was the one who “caught” a thyroid problem and told me I should get my level checked, just by looking at my eyes. Sure enough, he was right. I believe my eyes have improved since getting off psych meds. Extreme nearsightedness runs in my family anyway, but these rapid changes were very scary and I’m glad that’s over now. You can even go blind. Last time I went my eye doc said I didn’t have to get checked again for a year. I’m 56, by the way.

      • Dear Comingoff… My shrink is trying to put me onto Seroquel for straight depression (no psychosis) and I am resisting. I am being treated as though I have the brains of a slug for this. In your case, though, a diagnosis of bipolar means that you have bipolar (assuming the diagnosis is correct) and this can’t stem from a messy divorce. It is a severe mental illness that needs lifelong treatment, but we are still in the dark ages regarding mental illness treatments. One of the very few tools that a shrink has for this (Bipolar) is antipsychotics, also anti convulsants. You need to research your disorder thoroughly, yourself, eat healthily and have a solid plan with your psychiatrist. It sounds to me, though, that you may have had a hasty diagnosis, as it takes many many visits to make a diagnosis of any type of bipolar. Your depressions will be in marked contrast to your manias and you will need different medications for each if your mood stabilising meds don’t work. Personally, I don’t think we currently have any very useful meds for mental disorders, the terrible side-effects are often worse than the illness, but in some cases, such as severe bipolar and schizophrenia, medications are essential to try to give the person their life back.
        Dear Nancy (no place to insert a direct reply to you) I truly hope you can recover from such a long time on high doses of Seroquel, however I would like to respectfully correct you on a couple of your comments. 97% of neurotransmitters are NOT in the gut, there are roughly 100 currently known neurotransmitters in the brain and appx. 40 known within the gut (this network is sometimes called The Second Brain.) Secondly, we would be in a massive pickle if 40% of the body’s pain receptors were in the cornea (!) We need many billions for the rest of our body, the cornea has but a tiny fraction of the pain receptors in our bodies, but we can say that the cornea is very sensitive (hence eye injuries are so painful) and that the cornea has 400-600 times the pain receptors of skin, for example and about 50 times more than in dental pulp.
        I have seen your article elsewhere on the web, entitled If you take Seroquel, your eyes are one of the risks. I think this is a HUGE problem and one which I wasn’t aware of, so thank you very much. My first prescription for Seroquel (Quetiapine) was given to me by a trainee doctor…it was prescribed for me by a psychiatrist who was NOT EVEN IN THE ROOM! The trainee doc I was seeing went for advice to a more senior one (she was gone for about 3 minutes) and came back with a script for Seroquel. Yesterday I saw an inexperienced young doctor who tried once more to prescribe me Seroquel, despite me currently suffering from akathisia!! He went to the same more senior doctor for five minutes and returned to tell me that I didn’t have akathisia as you could only get it following treatment with an antipsychotic (I had taken Prochlorperazine for a month for nausea, I had explained this) so I should try Seroquel.
        Psychiatrists here in the UK have about 30 minutes at the most for an NHS patient, so they don’t always have enough time to explain the side effects of the drugs they so freely prescribe, but I have yet to meet a single one that warns AT ALL of the terrible possible side-effects and problems of withdrawal. I have never had psychosis so do NOT need an antipsychotic. As you have described, the withdrawal is absolute hell, but this is never considered by the doctors that prescribe it. We need to educate ourselves, the times of trusting our doctors have long gone, sadly. Before we pop a pill, we now need to know all about it, we are the ones who have to live in our (damaged) bodies if we don’t…..
        Wishing you both a fast recovery x x Dizzi x x

    • Nancy,
      I’ve read your story and those of others, all horrifyingly and tragically very compelling. I too fell a ‘victim’ by that accursed “profession,” and at the same time, I’m still frustrated and angry that I allowed myself, or should I say in some way, sacrificed myself to it years ago; signing a form of “admission” to a state psychiatric hospital where I live. It was probably the worst and least proud decision I could have done at the time, and yet my withdrawal from my last neuroleptic, Abilify, now off 8 months, was the bravest and most difficult thing I’ve ever done. 30 years under the spell of neuroleptics, the straight jacket effects of the drugs unknown to me, until experiencing the agony and paradoxes of withdrawal. I too believed the “chemical imbalance theory” hook line and sinker. Peter Breggin’s videos were a revelation, but not until I found out that the “side effects” no one spoke of are every bit a reality; the mental and physical torment has been beyond “inexperienced” “med” withdrawers comprehension. I saw Breggin 5 times, his “Withdrawal from Psychiatric Drugs,” is the epitome of reliable and scientifically accurate information, but he was of little help to me getting off this last drug. My insomnia and then mania was raging (I didn’t even know what “mania” meant then).
      I was given Seroquel as a sleep aide too, but fortunately used it but a few times years ago. My agony and “panic attacks,” last April were bad enough to call my brother on the west coast and another acquaintance which unfortunately resulted in the “Mobile Crisis Unit” coming to my house, me trusting them to their “new and improved” facility for what I thought was going to be a therapeutic experience, but instead was a hellish experience in a filthy and disgusting place among a series of sociopathic “professionals,” that reduce human beings to something less than animals (a man(?) burst from his room, blood pouring from his forehead, pounding on walls, threatening nurses; no one reacted, but instead threatened me as I tried to avoid him; I’ve never seen anything like this, he was a crazed less than horror, his face a distorted, contorted, hellish countenance. They slapped on an additional 4 serious “diagnosis'” after my 3 additional days in another state facility, though underhandedly, my outgoing diagnosis, was “anxiety disorder, unspecified,” and to seek out “Naturtyme,” a holistic supplement store where I live; those additional diagnosis miraculously appeared on my former doctor’s Internet Website notes when I got out, when in fact, they were not there before. “HE SURVIVED THE HOSPITAL” was written distinctly in one of my “health” review meetings with him… I called everyone I could think of that third day, I had filled out a court order for release, they continually tried to give me Seroquel, but I knew that drug then. Dr. Gay, though I trusted initially, “The Seroquel” doctor, (who knew).

      My story on and off the “meds” would take quite of bit of space. I’m coping day to day as best I can, few friends and no family support. I’ve read again and again how human nature reveals itself when one is in such a helpless position. 3 decades of spellbindedness, a mind now free from the chemical haze and straight jacket, but a very damaged psyche and body and a Master of Science in Earth Science, personal trainer, skiing instructor career path not fulfilled, though my most rewarding position was as an adjunct professor of environmental geology at a local community college.
      These scoundrels in “medicine” never cease to amaze me, there are few if any “ethically inclined” people left in this field as far as I know, two of my last “medical” doctors have quit their respective practices and one wrote to me he’s moving to Hawaii back to his family and to serve veterans now. What is it with this world we inhabit, has our species gone completely mad? Do “doctors” now have the absolute power to discredit anyone that may disagree with their insane drugging and intimidation of their patients, or “labels” they bestow? Who is to stand in their way? I deleted several posts on a survivor site, that I was quite proud of, and completely truthful about, but was afraid of the consequences; I’m fearful now.

      I take no pride in this post, I would gladly forgo the past 30 or so years, had I found the “help” I needed, perhaps a mentor who saw my potential and took me under his wing… then have discovered more “holistic” means for my “mental health,” I would not have suffered so long and hard in a degraded and degrading “system,” that I tried so hard to work out of, unaware that the “legal” drugs I was taking were making it so difficult for me.

      • I can totally relate to all you were saying. I have been off Seroquel for almost 6 months and still having lots of trouble with anxiety and even being able to function. I keep checking back on sites like this to get validation for what I am going through. Honestly we need a massive support group for all the ones who will be coming off these drugs once the truth gets out. Something like AA where we help each other. I too lost 30 years of my life to bad medicine and I believe all the people being hurt by allopathic medicine is going to grow beyond belief in the coming years. I responded to you David because your post is fairly recent. How are you doing now, a month or so later? Hang in there. At 6 months out all I can say is that it does get better, but not in a linear way. It’s like 3 steps forward and 4 back, and then 5 steps forward and 1 step back, LOL, – agonizingly slow. Best of luck.

  2. Dear, dear Nancy. This is a powerful, detailed and thoughtful piece. I hope it reaches many who will be educated about the dangers of Seroquel. The medical profession needs to wake up and stop sleeping with big pharma. Thank you for sharing your painful and important story.

  3. Thanks for telling your story, and specifically how Seroquel was given to you for life situations, sleep problems, what an atrocity that you had to suffer that way from a marketing campaign and watered down information masking the antipsychotic as a simple sleep aid.

    Here’s an article of interest re: your eyesight problems that might be useful:

    AstraZeneca trialed Seroquel on beagle puppies: cataracts occurred at 4 times the human dose

    http://seroquellawsuitblog.blogspot.com/2011/08/astrazeneca-trialed-seroquel-on-beagle.html

    • I am horrified to read of the poor five year old you know about who has been given Seroquel. The poor little girl’s brain will be permanently damaged, I’m sure that it’s not been approved for children! I will NOT take the Seroquel that I have been told to take by 2 different doctors, despite them writing to my GP to tell him I am being *non-compliant* I am already on an antidepressant (an SNRI) which I have been told I will probably have to stay on for the rest of my life as the withdrawal is so severe. (Duloxetine.) I don’t want an antipsychotic on top of this! The thought of a five year old being given an antipsychotic will give me nightmares tonight.

  4. Great post.

    Coincidentally, I was cursed out by a patient today to whom I refused to prescribe Seroquel. He has been requesting it by name for the last 4 months, without any obvious symptoms to justify its use. It just helped him feel “mellow.”

    I don’t practice psychiatry that way. To him, however, that makes me a “f*cking b*stard.”

  5. great post.
    something that I needed. My son is 20y and he’s been on abilify for two months, then respiradone for two months and now on seroquel for two weeks. But I hate the side effects i see on him. Also, I don’t believe on medication of brain. It seems all lies and poison to our kids. I need help how you did it. I have the book how to withdraw from psychiatric meds. so, how do i stop the medication and start withdrawing.
    pls. help Nancy.

    • The following is a response from Nancy:

      “Dear Keren; I know it’s very frightening when one comes to the conclusion that they are being poisoned. The temptation is to stop these medications immediately. That is the most dangerous thing to do. No cold turkey. Some Positives in your son’s case are:

      1. He is young, and his nervous system is more resilient.
      2. He has not been on these medications, according to what you’ve written, for a great length of time.

      “The quickest reply to your question is that the safest way to wean off is one drug at a time under medical supervision. James Harper, the author of “How to Get Off of Psychiatric Drugs Safely,” and many other experts in psychotropic drug withdrawal are very clear on saying that the safest way to withdraw is to reduce the medication 10% at a time – however this does differ between people and must be done with caution. Things to watch for are disturbed sleep – sleep is the most important thing to maintain during the withdrawal process.

      “Lastly, if your son is taking an XR form (Extended Release), switching to a single dose should be done before beginning to wean. As you read in my account, I was refused medical supervision, and this happens to many people. Becoming an expert may be the only recourse.

      “My heart goes out to you and your son, and I will be thinking of you.”

      • “No cold turkey.”
        It is up to the individual consuming the drug I think.
        Slowly ripping a sticky band-aid off, or quickly,which is less painful? you advocate the slow pull off.

        I.M.O. simple logic: The longer the time on a drug, the more damage to the body. Get off the poison as quickly as possible.

        • Simple logic doesn’t always work. Unfortunately if someone comes off neuroleptics fast, they often have a “rebound” psychosis- also called a “supersensitivity” reaction. Getting off very slowly can help prevent this reaction. When someone comes off fast, rebounds, becomes psychotic- they are often told that this is proof that they are schizophrenic.

        • Withdrawing too quickly could cause nervous system damage, that’s effectively what withdrawal symptoms or “rebound psychosis” are.

          The rate of taper is what’s up to the individual. The nervous system needs stability. Going off the drug as slowly as the individual requires is the best way to minimize risk of destabilizing the nervous system.

          The stories you might hear of people who quit cold turkey and had no problems are stories of people who were very lucky.

          Don’t be a daredevil and go cold turkey no matter how much you hate your medication, you could be living with withdrawal syndrome for years.

          • I have been on Seroquel xr 200mg in the am, 3 200mgs at bedtime. My dr is weaning me off. He has taken away 1 200mg at night. He has stopped my vistaril 50mg x 4 daily without no weaning. I am having several withdrawal symptoms, and it’s only been a week. The newest and worse symptom is extreme eye pain in my right eye, which is already weakened due to previous eye infection.

    • Hi, There is a heap of evidence that young first episode `schizophrenia’ sufferers may do far better with NO meds in the long term. Look up `Open Dialogue’. This is a 20 year long program in Finland that has had & is having great results when the anti-psychotics if used at all for an acute psychotic episode, are very quickly withdrawn long before there’s any chance of becoming physically dependent. The results are spectacular and have been recognised, publicly by Tom Insell (NMIH?) a long time drug guru. I believe there are a few places in the US where Open Dialogue methods are being trialled. Also look up Martin Harrow’s 20 year study, and Lex Wunderink’s (Holland) 7+ year no drugs work. World Health found, long ago in Nigeria & India, that in well over half those with untreated psychoses become well and remain symptom free for the rest of their lives, living `normal’ lives. A small gem, apparently there are large numbers of people in the general population actually hear voices but are NEVER considered `sick’ & never have any kind of psych history. However sometimes some people find their voices distressing/frightening and may need some help over the hump. BUT IT IS NOT A LIFE SENTENCE! YOU DO NOT HAVE TO HAVE DRUGS FOR THE REST OF YOUR LIFE! YOU CAN GET BETTER & LIVE A LIFE. PLUS, without the drugs you will get to lead that good life for 25-20 years longer! Orgs: `Hearing Voices’ (for psychoses generally), the `Icarus Project’, `MindFreedom’ are just a few. These kinds of developments are very exciting – Bon Chance!

  6. Wow Nancy, I didn’t realize how much seroquel you had been prescribed. I was given seroquel for sleep. I went into accidental withdrawal a couple of times. This is far worse than any other withdrawal. Felt like I was being eaten alive by billions of insects. I have the eye problems you describe. I read that study on the beagles, which is one reason I decided to taper. I began to taper from 400 mg in 2008, stopped for good December 2011. There was a lawsuit against Astra Zeneca for diabetes. People should sue based on the other maiming effects, too.

  7. HI, Nancy
    thanks for your reply. You right, he’ still young. but with young kids, 20y old, they are hard to follow the routine for meds. Also, as the side effect kicks they want to stop right away. my son is not taking XR. it’s a single dose of 100mg of seroquel at night.we started 50mg for a week. so, this is second week with 100mg. I live in california, san francisco area. You mention progressive medical center were you had good treatment. Is there any facility around here where i can take him and detox or help him to withdraw as in house.
    cause i don’t want keep him long with this meds for long.

    thanks again.

  8. keren: If your son is just on the second week of 100 mg, you can probably just step back down to 50mg for a week and then step off without needing to worry too much about tapering it extra slow. Less than a month on and withdrawal shouldn’t be a huge issue with a quick taper.

    The rampantly spreading use of AAPs for everything from insomnia to depression is quite possibly shaping up to be an even bigger disaster than the rampant use of benzos for longterm treatment.

    IMHO there is really only one responsible use of this class of obviously toxic drugs: emergency use during a short-term crisis in order to stabilize. Longterm use for things like sleep disorders is borderline criminal.

  9. ok. he is been less than a month on seroquel. but he has been on abilify for two months,march and april of 2012. respirodol for another two months of oct. and november of 2011. also, he took flouphenzine for one month of feb, 2012. would these prior meds affect the withdrawal? have you heard of any detox of this meds. there is one in my area but i’m not sure if they are beneficial.

  10. hi, Nancy.
    my son’s main problem now is hullucination. hearing voices. his psch.doc told us to start 50mg last week to follow with 100mg this week and 150mg next week and 200mg the fourth week. I never heard anything like this before. week difference for each 50mg.

    • I have had to get used to the “hearing voices”.

      Whitaker writes that the human brain changes in response to the psychiatric drugs.
      “The antipsychotics block 70-90 percent of the dopamine receptors in the brain. In (response) return, the brain sprouts about 50 percent extra dopamine receptors. It tries to (compensate) become extra sensitive. So in essence you’ve created an imbalance in the dopamine system in the brain. You (now) have too many dopamine receptors.”

      The change in physical brain structure , the learned behavioral response (brain plasticity) might be permanent.
      What you want in your son is functionality, the reason for functionality in a human being doesn’t come from a mindless medication/drug/chemical.

    • Karen: I have walked in your shoes! I sleep on the floor many nights while our son experienced his spiritual emergencies. Went to many pdocs, took many tests, and tried many drugs. Not quick cure out there.

      First off take several deep breaths and realize this isn’t going to be healed overnight, but healing will happen. Time heals not the drugs. He may not follow the path that you want but let him follow his path and be very very patient and supportive with him. Listen and he will tell you things that might help. Educate yourself and keep a journal. He may need a drug short-term to stabilize if he has lost total control. Paranoia and hallucinations are rooted in us all so don’t let that be a reason to medicate. Long term you need to work on sleep, meditation and mindfulness to start the healing process.

      Slowly taper off all the drugs, even if they have been taken for years and the pdoc thinks it is harmless. Example being ADHD meds etc.. Unless he needs a drug to survive then review its necessity.

      If he is in college he may need to take time off. If he has a stressful job he may have to quit it. In the short term release the pressure on him. Don’t let him isolate himself from family and friends. No yelling or screaming or lecturing. Relax and he will relax. Laugh and he will laugh. Love and he will love and heal.

      This will take time to heal. It may take years. If you try to medicate it away it may take a lifetime.

      God Bless

  11. Hi, markps2
    when you say,the change in physical brain structure , the learned behavioral response (brain plasticity) might be permanent. do you mean his hullucination is permanente or goes with time. I’m hoping it to stop after his withdrawal from this meds. what is the solution for this kind of people. we are confused and don’t know what to do. I are starting to go back to his old 50mg for two weeks and then 10% reduction every two weeks.

    thanks for your response.

    • People lean to cope with hearing voices in all sorts of ways that do not need medication. Some just lean to live with the experience, some find counselling and therapy useful, there are self help groups (you can look up the hearing voices network), some talk things over with friends.

      I know someone who decided to feel compassion for his voices and that helped a lot.

      People draw, write about them, talk them over with people, all of which helps people to understand them and feel less frightened of them and in many cases this is much more effective than drugs.

      I know someone else who with counselling and the support of good friends got a life together. He still hears voices but they are a lot less critical than they used to be. He hardly talked about the voices in the counselling he had, he talked more about the stresses that had driven him mad.

      Many people find they still have voices even when they recover, but now they mainly hear nice, encouraging voices.

      The voices themselves are not the problem, it is what they say and how the person feels about them. Really your son needs some help sorting out his problems and some friendly help in getting his life together. If he gets that then the voices will not be so much of a problem. This can take some time, but it would be much more effective than drugs and it is probably not what your local services are offering, because in most places, all over the world, they don’t.

    • John Hoggett 4:27 PM wrote a better reply than I ever could.
      I can only give you my opinion.
      Visual hallucination I have no experience with, so can not comment on.
      Audio hallucination is permanent in that intelligence in a human being requires “hearing voices”. Normal people do not call the voices they hear “voices”.

      There is a country song
      Chris Young – I Hear Voices All the Time
      You could say I’m a little bit crazy
      You could call me insane
      Walkin’ ’round with all these whispers
      Runnin’ ’round here in my brain
      I just can’t help but hear ’em
      Man, I can’t avoid it

      I hear voices
      I hear voices like
      My dad sayin’ work that job
      But don’t work your life away
      Mama tellin’ me to drop some cash
      In the offering plate on Sunday
      And granddad sayin’ you can have a few
      But don’t ever cross that line
      Yeah I hear voices all the time

      If you have been given “schizophrenia” by a doctor, and have a bad idea, a voice of violence, the idea gets identified as a voice of schizophrenia, but it’s just an idea.

      Imagine you are in a chess game, to play well you must imagine what you would do in your opponents position.
      You battle against yourself in imagining.
      This imagining is intelligence, without intelligence we would not “hear” voices of imagination.

      Psychiatry tricks people into fearing hearing voices of imagination. People will hear voices of imagination as long as they have a working brain (frontal cortex).

      Normal people have a “voice” of knowing when it is too hot and too cold. Schizophrenics die in heat waves and in cold winter for not knowing (or too drugged) the temperature.
      Normal people have voices of anger, but don’t call them voices. They can go to jail if they let the anger be in control.
      Loss of action is what psychiatry typically wants from their patient. Psychiatry calls a lack of behaviour a successful treatment, as mostly all behaviour from a mentally ill person is judged “sick”.

      IMO A young male adult is supposed to leave home at the age of 18-24. They can no longer be a dependent child.

      This separation occurs in the natural animal world from “Mother Nature”, and humans are part animal. In human males testosterone production peaks at the age of 18.

      The adult child doesn’t want to leave his loving parent(s)( but if healthy, wants independence), and the parents fearing for the safety of their child , don’t want their child to leave either.
      There is an inner battle in both the adult child and parent.

      You can pay a doctor to call the adult-child sick, maybe they are sick, but drugs aren’t going to solve anything. The psychiatric drugs will stop conflict, but conflict is necessary to leave home and become adult.

  12. Dear Keren,

    You should start to do some research – hard, ongoing research on your own. Here are some of the things I suggest you get really get absorbed in finding out –

    How often do people with schizophrenia recover on their own without medications? I have heard that more than 80% of people can recover from schizophrenia without medical intervention, and just given some time. I am not certain of that number though, so I suggest researching it. I have also heard that people are much more likely to spontaneously recover if they do NOT use medications. Again, I suggest you really research the science though.

    Start to research and explore other ways to help your son manage his life and control his difficult symptoms.

    Here is the difficult news for you. 99% of current “wisdom” says that your son must be on these medications and most likely for the rest of his life. This means you will have an uphill battle when talking with professionals, but really, you need professionals and their additional knowledge to guide you. This means you need intelligence and knowledge. Intelligence to do the research in depth on your own and the knowledge that comes from the research. You also need a lot of strength – this is going to be hard work. In fact, I suspect you might have to get to a place where you might know more than a lot of doctors.

    I would start with google, read everything you can find on how to handle schizophrenia without medications. When you have tapped out google, I would make a list of current scientists and activists who has written about the subject and go to the library. You might also go to a University library and start to read some of the scientific papers the MD’s read. If you don’t understand the technical writing, bring a laptop to look up words.

    All this information will help you find, interview and choose doctors. There won’t be any magical helpers in asking on a large forum like this. And really, you don’t know any of us from adam, taking advice on a board like this on life changing decisions like this is not safe.

    Good luck.

    Malene

  13. Thanks so much for your story. I have been taking Seroquel for most of the last 12 years in doses ranging from 400mg to 1200mg. I was given this horrible medication for Bipolar I. I bought into the idea that I would need to be medicated for life. It is only in the last year or so that I realize what a bunch of BS that is, and how badly these meds have damaged my body. I am currently working down from 800mg, and am currently at 400mg. So far, the withdrawal hasn’t really been that bad. I’ve been going 50mg every 2 weeks or so.

    I worry about what happens when I take my last dose of Seroquel. I worry about the “real” withdrawal. But I worry far more about shortening my life because of this stuff.

    Thanks again for your story.

    • If I might suggest, try reductions of 25mg every 2 weeks. The idea is to have little or no withdrawal reaction.

      The very gradual reduction may enable your nervous system to adapt to the decreases as you make them.

      If you get withdrawal symptoms, stop for a while until you stabilize, then slow down the tapering and make smaller decrements.

      Hopefully, when you do this, you will have no withdrawal after you are entirely off the med because your nervous system has already made the adaptation.

      Very gradual tapering is far safer than counting on supplements to be helpful, because often they don’t do much.

  14. Believe me Olanzapine and Risperidone are as bad as Seroquel: it did my son untold physical and psychological harm and he was on them only for 6 weeks each. he came off them in secret and no doctor offered to help. He still gets twiching muscles on and off, three years after coming off them.

  15. I am so sorry that you had to go through what you have. You are such a strong person to have survived and be willing to share your story. I can’t tell you how happy I am to have sort of dropped in on this site! Was lucky enough to find it as a link on my LinkedIn page.

    I’ve been on Seroquel for the past 7 years….part of that time receiving it through the Astra Zeneca AZ&Me program which enabled me to continue taking it without having to pay for it….my health plan doesn’t cover name-brand drugs and substitutes for seroquel didn’t help in the same way. Like you, I was weaned off the brand-name drug suddenly and involuntarily and my doctor prescribed the “generic” for it Quietapine. Since I’d already experienced several weeks of withdrawal, though I am prescribed 200mg, I’ve been taking only half a pill (down to 100mg) and will soon cut that in half (to 50mg) and take for another month or so before stopping it altogether. I have never liked the side-effects of the involuntary jerking and it makes my nights very difficult because it exacerbates my RLS (restless leg syndrome) that I’ve have since a child. With the seroquel, I have to take an additional medication Ropinerole that helps with the leg pain and jerking. Even on the reduced dose of quietapine (lovely name, isn’t it…makes it sound so benign) I still have a lot of trouble with RLS and my research leads me to believe that even when I stop the quietapine completely, the condition is probably permanent. Your eye condition frightens me, because I’ve just been blaming my failing eyesight on my age. Still, even getting off one of the psychiatric drugs will make me feel better! I will begin working my way off the rest of my (molotov) cocktail–40mg fluoxitine (for Prozac), 300mg buproprion XL (for Wellbutrin), and 300mg lamotragine (for Lamectal). Needless to say, I don’t have the full cooperation of my doctor, but all have been prescribed for my bi-polar II disorder. I don’t question the diagnosis, only the way I choose to control it. I’m 65 and I lose brain cells at a growing rate with each passing day….can’t afford to take anything that quells my natural responses! I’ve studied for the past 4 years to complete a degree in Psychology but have become increasingly disenchanted with the current trend of prescribing drugs rather than trying to find and address the root of the problem. I’m going to begin cutting down on the lamotrigine first because it’s something I take as 1 and 1/2 pill a day. The fluoxitine is in capsules so may be a bit harder to divide, but not impossible. The buproprion XL is an issue I’ll have to fight out with my doctor. I don’t plan to discuss it with her until I’ve stopped taking all of the others. If you have any suggestions that might make this self-prescribed plan work better, I’d really appreciate hearing about them. I should note here that I am very familiar with all these drugs and the side effects, as well as what I’ll feel in withdrawal. To me it’s worth it.

    • Yeah, that RLS complication can be hell. I got it from Abilify as well as Seroquel until one night I had to walk around my small house for 5 hours straight. The meds I took for RLS had no effect at all. I could only be stationary for 40 seconds at a time. Once, in hospital, I walked, wheeling a drip pole, from 11.30 pm to 7.30 am. Because I was a `psych’ patient not one nurse spoke to me, not even to answer when I told them I needed the RLS drug. And they wonder why I’m an activist?

  16. Nancy, it’s good to hear you are healing from this terrible ordeal.

    What we see over and over in virtual communities that offer peer support for psychiatric drug withdrawal is that too-fast withdrawal from any of the drugs causes hypersensitivities of various types.

    For some people, it hits the gut and immune system. Many become hypersensitive to light (although yours seems extreme), or sound, or even smells.

    Relentless sleeplessness and that abnormal alerting you described is very common.

    What psychiatric drug withdrawal has in common across all drugs is that it causes nervous system dysregulation, producing a wide range of mysterious, debilitating symptoms that no medical test can detect.

    The autonomic dysregulation allows the alerting system to rule the body. It wants to stay on high alert 24/7. If you take medications to calm it down, it will react paradoxically.

    There are only a few doctors in the world who recognize the severity and persistence of severe psychiatric drug withdrawal syndromes; David Healy in the UK is one of them.

    Withdrawal-induced hypersensitivities vary from person to person. We have seen bad reactions to each of the supplements in The Road Back program and other supplement programs.

    What we tell people on SurvivingAntidepressants.org, which includes people withdrawing from every type of psychiatric drug, is to take supplements one at a time, try a fraction of a dose first to see how it affects you, and reduce dosage or stop taking it if you get a bad reaction.

    We do not recommend mixed supplements at all; if you get a bad reaction, you won’t know which ingredient did you in. (We do not recommend any supplement programs; to some degree they are all overhyped and overpriced.)

    Overall, people with withdrawal symptoms seem to do best with fish oil (and vitamin E to help it work), magnesium (calming and relaxing, melatonin (to trigger sleep), and reducing stimulation (such as turning off lights at nightfall). (Even so, some people are sensitive to fish oil and magnesium; their nervous systems need to stabilize a while before they can take them.)

    The B vitamins are risky. For some, vitamin B12 is very helpful, others have a strong adverse reaction. Generally, vitamin B6 tends to be too activating.

    Restricted non-irritating diets (gluten-free, SCD, paleo) seem to help some people quite a lot.

    Supplements might soften symptoms but time is the great healer. Learning patience and how to manage symptoms with techniques such as meditation are challenges for us all.

    There are ongoing discussions about symptoms and what helps at http://tinyurl.com/3hq949z , and tapering tips at http://tinyurl.com/42ewlrl

    We are also collecting case histories of psychiatric drug withdrawal syndrome in the Introductions section http://tinyurl.com/3o4k3j5

    I hope this helps answer some of your questions about what happened to you, although the damage has, most regrettably, been done.

    Good healing to you.

  17. I was on Seroquel for 6 to 8 weeks. In this time period, my cholesterol increased from total of 188 to 212; I gained more than a pound a week; my resting pulse went from 62 to in the 80s.
    So I got off.

    I was prescribed this medication as in-patient due to mental breakdown. At no time was I warned about any side effects. I would like to see people start suing doctors concerning informed consent, so that doctors would be forced to tell patients, in-person (not through a tiny print insert with the medication) not only what the side effects are, but what the efficacy rate is, and whether they are prescribing on or off label.

    Thank you for telling the truth.

  18. Hi Nancy, thank you for sharing your horror story. I have no doubt that both the adverse effects and the withdrawal effects of virtually all psychiatric drugs is grossly underestimated by the medical profession. In my experience, working with people in my recovery-oriented mental health service, when doctors do decide to reduce psychiatric meds, they often reduce too quickly, because they underestimate (or have a blind spot?) regarding the need for withdrawal of these drugs very slowing. The blind spot is, in my opinion, due to the reality that, if a drug is acknowledged to cause withdrawal problems, then that strongly suggests that that substance has in fact caused a physical dependancy, and doctors generally are not terribly enthusiastic about acknowledging that their substances cause physical dependance. I hope your story and your experience helps a lot of people. I hope that the doctors who read this take off the blinkers created by their training and their familiarity with the values and priorities of their chosen profession, so that they can take the contents of Nancy’s blog fully on board.

  19. I am currently on Olanzapine/Zyprexa 5mg but I noticed it made me gain weight so I told psychiatrist I want to get off of it. She prescribed me Seroquel 50mg and after reading story here it made me contemplate whether to start dosage or not to start.

    I am HSP (hyper sensitive person) and deem the culprit of all my fluctuating bi-polar behavior and panic attacks is based on my character. Something I was born with and something that I am not sure can be changed with medications. Maybe I need to work on myself, visit support groups and read certain self-help books…

  20. I have run the gamut of psychotropics – Lamictal, Remeron, Prozac, Effexor, Seroquel, Lexapro, Paxil… These are just the names I recall from the past 10-15 years of treatment. During that time, I’ve questioned efficacy, dealt with a number of side effects, and heard the voices of folks telling me that psychiatry was inherently evil (I lived in Hollywood, near the “Commission on Human Rights” “Psychiatry Kills” campaign. I’ve heard both sides, and also have some takeaways.

    Not everyone should be on psychotropics. Seroquel isn’t Tylenol PM, it’s a mood stabilizer, and can be effective for those of us with wild mood swings, or paired with other medications to combat clinical depression. There are side effects, and you should seriously consider these and the potential withdrawal symptoms (like the Lexpro “brain zaps”) before taking meds.

    The side effect I did not experience? Suicide. And that is exactly where I had been headed.

    It is dangerous to take meds that may be prescribed for dubious reasons, but it is equally if not more dangerous to recommend abandoning medication based on the writings of members of the church of Scientology (all over this board, the foundation of “The Road Back”), who vehemently rally against all things psychiatric. Supplements can have equally awful side effects, and lack the oversight of a licensed physician. If you don’t trust your doctor, get a new one. But don’t buy into CCHR’s psychiatry kills BS , when it is perpetuated by yet another organization (Scientology) with ulterior motives (namely selling you expensive “auditing sessions”, supplements, books, religious services).

    Depression and other psychiatric conditions can be frightening and extremely lonely. Sometimes a community can help overcome these feelings. But just as we are scrutinizing medications, we need to scrutinize the communities, as well. What is the endgame? If it involves dollar signs, it might behoove you to keep looking.

    My 2 cents as a depression survivor that has seen the damage of Scientology, anti-psychiatry, narconon, and CCHR first hand, including losing friends that were convinced to stop treatment (and later committed suicide). Please – include your doctor (or a trusted doctor) in your decisions. It may save your life.

    • I am not a Scientologist. I am not a Catholic. I am not a Flat Earther, or a Creationist. I am not a `Holy Roller’ or a Hindu, a Jew or a Muslim. I don’t care what odd beliefs anyone might have but I do respect good solid research when I see it. And, though many people demonise Scientologists they have done their homework, they have dug out the evidence, they have sorted through the dross, the lies and the downright criminal behaviour of large sections of the Psychiatric Industry and they are RIGHT. When our local legislators somehow got steamrollered into removing ALL age restrictions for the use of ECT for children, pregnant women & the very old, it was the CCHR who alerted us. So credit where credit is due. Religious differences are irrelevant in our fight for justice, human rights, and understanding.

  21. I don’t know how I missed this article about Seroquel?? It was the last neuroleptic I took and I got Seroquel Induced Acute Pancreatitis which had me hospitalized for 2 months. After I left the hospital a neurologist told me I had the worst Akathisia he’d ever seen and I innocently asked what was Akathisia?? It was inner restlessness hell psych drugs cause. My psychiatrist told me to just stop the Seroquel as I wouldn’t have any problem doing that and I went into horrible withdrawal.

    The side effects, nasty symptoms, from these drugs were off the chart and every time I told my psychiatric he thought I was crazier so he either increased or change them like a merry go round. It was a mess, a nightmare and so many times I thought what had I done to deserve this. I tapered off every drug but here I am years later completely psychiatric drug free and have my life back.I was later told by other psychiatrists, psychologists and physicians I’d never been mentally ill in the first place.

    I still have eye damage and when I read about yours I went OMG. Not one of my doctors understood why my vision was blurry and it still is today.

  22. Hi Nancy,
    I had a question if I may. I have been on Seroquel XR for around 9 months. After ceasing I went through a yuk withdrawal. It’s been about 7 or 8 weeks now and I’m still wondering if ill ever sleep well again. However the big question for me is about insulin resistance. I have been following a low carb diet and usually ( before Seroquel) the weight comes off easily and I don’t struggle to maintain weight. Like everyone I gained weight on Seroquel and after stopping lost around 2 kilos but it sneaks back on again. My doctor said it does muck your insulin levels about but will my levels ever normalise or am I like this forever now?
    Claire

    • I’m not you, but I gained 25 kg while on Seroquel and Abilify and while withdrawing from them. I guess I gained some weight after I had stopped them too, though it may have been because of bad eating habits I had developed. Then I lost those 25 kg in a year after I started to each low carb, real healthier food diet and increased exercise. Maybe your body needs to adjust again to this new situation and it takes some time.

      Here’s article “Why Zyprexa (And Other Atypical Antipsychotics) Make You Fat” which points to a study where Zyprexa makes body use fat instead of sugar travelling in your body, possible leading to insulin resistance, etc. If that’s true with Seroqual, then it may be one good reason to go low sugar/carb in diet if you’re taking or withdrawing from these drugs.

      I’m sure you’ll get your weight down eventually!

    • Claire,
      My two cents. It sounds like it may be a little early to determine if your weight will come off. My experience after tapering off a particular antidepressant was that the weight stuck even if I went back on my previous diet that always produced results. After a few years went by, I discovered the word “metabolic syndrome” but I also found Dr. Simeon’s book, Pounds and Inches, http://hcgdietinfo.com/Dr-ATW-Simeons-Pounds-and-Inches.htm It’s a good read, he explains the problem well, and he doesn’t talk about psychiatric drugs (the book was written around 1970). The diet is called HCG. It’s an expensive boot camp that involves a semi starvation diet and Human Chorionic Gonadotropin, a hormone naturally produced by the placenta in pregnant women that almost completely controls the metabolic function through the hypothalamus throughout the pregnancy. It worked for me. I was on the diet for about 15 days and lost the eight kilos that I had put on with the antidepressant. This weight loss was permanent, probably because I am careful about my weight on a daily basis. But, I could not lose the weight taking the normal precautions.

  23. I have been on Seroquel for about 10 years or more. I just recently lost my healthcare and cannot afford to pay cash for Seroquel as it is very expensive. So I went cold turkey off it. I have been experiencing stomach pain, bloating, headaches, nausea, eye pain, light sensitivity profuse sweating and that’s all I can think of at the moment. Oh, yes and sleep well I haven’t slept more than about 1 hour at a time. I fall asleep then lay awake, fall asleep lay awake. Then during the day I’m so tired I can hardly function. I just had an eye exam about 3 years ago and it was a comprehensive exam and luckily I do not seem to have any eye damage, as of 3 years ago. I’m at my wits end.

    • Lynn, so sorry to hear this. Insomnia is a living (and waking) nightmare. After years of complaining to my psychiatrist a couple of years ago about the cognitive and emotional side effects (apart from the metabolic ones) of Seroquel (I’d been on 6+ years) he finally agreed to make one change: switch me to Geodon (weaning down from 300mg would, in his view of course, be suicidal). Geodon, he advised, would be less “sedating,” and even had some “stimulative effects” in some people. The tailspin that Geodon set me off on emotionally almost destroyed my livelihood and my family — insomnia, depression, panic attacks, anxiety. I remember not being able to be still and having to walk briskly around the block in order not to feel as though I would explode. The anxiety triggered every neurosis that had ever crawled into the recesses of my brain (of which there were very many). I alienated and fled from friends, co-workers, my wife, family members. I was told that benzodiazepines would take off the edge and that, although it (Atavan) is a controlled substance that mainstream practitioners caution against taking long term, I was advised that some people do well on them indefinitely. Of course, I became an addict, and the panic attacks accelerated and deepened. I could barely function at work. The direction I was headed on Geodon was catastrophe, and so I went back on Seroquel (depression followed [call it what you will]) and, two years later, I decided that I could not longer tolerate the effects. I fired my psychiatrist and found a new one willing to wean me off. I am 1/3 down and imminently will be 1/2 down. So far, as I’ve reported on this site several times, the result has been remarkably positive. So far, I have only experienced a reduction in side effects. But I went down 50 mg only every couple of months. The feeling of being a “reverse junkie” is terribly difficult — the more I wean off and come alive again, the more I want more of it out of me, desperately. But I’ve been on Seroquel for some 9 years (with the exception of about about 3 months on Geodon), and so far weaning has been all positive. I am mindful, however, based on what many of you have reported and what I’ve read and heard elsewhere, that once I start getting close to the bottom — slowly or not — things may get worse. I wonder what steps I should take to place myself in an optimal position to make the transition and maximize healing. Lynn, if for whatever reason you and the people you are relying on decide that you need to go back on a neuroleptic, please know that a (very) slow taper might result in an entirely different experience for you. Best of luck and be well.

  24. Nancy, you have given me a lot of helpful information. I’m on 800 mgs of seroquil for sleep. N I’ve been on it for like maybe 7 years. The dosage just kept getting higher along with my tolerance. My Dr. seemed to have the same attitude as yours so I been trying to ween myself off on my own. I sleep way too much and it interferes with my life. I thought because it is used to treat schizophrenia, that when I came off, I’d have schizophrenic symptoms. Seroquel is still so new, I don’t think they know much about it, and the generic just came out not very long ago, so people like me who been on it for a long time n on high dose, don’t know what I’m in for. I didn’t know about uncontrollable movements n issues with your cornea. I’m scared. I’m 28 and hope to have kids soon, I’m sorry about what you went through.

    Thanks,
    Danielle

  25. I took 300mg XR for 3 years. At first I thought it was a God send. I was already taking lamictal and clonazepam for my bipolar, generalized anxiety disorder, and PSTD but all too often I found myself stopped dead in my tracks in fits of terror. I cannot tolerate SSRI meds because they only pushed my manic episodes and increased anxiety. During a frightening and out of control manic episode I went and spent some time in the hospital. It was there I was prescribed my miracle drug. I was calm as a newborn pup and saw the world from a normal person’s perspective (whatever that is). For the first few months I quit snapping at home and was super chill at work.
    Then:
    1. I could not get out of bed in the morning. When I did I felt hungover. I had fallen asleep at work a few times
    while standing up. Energy became my life saver many times.
    2. I gained 12+ lbs. and I have intense cravings for sugar.
    I ate everything in sight.
    3. My memory started to slip. It started out as simple as forgetting I
    I put someone on hold to forgetting my patients my patients
    names. (I am a pharm tech)
    4. We switched to a new system and I started to notice my vision
    was becoming impaired. I blamed the new system.
    5. I started to snore at unbearable levels.
    6. I found my concentration strained and difficulty with
    with word finding…and then came the stuttering.
    brief at first….but not for long…(I still do)
    7. I could go on and on and on and on….

    I started trying to convince myself that despite the horrific side effects I was better on the med than not.
    It took me 6 months to convince myself that I was tired of the weight gain and what I was seeing as impairing
    my performance at work. I talked to my Doc and helped me taper off.
    That was 5 months ago.

    I now suffer from intense memory loss. I stutter under stress. I am looking for a new job because
    my performance at work is actually worse. I have uncontrollable hand movements and my mouth
    contorts into an awful grimace. My vision is shot.
    I went from a highly functional person with an awesome memory and capable of working
    beyond my employers expectations to a confused and bitter
    victim of the medication that was NOT a Godsend, but a dangerous lie.

    I have other problems now as well. Bizarre bouts of nausea and facial
    burning that leave me completely exhausted. Episodes of double vision and confusion
    And loss of balance all at the same time. MRI showed nothing so of course it was
    just another panic attack-according to the experts.

    All I have to say is I live in fear of driving or being at work and
    to leave because I am sick because of what I believe is now an infliction.
    Without a prognosis.

    P.S. the 40 lbs. I dropped is awesome….sure

    • anned,

      Since you mentioned snoring heavily, you might want to get tested for sleep apnea. I was diagnosed with that after being on psych meds for years.

      I think I have had the disorder long before I ever started taking the meds. But I feel being on them greatly worsened my severity.

      I am sorry for all the problems you have experienced on Seroquel. And I so relate to your statement about being better on meds in spite of the side effects. It took me quite awhile to realize how wrong I was.

  26. Hello, I’m new to this forum but from what I have read I think these posts are very helpful.
    I have been of Seroquel XR for approx. 5 weeks, I am still on Wellbutrin xl and Apo-Lamotrigine. I went off Seroquel XR cold turkey (from 200mg) I was taking it for depression and bipolar 1. I cannot believe how terrible I feel! The worst symptom is the nausea, I have waves of nausea at various times during the day. Is there any suggestions as to how I can alleviate this symptom? I have other withdrawal symptoms which I can handle but this nausea is killing me. I am going on a cruise in 2 weeks and I am desperately need to feel better! Also does anyone know how long this lasts?

  27. Nancy, thank you for replying, I appreciate your comments. I can’t believe you mentioned “it’s a physical disease. Like Diabetes…” My psychiatrist used the same analogy. I need to say, my psychiatrist told me to stop taking the Seroquel, I explained to her that I was having difficulty differentiating real life from my dreams and I felt like a zombie. She told me to stop taking the Seroquel XR and gave me a prescription for Seroquel 100mg to take only if needed at bedtime. Being fairly new (and naive) to all of this, I did not question her. Big Mistake! I also received a call from my case coordinator that my doctor wants me to cut my dosage of Lamotrigine in half after explaining my withdrawal symptoms. She must be nut’s or maybe she doesn’t give a damn about me, either way I am not doing that. I will wait until I get back from my cruise and then slowly wean myself down to the new dosage. I starting taking organic ginger for the nausea and vitamin supplements along with slowly getting back to exercising ( did I mention I went from 132 lbs to 189 lbs within 5 months of taking Seroquel!). Hopefully this will help. I wish I was not going on the cruise until later when I feel better, but this trip was planned 2 months before I went cold turkey and I am meeting up with family. Hopefully my withdrawal symptoms will not get any worse.
    I am so glad I found this forum, I understand you are not a medical professional, but often the best advice in any situation comes from people who have been down that road before. It’s nice to share these issues with people who “get it”
    I am fortunate in that the Mental Health Centre where I go for treatment, has a goal that I will eventually come off the med’s and be able to manage through meditation and cognitive behavioral therapy….I’m not sure I have much confidence in this theory but at least the goal is to drug free. Now if I could only get my psychiatrist to get on the same page.
    Thank you again for your advice and concern and you take care as well. 🙂

  28. Hi everyone,
    my heart goes out to you all.
    My brief story.
    had a breakdown 2006
    diagnosis major depression
    Anti depressants cant remember what i was started on.
    Seraquell 100mg and diazapam(valium) for anxiety.
    Several S attempts
    Over 20 eCT ( electro convulsive therapy)
    No help
    So diagnosed
    Non responsive Major Depression….
    Meds for rest of Life.
    Eventually went on
    Loxalate 20 mg
    serequell 100mg a night.
    And left to fend for myself.
    Lost My business,lost investment properties
    lost my “life”
    Anyhow about 3 mths ago I descided to go cold turkey
    off the anti depressant Loxalate
    Suffered with all sorts of withdrawals but survived.
    feel no different being off them.
    One of the major symptoms of My depression is absolute exhaustion.
    feeling tired all the time,no energy you all know what im talking about im sure.
    Anyhow My daughter rang me other day
    Shes been diagnosed with
    Hyrothyroidism.
    Sympton
    Exhaustion
    Depression
    and many other things that where all too familiar to me.
    So onto the internet.
    Looked up hydrothyroidism..
    Found this site
    http://hypothyroidmom.com.

    The bottomline is this
    when you are diagnosed with depression most phycs will send you for a blood test to check your thyroid levels.
    Now the standard test does NOT reveall everything you need to know.
    the above site will inform you what to ask for.

    I have not got my results back for the extra blood test.
    But if i find out i have hydrothyroidism and I have been subjected to all the med,ect,excetra I will not be a happy camper.
    In fact I will be persueing to the nth degree what maybe my options regarding action against these so called drs,phyc,mental health hospitals ive been in for the damage they have done to me.

    Anyhow back onto seraquell
    because of my success in coming off my antiD’s cold turkey im thinking of doing the same with serequell.

    Any thoughts???
    trev
    PS…Get your Thyroid tests done!!!

    • I agree about the thyroid. I’m glad you mentioned it. I’ve actually been researching it myself for hours and just read your comment. SO important, the thyroid. Oh, and dehydration!! Need consistent daily water intake for good health. I collapse A LOT. The last time I collapsed, I couldn’t get up off the floor for about 2 minutes.

      DEFINITELY need to RAISE AWARENESS about thyroid and dehydration.

      Thank you, Trev. Good will to you & yours.

      ~ mjk

  29. That’s a terrible story. Thanks for posting it. I was given it for anxiety and sleep issues during a difficult time in my life. I took it for about two years. I tapered off slowly from 200mg (XR). 6 months later I usually get about 3 hours sleep a night but like you I sometimes get none and sometimes less than one. As a result I am more depressed now than I ever have been. It is ruining my life. My anxiety is worse than ever. I feel angry all the time and I can’t concentrate. Thanks again for sharing.

  30. Just a quick update on my situation.
    firstly,
    I mentioned I was getting my thyroid tests done.
    Went to Dr to get authorization for blood tests
    he laughed at me and said thats a womens problem.
    my reply was I dont care and no its not.

    i get results tomorrow.

    I had mentioned before of going of seraquell cold turkey and mainly due to Dana’s plea not to in any circumstances I didnt.
    However i run out of them and due to not enough money i had to go without for 2 nights.
    Shear HELL was the result.
    I ended up going asking to see My chemist and telling him
    what my situation was, i took the empty box which was dispensed by Him previously with me)
    He immediately give me a small sample to get me through…this ammount was deducted from the next script I took him.

    Will continue to update.

    I do have other information to share from my extensive
    online search/s about Mental Illness and my journey.
    i actually started a blog back in 09 which I documented what was happening to me at the time.
    I had forgotten about it until 3 days ago.
    What I read about myself in my own words rocked me.

    The drugs,the ECT,the threats of arrest and involuntary detainment if I didnt agree to be admitted to a mental institution.
    I had forgotten all about.
    We are, I believe have become survivors of some pretty ordinary
    diagnosis and suggested “cures” for what may basically be other
    under lying medical issues or as has been mentioned “Just Life”

    One thing everyone does need to understand….
    There Is NO MEDICAL Check that can be made to say you have a Mental Illness…NONE AT ALL.
    There is not a test that can be performed to determine a chemical imbalance in your brain…that will tell Drs you have a mental Illness….NONE!!!
    hang in there everyone
    trev

  31. I just want everyone to read this book,You can get it on Amazon.
    It is after reading this book that I am determined to get of anti depressants which i have succeeded at and finally
    Seroquel.
    Brain-Disabling Treatments in Psychiatry Drugs, Electroshock, and the Psychopharmaceutical Complex Second Edition Peter R. Breggin, MD

    Short Quote from book

    In essence, the brain-disabling concept as a whole states that all psychiatric treatments—drugs, electroshock, and lobotomy—work by disrupting the function of the brain and mind, creating effects that are then interpreted (or misinterpreted) as improvements.
    Medication spellbinding is a brain-disabling effect that renders individuals unable to perceive the degree of their drug-induced impairment; causes individuals not to attribute any change in themselves to an adverse drug effect; often makes individuals believe that they are doing better than ever, when they are doing worse; and in the extreme, drives them into compulsive activities that harm themselves and others.

    Breggin, Peter R. (2010-09-27). Brain-Disabling Treatments in Psychiatry (pp. 1-2). Springer Publishing. Kindle Edition.

  32. We are in need of some advice. A person I know has recently been prescribed Seroquel equivalent and Lithium. The person was a cheerful, happy person all their life. They got scared while away from home at college. They ended up being hospitalized. It has been less than a month. We have followed the protocol as prescribed, but we know this person is not themselves. More importantly, they know that they are not them self. Is there a doctor that looks at the whole picture? I feel like the medical facility placates us and their goal is just to get the person on lifetime meds. I just don’t feel there is support from a medical doctor to back up what I feel. I wonder what the effects of removing the drugs would be if the person has been on the drugs less than a month.

  33. Nancy thank you so so much for posting this. My wife is bipolar and has been on seroquel 400mg xr for several years now. It was prescribed after her depakote quit working. i liked a lot more about the depakote than I like about seroquel but the seroquel keeps her more balanced. Anyway due to a new job and new insurance now we can’t afford her meds so she has had to go cold turkey. She is miserable and having a hard time going to work. Her biggest complaint right now is the stomach issues. I figured out it was gas from her symptoms and have been trying to help her w/ some things but as soon as she eats anything she’s miserable again. What can she eat at this point do you think and how long until these symptoms stop? After reading more into seroquel I don’t know what we should do but it deffinately sounds like we should try to get a different med if possible but she unfortunately is chemically imbalanced so this maybe her only option to be able to live a normalish life.

  34. Nancy,

    Wow! Thanks for putting this obvious wife abuser in his place if he’s even real.

    The bipolar fad fraud was invented to supplement and/or replace the insult stigma of “borderline” for abuse/trauma victims with the latter fraud exposed by Dr. Judith Herman, Psychiatrist, in the classic work, Trauma and Recovery, while the more recent bipolar fraud fad for abuse survivors has been exposed by Dr. Carole Warshaw, Domestic Violence Expert and Psychiatrist. I’ve cited articles about this many time on MIA.

    Now, we have the likes of various mental death experts like Allen Frances, Nassir Ghaemi and Joel Paris fighting for their turf for abuse trauma victims to be not overdiagnosed, bipolar or borderline in that order by these three FRAUD predators that abused women and children need like guns to their heads literally. Obviously only a psychopath and/or malignant narcissist could prey on abused women and children when they are already so down and betrayed by one and all only to have those in so called helping professions like medicine (see predators named above) and the legal system created for and by lying psychopaths per book, Political Ponerology, take their huge pound of flesh too per Dr. Aphrodite Matsakis, Trauma expert, and author of I Can’t Get Over It. That’s called retraumatization, the real goal of the mental death profession to destroy the abuse victims permanently unless they are able to escape.

    Anyway, you did such a superb job in responding to this outrageous abusive, degrading email, I’ll just add my praises to your great wisdom and “telling it like it is.” Thank you so much!! You made my day!! Pity this poor abused wife being gas lighted constantly and let’s hope she escapes before it’s too late though this post is so outrageous, it’s hard to believe it’s even real. I’d say the one driving the woman “crazy” should be on neuroleptics to give her a break and not the other way around!!

    • Nancy,

      Sorry, I forgot to include the citation to the Dr. Judith Herman article on complex PTSD for abuse/”combat” survivors of all types of wars from domestic, playground, boardroom to other combat zones.

      http://www.ptsd.va.gov/professional/pages/complex-ptsd.asp

      Again, though this article admits that borderline can be a misdiagnosis for PTSD and complex PTSD, the mental death profession started sneakily turning the tables on the victims by their usual pernicious lies by claiming that those with PTSD diagnoses were really misdiagnosed bipolars when the opposite is true in that those with PTSD are misdiagnosed with bipolar. I fought with the people at the Sidran trauma web site about this and they finally removed the fraud lie that bipolar often coincides with PTSD, a vicious, bogus LIE, FRAUD!! Hopefully, they haven’t changed it back without my checking recently.

      But, what else could one expect from a group of malignant narcissists/psychopaths at the top of the biopsychiatry KOL APA food chain that sold out to Big Pharma for their own greed, power and status with the promise of destroying millions of lives as grist for the billions Big Pharma would make from such vile, evil, sadistic betrayal of their so called patients/clients. Also, as exposed by the Last Psychiatrist and many others, the mental death profession especially exists to blame the victims of all social, government and other ills, injustice, exploitation so they can never be called to account. It also ensures those in power can falsely accuse their victims of being crazy and win every time with the mental death profession supporting those in power always. Several articles have been posted on MIA exposing the “missing gene” and the “gene illusion” junk science of biopsychiatry like Dr. Jay Joseph and others with many bogus claims of bipolar genes and brain defects. So, there are all kinds of nefarious agendas keeping this evil biopsychiatry predation eugenics monstrosity going at the cost of countless lives. Just like the Nazi Holocaust, it is hard for normal people to believe it until/unless they become victims themselves when it is far too late. Wake up America!!

    • I am a victim of domestic abuse . No need for me to go into detail . I was put in seroquel 2 months ago . I couldn’t tolerate side affects . I am off now for 3 days . I am very angry and my eyes hurt and ringing in my ears and headache loss of appetite no sleep . I dont know what to do .I am in therapy now for PTSD . After reading all these comments I’m now afraid I have brain damage .

      • Iris, many of us have been on these drugs for decades and we’re okay now. Two months isn’t that long. Brain damage is possible from anything out there, including air pollution, or a car accident. Never mind television. I think honestly people worry to much. Just don’t obsess over “withdrawal” I swear this site makes people so worried, so scared and obsessed, which seems to be more problematic than the withdrawal itself. Stay away from psych drugs. Don’t start them, and get off the ones you’re on.

  35. gas lighting

    http://youtu.be/V_p5labx_1Y

    I found out about this movie in 2006 while doing research about what was “wrong” with me. I was becoming more and more crazy and unstable and completely NUTS. I was a wacko and absolutely CRAZY.

    So I researched like crazy. When I found that movie I went EVEN MORE NUTS & CRAZY because my husband’s name is Greg and his first wife’s name is Paula.

    The two main characters in that movie are Greg and Paula.

    Crazy isn’t even the word for it.

    Greg is in prison now. The state brainwashed my kids and turned them against me. They all think their mother is severely mentally ill.

    Greg still sees his kids. They visit him in prison.

    I haven’t seen my kids in 5 years. The state of NY just made me CRAZY by sending MY kids to go visit my birth mother and brother, the two people that I went into foster care to get away from (and they’re both worse than Greg). NY sent MY kids to my abusers and of course, it made me CRAZY! Those who have no idea what’s going on would look at my CRAZY behavior over the past few days and would think that I was having a “bipolar” episode.

    Everything has a basis in REALITY.

    There is no real Justice in this world.

        • This is almost exactly my story, mjk…you haven’t posted for a long time-I hope you are alive and well. Please let us know in the forums if you’re alright-I’d like to start a ‘club’ where women who lost children thru the courts to their abusers can at the very least support one another if not figure out how to get some sort of ‘justice’. My kids prefer to think me ‘crazy’ rather than have to acknowledge that their lives from 8 and 9 years of age until now is based on a lies and distortion.

          • Hello, I want to say that you are not the only ones to lose family due to the MH system. Decades ago, both baby brothers of mine, independent of each other (that I know of) decided to reduce contact with me down to the bare minimum. I have two nephews and a niece I’d love to be an aunt to, but my brothers have kept me out of their lives all these years. I didn’t have children. I had a long-term boyfriend who died suddenly 11 years ago. Undoubtedly his involvement with the MH system played a big part in what killed him. After that, I saw and heard from my brothers even less. I have seen my niece two or three times in her life, and she’s maybe 16 now. My nephews, fewer than ten times, and they are in their 20’s. I have no clue what lies my brothers told the kids. It is heartbreaking.

  36. Dear Nancy, I wouldn’t fancy withdrawing from 1,500 mg of Seroquel.
    Seroquel along with weight gain, and raised cholesterol also disrupts the Heart Rhythm, this can happen on and off so the consumer mightn’t necessarily report it to the doctor. If he does then the doctor would have to monitor it, and would have a responsibility – so, there can be a corrupt incentive in not writing this symptom if reported to the records.
    A lot of the middle aged on Seroquel that die, die in their sleep but the Autopsy can’t really figure out why.

  37. Here is one of many despicable attempts to further pretend that abusive childhoods and trauma symptoms are equal to bipolar disorder!! What a monstrous, evil psychopathic fraud!!

    They speak of their abuse, trauma victims being violent, but what could be more vile, violent, malignant, evil, sadistic, vicious than deliberately pretending that abuse trauma symptoms of their innocent victims are bipolar and stigmatizing such children as such to completely destroy their lives to push their lethal drugs for their own greed, power, sadism, self aggrandizement, social control and psychopathy? This is the new fraud these fiends are pushing; that if one had a traumatic, abusive childhood with related symptoms they are really bipolar. As I said above, bipolar was created to be a garbage can stigma and coverup of all the abuse trauma victims these psychos had to lie and deny since the junk science DSM REFUSED to consider ANY CAUSES OF ANY OF THEIR VOTED IN STIGMAS. Malignant narcissist creator of DSM, Robert Spitzer, admitted that if any such social/environmental causes like abuse/trauma were considered, their whole evil house of cards would fall apart. Hope this monster and his cohorts get their just desserts of their earned karma some day!!

    http://www.psychiatrictimes.com/bipolar-disorder/violence-bipolar-disorder

    Several recent horrifying articles have been deliberately equating child abuse and trauma to the vile, fraudulent, vicious life destroying bipolar fad fraud to create more Rebecca Rileys a la Joseph Biederman and similar psychopaths in biopsychiatry. This is rotten to the core and totally monstrous!!

    • Re my government and the removal of age restrictions for ECT for the very elderly and children as young as 2 years old. A treatment like punishment, violation & rape for frightened children who have already been punished, violated and raped. Adults too. 87 ECT, often against my will, for a reaction to an SSRI that became PTSD, the treatment for which was ECT. As a twice victim of rape at 13 and 24, ECT was much, much worse.
      That’s why I’m after their hides.
      Of all the tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under the omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.
      So remarked C S Lewis.
      .

  38. As Dr. Paula Caplan already exposed with another military rape victim, anyone who tries to get justice for such military rape like another victim below is destroyed and discredited with the bipolar fad fraud stigma, which is the purpose of this evil stigma as a degradation ritual and demolition enterprise of one’s life, reputation, career, health, relationships, human rights and anything else that could matter to a human being. I hope these fiends face their own Nuremburg Trials some day and can’t come soon enough for me.

    http://www.rawstory.com/rs/2013/06/07/victims-say-military-sexual-assault-reforms-dont-go-far-enough/

  39. Nancy, I just found this. I’ve been writing about having a black box warning against Seroquel use on people with any history of eating “disorders”. I was locked up on a “unit” in the year 2000 when they decided rather arbitrarily to weigh me. I weighed 90 pounds and they decided to force “eating disorder treatment” on me. It was done rather crudely and forcefully. I suppose they assumed that all this force would “cure” me of decades’ worth of eating problems in the one week I had remaining as inpatient. To speed up weight gain, they had me on 600 mgs a day of Seroquel. I immediately gained 10 pounds. The docs pronounced me “cured” of my eating disorder, and let me go at around 100 pounds. I finished undergrad in mid-2003 weighing something around 130. At the end of 2004 they had me on 900 mgs a day. During that time, I gained 50 pounds in six months. By January 2005 I weighed about 200 pounds. I am a very short, and now, I weighed twice as much as I usually did. My self esteem was shattered. That winter, I was bullied about my weight. I went to my psychiatrist and demanded that she take me off Seroquel. She switched me to Thorazine. My weight immediately dropped as soon as the Seroquel was stopped, but I was on a rampage, pissed that I’d ever been through that Seroquel nightmare. I ate less and less. By the time I graduated from grad school I was certainly starving and underweight. Over the next few years I came close to death from anorexia several times. Last summer, my kidneys failed.

    I am okay now, off all psych meds and away from therapy and all mental health care, thankfully. I finally feel like myself again. I was a fiercely independent, quirky, creative, talented, rebellious, and musically gifted young girl. All I asked for in my early 20’s was help with eating problems, and I ended up with three and a half decades of a bogus psych diagnosis called “schizoaffective,” which I never had.

    I am very happy to join the ranks of antipsychiatry and meet others with similar experiences.

    These drugs that cause extreme weight gain should never be given to anyone with serious eating issues. There should be a black box warning against this. I know of others who have also reported that their worst relapses came after they had gained undesired weight from these drugs.

    Anything I can do to help, let me know. Julie Greene

  40. Another thing…you mentioned insomnia. I was incarcerated at a prison/ER for three days in mid-2011 and they didn’t give me the pills I ordinarily took even though I told them what I was on. After that, I restarted the anti-epiliptics but stopped Risperdal 3mgs and Abilify, maybe 20 mgs, both cold turkey. I always figured my subsequent insomnia was medically-induced by having been at an extremely low weight, severely dehydrated, and bradycardia (around 30 bpm). I have heard that for people who have gone through extreme starvation, long-term insomnia is a given because the body is afraid it will die if it sleeps. However, I also learned that unbeknownst to me, my kidney functioning had become very low due by the end of 2011 to long-term lithium use in the past. I have no clue why they chose to hide this from me or ignored obvious evidence in blood tests. Still, I have suffered severe insomnia since Aug 2011, sleeping only an hour or two, if I’m lucky, at night. It was certainly not due to anxiety, mania, or psychosis as the shrinks insisted. My doc even claimed I was nutritionally deficient in antipsychotics. But she also said she wanted to force-drug me to stop me from writing about the abuse done to me by “mental health care.” I left her after that.

    I am working on sleep and trying to notice what helps and what doesn’t. I am certainly not manic. Even though I’m tired a lot, I write all the time. I’m writing a new book.

    Julie Greene

  41. For years I was told that I was crazy and had a long slew of mental disorders. After 14 years I was finally diagnosed correctly with hypnogogia, a sleep disorder, and clinical depression. And for it I’ve been prescribed seroquel 600mgs at bed and 100mgs anytime I start feeling like I’m “losing” it. and cymbalta 30mg morning and afternoon and 60mgs at night. Besides that disorder I also suffer from a rare neurological disorder that cause my myelin sheath to have been ate away. And now I’m facing seroquel withdrawal and I’m so scared. I’ve been suicidal since I was 14 and I’m now 32. And the less sleep I get the worse mood issues I have. And I’m also terrified how my nerve disorder is going to be affected by the seroquel withdrawal. The only reason I’m going through it is because my insurance stopped covering it. Can anyone give me any advise? I’m only 2 days into my withdrawal and I haven’t slept yet, when I tried I started hallucinating.

  42. To add to what Nancy said about suicidality…it is my experience as someone who has gone through the dredges of long-term, extreme starvation the body has amazing ability to survive. The mind will lose cognitive ability, yet the body will prevail and self-preserve.

    There was a site I went to once where folks were speaking openly about having deliberately overdosed on various legal and illegal substances. This was a forum. Many “recovery”-type forums do not allow such things and users are kicked off for “triggering” other users of speaking of dangerous things. Or they get the cops called on them. However, on this forum, these users were recording their distant past experiences. At the time, I was suicidal myself. So with the morbid curiosity I had at that time, I read these accounts.

    What I found was a bit of a lesson to me: folks had been “rescued” from these overdoses. Invariably it happened not while they were thinking straight and still suicidal, but after they’d gone into delirium, so their minds were turned off and then their bodies took over and did what they had to do.

    Those that have not survived have not posted…anywhere…that I have seen.

    I am still struggling with insomnia to date. Not once have I had more than a couple of hours of consecutive sleep since mid-2011. I generally get two two-hour segments, if I’m lucky, per 24 hours. I’m still trying to find out if it’s my eating disorder or starvation that caused the insomnia or the drug withdrawal, the fact that my kidneys don’t function well, or a combination. Or possibly something else. I’m not depressed, manic, or anxious. I don’t have panic attacks. I have no more nightmares than anyone else. I sleep whenever I can regardless of what time it is cuz I feel that if I can get it at all, I’m lucky. I’m on public insurance and have no health care, can’t go cuz I’m scared I’ll end up in a mental hospital, subject to discrimination, profiled, or just get rotten care.

    Julie

  43. I went from 800 mg of Seroquel daily to being completely off Seroquel now. I feel great. I am sleeping so much better. I am so much happier, and my nerves are nothing like they were. I believe Seroquel is a temp fix and not a long term one. The longer you are on it, the more issues it causes. You will do fine. Contact the maker of Seroquel and see if they will help you, if you don’t want to come off it. But for me, coming off Seroquel was the best thing I did!!!

  44. “I believe Seroquel is a temp fix and not a long term one.” For a select few. Though who constitutes that select few can only be determined after and not before they take Seroquel. Or for that matter any of these psychiatric drugs. Which is why they should never be used. In some cases, suicide or murder is the result. In some seemingly permanent tendency to have manic episodes and so on. While it is true that we all have blood running through our veins, the differences between people can be enormous. Your journey was apparently fairly easy while others spend years getting off one drug or another or try to go back on with bad consequences.
    Depression seems to be the main portal to these drugs. When do people feel depressed? Is it just something that happens which can be blamed on genetics? or some other mechanism out of a person’s control? Or is depression the result of a life not really in tune with the person’s genuine needs and self? If the latter, then drugs are an insult to the person’s true self which hoped through the message of the emotions to bring some change.

  45. I, too, was for a while on coerced onto a terribly large dose of Seroquel. If that 900 mgs a day was a “temporary fix,” say, for six months, then those 50 pounds I put on during those six months…um…What about that? I put on 110 pounds total, and my total body weight more than doubled. What about the evidence of blood sugar spikes and dips…I was headed for diabetes…would that have been “temporary”? As a result of this assault to my body, I am still struggling with a severe eating disorder (anorexia and binge eating), which was the backfire result, 15 years after I was first given Seroquel.

    Thanks so much for fighting for this, Nancy. This and Zyprexa and other weight-gainers should NEVER be given to anyone with a history of eating disorders. I am NOT alone here. There are others that have told me similar stories. They won’t speak up because they don’t want to get nailed, but they have told me these things in private.

    Julie

  46. Nancy, I have responded to this wonderful article with a blog article of my own in my own blog. Here’s the link:

    http://juliemadblogger.wordpress.com/2014/03/06/after-seroquel-response-to-an-article-by-nancy-rubenstein-del-giudice/

    The title of my article is, “After Seroquel: Response to an article by Nancy Rubenstein Del Giudice.”

    I have your last name spelled as it appears up top here as writer of the article, however, if I’ve got it wrong, let me know. My own experience is that my own rather simple first and last names are often goofed, so I cannot imagine how often yours are. Thanks for providing inspiration for me to write this. Rock on, and let’s all continue to speak out. Julie (and her little dog, Puzzle)

  47. I have been on Seroquel for about 6 months now and to me it has been a godsend. I was exhibiting all kinds of anxiety and depression for years until my doctor put me on this med. I also take xanax, prozac, ambien, and nuvigil. I dont take these because i want to take them i take them because i have to.

    • God Bless you! As you move forward with your recovery your minds inner voice will help guide you off these brain disabling drugs. Please use caution when this happens and educate yourself on the withdraw process. Find the sunshine in your life and enjoy the challenges.

  48. Thank you, Nancy, for this article and for your honesty. I came upon your article searching for answers about seroquel withdrawal because I am currently in the beginning stages of withdrawal. I am on several daily medications… TOO MANY… 900mg lithium, 150mg seroquel XR, 150mg nuvigil, 2mg klonopin, 10mg ambien, 2mg Xanax as needed, & I am also on levothyroxine, which is a thyroid medication I had to start taking as a result of my bipolar meds. I have been on this combo for 2 years, but I have been juggling meds for my mental issues & sleep disorders for about 7 years. My diagnoses are bipolar 2, general anxiety, chronic insomnia, sleep apnea, restless leg syndrome, & hypersomnia. When I was diagnosed with bipolar & put on lithium & seroquel 2 years ago, I saw a huge improvement in my mood & functionality. I didn’t feel like I fit the profile of a bipolar patient (I don’t go “manic”), but the meds worked for me much better than the antidepressants I had previously been on, so I went with it. Lately I’ve been getting depressed again, almost nightly, & have been reading a lot of articles about bipolar disorder & bipolar meds. The more I read, the more I am convinced I should not be taking these meds. I am sick of the side effects, especially the weight gain. I am only 26 & am scared these medicines are going to take a huge toll on my body & prevent me from ever being physically healthy. So about a week ago I stopped taking my lithium & seroquel altogether. (I now know that is a big mistake.) For the past couple of days, I’ve been experiencing terrible nausea, tremors, restlessness, I have not been able to sleep at all… Even with my sleep meds. So I googled the withdrawal symptoms of these medications. I did not find anything too alarming about lithium, but then I read this article about seroquel. I am now terrified. I know my dosage is much much lower than yours was, but I am still very concerned about the damage it has done to my body & future damage. I think in going to try to take half of my dosage for a while & taper off that way. I’m scared to even tell my doctor because from what you said & some of the comments, I no longer feel like I can trust her. I am so sick & tired of dealing with all of this & now I am so scared of the effects of these drugs. Any advice would be appreciated. Thanks for taking to time to read my rambling.

    • The human body has an incredible capacity for renewal and healing. Keep that in mind. If you consider for a few minutes that terrible circumstances that people have gone through during wars in Europe or Asia . . . famines and plagues . . . car accidents . . . and yet have come through and rejuvenated themselves, that will help. The medical doctor is a very conservative person. He almost always takes the worse case as the likely case. He plays it safe. This condition or that is incurable. You will dies within 6 months, etc. If you get over the incurable condition it is a fluke or a misdiagnosis.
      Withdrawals are difficult especially if you identify with the emotions and sensations. If you just observe them then it is like a journey that will eventually end in a happy place. A lot of people in this world over time have had to go through truly horrible situations. Consider Iraq or Afghanistan or Syria. Yet the human soul can handle this and does and has.
      In America people are discouraged from dealing with negative emotions and encouraged to take a drug. Negative emotions are treated as illnesses. Does that really make good sense?
      Over a several year period of time I talked with a woman in her thirties who withdrew from a few psychiatric drugs as well as Oxycontin. She got a lot of relief by going to India. She did not go off more than one drug at a time and was careful to avoid precipitous moves. You may be allowing an unrealistic fear to rush you. And you would benefit from having a mentor to talk with as you go along. There is probably someone you can find to help you through the dark zones. Doing it all on your own may be too much of a task. You don’t need to hurry. The more time you are willing to take the sooner it will happen. Good luck.

    • I have today a few more reflections that might help you. If you were actually a machine which is the model adhered to by scientific materialism, then your fears and worries would be justified. It is true that this model has been useful; but just as a map is not the territory (Gregory Bateson), so a model is not the human being. Just as maps simplify the terrain, the model simplifies that which is modeled. And the model leaves out life-consciousness, something that science can not understand and never will. We do not see many broken down automobile self repairing. So if you were a machines, it might be hopeless. But people do self heal. Doctors generally do not like to dwell on this fact. Their livelihood depends on people being sick until they intervene. I now know a number of persons who have successfully withdrawn from psychiatric medication. In some cases after many years.

      So because in addition to all the parts that are reminiscent of a machine, the blood vessels, the heart pump, etc. there is also life and consciousness that will heal you if you give it the opportunity. If you will quiet your mind by sitting still and breathing for a while, an inner voice or sense will give you guidance. Follow that. Also I would recommend checking with Dr. Peter Breggin who is probably the world expert on these drugs and on withdrawing from them. You can Google his name and get his website. Follow his advice and get well and healthy again. In the meantime realize that in a sense you have been kidnapped and are being held by medical captors. You have been taken off to an alien chemical land where everything is strange and rather inhuman. When you escape and get home, happiness will greet you. Good luck.

    • Side effects of Lithium (from the bottom of the longest list, page 23, very small print:
      Depression – `Psychomotor’ retardation actually `toxic’ motor retardation (i.e. slowed to a standstill mentally & physically – suicide. (Not ideation). I spent 3 years in an almost constant suicidal state (too many times in ICU). Stopped it myself after 3rd year. Did NOT know that it was the cause of all the misery (PTSD from ECT as well). Put back on it 6 years later as a `trial’. Nurses had `never seen me so sick’. Was nearly paralysed but stopped – went home 3 days later, back in ICU that night. Beware Lithium. Kidneys not marvellous either at 72 years old.

  49. To be honest, at first I thought your comment was intended to make me feel guilty to be worrying about my health. But then I read it again & read your second comment & realize you are only trying to help, and I thank you for that. I liked your phrase that I’ve been “kidnapped and being held by medical captors”. That is exactly how I have recently begun to feel. But I know now that I will be okay. It won’t be easy & hopefully my health problems won’t be too severe, but I know I can get through it & that I will be okay. I am luckier than most. It’s sometimes hard to keep that in perspective. Thanks for your comments.

  50. I was in an abusive relationship during 2008 and 2011. In 2010, I was convinced by the other person in this relationship that the reason I was unhappy and the reason I “believed” I was treated badly by him was because “something was wrong with me”. So if he was to stay with me, I had to “get help”. So I did. I went to my GP and I think she could see I was depressed. She then prescribed me with Pristiq 50mg and referred me to a psychologist. The Pristiq helped me and I was lucky enough not to have any side effects. The psychologist, after seeing her a handful of times, diagnosed me with depression, social anxiety disorder and borderline personality disorder. I truly was depressed: I was interstate alone with no family or friends one could lean on other than my abusive partner and I actually let him believe I was the reason that our relationship wasn’t working.

    I was then referred to a psychiatrist who saw for a couple of sessions and thought I had epilepsy, (it runs in my family) so he prescribed me with Epilim. I was allergic to that and ended up in Emergency so had to stop it immediately. He then asked me to try Seroquel. I started with 50mg and I remember the first time I took it, I think I slept about 16 hours. I kept telling the doctor that I just couldn’t get up in the morning for work and I felt like a zombie when I did manage to wake up. It would take so long to “snap out” of the fatigue and by lunch time I was better. It did help with my moods. I told my psychiatrist I would feel happy and sad all day, and sometimes I would forget what I said in the heat of a moment. I would forget what was said; the conversation – like a complete wipe of my hard drive, but – I would always remember how I felt. I didn’t know why, and I guess he thought I had some kind of epilepsy because of that. Meanwhile, the Seroquel was causing me such grief waking up in the morning. My moods did get better and I finally felt in control of my emotions. I’ve always been an emotional person; I cry at movies, I cry when animals are being hurt on the TV, I feel love strongly and fall in love quickly. I have been this way since I was a child. I also have abandonment issues due the fact that my father was not a father to me. (He told my mother to have an abortion when she told him she was pregnant with me). All I can say is that child knows when he or she is not wanted by a parent.

    November 2011, I meet and fall in love with the love of my life. (No, really). He accepts me for who I am and understands that I take medication every day and understands that I may or may not have bipolar. During some time of 2012, and after much of my complaints about the way I felt so drugged and zombie-like, my psychiatrist upped my dosage to Seroquel XR 150mg. I never had anything new to report. I was now in a loving relationship and was not feeling anything other balance and happiness in life – for the first time. Was this due to Seroquel? Was I really crazy? I wasn’t sure. And then he said it. My psychiatrist said I had Bipolar. To this day, I don’t know which kind. He never told me what he thought he always just sat there; looked like he was listening to me; making notes; asking questions; always looking down at his notebook. He did tell me one thing – that I was high functioning. What did that mean? I got my answers by doing my own research. Funny, right? Isn’t he supposed to have the answers? He is my doctor?!

    Fast forward to May 2014: My partner (now my fiancé) and I decide that we would like to plan a pregnancy. I had been so happy, planning, reading, watching documentaries, saving, everything. We were both very excited. So we went to our local GP to see what tests we needed to get done etc. GP said Seroquel can cause some issues with pregnancies so to go and see my psychiatrist to see where he stood about Seroquel. Now this is where things get tricky.

    My psychiatrist said he was happy for us wanting to have a baby and that he thought I was ready to come off Seroquel. WOW! I was so happy! He said, yes no problem if you want to try to conceive as early as next month, you can come off it now. Awesome! I was now stable enough to come off this drowsy, zombie drug. Except for one thing – he said I could just stop taking it cold turkey. I was shocked. I told him no – I couldn’t do that. When he asked why, I told him that every time I would forget to take it or missed a dose for whatever reason, I would be nauseas all day long the following day with a splitting migraine and I was unable to sleep a wink at all. I really struggled on those days. I gave him details of every physical symptom I felt and described how I couldn’t get through the day until I took my next dose the following night. He said, right, in that case, just reduce your dose from 150mg to 100mg and stay on that for a week, then go down to 50mg for the following week and see how I go. Well I should have listened to my instincts here but I foolishly thought: If the doctor says I can come off this cold turkey, surely I can reduce the 7 days per 50 mg to 4 days, right? So I did. I dropped from Seroquel XR 150mg to 100mg in 4 days and I was fine. Then reduce to 50mg the following 4 days. My last dose was Thursday night last week and come Friday night, I was starting to feel a little nauseas and my breasts were tender. Stupid me: I thought I might be pregnant because I had a pretty bad headache and nausea so I automatically thought, maybe! I could be! But boy was I wrong. I slept 2 hours that Friday night, and I couldn’t sleep deeply. It was as if I was cat napping, kind of asleep but aware of the sounds in the background and my environment. It was random sleep, and each time I would fall asleep, I would wake up. It seemed as though I was sleeping on and off every 20 minutes. When I awoke, it was because my fiancé had gotten up out of bed early that morning to use the bathroom and he woke me up in the process. Lucky he did, as I was having a vivid nightmare of zombies chasing me and trying to kill me. That’s one thing that went away after taking Seroquel. The nightmares I would have each and every night of someone or something trying to kill me. I’d rather have those nightmares back each and every night if it meant I could get myself to sleep on my own and not rely on this terrorist drug.

    Saturday morning came and I wasn’t feeling that great. I had energy and I wasn’t tired although my body was exhausted. I thought maybe I was getting the flu. It’s May after all and winter starts in June and even though it’s been really sunny lately, I thought I may have caught something from someone. It happens when you work in an office. My head was pounding and pounding and had to lie on the couch I had commitments Saturday night and Sunday afternoon. I went to a friend’s birthday get together Saturday afternoon and I noticed I was really warm: warmer than usual. I thought maybe I just had a fever because I was getting hot flushes. We were all out on the balcony and the cool air was amazing on my face. I had such a good time. No one would have had a clue that I was fighting the brain zaps in my head. I wasn’t cold at all, I was warm. My fiancé was so cold (he is never cold) so I thought it was strange that I wasn’t. Next we were on our way to pick up my soon to be mother-in-law to take her out for a belated Mother’s Day dinner. She was out of town that weekend so we decided to take her out for a meal when she got back.

    Well on the way, I thought I was going to pass out: my eyes were rolling in the back of my head; I couldn’t keep my head up; every movement the car made, felt like my stomach was going to explode; I felt like I needed to burst into tears and I didn’t know why. All I could do was hold my tummy, press the button so that the car window was all the way down and also put the air conditioning on. I had to pretend that I was ok because I didn’t want my fiancé to worry but it got to the point where he was talking to me in the car and my head must have fallen off my neck or something, because I wasn’t responding. He asked me if I was ok, I said no. He wanted to take me home but I insisted we needed to see his mum. So went to pick her up, took her to a place but there was a one hour wait. So we took her to Outback Steakhouse. I had hardly eaten all day, since the thought of food and the smell of it made me nauseas. I did eat at the birthday but only something small – a piece of meat and some salad – then I gave it all to my fiancé to finish.

    My soon to be mother-in-law knew I wasn’t well but I chose to be out and have dinner with her. I remember downing a glass of “Country Style” lemonade because it was so sweet and would have given me some energy. She had a look of concern on her face as my head just fell off my shoulders and my eyes rolled in the back of my head as I tried to keep my head up. I leaned on my fiancé for support – literally. I ate something small. It was yummy. But again the stomach cramps and the nausea came back. And then it was SO cold that I didn’t know whether to wrap myself up in my fiancé’s arms or just run into the restaurant’s kitchen of cooking warmth. It was then time to go. We took his mum home and on the way I didn’t think I was going to make it. I thought I was going to pass out and I know my fiancé was worried and didn’t know whether to take me to Emergency or not. I said no – I just wanted to be at home.

    Well things got worse. We ended up calling the Mental Health Line at about midnight and spoke to a nurse on the phone. She said my symptoms allowed my call to be transferred to a GP so I spoke to him and he said he wanted me to call a Home GP to come to my house. So I did that, but they said it would take around 2 hours. By 3am I found myself waking up on the couch with my fiancé beside me. GP didn’t call yet to let me know they were on their way. I felt that if I could fall asleep, I would feel better. So I called back to cancel the Home GP and tried to go to sleep. It took me forever to fall asleep. Just like the night before, I didn’t feel tired at all, so I didn’t know if I would fall asleep. I had relied on the Seroquel for so long to make me feel tired and put me to sleep, I just didn’t realise how bad it would be coming off.

    I ended up sleeping a few hours on Saturday night. I had pain in the back of eyes, they felt bruised. On Sunday, I was worried thinking how I would possibly function at work on Monday if I couldn’t get some decent sleep on that night. We went to the shops because we needed toilet paper and I still had that nauseas feeling, migraine and brain zaps. I thought I was getting better. I thought: I can do this. Just a few more days. But then as we were leaving, my body welcomed a wave of itchiness. I was SO itchy, I had to scratch. I didn’t care what people would think staring at me. I wanted to rip my clothes off and scratch. So I did in the car on the way home. I pulled my jeans off so fast and scratched and scratched my legs until I bled. My fiancé was terrified and didn’t know what to do. “Just take me home”, I said.

    I decided to call the Home GP again. She was a lovely Indian lady, with concern and compassion in her eyes. She said I have come off this medication too soon and my body is not responding well to that. The only option I have is to start taking it again. When she said that, my heart sank and I burst into tears. I don’t want to take it again, I sobbed. I don’t want to go through this again, I cried. I don’t know how to do this. How will I cope? She re-assured me that the slower I taper off, the less I would feel these awful withdrawal symptoms. I told her I was anxious and I didn’t know why. I said I couldn’t sleep; I was constantly worried and waiting for something bad to happen; panicking and that I thought I was going crazy again. I don’t want to feel this way anymore, I pleaded. I told her it felt like I was in a room where the walls were caving in on me. She said this was normal and comforted me with her concerned, warm, brown eyes. She confirmed my psychiatrist should never have instructed me to come off this drug cold turkey, let alone drop down by a week of 50mg. It needs to be a slower process. And then she was gone, as swiftly as she had arrived – she was gone. I was left to pick up the pieces of my soul that lay on the floor beneath me, hoping that each piece still worked as I put everything back where it belonged. At 4:30 PM on Sunday night, I hesitantly took 50mg of Seroquel XR. I hate this drug so much.

    Within 45 minutes, my nausea had gone. The migraine remained but I was hungry. I hadn’t felt hungry for almost the entire weekend. I guess that explains the extra 30kg of weight I now carry since starting to take Seroquel in 2010. I used to weigh 67kg. I now weigh 98kg. I know it’s because of the Seroquel but no matter how healthy I try to be, it just keeps piling on. Hopefully after I’ve weaned myself off this drug, the weight will actually come off with exercise, like it happens for normal people.

    I slept well on Sunday night. I slept for 10 hours and was able to go to work on Monday. I still felt horrible and had brain zaps, a constant migraine, sensitivity to light, dizziness and light headedness, and I still felt slightly nauseas but I could cope. Just. My heart rate had slowed down to normal and I could function. Just. I wasn’t able to think clearly. I don’t know how I got through Monday at work.

    Monday night, I took my 50mg dose. I wasn’t in the mood to cook dinner, although I was hungry. Those brain zaps and the migraine was still there and I was exhausted. I fell asleep on the couch and went to bed when my fiancé called to me. What awoke me on Tuesday morning was my heart. It wasn’t just beating fast, it was also POUNDING in my chest. The pain from the pounding is what startled me and woke me up. I was dizzy and couldn’t stand up straight. My vision was blurred. I was worried, because I didn’t know what to do. I was confused for a while and just stayed in bed. My heart didn’t slow down at all, and it worried me so much that I thought I was having a panic attack. The last time I had a panic attack, I was 19 and my heart was beating so hard and fast that it woke me up out of my sleep at 3am I thought I was having a heart attack. It lasted for 20 minutes as I screamed for my mother to help me, begged her to help me.

    I called in sick on Tuesday morning and went straight to the GP. I could barely walk but I walked the 10 minutes to the medical centre in the bright, warm sun with my large sunglasses helping to cope with the excruciating pain from behind my eyes. I tried to read a magazine but it hurt too much. So I just sat there. Hoping the doctor could help me or tell me how to make this pain go away. Suddenly the last patient left the doctor’s office and it was my turn next. Out of nowhere, a woman burst through the doors and asked to see a doctor because her baby son had fallen and hurt his head. She carried her son in her arms and followed by a toddler. She was calm but I could hear she was frantic as she spoke to Ines, the receptionist. The lady filled out her “New Patient” form and held her little son in her arms as she struggled to write on the form and also keep track of her toddler walking around the waiting area. Her baby was adorable. He had gorgeous tanned skin and green eyes with soft brown hair. He really was a beautiful little boy. I started thinking about what our children would look like. Would I hold my baby the same way she was? Would I instinctively know what he needed from me? I hoped so. I want to be that kind of mother. Ever since we decided we wanted to have a baby, I realised that I find myself staring at women with their children. I’m admiring them, seeing how they hold their children, how they speak to them. How their babies respond to them. That look of love that seems ooze from a mother’s eyes. I want that too.

    Another patient suddenly walked in who was late and was supposed to go in before me but Ines told him he would need to wait because an emergency case had presented itself. I assumed she was talking about the lady with the baby. But then all of a sudden, the doctor called my name. I didn’t hear him. He was standing in the corridor and was looking at me. Ines looked at me, said my name and told me that it was my turn. I responded as I was a little confused and said, “This lady needs the doctor to see her baby first. I can wait.” Ines and the lady with the baby both thanked me profusely. I just nodded and did my best to smile, the pain in my head consuming me. She was in there for what seemed like 2 minutes and as she left she thanked me again. She was much more relaxed now so I guess her baby was going to be ok.
    As I walked into the GP’s office, I felt stupid. The GP is going to tell me I am getting sick again. That I need to be on these meds and he is just going to refer me back to my pdoc. I was wrong. He told me pdoc never should have told me to come off these meds cold turkey because the brain needs time to adjust to the dosage levels and learn to cope without the drug in my system. He said the way I was feeling was normal and he helped me put together a tapering schedule – all of which my pdoc should have done with me. My GP even made a comment about how pdocs charge so much for so little time and don’t do much to deal with the aftermath of prescribing meds and then taking patients off these meds like it’s nothing. He said the withdrawal side effects would dissipate gradually as the doses were lowered. That makes sense. Why didn’t my pdoc tell me that? Maybe he doesn’t care anymore because I am off medication and being off medication would mean I am no longer a patient. Right? I am no longer paying $240 Australian Dollars for 15 minutes of his time so I am no longer important. Could it be that? The mind, literally, boggles. He also told me I needed to wait at least 6 months before trying to conceive due to congenital defects caused by Seroquel. Really? I thought that if I was off the medication, since it’s not in my body it wouldn’t pass the placenta. Am I being informed correctly? Well at least for now, all I need is to get off this damned medication that has ruined my life.

    So I called my pdoc’s office that morning. I called him to tell him how I was feeling on this lower dose and called him to tell him how I felt over the weekend. He sounded like he was in a hurry and wanted to get me off the phone quick smart. I told him all of my physical symptoms and he told me that I was just being anxious about not usually taking the meds. He said what I was feeling was just me being panicky and that it was very rare for anyone to be experiencing these kinds of withdrawal symptoms because normally people can come off Seroquel – cold turkey with no withdrawal symptoms and no side effects. I told him that I was not one of those people and that I WAS experiencing these physical symptoms of not being on Seroquel. He said he would be in his office on Saturday and to call him if I needed him. Great help, mate. Thanks for nothing.

    So really, my pdoc advised me incorrectly. This made me really angry. Why wouldn’t he explain anything to me in depth? Why are doctors happy to hand out serious medications like Seroquel as if sweets to a child? I don’t understand it. Not even a warning about withdrawal symptoms. Why not? Do they even care? No. It seems they don’t. At least that is how my pdoc made me feel. Is this a normal reaction? I don’t even know. Am I feeling normal? I don’t know. Am I overreacting? Maybe. Maybe not. Am I demanding too much from a pdoc? Should I only be receiving partial care from my pdoc and not expect too much? So many questions. None of them answered.

    Today is Monday 26/05/2014 and I feel OK. I’ve switched from Seroquel XR 50mg to regular immediate release Seroquel 50mg and my nervous system has adjusted to the lower medication. I am no longer feeling any side effects other than feeling light headed, bumping into things, losing my balance, tiny headaches and dropping things constantly. And of course that dreaded zombie feeling during the day. My wrists for some reason have become weak and I can no longer hold things properly and end up dropping them if I lose my grip. I don’t know if this has anything to do with not being on Seroquel but I am hoping that someone can help me with that. It seems that speaking to doctors is pointless and speaking to others who are or who have been in this position are the best people to speak to.
    By this Friday, I hope to reduce my dose to immediate release Seroquel 25mg. These pills are so small compared to the other doses and that disappoints me because I was hoping to cut the pill in half again after a couple of weeks to further reduce the dose and taper off completely. I’m not sure of what’s to come, and I am a little worried about feeling those horrific withdrawal symptoms again. Falling asleep on my own will also be a struggle but I will need to learn to do this on my own again. I was so manic once about 14 years ago that I was awake for 4 days straight. I didn’t know this was mania at the time but it’s the only thing that makes sense to me. I then took a few Stilnox sleeping tablets which made me sleep for 20 minutes and then I awoke to vomit. I had a slight case of overdosing but it was not intentional – I honestly just wanted to sleep and feel tired again. Not being able to sleep makes me feel so anxious and takes me back to the time I was panicking 14 years ago not having any sleep.

    This will be my biggest challenge and I want to do this without relying on any help – whether it is herbal or natural or whatever is on offer out there these days. I don’t want to substitute Seroquel for another herbal pill or tea or something to help me sleep, because I would still be relying on something to make me tired. I know this helps many others and I understand and respect that, but I just hope to be able to do this on my own. I also plan to exercise more and try and lose this weight. Hopefully that will help to make me tired too. I also plan on eating more fish for omega 3’s to try and support my brain to cope with this entire trauma. I have a couple of wonderful girlfriends who are supportive and who I can talk to – most of all, they understand what I am going through and I honestly don’t know what I would do without them and my fiancé who is there for me every step of the way.

    I just want this nightmare of Seroquel to be over and thankful that I can find others like me on sites like this and realise I am not alone and that I can do this and be free of Seroquel forever.

  51. Dear lisaisabride, BRAVO for telling your story! I know how hard it is to do so publicly. That plus the technical problems folks have writing long posts on any social site…You may spend hours writing something and then you brush one wrong key by accident with your sleeve or your keyboard screws up and poof! Hours of precious work are instantly wiped off the map, never mind wasting precious data connection. And concern that what you’ve painstakingly written will be ignored by those swayed by our societal desire for instant anything and won’t read a long post. So I want to tell you one thing: I did read your entire post. Your story IS ESSENTIAL, as is everyone’s here. I am eager to see Nancy’s response. I want to add one thing: You mentioned in the beginning that you were in an abusive relationship. You said the doctor said the abuse was due to a variety of diseases YOU had. Excuse me? What a terrible thing for that dr to say. Abuse is caused by the abuser. Our society loves to take blame off the abuser and blame the victim in any way it can. Abuse causes a myriad of physical and psychological problems. If you are being abused your body is in constant stress and always fearful. To others who don’t “get it” you appear mentally ill. Many folks who undergo oppression end up in the mental health system and drugged. The drugs cause further illnesses. They are then trapped in a pattern that is often lifelong, when the response they should have gotten in the first place was the following:

    Remove yourself from oppression
    Obtain temporary assistance from people who honor, respect, and cherish you
    Restore your dignity

    …which is quite different from “Go to a shrink and get a diagnosis and then accept that your life is now ruined and it’s your own fault.”

    Best of luck, Lisa

  52. Thank you so muc, Lisa. I think youre right. Doctors need to recognise when someone is simply going through a tough time compared to suffering from a mental illness. I really don’t think that a handful of sessions is enough to really get to know one’s turmoil of pain and unhappiness to then decide oh you have this mental illness here are some scripts so be on your merry way. Needless to say I haven’t had a follow up call from my pdoc to see how I am going. That makes me feel like I really was just a number to him. I am thankful for Nancy and being able to find this site and to be able to connect with people who have suffered in similar ways. We are all bonded together by this terrible drug and I hope that someone else who is going through the same thing can stumble on this page and see that they are not alone, as I have.

    • Oh, Lisa, I am sorry, when I wrote, “Best of luck, Lisa,” I was addressing you. My name is Julie. I feel honored to know you, otherwise it wouldn’t matter to me what the heck you called me. The damn doctors are the same way, of course, they don’t give a hoot. You are right. And to stick together and be supportive of one another is key. Love, Julie and her little dog, Puzzle

  53. Oh my

    Wow Just Wow
    Just stumbled onto this post…yes, very old…but Donna, I don’t know if you’re still out there-you’ve described my life! I’ve lost EVERYTHING my abusers carry on like normal, OK people! To the T you describe what happened to me!!!

    I’m in the midst of Klonopin withdrawal…I’ve been on LOTs of psych meds since my abusive divorce…K is the last to go! Brain damage, insomnia, suicidal ideation blah blah blah…this is so sinister.

    I wnnt to help somehow but am so damaged I don’t know if it will ever be possible. I want to educate but no one wants to hear it-the ‘chemical imbalance’ theory is alive and well in No. Cal.

    I love this site-I wish there was a way we could connect and organize thru it…

    And mjk-haven’t seen you post for a long time; are you still out there?

    Peace and healing to us all.

  54. Hi Nancy,

    My name’s Josh, I’m 26, from New Zealand. I have been prescribed 100mg (One hundred) Quetiapine to help me sleep and combat anxiety. If I run out, I don’t sleep until I take one again, and have constant stomache pain.

    I was blown away when you said you were taking 1500mg initially. I couldn’t even imagine how that would make me feel, 200mg and I’m asleep for a day. From what I’ve read of peoples experiences with various medications is that American doctors ‘throw medication’ at their patients, and very high doses.

    Well done on making it through those withdrawals, to say it must’ve been tough doesn’t do it justice. I really hope the healthcare professionals in your area rethink the way Quetiapine is prescribed to patients.

    Cheers,

    Josh.

  55. Hey Nancy,

    Thank you for such a quick response. Your experience with this drug is monumental. I agree the initial prescription could be considered criminal. Since I read this blog post I have been thinking of how many symptoms I blamed depression for….

    I am committed to raising awareness in my country, this needs to be herd by the medical community. You are a martyr for the cause as much as I don’t want to think of the pain you have endured.

    If you want to talk more or just have a laugh feel free to contact me at [email protected]😀

  56. Nancy, that was truly a most wonderful and compassionate thing to say to Josh…I am sitting here very far away (as you know) and in tears right now, so moved. Love and human interaction was what was sorely lacking in my life. I had zero spoken conversation in my life and would go for weeks on end saying nothing at all to anyone due to psych abuse and due to societal prejudice, entirely unwarranted as it was. People had no clue what it was like to literally see the backs of people, that is, people’s turned backs. I am on the verge of writing an article on how absolutely no one should go through what I experienced. Not one person, no matter how yucky their “personality” may be, deserved zero love, zero compassion, zero touch, and withdrawal of companionship. This only makes a person more unpleasant, and, as they popularly say, “negative.” I can only say I’m incredibly happy to be alive today, to have survived against all odds, and it didn’t end up with my demise. I have no clue why, and I don’t question. All I can do is to hold onto this wonderful earth, this new land where Puzzle and I have found ourselves, and say, “Thank you.” And thanks Nancy, and everyone else…Don’t ever shut up.

  57. I checked back here tonight hoping for more responses and what I found was so much compassion between strangers who are bonded together by this drug. It’s funny how in our times of suffering we are united as one.

    I wanted to give you all an update on my tapering off Seroquel. My GP suggested I taper off by reducing from 50mg XR To 50mg immediate release. I was on 50mg XR for 3 weeks and 50mg immediate release for 2 weeks. There was no change in how the drug worked for me other than falling asleep sooner on the immediate release

    After 2 weeks on 50mg immediate release, I reduced to 25mg. I was prepared for any disruptions that may occur in my body and was ready to get back onto 50mg if the reduction to 25mg didn’t go well. But it did. I stayed on 25mg for 2 weeks and stopped taking it last Monday night.

    I was worried that I wouldn’t be ok like the things I experienced in my previous post. But I was ok. No headaches or nausea until the third day but not as extreme as previously experienced during my first withdrawal. It’s now 7 days later and the nausea and slight headaches have completely gone. I have been sleeping too. The first few nights I slept for 4 or 5 hours and only woke up to use the bathroom. This was strange to me since while taking Seroquel for 4 years, I had never woken during the night. Not once. A couple of days ago I slept for 8 hours straight. I couldn’t believe it. No insomnia! Last night I slept 7 hours straight and actually had a dream that I remember. Saturday night I went out to watch a world cup soccer game with friends and laughed so much. I felt happy and I laughed and laughed all night long. I felt so free and felt like ME again.

    The only thing I am struggling with is the itchiness. I have some uncontrollable nerve twitches that seem to only occur above my left eye and sometimes my arm, but not enough to cause concern just yet. I am keeping an eye on it. I recently did some research about the itchiness and it seems that Seroquel is also an anti-histamine so it seems I am reacting to any foods I eat that produce histamine. Funny I always wondered why I never suffered from allergies. Drinking water seems to help with the itching and I have tried to eat foods that produce low histamine in the body to start with and plan to re-introduce my normal foods slowly to try and cope.

    I had 2 weeks off from work purposely timed so that I woukd be home and safe during the transition period coming off Seroquel. I’m not sure if anyone else will benefit from these details but I think it’s important to see how others have managed to successfully taper off this horrible drug in the hopes that others may be able to try one of these things if they are going through the same thing. It’s day 7 for me now and I am suprised at how well I am doing. I honestly didn’t think I would make it through. My thoughts are clear. I’m not anxious or worried. I can also say my appetite has decreased substantially. It’s obvious to me now how much I was eating after being hungry all the time while on Seroquel.

    Drinking 2 to 3 litres of water each day, I believe is helping to flush out all the toxins and is helping to soothe the itching. My drink bottle says “Drink more water” on it so that helps to remind me too. I will be sure to update you guys in a few weeks again to let you know how I’m going or if anything strange comes up.

    I struggled finding people’s experiences after Seroquel online so I hope by posting mine here it can perhaps help someone else.

    Thanks for reading and thank you to everyone here who takes the time to post and Nancy thank you most of all. For without you and this article uou have written, I never would have gained the courage to seek answers and question my doctor.

    Wishing you all love, hope, faith and most of all, good health.

    Lilo xo

    • Yes, it’s true that Seroquel is a strong antihistamine at H1 receptors at doses 0-50 mg. It is a strong antihistamine at even larges doses, but the antihistamine effect kind of levels out when the dose is increased and other receptor stuff comes more prominent. Note that this sedating effect of Seroquel at 0-50 mg is similar to older antihistamines like Benadryl which go easily to brain and to H1 receptors. Many later antihistamines don’t go so easily to those brain histamine receptors, for instance because they can’t pass the blood-brain barrier, so they’re not as sedating. In any case… I think the itching does sound like it’s because your body has kind of got used to Seroquel’s antihistamine effects. I remember getting kind of casual large red inflammation spots around my body when *starting* Seroquel. I think I also got later on insane itching when trying to sleep, and it might be related to quitting Seroquel. I’d have to check my diaries to be sure… But in any case, yes it’s a potent antihistamine at H1 receptors.

  58. Hello Lisa, I have suffered itching as well, and I am not certain that this itching was from the same thing. I am currently 56 years old and over the past 10 years people have marveled at how healthy my skin appears. It’s weird that this is the case. I think poverty and not being able to afford fancy chemicals have had something to do with it. I never did anything to my skin, hair, or nails at all! A few years ago, my hair was coming out. I noticed that “conditioner” was the cause, so I stopped it. My hair immediately stopped coming out and grew back in. I never dyed it nor used a blow dryer, and it never turned gray. Needless to say, last fall sometime, I was going nuts from itching and I was told that kidney insufficiency (from meds mostly, that I took years ago) was most likely the reason. I also wondered why the worst of the itching happened while the shower water was running on me. Just plain water! What the heck was our town putting in the water supply that they claimed was “safe”? What I ended up doing was ditching my soap. Bar soap no more. I had read in a book that shampoo and PLAIN dish detergent were the same thing. Not only that, but fancy, expensive shampoo is adulterated with chemicals that are irritating to your body, while plain shampoo will get your hair cleaner and won’t leave a residue. I found this to be true and less hair falls out. Furthermore, it’s less likely to cause daytime itching. Watch what you launder with as well and be sure to rinse your clothing thoroughly. Experiment with different materials and see what works best. Cotton works for some people but not other people. As for what I use now for soap, get this: I went to the supermarket and found, rather cheaply, a large bottle of HAND liquid dish detergent that was both organic and hypoallergenic. You want Ph-balanced as well. This was $3 for a large bottle in the USA. Most likely I could have found it cheaper. I found this was less itchy and far cheaper than baby shampoo of any sort, even hypoallergenic baby shampoo, although there were a few organic brands that were okay. The itchiness immediately went away. Months have past and I no longer dread the shower. I no longer have itchy skin and I am glad that rather brief “phase” came and went. Just a suggestion…may not work for you.

  59. Thanks so much Julie. My mum also asked me about my washing powder hehe. I’ve been using the same powder to wash my clothes for the last 7 years so I’m sure it’s not that. Hot water apparently makes thr itchiness worse so Ive been showering with warm water to help that. The majority of the itching is on my scalp with itchy palms and then it comes in waves all over my body. Sometimes it’s very itchy and other times it goes away quickly. Have been using the same soap for many years too so am sure it’s not that. I peformed a google search for itchiness seroquel withdrawal to find ways to combat this. That’s where I found drinking water helped and a list of low/no histamine foods.

    I’m in Australia so won’t be able to find American products here. Or perhaps at Costco.

    Either way thank you! All suggestions are welcome in my view. Hopefully others can share their suggestions too.

    Lilo (not Lisa) xo 🙂

    • I personally went for sleep reasons to 12,5 mg for six months, then quit it. I think much of that sedating effect of low doses of Seroquel is because it’s a strong “traditional” antihistamine at H1. If the itching is too strong, maybe you can think of taking a very low dose, such as 12,5 mg, for some time, then taper down from there. I think 25 mg is the lowest they start Seroquel for any reason (insomnia, etc), yet I found out 12,5 mg was quite effective for me as well. That is, maybe find the lowest dose you don’t get itch, etc, then taper down from there.

      • And to repeat, I positively think all that itching sounds like some kind of a “histamine rebound”. I’d try to go down a bit slower with those mini-doses of Seroquel, it’s primarily an antihistamine at those 12,5 mg-25mg levels. If you itch too much, maybe your body is telling you’re going down too fast.

  60. Hermes, yes that’s what I’ve found. The last time I tried to withdrawal it was insane how itchy I got. My whole body was covered in nail scratch marks because nothing stopped the itching other than me scratching like crazy or if I was desperate I had to grab any sharp object to scratch with. My whole body had felt like it was on fire when it started itching. Last time I went from 150mg to 0mg in 2 weeks as per instructions from my pdoc.

    This time around I tapered properly with advice from my GP and to be honest this time the itchiness is much more subdued. I can actually deal with this but at some point during the day where I have forgotten to drink water the itchiness comes back. It’s more annoying than anything and I have made the choice to not go back to Seroquel. I can’t seem to successfully cut the small 25mg in half anyway (believe me I tried!)

    Am wondering if anyone has been through this itching after Seroquel and how long it lasted for?

  61. Thanks, Nancy. I’m currently looking into the paleo diet myself and switching all my food to organic to see if that helps. Apparently most preservatives, fermented and food colouring and additives produce histamine in the body so am trying to keep these to a minimum.

    I had eye pain the last time I stopped taking Seroquel too. That coupled with the migraines were a killer.

    How long did the itching last for you, Nancy?

  62. Dear Nancy,

    Terribly sorry for what you have gone through that landed you on Seroquel. I myself am on Seroquel XR; taking a grand total of 300mg per night. Having at first been on Abilify, I was then switched to Seroquel (then off it for another medication, and then completely off medication for a few months only to be put back on Seroquel). Reason that I’m on it is because I’ve been diagnosed with Schizo-affective disorder. (Not a fun diagnosis, I’ll tell you that. Cut out several carrier choices I had.)

    The unfortunate thing I face with Seroquel is that if I miss just one dose, I experience the withdrawal symptoms you have faced.

    I am looking to address this issue with my psychiatrist – yet again. But I was just wondering how one would cope with the withdrawal of Seroquel as you feel the effects?

    I’m horrible at remembering if I took it that night or not, as bad as that sounds. By the time I feel the withdrawal symptoms it is already too late to take the Seroquel – as far as I know, due to the fact that it tells you not to take the missed dose.

    This has truly confused me for quite some time. I was never able to get a straight answer other than ‘just deal with it’ from my multiple psychiatrists I’ve had over the past four and a half years.

    So, I ask, is there any good way to cope with the massive anxiety, insomnia and stomach pains from a missed dose driven withdrawal?

  63. Hi Nancy,
    I am glad to revisit this site with so many responses regarding seroquel withdrawal. It’s me, Shirley. who has been e-mailing you re my experience with seroquel. The reason I stopped searching and trying is that I feel hopeless trying to come off with seroquel given my situation- 2 small kids, being the breadwinner, etc. I need the meds to function at work but I feel I’m not myself. I have almost succumbed to self-pity again because of I just feel I am a hopeless case. I understand now why so many people chose to stay on the drug because they feel that they have no way out.
    I have almost quit the drug successfully but like Liloisabride, I reached the point when I can feel everyone in ,my household sleeping and I’m the only one awake. The frustration that sleep evades me. For a while, I thought it’s only sleep that’s going to be the problem but the panic attack came back big time. It took me 3 months to go back up to 200 mgs of seroquel and 45 mg of Mirtazapine to function again.
    Reading these posts makes me wonder how many people out there have successfully weaned off from this terrible drug. I’m afraid to try coming off again because I have to function to my family, now that I’m able to drive again to drop off and pick up my kids.

  64. Hi, I would rather not take the drugs and not sleep. I have not had a good night’s sleep in three years, not at all. I sleep an hour if I am lucky, but even that is not solid sleep. I don’t feel that this is due specifically to Seroquel but to the multitude of antipsychotics given to me over a three-decade period. I went to them in 1981 and 1982 completely desperate for a drug for binge eating and never asked for anything like an antipsychotic. I wish they had at least LISTENED. I had to jump through hoops to get them to understand that eating disorders were serious, so they decided I must be “faking mental illness.” That, they said,was a “personality disorder.” This was before Feb 1983 when Karen Carpenter died. They gave me Thorazine only because they figured I was a spoiled rich Jewish girl, and maybe if they gave me the pretty orange one, I’d believe they loved me and cared for me after all and I’d go home happy. But the pretty pills didn’t cure my eating disorder.

    At one point they had me taking three antipsychotics simultaneously, all at maximum dose. I believe that went on for a few years. I have no clue what warranted this. I was never manic nor psychotic, nor did I “need” these drugs for any so-called “off-label” use…maybe they thought my skin needed more color in it, so they WANTED me sunburnt? Why not get out some red paint…. Or did they WANT me pacing from akathesia all the time? Geez. I guess they really want us handicapped. Maybe the smart patients scared them or they felt threatened by us.

  65. Hi everyone, I’d like to share my experience with this medication and my eventual recovery in hopes of maybe helping at least one individual needlessly suffering from this brain-disabling toxin:

    I’ve taken Seroquel XR 100mg for 6 years to treat paranoid schizophrenia (with multiple horrific relapses), but have now been off for a year and a half. My life drastically changed when I happened to pick up a book by Dr. Abram Hoffer, MD, PhD where he achieved amazing cure rates by utilizing very large doses of Niacin (vitamin B3) and vitamin C. Over a period of a month I titrated up to a dose of 7500mg Niacin and 3000mg vitamin C and after 6 months got off Seroquel by titrating it 100->50->25->12.5 over a two month period. Initially I thought I was fine except it took me rather long to fall asleep. As the months went by the sleep latency increased to the point that I couldn’t fall asleep until about 6am, but even then I was still able to get about 5 hours of sleep. Then after about 6 months being off Seroquel my insomnia got so bad that I routinely went two nights without sleep and I was lucky if I slept just 3 hours. What finally resolved the insomnia was going dairy and gluten free, reducing my homocysteine levels by taking vitamin B12 + folic acid + betaine, and reducing bedtime cortisol with holy basil. I found it remarkable how a simple herb (holy basil) was able to knock me out within a few hours after taking it for the very first time and now consider it a life saver.

    I am now considered recovered, enjoying life like I’ve never enjoyed it before, working full-time, and actually have a social life. I cannot recommend it enough for the reader to read up on orthomolecular medicine, but you need to go to the actual literature (in my experience google is useless when researching this): https://www.csom.ca/category/journal-of-orthomolecular-medicine/. Some fallacies floating around are that Niacin causes liver damage, which is only partially true: only the extended-release form has been shown to do this. Also try to find a qualified orthomolecular doctor since its impossible that you can read all the literature.

    My current individualized supplement protocol (by an orthomolecular physician):
    7500mg Niacin (as nicotinic acid), 3000mg vitamin C, 10mg sublingual methylcobalamin/B12, 1mg folic acid, 1500mg Betaine/TMG, 15mg zinc, 2mg copper, 2000mg EPA + 600mg DHA fish oil, 8000IU vitamin D, 1500mg Holy Basil (10:1 leaf extract), 480mg magnesium glycinate, 550mg calcium hydroxyapatite, 6 potent multi vitamins.
    Warning: this is highly individualized based on many blood tests and actually may harm you.

    For those who think I didn’t have schizophrenia all along, think about this: I had 2 major relapses with auditory hallucinations (voices), severe delusions thinking I was an alien put on this planet to “rescue” humanity, severe paranoia of the “illuminati that controls the world and wants to kill me”, etc… Between those 2 major relapses were several (about 6) smaller ones which included severe delusions but without auditory hallucinations. I was diagnosed with paranoid schizophrenia by about 8 different psychiatrists on separate occasions, including one that was court ordered.

    • Regarding the journeys into madness: quite a number of persons have spoken about the brain as a filter. William James and Aldous Huxley for example. All radios are designed so that only one channel at a time comes through; were this not the case one might get two or three stations at once and a cacophony of voices and music. So one might conclude that these powerful drugs temporarily inhibit the filters–there are no doubt many. Once the filters are gone the normal world experience is penetrated by stuff normally automatically filtered out. Obviously the person like yourself is aghast at all this craziness coming in. And yet if you had mind reading ability which some people claim they have you would find all sorts of strange thoughts and ideas floating around in a city. Sort of like a private NSA going. And visual phenomenon as well. Each sense has a set of filters; and then the mind itself has them so that you do not find yourself reading other people’s thoughts. There may be times when you had wished you could but unless it can be turned off it can be a nightmare.
      So you can call it schizophrenia or split mind or whatever you will but the labels are rather useless and even sound frightening. I think it is best to simply see that the drugs clogged the filters up; and you began getting what anyone would get if their filter system was failing. This is the paragon case of the cure worse than the ailment. It is irresponsible medicine for money. The symptoms are similar to what happens with poison and severe head injury . . . and keep in mind the food supply in America is doing something slowly and similar. And the water and the air. When the limits are reached the body goes into emergency behaviour, and the mind has its share of ordeal.

      So without this drug experience you would never have discovered other aspects of the world. In this case frightening but then mystics tell of beautiful and ecstatic experiences which are likewise outside the filter though in their case the filters are removed as part of natural development and not as part of a drug experience.

      You have provided very valuable material.

    • Hi John1,
      I have a few questions regarding the story you shared. First of all, would you share how you were able to find an orthomolecular MD? Is he/she a psychiatrist or a naturopath? If you can mention the name, it would be helpful for the rest of us who are seeking reliable MDs who are willing to taper patients from psychotropic drugs.
      Aside from that, was it expensive on your part and I wonder if insurance will cover that cost. What other psychotropic drugs were you on while weaning off from Seroquel?

      Shirley

  66. Hey, thanks for the response.

    There are almost no orthomolecular MDs, and if you do find one then be very skeptical; I know of only one but they retired their medical license. I am under the care of a naturopathic doctor (holds a 4-year ND degree) who specializes in the orthomolecular treatment of mental illness. The drug tapering was not MD supervised since I don’t know of any MD that would recommend this given my past schizophrenia. Usually what happens is after your ND sees major improvements they call or write to your prescribing MD to request tapering, but this correspondence is seldom fruitful. When looking for an orthomolecular doctor keep in mind that even naturopathic doctors are totally ignorant of Dr. Abram Hoffer’s use of niacin and vitamin C, but a good starting list is http://orthomolecular.org/resources/pract.shtml. Be sure that at least they hold an ND degree and have several years of experience.

    I don’t want to comment on the exact cost since, in my opinion, you can’t put a cost on health. Think about it this way: the amount of money lost due to unemployment compared to the relatively little amount needed to recover and work full-time. In the US my health insurance was able to pay about 60% of the laboratory tests. Also I wasn’t on any other drugs when withdrawing.

    One complication that can happen during withdrawal is tardive dyskinesia, so I took 30mg of chelated manganese (divided in three doses) to prevent this. See http://orthomolecular.org/library/jom/1976/pdf/1976-v05n01-p004.pdf for further details on the use of manganese to not only prevent TD but possibly reverse it. I also used a potent extract of ginkgo biloba.

    I really do not recommend anyone try to treat themselves without the guidance of an orthomolecular doctor. For example, if you take megadoses of just Niacin and vitamin C without any other supplements you can increase your homocysteine to dangerous levels (there is no definitive proof on this due to lack of studies).

  67. Honestly, Dennis, if a med made me restless like I couldn’t sit still, I sure wouldn’t want to stay on it. They end up giving you more pills for the intolerable side effects. Or you go nuts dealing with the horrible side effects and get ridiculed while out in public. What if you went to the movies or to a restaurant or had to sit on a bus? You couldn’t! I lived like that for years. It was so handicapping to have to deal with the side effects, and getting poked fun of all the time was terrible. I ended up with permanent damage to my body from the drugs. From what I’ve know, there are safer alternatives to psychiatric drugging, but sorry to say the psychiatric regime sure doesn’t want you or me or anyone to know about anything THEY can’t make loads of money from. People don’t even realize a simple thing like eating certain foods will change the way you think and feel. Your living situation might need a change, too. I know this sounds like “nothing” but guess what I discovered? Having a light-colored floor makes a world of difference for me. I lived with a floor that was dark and honestly, if your floor is dark-colored, change it or cover the entire floor with a light-colored rug. You will be amazed. Doing that will change your life more than any pill. Get outdoors, and if you have no motivation, a dog might nag you enough to get you outside. Go out often, and your life will better. If you choose not to even start psych meds you won’t have to worry so much about sunburn risk, and you will wonder why doctors didn’t tell you about this to begin with.

  68. Hi Nancy,

    Do you have any tips for how to maybe prevent photosensitivity while withdrawing from Seroquel? I know of someone who is experiencing eye pain and, even though they don’t seem to care much, it really concerns me.

    I know that the Seroquel XR tablets cannot be cut or crushed since this destroys the extended release formulation (the tablets are layered like russian dolls). So you need to first switch over to the immediate release and, to be on the safe side, taper by 10% very slowly depending on how you feel.

  69. Hello. I guess everyone’s different. Many of my drugs I had to get off of on my own due to, I suppose, my doctor being unavailable to me or just plain negligent. Yeah, I tried finding other shrinks but to no avail. I was so isolated, with no resources (such as MIA) to turn to. I’d say of all the substances I’ve gone on and off, Seroquel was one of the less offensive to get off of. I think that’s because being on it was PURE HELL and I was surely glad to get the stuff out of my system! I felt my body breathing a sigh of relief. From what I recall, my lovely shrink switched me to Thorazine and everything was okay…not for long….the sunburn from Thorazine was more than annoying at my age, even in winter. I developed TD. So, still believing my doc was God, I told her and thankfully this time she didn’t claim I was delusional about the TD, cuz maybe I would have believed that, too. She tapered me off Thorazine…oh, then I had TD from Risperdal! So she cut that dose from 6 to 3. I recall for a long time she had me on three antipsychotics at once, and these, she claimed, were “necessary.” Finally, I was on 3 mgs Risperdal daily and 20 mgs Abilify. I was at a prison/ER where they forgot to give them to me for a number of days while I was forcibly detained there. I walked out and decided the heck with it. No more antipsychotics. Today, I’m not dead. Not thriving, but if I were taking those drugs today…naw, I wouldn’t even be alive had I stayed on them! I am relieved. Alive is good.

  70. Hi, i have autocorrect & auto capitilization turned off on my phone so disregard my typing. My name is Rachel, I’m 19 and I would like some help… I have been taking bipolar medications for only 3 years. But i’ve run into serious problems, at 16 i was first prescribed Seroquel mainly for the reason of its side effect of sedation since i am an insomniac. I believe i started at 300mg and my mood swings were still out of control, but on the plus side i was actually sleeping at night. My psychiatrist increased to 600mg & for a long time i was okay, i was still slightly manic but it wasnt nearly as bad as before. I stayed with it & i regret the day i ever took it. I complained to my psychiatrist that i was feeling tired all through the day & since starting cosmetology school i couldnt be tired all day. He suggested Seroquel XR 900mgs & i took if for about 6 months & wanted to switch back for a reason that i cannot remember. i had quit cosmetology school & now here i am back on regular seroquel, my mood swings are worse, i’m more violent than ever & i’m scaring others that are close to me. November of 2013 I beg to be taken off of seroquel & put on something new, something that won’t make me crazier. He puts me on celexa, no weaning off of seroquel he just advised me to take what was left (about 5 doses) & cut them in half & then start the celexa. so i did… that was the worst week i have ever had. I really thought i was going to die. once all the seroquel was gone, i was back, my boyfriend swears he saw the devil in me. i don’t even know who i was that week. not to mention the withdrawl, oh my god the withdrawl. My stomach pain, vomiting constantly, the dry heaving. i couldnt eat a speck of food for 3 days because i was gagging from everything. i want some water, oh gotta throw it up. everything that hit my stomach my body rejected. remember, i cant naturally sleep. here i am every night for a week up all night just starving. i couldnt eat & i couldnt sleep. how could it get worse? the mood swings. i wont even talk about them. that week was terrible the agony of the withdrawl of this stupid medication is HORRIFYING. I was stuck taking celexa with no seroquel left, i remember screaming for it, i needed it. i couldnt see my psychiatrist for another 2 weeks. when i finally saw him & explained he put me on lithium, at my request, and just 50mg of seroquel a day “to help me sleep” please we all know the real reason why i have to be on this measly amount of seroquel. my body needs it and i cant make it go away. i want it to go away. i dont want that pain to come back but i feel as though i’m addicted to this tiny pathetic pill. my psychiatrist wants me in therapy to help me but i cant pay for it since losing my second insurance. i have to pay rent and all those little expenses i dont need another one. i didnt take my litium today. its a first. i dont know why i didnt. i think i want to stop. but of course i took my seroquel. i’m chained to that bottle and i just don’t want to feel like that anymore.

  71. Hello, thought I’d check in. I was in psych hospitals over 50 times and saw so many different people going through stuff. To my recollection, psychosis is almost always brief and the worst of it is over in a flash. Diagnosis is for life. Therefore, patients stay on drugs for decades not even realizing that they are being given drugs for something that happened to them in their youth. They are told that they are permanently this way, and end up thoroughly convinced. Now on drugs, every time they try to get off they get a terrible reaction. This leads them to believe those god-doctors must be right, that they have a lifelong disease. No, this is not true. They are stuck with a lifelong diagnosis. Of course I fell into that trap myself and I am glad I got out of it.

    As example, here’s a story I love to tell: A guy I knew had seizures when he was a teen. He was put on anticonvulsants, and told this was “probably hereditary.” He wasn’t told much else. So he decided he never wanted to bring a child into the world who had epilepsy. As a young man, he had a vasectomy.

    He ended up in a new job, and had to switch doctors. His new neurologist examined him, did the tests, then said, “You can get off the anticonvulsants now. Gradually. I believe you are seizure-free.”

    The young man said, “Wait a minute. You mean this isn’t for life? You mean to say this was only a brief incident?”

    The doctor explained that these sorts of seizure disorders that the young man had tended to be caused by raised hormones during adolescence. “It usually passes quickly,” said the doctor.

    The young man was distraught. He realized he’d made the wrong decision and now he couldn’t have bio kids. He fell into deep depression. After all, he was at his prime mating age, and yearned for a partner.

    He felt that his life was over. He decided to see a therapist because he feared he would take his life. Thankfully, this wasn’t one of those abusers who tell people they have a disease without even looking at circumstances. She was practical-minded. She listened to his story, then said, “You know, a vasectomy can be reversed.”

    And then she said those words every human on earth should hear. “It’s not forever.”

    The young man’s vasectomy reversal was successful and he never had to see a therapist ever again.

    Shall I write a moral to this story? #1: it’s not forever. #2: Don’t believe everything you hear. #3, Doctors aren’t gods. Don’t let them run your life.

  72. Hello Nancy & All others Effected by this monster made into small pill form,

    First off let me start with. I had worked as a RNFA for 8-9 years. I think( thought) I knew a decent amount about meds,pharamcology?? So I would make a huge long post. Well Ill try not to. To start I was in a car crash. Fx Hip @ 25 y.o.. They prescribe TONS of narcs. Obvi I get addicted to oxycodone. Wonderful. Now Im a addict. So I stop that and am prescribed Suboxone (great drug) also addicts CANT sleep. . They prescribe SEROQUEL. . It worked!! great I was sleeping. Wonderful.. FFW a few months later. . Im a compete zombie. I sleep ALL DAY AND ALL NIGHT. I have gained 50+ lbs in about 3-4 months. I beleive I was on 200-400mg a day. . I was done. my BP was high Chol. high. I felt unhealthy and Ill. . I just dumped all the pills in trash. I know DX meds abruptly was a bad choice.. I had no other option weaning off for an addict is like waiting for Santa Claus…. We dont get portion control. So now its been about 7-8 months from the stopping Seroquel. I had a really rough few weeks after I stopped. I lost about 1-2 the weight I gained which is great. I could lose the rest with accurate diet and MORE exercise. . The thing thats KILLING me. I CANT focus EVER.. I will look at something and try and read a book or a few pages and my eyes close or I get distracted and lose interest in reading. Im ONLY 34. . I need to still focus and read and learn. . Also the second and MORE scary thing. I hear voices. Its not like schizo voices. Like KILL KILL KILL…. Its just like a second sub conscious… Sorta arguing in my brain with my normal brain thoughts. Its like a devils advocate I have at all times. I feel like a freaking looney bird. Having legit arguments in my mind WITH MYSELF… I dont want anymore drugs. I just hope these side Effects subside SOMETIME….. IDK what to do. Im VERY happy I found this blog. Maybe you guys are my new inter web family?

    Thank you kindly for reading and possible advice.
    From Nancy or anyone with common issues_ side effects!

    Thanks
    DV

  73. You click on the little box in the bottom. Scroll way down, and then put a check mark in the box and that will subscribe you to the thread!

    I wanted to add to the trauma bit. I saw on You-Tube a presentation on trauma given by a Native American leader. He stated that some people think of trauma as being one or more of the following:
    1) A one-time traumatic event
    2) Trauma that happens repeatedly or continuously over a long period
    3) Generational trauma.
    I hope I am restating this accurately as he presented it. At any rate, cultural/generational trauma is something many people don’t take into account. The presenter gave examples. Many people in the USA grow up within the cultural heritage of once having been slaves. I am a Jew, and many of my relatives were subjected to the Hitler’s Holocaust. Some were in camps. My late boyfriend was Irish-American and with that came much inherited cultural tragedy as well. the person in the You-Tube stated that the cultural trauma is quite evident on the reservations. This is quite understandable to me, how a kid can grow up with persecution either directly experienced or in their lineage. I can recall going out on my own in the neighborhood, maybe I was 4 or 5 years old, and being told I was a bad Jewish girl who killed Jesus. It isn’t painful for me to think about now, so don’t get me wrong, I am not falling apart over it at age 56! I wish that when I was a young girl the people around me had given me more opportunity to ask questions. Why is this happening? Why am I teased in school so much?

    I believe my present lack of “people skills” probably stems from this. I’m not shy. I just “blow it” a lot. Lacking in people skills isn’t a mental illness, contrary to what the shrinks thought.

  74. Nancy, I have never seen a “mental illness.” I did, in fact, mean “so-called.” I thought that in these circles, this is a given. I only meant to say that all “crazy” behavior can be explained rationally. People do things that may seem strange to others, but each and every time, there’s a real-live explanation. I think people shouldn’t be locked up for doing or saying things others don’t connect with. Instead, DOES ANYONE EVER ASK WHY? No, they lock us up and take away the key, and then tell us that because we are pissed off, we have a very dangerous mental illness. I believe that those that aren’t pissed are brainwashed. I was brainwashed myself for a very long time. At this point, I’d rather see life as it is than life through a hazy bunch of platitudes. “This is treatment. Come play Bingo!” Baloney. It’s slavery.

  75. I agree with Nancy. After being trapped for three decades in the MH system, I learned the ones that claim to know “all about” anything are going to disappoint you. If they say this, they generally are either total dishonest quacks (degree or no degree) or they have a rather overblown opinion of themselves. Or they have book learning only and no idea what we go through. The best ones, across the board, will always answer “I don’t know,” when they don’t know. If they know, they will share their knowledge and be upfront. A good one, if he or she doesn’t know, might hold off before acting, so that they can consult with a colleague. As for quackery, don’t let the degree fool ya. My worst therapists were indeed licensed and held master’s degrees such as social work or counseling. Every single therapist that I saw who claimed to be an eating disorders specialist knew very little about ED. My friend said his only good therapist knew nothing about ED but worked her butt off to learn so she could help him. I think it’s fine to see someone with no degree at all, but only if they say, “I am not licensed nor do I have formal training.” If they can help, why not? If they fake that they have training and don’t, they should be reported. A good friend is worth gold. As are supportive siblings or parents. Love, in fact works wonders. A person close to you can give you good feedback, such as noticing twitching or the dreaded “tongue thrusting” (I hate that expression). By the way, there are TD experts out there, but I am not sure they’ll be supportive of going off meds.

  76. I’m honestly living my worst nightmare. My shrink told me “this is who you’ve always been, you just didn’t know it.” Really I am in acute benzo withdrawal trapped on two other psych meds. He didn’t know me before I was cold turkeyed off of 1.25mg of klonopin. Now he knows this is “me” even though he didn’t know me before this.

    I knew better about the pitfalls of klonopin but thought short term low dose use would be ok. Wrong. Wonderful detox yanked me off the klonopin and placed me on Seroquel, Neurontin and Remeron. How it makes sense to take someone off one med and place them on three “nonaddictive” meds. The most bogus term in psychiatry is “nonaddictive”. Meds more dangerous than illegal drugs. With sometimes long lasting and permanent withdrawal problems.

  77. Hey Freyley, it makes me so sad when shrinks claim to know us better than we know ourselves. People change from day to day, year to year. Only shrinkage refuses to consider this. The whole premise is harmful. Why some humans are insistent on having power and control over others is beyond me. Julie and Puzzle

  78. I know many who are fine now, Frehley. The shrinks use scare tactics that aren’t even logical. I know every time I even asked about getting off a med, saying the side effects were disabling, my shrink said she wouldn’t let me go off it, threatening that I’d become “unstable.” She even said I was “deficient in antipsychotics.” They will say this, but it’s baloney. The side effects were more disabling than were the reasons I was put on it! As is the case for many people. A baby is born needing three things: Food, warmth, and love. Not antipsychotics. If we start having problems while you are withdrawing they tell us we “need” the drugs. Don’t buy into it and remember everyone’s experience is different. Someone on heroin who is withdrawing experiences withdrawal. They aren’t deficient in heroin, are they? Their bodies say, “Gimme a fix,” but that’s because their bodies got used to it.

    And if you are wondering….I was once on three antipsychotics at once, at highest doses, and this went on for years. My occupation is writing. Yes, I can still write off meds. I write more than anyone I know. Much as I complain, I am doing super, to tell you the truth. I’m going back to college in January. And I just wrote that.

  79. Thank you both for your kind, well thought out responses. I’m terrified I won’t have the face to face support to survive these tapers. I feel I’m never going to escape the clutches of psychiatry. Benzos ruined my life and being polydrugged scares the heck out of me. As you know there is no real support out there for this. No program or place to go. Just looking for hope.

  80. There’s an awful lot of generalization and demeaning comments on this page. I stumbled across it hoping for information on what side effects patients MAY experience if they are stopped from Seroquel abruptly. Instead, I have found extremes, not necessarily related to psychiatric medications, and a whole lot of hatred towards doctors.
    As in all professions, there are good and bad. It would be unfair of me to call all auto mechanics idiots when the mechanic who changed my brakes didn’t fix the problem, and then praise “the only smart and honest one” who found the bearing problem and actually fixed the squeaky wheel. I could analogize all day long, especially about well meaning green/granola/naturopathic/herbalists/etc. who prescribed me some supplements which caused the side effects of severe GI distress, dehydration due to polyuria and sent me to the hospital for fluid boluses. I have no hatred or disrespect for them, as they were trying their best to treat a concerning issue I had at that time.
    Psychiatrist treat those who want help. Given that the author lost family to depression and suicide, the physicians probably had good concern to treat her with medications. After all, had they not, and had she harmed herself, they would be pursued mercilessly by her family for financial compensation due to the doctor’s “stupidity”.

    What I have learned is that each body is unique, and they all react differently to different medications. Not all side effects occur, and not all potential side effects listed are necessarily related to that drug. Spreading misinformation, in an attempt to terrify people away from medications that can be life saving is irresponsible and misguided. Many of the patients I see have few to no side effects from their medications and they feel that the medications, used appropriately, have saved their lives.

    • sleves,

      I give you credit for doing research on what side effects patients may experience when CTing Seroquel. But if you don’t know this as a physician ahead of time that no one should ever CT a psych med, I find that quite shocking to be blunt.

      By the way, this site may be too antipsychiatry for you but if you really want to help your patients and not cause them harm, you might want to look at this thread on tapering Seroquel.

      http://survivingantidepressants.org/index.php?/topic/1707-tips-for-tapering-off-seroquel-quetiapine/

      Regarding people being angry on this site, let me ask you this question. If you had a patient who was raped and expressed hatred of all males, would you condemn that person for being angry? Obviously, the answer would be no.

      Many people on this site have compared forced medication to chemical rape. Even if you think this has some benefit, can you at least see why people being forced to take meds have caused horrific side effects would be angry at doctors as their concerns were blown off?

      By the way, you unintentionally sound like a physician who never believes a patient about side effects and blows off their concerns. I hope I am wrong but that is something you might want to work on because all of us can’t begin to tell you how devastating that it is to not be believed by doctors.

      • I do believe patients when they complain of side effects, and our team works on finding a medication that works for them – if they want to be on any meds at all. My opinion is that if you can do without medications, then that’s best. That goes for anything, including treating diabetes, blood pressure, etc.
        A lot of what can help patients who find their way to psychiatrists would be really good therapy, or even a full time life coach, but that’s rarely available to the patients we see. Patients ask psychiatrists for meds to help deal with negative emotions, and there is a scientific basis for believing that mental illness is actually an abnormally functioning brain, and that the medications used can help to treat that. Unfortunately, medications cannot change how people think about things, and usually that is the reason seek help. Negative thoughts = negative emotions. When people get stuck in that loop, the idea is that meds can help out – not cure you. They never cure anyone.

        I cannot tell you how many patients come in asking for benzodiazepines because of stress or what-have-you, and our team NEVER writes for these drugs unless someone is coming off of alcohol. I believe that 99% of the usage of drugs like this only worsens a patient’s situation. I’ve never met anyone who is actually doing better on years or even moths of Xanax, Valium, Klonopin, etc. They are depressants. If you want to talk about an industry that profits on altering peoples minds and causing societal ills, then you should start with the industry of adult beverages. Alcohol is naturally occurring in nature, and it’s more damaging than psychiatric drugs in my opinion.

        I’m sorry that people feel “raped” by their treatment, but that’s not every doctor, or therapist, or NP/PA. And to comment on the idea of blaming a female who was raped once and hates all men, of course no one would – but if you flip that and say that all people of a certain race/religion/culture are all bad because a single individual hurt them in some way, well then, the problem is with that person if they still haven’t worked through it years later. Its a normal biological and psychological reaction to be gun shy from any bad experience, but it’s still bigotry.

        I hope that everyone is able to find a doctor/treatment team who respects their opinions.

    • sleves

      No, psychiatrists do not just treat those who want help. Many psychiatrists pursue careers in which they are allowed to control the lives of tens if not hundreds of people. Allied with the legal system they force people to take the so-called “treatments” that actually cause the problems that they’re supposed to correct. Duh!!! How convenient is that? Talk about doing something that assures that you’ll always have work!

      I work in a state hospital where about 20 psychiatrists control the lives of 230 people at a time, since that’s the number of beds available in this particular hospital. Of course, you have to multiply this many times over since we have a constant turnover of patients, many of which are “repeaters”, some of them admitted 20-30 times. People do not get out of this hospital until they comply with the “treatment” that the psychiatrist force on them against their wills and the only “treatment” available to them are the toxic drugs. Many are released out into the community and into forced treatment.

      Don’t sit there and tell me that most psychiatrist do not force people to do things against their wills. You and I both know that this is not true. I must echo the words of Nancy above, “forced psychiatry is the norm” period, no matter what you want to claim.

      You may not force treatment on people but so many others do. Yes I am angry as hell about all this since I’m a survivor and work in the very “hospital” where I was held and I have to watch on a daily basis while wonderful psychiatrists destroy peoples’ lives. “Forced psychiatry is the norm”.

      • I have worked at over a dozen hospitals, all over the country, and none of them practice the way the way it is made to sound here. Nor have I met any doctors who go into psychiatry to get their control freak/sadistic kicks by tormenting people. I’ve met hundreds of doctors, by the way. Getting into medical school is too hard just to practice mad scientist on people. It’s easier to be your run of the mill sociopathic cult leader. I don’t doubt that there are bad doctors and bad ways to practice, but to generalize is totally unrealistic. Unfortunately, all of the patients that feel their lives were saved by mental health professionals don’t post their good experiences. And I’m sorry you feel that you were force fed meds, but unless you are a danger to yourself or others, no doctor can force you to take meds where I’ve been. You have legal rights, and the right to appeal your forced hospitalization.

  81. It is very unfortunate when psychiatry’s minions and enablers pontificate and post their infomercials for biopsychiatry without doing the tons of research and homework by many MIA members of the real experts who have not been corrupted by Big Pharma or APA guild interests.

    I also suspect that some supposed psychiatric “patients” extolling all the supposed life saving benefits of psychiatry while denying/ignoring the huge harms made clear in The Physicians Desk Reference, patient inserts, billion dollar law suits against Big Pharma and FDA black box warnings sadly after much harm has been done are really psychiatrists or other “mental health” experts and cheerleaders for the biopsychiatry/Big Pharma Mafioso cartel exposed in the great book, Deadly Medicines and Organized Crime.

    As some main stream psychiatrists have found, most MIA members are all too well informed to be so easily conned and manipulated by such guild cheerleading for a very broken, harmful paradigm that is biopsychiatry.

    • Minion? No. Big pharma can try to win customers (docs) to write for their drugs, but if you have the chance to go to any responsible physicians office, and watch their prescribing practices, you will see that no amount of free dinners will make them write for a drug that doesn’t work.

      Biopsychiatry is still a big area of unknowns. The people trying to use their understanding of mental illness and apply treatments to it are not a group of fools. They are very educated, and driven – often a lot of them who lost family members to mental illness or who suffer from it themselves. They are trying to do their best. These are professionals who see dozens of patients every day, and are able to learn from each patient as to what works and does not. You can read all the printed literature you like, horror stories from SUBJECTIVE internet sites, but most patients don’t experience the things that some of the members here seem to have. No one can tell me that treating people with mental illness by using drugs is a bad thing. I could list dozens of patients I’ve worked with personally, who’s minds have betrayed them, and only medications bring them back. Try to tell families of schizophrenic patients who have killed family members, lit themselves on fire, and then tried to disembowel the surviving family with their owns hands, that you are going to take the patient off of medications. It’s not going to work – even with a full warning of side effects droned out to them.

      • And Donna, although they are not personal attacks, using words like “minions”, “enablers”, “pontificate” & “infomercials” when referring to people who wish to give their side of an argument is more than a little excessive. I get that you are upset, but implying that only unintelligent people do not agree with the feeling of MIA members is untrue. I’m not claiming to be intelligent, by the way, but professional researchers and scholars have done research, which is not the “tons of research and homework (done) by many MIA members of the real experts”, and they feel psychiatry is a worthwhile venture..

        None of our psychiatric patients (yes, they come to us forcibly by law enforcement and WILLINGLY) “extol” anything. It is with humbled thanks they express their appreciation for our HUMBLE attempts at healing them. This is even after we explain the risks of side effects found in “The Physicians Desk Reference, patient inserts, and billion dollar law suits against Big Pharma and FDA black box warnings.” I am a cheerleader for our patients, not for big pharma or the evil, untenable entity that is supposed to be modern day psychiatry.

        I am willing to read Peter C. Gotzsche’s book about big pharma, but I do not have $40 to pay for it. That is an unreasonable price for any book that is not being used as a college text.

        • How about something cheaper that gets straight to the point. AskaPatient.com. Take a look at the testimonials of people who have been taking the drugs themselves. Since this post is on seroquel, lets take a look at the 1346 ratings it has been given… http://www.askapatient.com/viewrating.asp?drug=20639&name=SEROQUEL

          There are certainly a number of folks that extol its benefit- but literally hundreds and hundreds of folks that describe horrendous reactions to this drug. How many people are told that this is the type of experience that could very well happen for them…here is a sample…

          “All Delusions, hallucinations, sleep, dry mouth, weight gain, overactive libido, mood swings Over confidence all side effects. I am 100 days free of this dangerous drug”

          “This medication did not really help me at all with my problems and it very possibly may have completely killed my reproductive function. I am currently waiting to find out if my body will ever recover, it has caused me to gain weight, develop breasts, varying levels of sexual dysfunction, it has damaged my blood sugar levels, and I may have completely lost the ability to procreate. There are over 10,000 law suits filed against AstraZeneca for things like this and I may be another soon, I implore you to research the rare and serious side effects before taking this in my experience worthless and dangerous pill.”

          “Just a bad over prescribed bad drug Went cold turkey, it cost me my life, it destroyed friendships, prescribed to shut me up, this drug is used as a catch all for any ailment, I would not recommend this for anyone, I’m working through insomnia and angst for not researching this drug, nothing will ever have me take this drug again, did not dose down did not tell my doctor, just left it along.”

          “Within days of taking this drug I developed Spasmodic Torticollis. Was in severe pain and still recovering the damage of what this drug did to me.”

          These are not just a small sampling. Reviews like these are extremely common there. Your thoughts?

          • Jonathon,

            May I add my experience with Seroquel? It made me get evil “voices”in my head within 2 weeks of being put on it. Thankfully, the “voices” went away once I was finally weaned off all drugs.

            And, sleves, as to you’re comment, ” They are trying to do their best. These are professionals who see dozens of patients every day, and are able to learn from each patient as to what works and does not.”

            Read this admission that psychiatrists are denying / not reporting the adverse effects of their drugs to Medline; and warning to other professionals that the patients are going online, and essentially, making the psychiatrists look like fools:

            http://pb.rcpsych.org/content/29/6/219.full

            “Medline returns no reference to ‘brain shivers’ relating to antidepressant use. In contrast, the search engine Google returned 3100 ‘ hits’ for the term ‘brain shivers’ on 1 November 2004 (http://www.google.com).”

            “Although the aetiology of ‘brain shivers’ and other associated descriptions remains uncertain, it serves as an introduction to the web as being an indicator of many patients’ experiences of the drugs that we prescribe. We will undoubtedly see an increase in the amount of information being provided to our patients in this way without our control. We have to understand the implications of this, especially in relation to a group of people who, frequently feeling disempowered by ‘the system’ and by their illnesses, find solidarity online.”

            By the way, I was put on Seroquel because psychiatric practitioners, who claimed to “know everything about the meds,” were too stupid to know Wellbutrin, given for smoking cessation, causes “brain shivers.” My psychiatric practitioners thought antidepressant withdrawal induced “brain zaps” was “bipolar.”

            And those “trying to do their best” have misdiagnosed over a million little American children, according to the DSM-IV-TR itself, in a similar manner. Thanks largely, no doubt to the man who self professes to be “second only to God” himself, Dr. Biederman. And to cover up this malpractice, those “trying to do their best” have changed the DSM5 so they may now claim this “iatrogenic pathway to bipolar” is not malpractice on a massive scale.

        • Selves

          Obviously you haven’t met the five psychiatrists who worked on my case nor the 20 who work in my hospital. Never once was I ever given any informed consent about the drugs that I was forced to take. I am often present at treatment team meetings and there’s never any informed consent given the “patient”. In fact, the psychiatrist whom I consider to be the best in the hospital laughed when one of his residents challenged him about not giving informed consent to people and then he asked the resident to show him one “patient” who would understand anything that he would tell them about informed consent. And this is the “good” psychiatrist! I feel that you are out of touch with reality where your profession is concerned. You may be one of the few good guys but just because you are and because you do the right thing doesn’t mean that the rest of your profession does what should be done.

      • There is actually solid evidence from more than one study showing that doctors rarely believe they are being influenced by pharma marketing reps, but that based on their prescription writing, they are in actual point of fact dramatically affected by these visits. It is hard to combat subconscious influences, especially if your pride prevents you from honestly asking yourself if you are being influenced, as appeared to be the case for most doctors. Bottom line, if it didn’t work to increase prescription writing, the pharmaceutical companies wouldn’t spend the billions they do sending these guys out.

        I also recall when I worked at a large mental health program how a client may have spent weeks or months getting onto a stable medication regime they were comfortable with, only to be required to change psychiatrists, and I’d say three times out of four, the new psych would change the prescription despite the client’s hard-won stability. Why would they do that, I wondered? It eventually occurred to me that each psychiatrist had his/her “favorite” drugs, and that it was more than possible that their favorite was at least partially determined by financial relationships to the manufacturer. Later research has shown this to be true – many practicing psychiatrists get funds in a number of ways from big pharma companies, and I can’t imagine it happening without a level of demonstrated loyalty from the psych. I can’t even rule out the possibility of direct kickbacks, but it wouldn’t have to be that corrupt to have an effect.

        I’ve worked in the system, too, and I’ve certainly seen people who did better while maintained on some kind of medication regime. But I’ve also seen people punished and humiliated for disagreeing with the doctor or demanding some more helpful treatment than they were receiving. And I’ve seen many people diagnosed with “bipolar disorder” or “ADHD” when they were clearly severe trauma victims, and I’ve seen many BECOME “bipolar” as a result of stimulants or SSRIs, but almost never see anyone stop the offending treatment to see if the symptoms will abate.

        There have been plenty of successful weanings off of antipsychotics, and the more enlightened psychiatrists of today (though few in number) are realizing that episodic drug treatment combined with psychosocial support and therapy is a lot less damaging to their patient’s brains and makes actual recovery MORE likely.

        You really should read “Anatomy of an Epidemic,” the book on which this site is based. It may slay a few of your sacred cows, but it may also open your eyes to the fact that not everyone finds these medical interventions as helpful as your somewhat biased sample reports.

        —- Steve

  82. Hey folks, want an update on insominia? I think I forgot to tell you. I had the worst case of insomnia of anyone I knew. I refused to take drugs for it and no herbal cures would touch it. I knew I wasn’t manic nor “nervous.” I didn’t have “overactive mind.” No way. I didn’t snore and I’m not overweight. No doctor in USA would even examine me physically. In fact, my last doctor insisted I see a shrink and didn’t even listen to my heart when I demanded he examine me to see what the physical cause for insomnia was.

    So…it was up to me to figure this out on my own. I was EXHAUSTED, as you can imagine. Three and half years of not sleeping. Oh, I’d sleep an hour but not really, just dozing mostly. I was certainly not manic at all, nor depressed. I was scared to try marijuana since I suffer from horrific binge eating to begin with. Others who have anorexia have told me that weed will set off a binge. So I’ve been warned to stay away.

    Please please please TRY THIS: Light therapy. I invented this based on research I read online. Get a cheap pair of amber sunglasses. Don’t break the bank. A ten-dollar pair will do. If you already wear glasses, get a big pair that will fit over your prescription pair, or get clip-ons. Don’t get UV-protection glasses, be sure what you get appears to be amber. The object is to block out blue light. You want to block out blue light after sunset every single evening until the sun rises. I’m sure there are expensive pairs on the market and I can assure you you are wasting your money.

    After sunset, no matter where you live, don’t use artificial lighting. This means any artificial light. Use candlelight. Don’t burn the house down. A fireplace is okay, too. A dim nightlight that isn’t halogen is fine. An incandescent with a lampshade will do in a pinch. Keep the lights as dim as possible at night so long as you are safe on stairs, etc. Hint: if you lose something, for godsakes, turn the lights on briefly to cut down on your frustration level (been there). Put your things where you can find them in the dark.

    If you insist on using the computer (if you are a student or writer like me), download a program such as freeware (f.lux, for one) which will automatically amber your screen at sundown no matter where you live. These guys are developing one for Android but say it can’t be made for iphone. Go out and get an amber plastic sheet and put it over your iphone. Discipline costs nothing. Sleep is priceless.

    During the day, get sunshine. Sunshine is free.

    How long does this take to kick in? Almost immediately. And as time goes on, you can reduce the dose.

    Side effects. You’ll be so glad you did it. You might ditch your shrink. You might lose count of sheep at 1,001. Your dreams might be so sweet you could get cavities in your teeth overnight. But then, upon awakening, there will be a little gift from the Tooth Fairy under your pillow. It won’t be a “med box.”

    Love, Julie and Puzzle

    • Julie, I like what you wrote, and agree with most of what you wrote. I also love the application f.lux. I think it’s awesome if you need to work late on. It changes the colours of your monitor so that the blue light is reduced when the sun goes down. The screen will look more like candle light.

      To test how well this idea works. Well, if you frequently use the computer late in evening, and you live in a part of world where it gets dark late enough. Install this program called f.lux to your computer. Notice how it changes the grades of the screen when the sun goes down. Use computer with those settings for an hour or more, browsing, writing, whatever. Then turn it off for a while in those settings. The computer screen is suddenly like sunlight to your eyes. I think this effect of blue light often affects the way the body words in different circadian rhythms, etc.

    • Julie, there’s just this issue:

      “After sunset, no matter where you live, don’t use artificial lighting. This means any artificial light. Use candlelight.”

      You know, here in very north, say Helsinki, at this time of the year the sun sets very early, say 15:00 or a bit later. F.lux starts setting the blue light off, I need to press it a couple of times to keep it doing it. The people in these northern parts of the world are supposed to work with eight hour work schedules throughout the year, just like the rest of the world. In even more northern parts of Finland, there are periods during the winter where the sun never goes up.

      So… If you happen to live in these more northern parts of the world, you can you “awakening bright light alarm clock (often with annoying bird sounds)” in morning. It might change your body to work a bit like when a natural sunrise would occur. I personally use one of those devices, and I’m quite happy with the results. When I get up for breakfast, I turn on a bright light which is somewhat similar to the light from sun.

      In a sense, I’m trying to follow a somewhat “natural” cycle in use humans. Where I live in, I like to use these other devices too, if I’m supposed to work in a modern work life as well.

      • Yeah, I have been experimenting with the “morning” bit myself. I live in the Southern hemisphere myself, so we’re in summer right now. Currently, it will turn dark very shortly. I’ve still got lights on and I need to stay up and write tonight. Come winter, I’ll need to use the computer at night. By then, I hope to have this systematically worked out fairly well. I have had the problem of “misplacing things” while stumbling around in the dark quite a bit. If this happens, the best thing to do is to avoid extreme frustration and turn on the bright lights very temporarily so you won’t spend hours trying to find what you’ve misplaced. I have colorblindness which means I can easily lose things when I don’t have bright lights on. It also means anything that isn’t brightly colored, say, obnoxious orange or staring-you-in-the-face yellow, I don’t see anyway. I am glad Puzzle isn’t black or she’d disappear on me! What I do is to label important things with post-it’s or obnoxiously colored duct tape. Also, in the dark you might drop glass objects. Be careful of that. I have metal dishes. I find these in the camping supplies section. This is a godsend. Just wait till you see the first electric bill. As for the mornings, I’m experimenting. I’m an early riser. I’ve tried turning on the bright lights before sunrise but have finally concluded that I prefer to wait unless turning lights on is preferable to the “crazy mad dash search for something worthless that wastes an entire day.” We’re all been there.

        I think getting away from shrinkage has improved my sense of humor.

        • Julie, yes, for this winter I bought an alarm clock which gradually increases the level of light over 30 minutes before the alarm. Also also have a designed “bright light” on after that for breakfast. It seems to help me keep my sleep rhythm during this darkest time and also keep me more active during the day. On the other hand, I’ve heard some people in even more northern parts, such as in Lapland, tend to live more slowly, “hibernating” during the winter months.

          During the summer it’s the reverse, in the middle of summer it doesn’t really get dark at all. When I was eating Ability, my sleep quality became quite bad and I was awakened several times in night. At those times, I had to use a blindfold the type you can find for airplanes during summer. I tried curtains that block light, but it wasn’t enough since some light always got in through some opening. These days I no longer need to do that at home, but they still really help when I’m sleeping in a tent during summer here.

          Diet can also make difference. I personally don’t eat much carbohydrates and try to avoid all sugar in morning and during the day, and get the energy from fat and protein. For me, this creates a more lucid, focused state of mind. The carbs I get from vegetables, etc. In the evening a may eat a bit more carbs. Carbs can have a somewhat sedating effect on me, especially since my body is used to much lower amount than average.

          In any case, currently my sleeping schedule is entirely different it was earlier. I had always been up very late and getting up in mornings was very hard. Now I go bed early and wake up early, after 7 hours of sleep. There are many other factors besides those mentioned in this shift, such as more exercise, less stress, etc, but in any case, I think it’s possible that sleeping habits and schedule can change a lot even without drugs.

  83. Sleves. are you not aware of what’s happening in the office next door. Do you keep your ears closed? Do you hear the talk in the waiting room or do you put in earplugs when you walk out there? Do you hear what your own patients say about abusive care at the places they stay inpatient? What do you tell them about abusive therapists? Do you tell them they are delusional and give them drugs, or do you take them seriously and report the abuse? What if I walked into your office and explained that when I stayed at a place inpatient, I saw night staff deliberately sleeping on the job while a patient in a room called out complaining of chest pain? Would you tell me I was delusional? What would you say to a patient who said they’d been beaten in an ER and his knee hurt? Would you give that patient Haldol, or a referral to physical therapy or an orthopedist? If I came in there and said I cracked my tooth, would you send me to a psych ER or would you send me to a dentist? What if your patient said a therapist had asked her out on a date? Would you tell her she was paranoid or would you report the therapist? Sleves, these aren’t hypothetical examples. These are out of my own life. These are my reality. I value my experiences and I can tell you that I have seen these things happen. When I got up the courage to do so, I blogged on my experiences, and I’d say I’m credible enough. I was called paranoid and they tried to lock me up because they couldn’t stop me from blogging and squealing on them. Now that I am safely out of the USA, they really can’t stop me. I have seen doctors and staff dismiss patients, dismiss me, ignoring abuse, neglecting their patients or even deliberately putting patients in harm’s way. This is medical reality. First do harm, then collect a nice paycheck for it. I am now collecting the recognition I am due.

    • I’m not saying anyone is delusional or that what they say happened didn’t. All I’m trying to do is tell other people on this website, who are not already disillusioned, that all doctors aren’t bad and that psych meds are actually helpful for people willing to try them. If they don’t work, then find a doc who will switch them and work with you.

      As to ignoring what happens next door and ignoring my patients, I don’t do that. If they have issues with abuse or mistreatment, then they need to report it. Our facilities take that very seriously. Or, report it to authorities and then it’s in the laws hands. What you describe as a nurse ignoring a heart attack I can’t speak to, but either that is a bad nurse, or something else that you may not have realized was going on. I know you can only base your opinions on your own experiences, but this is a large world and many people in it – most of them happy with the care they have been given. Seeing thousands of patients with our treatment teams have given me a totally different view that yours and I think that it’s also worth sharing

      • Sleves,

        I stongly urge you to read Dr. Philip Hickey’s posts here and more completely on his web site, Behaviorism and Mental Health, whereby he exposes what most MIA posters had to learn the hard way: that the entire foundation of psychiatry is spurious because it medicalizes typical human problems, suffering, grief, stress and other normal reactions to life itself. As you should know, all DSM life destroying stigmas were invented and voted in by consensus without a shred of science or medical evidence behind them to supposedly solve their “reliability” problem per Dr. Robert Spitzer, editor of the DSM III. Thus, psychiatry decided to pretend to be more medical and sold out to Big Pharma in the 1980’s that got us to the near totalitarian therapeutic state we have now due to the billions Big Pharma poured in to corrupt medicine, government and the media to make multibillions themselves at the horrific expense of more and more falsely medicalized victims. Dr. Peter Breggin, Psychiatrist, warned that the most dangerous thing one could do was visit a psychiatrist under this new fraudulent paradigm since such a visit was guaranteed to result in a life destroying stigma and a prescription of dangerous, toxic psych drugs within a very short visit. The eminent Dr. Thomas Szasz warned about in his many books like The Therapeutic State, The Myth of Mental Illness, Psychiatry: The Science of Lies and many others. Even Dr. Thomas Insel, Head of the NIMH, has now admitted that the DSM and its voted in labels are totally lacking in any validity or evidence whatever and the NIMH is moving in a different direction.

        And you don’t think stigmatizing people to force lethal drugs on them and subject them to gross human rights violations and deprivation of all civil and democratic rights is a problem?

        I regret that you did not like my comments seeing them as negative, but no matter how nicely or pleasantly or persuasively you and others promoting psychiatry speak, the fact that you are spreading deadly, life destroying falsehoods based on a spurious, nonmedical area of medicine is far more cruel, offensive and dangerous than anything I or others at MIA could say. Perhaps you should read more at MIA and elsewhere in the books I cite here to start to learn what many here had to learn at horrific costs to their health, families, careers, financial security, children, human freedoms, civil rights, reputation and so many agonizing other tragic losses.

        I suggest you read Robert Whitaker’s Mad in America and Anatomy of an Epidemic. Dr. Peter Breggin’s Toxic Psychiatry, Your Drug May Be Your Problem, 2nd ed., Mediation Madness, The War on Children of Color, Dr. Grace Jackson, Rethinking Psychiatric Drugs; Drs. Kirk, Gomory & Cohen, Mad Science: Psychiatric Coercion, Diagnosis, and Drugs, Dr. Grace Jackson, Rethinking Psychiatric Drugs and Drug Induced Dementia: The Perfect Crime, Dr. Timothy Scott, American Fooled, Dr. David Healy, The Antidepressant Era, Pharmagddon, Mania: A Short History of Bipolar Disorder, Dr. James Davis, Cracked, Drs. Stuart and Kirk, The Selling of the DSM and Making Us Crazy, Dr. Paula Caplan, They Say You’re Crazy, Dr. Gary Greenburgy, The Book of Woe, Dr. Joanna Moncrieff, The Bitterist Pill and The Myth of the Chemical Cure, Drs. Pam & Ross, Pseudoscience in Biological Psychiatry, Dr. Daniel Carlott, Dr. Linda Andre, Doctors of Deception (about brain damaging ECT), Psychiatry Unhinged, and countless others you can find at Amazon or the web.

        Thus, for you to keep extolling the usefulness supposed great benefits of biopsychiatry with its Book of Insults or DSM junk science to falsely stigmatize and ostracize those they target to make them permanent captives of what I call the “mental death profession,” to subject them to what Dr. Peter Breggin calls brain disabling/damaging drugs, ECT or chemical, electrical and surgical lobotomies is highly offensive for those who have not only done huge amounts of research to save our very lives or those of loved ones, but also to validate our reality after being subjected to psychiatry’s self serving brain washing for their guild interests alone.

        • I agree with a lot of what you say. Even the current DSM and psychiatric/psychological textbooks give introductions to their books by stating that they have to use DSM, as it’s the best we have, but they also say that the DSM is greatly lacking. We all observe human behaviors, not samples in petri dishes, and each individual experiences and reacts to their surroundings in their own unique way – but when you average out large samples, certain characteristics and trends present themselves. That’s where DSM has something right. Also, application of medications for this situation or that have been tried out over decades, and that’s where agreed upon therapies come from.
          Psychiatry and psychology are working on more biologically based models to know how to better treat patients, and target therapy appropriately. This is what all areas and specialties of medicine do. Yes, psychiatry did become medicalized, which is a criticism from even a great number of psychiatrists, but when the catatonic depressed patients, the autistic, the schizophrenic and the manic patients didn’t respond to psychotherapy, or have medications available, they weren’t treated well by anyone – society, the legal system or medicine.

          I have worked with THOUSANDS of patients, and doctors who have worked with thousands of their own, so this is where I draw my conclusions from. I understand that there are thousands of former psychiatric patients who are very unhappy with their experiences, but again, I repeat myself, I have seen more who are happy and have been in the system for decades. They are not threatened by the legal system where we practice, and they come back again and again for things like ETC, because therapy, healthy diets, exercise, change in jobs, and every medication under the sun still haven’t made them not want to commit suicide. That’s why, at least the professionals I have worked with, do what they do. That’s all I want people new to psychiatry to read.

          I will readily admit that it’s a different story when people suffer from conditions that would be better treated by CBT/DBT than medications. People who have had terrible rearing and subsequently have awful, unfulfilling lives and relationships. Through no fault of their own, the love and learning that they needed when a human infant/sponge wasn’t given and it’s no surprise that they feel the way they do – with extremes of normal emotions most others don’t experience. Medications don’t really help all that much, but none of these patients want to hear that they would be best served by learning to cope the way others do, and learn to view things in a different way.

          I’m not a fan of big pharma at all. They have their own agenda for sure. But I will take a $4 a month blood pressure pill that I know works, not CoQ10, garlic, and other meds that would cost me over $100 a month, coming in 20 large bottles where I have to take 5 capsules 10 times a day, and it only drops my blood pressure by 1 or 2 points. If that makes me a proponent for big pharma, then oh well. I have seen too many stroke patients, heart failure patients, and heart attack patients to chance my future to prove a point. Hypertension can be environmental, but it can also be genetic – not just a fabrication of the medical community or big pharma. What I’m saying is that there are real reasons to use medications and they do save lives. I’m sorry that the people who are upset with that feel the way they do.

          • this is wierd. I know quite a lot of psychiatric patients with a variety of diagnosis. I do participatory consultations with them. They nearly all have difficult relationships with the medications. They nearly all have truama that is ignored by services. They nearly all perk up and to some degree improve when given a chance to talk things over. For most of them I could, give the resources, improve thier lives considerably without drugs and with social interventions. Either we live in different universes or we have different expectations and therefore see things very differently

  84. Sleeves,
    I was told I was permanently damaged and needed massive psychiatric drugs to make me as “normal as possible”. For me psychiatry was a mistake, one that drugged me beyond who I had been and I no longer was functional. A chance consultation by a neurologist who said I had the worse Akathisia he’d ever seen and that “the psychiatric drugs were killing me” (his words). At that time I had no idea what Akathisia was, only I couldn’t sit still, had to pace all night, couldn’t sleep, shook and had profuse sweating. My psychiatrist was giving me drugs for what he called mania but it was drug induced akathisia.

    This is my two cents and I think what a lot of us here are trying to say, how does someone who is experiencing a temporarily bad situation in life be diagnosed as crazy, drugged to the hilt, then later drug free be told they are not mentally ill and never had been? How many people are told they have cancer, go through chemo, surgery and radiation and told they never had cancer? I can’t think we are that few that psychiatry has ruined our lives? My prescribing psychiatrist broke down in tears when he realized how wrong he’d been and suddenly I was a liability. I am glad you are here and reading what MIA has.

    • I glad everyone has an outlet to share their stories. They sound like they were involved with less than caring doctors and had serious side effects. That’s not the norm. I’m just worried that the people new to mental health treatment will be scared off. I have met too many people who thank God and their doctors for saving their lives, and they’d take a dry mouth any day. I could write horror stories of reactions to foods that people had eaten, and make them sound so graphic that no one would ever want to eat those foods ever again, but that would be wrong because most people don’t have food allergies, and all chefs aren’t bad cooks and bad people.

      • I’m not really sure you have looked at that site and those reports I mentioned at askapatient.com….heres the link again…

        http://www.askapatient.com/viewrating.asp?drug=20639&name=SEROQUEL

        These aren’t just a few people- there are hundreds of reports in here of serious and adverse effects. Not just a few, or even a small sampling- a significant percentage of folks report very poor reactions. What do you think about some of these reports?

      • There seems to be a “bad apple” theory at play here — the idea that doctors and their drugs are inherently good and helpful but occasionally something goes awry. I just don’t think the truth is that simple (if it was, we should be seeing the number of people disabled by “mental illness” steadily going down, not up).

        I don’t think it’s even as simple as people who are helped vs people who are harmed — because over time the former often turns into the latter, as much of the harm from psych drugs comes when they’re taken long term. I would hazard a guess that many of the psychiatric survivors who post here (and I include myself) at one time believed that psychiatry would help us, or even that it was helping us. Until the evidence that it wasn’t became impossible to ignore. How could we in good conscience not try to warn others of dangers we once weren’t aware of, that we paid dearly for? Especially when a growing body of research suggests that our negative experiences are not actually that anomalous.

        • Emmeline,

          I appreciate your comments. I’m not saying that drugs are inherently good or that doctors are. The same goes for everyone and everything. Being that drugs are just chemicals, they can’t be good or bad and they make no choices themselves. Doctors try to apply the chemicals to fix the problem the patient reports. The doctor’s motives may be his or her own, but most human beings, in all professions are doing their best. Arrogance really bothers me as well, so when I find a doctor I can’t work with, I find a different one. It may not always be that simple, I understand that, but I felt I had to post here because the argument seemed too one sided. For all the evidence that is reported, there is evidence in personal experience that makes me believe psychiatry and mental health is a worthwhile field to be in. It’s expanding its knowledge and working towards a better future. It is hard to escape a past of horrors, but that’s what every group must do – learn from mistakes and move on.

          • Understood. The arguments here are somewhat one-sided in the sense that what we’re trying to offer on this site is a counterbalance to the monolith of mainstream perspectives on psychiatry. That ground is more than sufficiently covered elsewhere — in fact it’s pretty much all you can find elsewhere — what we’re presenting is an alternate, more critical view. (Or in the case of the comment section, an oppositional view, but the comments do not necessarily represent the site itself.)

            I can see how it might come across as something of an echo chamber. Respectfully, I would suggest that the same is likely true of the professional circles you travel in, and that there might be some confirmation bias involved. As one person pointed out in response to your claim that you’d never seen a return to premorbid states — if the prescribed treatments are in fact causing chronicity and iatrogenic illness, as Robert Whitaker argues in his book Anatomy of an Epidemic, and if you only interact with people who prescribe or are prescribed such treatments, might that not be a possible explanation for why you’ve never seen a return to premorbid states? Aren’t you at least curious about how other treatment approaches such as Open Dialogue are able to produce such drastically different results? I would think that the prospect of full recovery would be intriguing to someone who’s devoted their life to helping others, even if it shakes up everything you thought you knew about what was possible.

            Although you seem pretty attached to your position and I can understand why others are finding that frustrating, I think that to come here and engage in dialogue with people whose views are so different from your own takes guts, and it suggests to me that your mind is not entirely closed. I’d be curious to see what you might make of books such as Anatomy if you read them.

      • sleves,

        With all due respect, while food allergies certainly are not trivial, to compare them to serious reactions to Seroquel that for many people are life destroying, comes across as very insulting even though I am sure that wasn’t your intention.

        And by the way, while I applaud your concern about the overprescription of benzos, I am curious why you aren’t as concerned that Seroquel is now being overprescribed for everything and is alot more harmful in many situations?

      • Sleves,

        Please, read all that is written hear and wonder, really wonder, why do this many people feel psychiatry caused more problems in the long run than not? Do you have any idea how erroneous psych diagnoses haunt us? How can a drugged individual know what informed consent is? How can one pdoc say we are crazy and a second say we are not? It more than the psych drugs and diagnoses, it’s how we were told we would never be whole again and found out this was wrong, incorrect and plain ludicrous.

        My prescribing psychiatrist had no idea of what he was doing prescribing potent and toxic drugs. Every drug side effect I told me about was meet with him saying it was all ME, becoming more unstable. Seroquel almost killed me.

        I am grateful I am psych drug free and have clarity of mind again. I would never trade it for a drugged state that psychiatry said was my only alternative.

    • I’m comparing being chemically treated for a bogus diagnosis of cancer to being treated for so-called mentally ill. The people being treated aggressively for something that wasn’t real or true would be furious, upset and violated and this is how we here feel.

  85. Sleeves: You can get Peter C. Gotzsche’s book from the public library. I, myself, have a hold in for the next available copy. I hope you enjoy it.

    Just a note. I KNOW the humility of a psychiatric patient who MUST go along with her “caretakers” because they control access to her children, so I’m sure you DO SEE a lot of humble, inoffensive, apparently thankful people. They have no out.

    • I believe that you feel that way do and have experienced what you have, but the only patient’s I’ve ever met who have had their children taken away are abusing them physically, emotionally, sexually, or by neglect, OR they are addicted to illegal drugs and the children suffer the consequences of their parent’s actions. I don’t know where the posters on this website live, but it truly sounds like there are terrifying places out there.

      As for having caretakers, that’s no easy feat to accomplish where I’m from. The courts would rather err on the side of giving people the right to care for themselves and their children than take them away. That’s even in the case of patients who jump out of moving vehicles and tear off their clothes in public because they are frustrated. They tell the court that they are doing “fine”, and unless their children are filthy when they go to school (if they go), covered in bruises, malnourished, etc., they get to live with family.

  86. Sleves,

    I find it hard to believe that you are unaware of the fact that we now live in fascist, “therapeutic,” states with psychiatry serving as militant police as everyone, especially our children (just like Soviet Russia), is under constant surveillance at school, work, community, etc. Teachers are “taught” the junk science DSM to stigmatize any normal children misbehaving and collude with school “psychologists” (yes, the ones who developed literal torture treatment for the CIA for so called terrorists without due process) to send them to a psychiatrist to be officially stigmatized and drugged. Most school shooters were found to have experienced such stigma and “treatment” with many suffering rampant bullying, which likely drove them over the edge from the dangerous drug effects and the huge injustice that the bullies were validated at their horrific expense as happens in work places and communities at large, which is called mobbing. Of course, psychiatry does nothing to expose the deadly effect of bullying, mobbing, domestic violence, rampant psychopathy/malignant narcissism by the 1% and their minions or other atrocities that cause immense human suffering with their easy, lucrative “blame the victim” approach to cater to those in power. Even Dr. Jeffrey Lieberman, past APA president and psychiatry cheerleader, recently admitted their absence in domestic violence after the NFL debacle. But, that’s not true: psychiatry blames and stigmatizes domestic violence victims including children for their very normal trauma reactions to put the nails in their coffins to aid and abet their fellow abusers with more power and manipulation skills. Thus, psychiatry serves as the chief bullies and mobbers too while destroying the victims with impunity.

    And any parent(s) who dares object to such fraudulent, life destroying “treatment” for their children in custody battles, single parenthood or intact marriages face huge risk of having their children taken away, which is happening all too frequently despite what you claim. The fact that many cases like that of Justin Pelletier have made many headlines in all the media makes me greatly question your claims and/or awareness of what is going on. Many of these cases have been covered at MIA as well.

    Thus, I stand by what I said in that just because you state or promote dangerous fallacies “nicely” does not make them any less dangerous. We now live in a situation similar to Stalinist Russia whereby anyone can be falsely accused of being “mentally ill” by their own families, coworkers, community and world at large since a third grader could use the DSM or “Book of Insults” (Jim Gottstein, J.D. of Psych Rights), which is just a more sneaky, immature way of insulting someone with name calling with the typical “You’re crazy” to hurt, negate and shut someone up. But, psychiatry’s use of this type of name calling is far more pernicious because this gives them literal license to lobotomize their victims after such psychological and verbal abuse. Mostly abusive men do this routinely to destroy their wives and even children psychologically and make them appear crazy from their abuse related trauma to destroy them in divorces to rob them of everything with help from the mental death profession of course.

    Thus, it is not MIA members who are dangerous warning other would be victims against this web of deceit of “mental health,” but rather, those who continue to pretend it helps saves lives when the opposite is all too true.

    • Yup, happened to me. It’s real-it’s happening. Your rose colored glasses are essentially blinding you, selves. Keep plugging your fingers in your ears and hum “lah lah lah” louder while the rest of us deal with the trauma caused by those in your ‘profession’.

      • humanbeing

        I cannot say that I’m particularly offended when you write the word profession in quotes as you did, or when you assume that I plug my ears to ignore my colleagues purposeful mistreatment of patients. I’m almost certain that you mean it to be offensive, however. This site is full of individuals with admittedly terrible experiences, but just because you and others have, there are plenty who have not. Don’t resort to calling them less intelligent or ignorant to the truth, because the truth of something as subjective as one’s own experiences belongs to each individual.

        I have never said I’m a psychiatrist. I work with a TEAM of healthcare professionals which includes social workers, case managers, psychologists, recreational therapists and, yes, psychiatrists. It’s a team approach. I am curious as to what your profession is, humanbeing, so that perhaps I could make unflattering generalizations, and hateful accusations in order to show you that no one, and no group of people are all good or all bad.

          • I don’t see intentional mistreatment of patients by my colleagues. I have seen intentional mistreatment of people in other professions, and it appears to be for the enjoyment of the individual carrying it out, but that is rare.

            If I have a disagreement with the treatment of a patient, then it is discussed as to why the treatment plan is the way it is, and usually there is good logic behind it. I haven’t witnessed antisocial personalities in the mental health field so far. I’m sorry that people here report that they have.

        • Fine by me, selves; I was an RN…and it made my heart sick at the suffering and barbarism that is considered to be the state of the art in care in these modern times. And I’ve seen plenty of abuse in the medical field. As far as I’m concerned, the only good medicine does these days is for emergencies.

          Right now I’m a professional sick person recovering from the iatrogenic damage caused by ‘modern medicine’…and it’s hell on earth.

          • I’m sorry to hear that you are a professional sick person. Sometimes our bodies and minds betray us, and the medical establishment makes things worse. Unfortunately there is no God-like knowledge about the human organism, so treatments are never perfect.

            I know a patient, in a very poor medical state of health, and they direct their focus at making due with what they can achieve, learning to live the best life they can with their new limitations, and step away from the victim role. Despite their disabilities; and they have many, they have a good outlook on life and enjoy it to the fullest. It’s hard, but it makes them a happier person. I get to talk to this individual every week and it’s always a pleasure and makes a difference in my life.

            This person was also a nurse, and saw many bad things as a nurse, but that wasn’t the doctrine of Nursing or what they were taught in school. That was a few bad apples practicing as nurses. They don’t bash the nursing profession, or even the individuals who were “bad and uncaring” nurses. I know a great number of nurses myself, and there are many personalities which clash at times – between other nurses and between the nurse and their patients. I also know grocery store clerks who are permanently in a bad mood and ones who look like they are high on life all the time. It depends on the individual and how they chose to act in the situation. We don’t know what’s going on in their heads, so how can we say that they are mean, cruel, hateful, uncaring, willfully neglectful, etc., and therefore the whole profession is that way as well?

          • “step away from the victim role”

            Your comment is out of line. Someone tells you they are in hell and you recommend an attitude adjustment? And the line about “treatments are never perfect” when someone has told you they have an iatrogenic illness? Is this Minimization Therapy?

    • You have quite an extreme view about this subject. All I can say (to repeat myself from above) is that I have worked with literally hundreds of psychiatrists, social workers, therapists, lawyers, judges and more than THOUSANDS of patients, and I have not come to the same conclusions. The patients who would tend to agree with your opinion, in my experience, may not be as vocal or well written as you are, but NEVER have I seen the unjust taking away of rights, forced medication on a patient, or removal of children from a patient’s care without significant consideration by all parties involved.

      I’m glad you think my flowery speech could sway people to the darkness of psychiatry, but I have too many personal experiences to tell me that yours is the unfortunate exception where harm was done and a worse outcome was met. Yours and perhaps thousands of others. I will acknowledge that thousands are a lot – but tens to hundreds of thousands are much more.
      I know that the DSM is flawed, as does everyone, but it is the best tool to use to describe behavior and define illness – it’s not meant to label someone. It has to be used so that other professionals know what the others are talking about and so that your insurance pays your medical bills. After all, chronic high blood sugar is not a diagnosis, but when millions of people suffer from some form of insulin resistance, chronically high blood sugars, nerve and vascular damage from that chronically high amount of sugar in the blood stream, and resolution of symptoms and reductions in long term effects of the disease phenomenon, you can call it diabetes. All human behavior is observable and follows patterns. As much as we are all individuals, they way we are is nothing truly unique. Yes, diagnosing may comes across as labeling, but it’s not meant to. More patients adopt the label by themselves, even when their doctors tell them they are a person, not a mental illness or other disease. It is not the fault of the doctors when patients use the diagnosis to explain/excuse their behavior. The ideal treatment for many people is not taking medications, but working out your issues with the help of others. We use medications when we have to, not as a first step. Some doctors may behave as you say they do, but not all.

      As to your claim that all doctors victimize patients who suffered from abuse as children, I totally disagree. A large percentage of our patients are females who were abused as children and we know it’s not their fault. It’s not their fault that they learned poor coping skills as a result. We call them poor because the patient’s usually have the problems relating to others, not the other way around. It’s usually not a problem of “I’m the only normal one and everyone else is a jerk”. But how could you not think that way, after all, when your parents were the ones who were supposed to teach you how to be a well adjusted, happy and functioning member of society. All of these patients come in asking for benzodiazepines in order to help “stabilize” their “bipolar disorder”, but we know this is not real treatment. Rapid mood swings throughout the day, generally being pissed off, forming quick and intense relationships that inevitably fail, thinking that all people are all good or all bad, self harm to relieve stress and sometimes with the hope of accidental death, wild displays of yelling and physicality to get attention of others, being extremely manipulative in the way you speak and behave, etc, is not bipolar, it’s the way people learned to cope. the sad thing is that most of these patients think the fault lies outside of their control… It’s misperception, and why professionals use CBT and DBT change the way people THINK and BEHAVE, because the brain chemistry and architecture is mostly intact. Doctors know that meds are of minimal benefit for people who suffer like this. The problem is that meds are of some help, and when you (the doctor) are viewed to be perfect, and with GOD-like knowledge (when you do not), you get sued when the patient accidentally bleeds out from cutting and you didn’t start a medicine that is of SOME benefit. Also, when children of these patients begin to adopt these behaviors and form poor attachments themselves, someone must step in so that the intentional or unintentional cycle of abuse. Professionals also get sued for not stepping in, because, as a whole, society has put that burden of doctors, lawyers, etc, and they are held accountable for not stopping something that is WRONG. I’m sure mistakes are made by well intentioned people, and I’m sorry to whoever is a victim of a mistake like that- but it’s not the evil intentions of anyone that drives people to do what they do.

      • Hm, the majority of people forced or coerced onto medication that I know were harmed. It was not justified. There were identifiable reasons that were ignored by psychiatric staff.

        The majority of all people with psychiatric hospitals have suffered trauma, often sexual assault or familiy violence. This is mainly ignored.

        We seem to have very different experiences.

        hey ho

        • Exactly John. I don’t doubt sleves when he says he has observed patients who benefit from treatment.

          But what I greatly resent is him claiming his truth prevails over ours and we are in the extreme minority. Essentially, because he is the mental health professional, he is right and we crazy antipsych folks are wrong.

          • I only took that tone when people here claimed to have the only truth. I believe that you all had bad experiences, but to say all mental health professionals are essentially evil is offensive. I’m not claiming to have the ultimate truth – I have mine, and you have yours. Repeated claims that MIA members are the only ones who are correct is just as wrong and close minded as they claim me to be. I don’t think any of you are crazy.

        • John, you say the majority of people you know who were forced were harmed. That’s your experience. Mine is the opposite. The majority of people I know have mostly good experiences. We rarely force people to do anything, and it’s rare that anyone is forced. Some physicians do not practice this way, and I will acknowledge that.
          I’m not trying to minimize your experiences, but make known that there is a different perspective. That is all. I have the benefit of seeing dozens of patients a day, so I feel I can say that I have a valid perspective as well. I’m not trying to say that you did not.

          A lot of our patients do have emotional and sexual abuse as children, but we do our best for them. We don’t force anything on or into them. They chose their treatments as part of a team and changes are made of things don’t work or they don’t like them. What I have tried to say is that the places I have worked don’t practice any differently than we do. I’m sorry that people experience bad things, but that doesn’t make all people bad.

          • It almost sounds to me like you live in an alternate universe somewhere. I don’t mean this to attack you, but reading what you write and comparing it to what I observe being done to “patients” every day at work, it’s unreal. Where do you live?

            All of the psychiatrists at my hospital think that they’re doing something really great for their “patients” when they force them to take the toxic drugs or take them to court so that they can get another 180 day hold on them. They don’t see themselves as doing anything terrible or horrible and yet they are. Actually, most of them have a very paternalistic attitude when they deal with anyone, not just the patients. But they don’t see themselves in a bad light and that they’re doing terrible things to people. And when they’re confronted about this behavior that is harming people they act totally shocked that anyone would question what they’re doing to people, because after all, they’re doing it to these people for their own good.

            I don’t know where you live or what organization you work for, but what you describe is not the norm of what I experienced as a “patient” nor as a peer worker in the hospital where I was held.

      • sleves, you live in a different universe than I. My experience is that people’s rights are uniformly ignored to be locked up and drugged against their will. I wrote a law review article about it that you can find at http://psychrights.org/Research/Legal/25AkLRev51Gottstein2008.pdf There is also a video where I talk about it at http://youtu.be/19ER-rgYNuM

        The same goes for children being taken away from their homes and drugged.

        I used to give mental health workers the benefit of the doubt for not knowing the great harm they are causing. Now, though they have to be hiding their heads in the sand not to know. The picture at http://psychrights.org/Market/LucyTShirtOrderPage.htm I think says it all. Are they fooled or are they complicit.

        One can come up with a number of explanations for this behavior, but I think it is mostly the banality of evil.

        • I live in the Midwest, but have worked in the Southwest, West Coast, Southern East Coast and Northern Midwest. Never in any huge city, I’ll admit. IMO, you are asking for problems of all sorts when you live in big cities – traffic, crime, racism, bad attitudes, snobbery, etc.

          Where I have been and what I have seen is what I base my experiences on. Our legal system works well here, and has where I have visited. As someone who gets to sit in with doctors when they do evaluations, I get to see what people open up and say that they won’t admit to their lawyer or the judge. More often than not, our patients get the benefit of the doubt and aren’t “forced” to be treated… they end up off meds, and back in our hospital, sometimes dozens of times, after doing things like “shooting the cartel members” who are walking sown the sidewalk in their home towns. These are people who have never tested positive for substances of abuse or been on psych meds. In their paranoid psychosis, they know to ask for a jury trial (which our hospital cannot afford), so they go on their paranoid, hallucinatory way.

          Our treatment team isn’t careless, nor is it paternalistic. I believe that as the older doctors retire, we will all see less and less of that.

          I’m sorry that you guys have different experiences – something I’ve said all along. I don’t appreciate being attacked, and being called delusional because I have a different perspective. I was just trying to spread some hope to the patients out there who feel that they could use some help, and the ones we have helped already. If we are a minority, that is what it is.

  87. I need to chime back in. I just started a new job and have been off seroquel for a little while now. I feel great. I think ppl in general under estimate how good exercise is for you’re body. Basically after I started working. I got my gym membership back and here I am. I feel great. I think of seroquel once and a while but its clearly in my rear view. Just happy I made it out okay. Now I Have a few other choice meds I need to ween off of? It at all possible ??

    PS Donna I really like you’re point of view. . . cheers happy new year 🙂

      • My salary sucks. I could change professions quite easily with my undergraduate degree and make much more money. I do what I do because I actually see change. I get thanked by long time psychiatric patients who have failed the no medication experiment and who are quite healthy otherwise. if they have bad reactions to medications, these are reported and the medications we use change. They understand that theirs are not curable illnesses, but ones that are more amenable to talk therapies and medications.

  88. Hmmm…I wonder what a “schizophrenic” is. I know none. I know people diagnosed with schizophrenia. They vary. Some hear voices. Some don’t. Some had bumps on their heads from accidents or sports injuries. Some suffered from tumors, and as a result, had symptoms resembling psychosis Some had strokes or brain deterioration such as dementia, which are measurable neurological, not psychiatric problems. Some had single episodes of hearing voices as a result of taking drugs such as ecstasy and then got labeled for life. Some heard voices as a result of a high fever and then got labeled for life. Some tried suicide and then the doctors gave them an arbitrary label cuz it was late at night so what the heck. Some were sad so got on antidepressants but Abilify was added, so some doctor decided that since the patient takes an antipsychotic, he/she must be psychotic. Some became confused from shock treatments. Some became disoriented due to the effects of meds such as hormone pills or even acne pills. Some reacted to antidepressants. Many such as myself causing inability to think straight. Or drunk. If I recall correctly, drunkenness impairs one’s ability to think. Yes, I’ve known doctors THAT stupid as to diagnose people while in such altered state. Most don’t even bother asking some rather basic obvious questions such as, “Have you eaten today?” or, perhaps, “Do you have a place to sleep tonight?” Cuz they don’t care or don’t want to hear the ugly answer.

  89. Sleves
    ….and the fact that you have NEVER seen a return to premorbid functioning could well be due to you and your friends having pumped you victims full of massive doses of highly toxic psychoactive chemicals, causing BRAIN DAMAGE.

    It tends to happen to most people when they use psychoactive substances for any period of time. Just because what you use only you (doctors) can prescribe doesn’t alter the fact that they are psychoactive drugs, even though you might prefer to label “psychotropic medications” to legitimatize them.

    • Kim,

      Please see my post below. Schizophrenia, bipolar disorder and depression also cause brain damage. Circuits are rewired making diseased states more likely after one recovers, and there is evidence that there is atrophy of brain areas in the untreated patients of these disorders. I will agree with you that there is an alteration made to the brains structure secondary to psychiatric medications, but I’m not sure if they are good or bad when the patient is stable and no longer quite as psychotic. Tough to say, though most professionals would say that it is worthwhile.

      Kim, you can call the drugs what you will, but I’m certain most people on this site use alcohol, marijuana, nicotine, and caffeine, all psychoactive drugs. Are they legit and Rxs not?

      • sleves,

        You say “Please see my post below. Schizophrenia, bipolar disorder and depression also cause brain damage. Circuits are rewired making diseased states more likely after one recovers, and there is evidence that there is atrophy of brain areas in the untreated patients of these disorders. ”

        I’m not sure it makes sense to say that, for instance, “schizophrenia causes brain damage”. As if “schizophrenia” is one “entity”, or cellular disease, such as as some genetic problem in producing too much dopamine. It is not a single genetic disease with one cause. There are many different reasons why a person may get labeled schizophrenic. Same with bipolar and depression.

        If there are good studies that show that people labeled with schizophrenia have different brain areas compared to an average person, it doesn’t mean that one disease called “schizophrenia” caused that brain shrinkage. Poor nutrition, isolation from community, chronic stress, lack of play, teasing, spending all days indoors, lack of exercise, lack of sleep and so on probably affect all kinds of brain areas, functioning of body and so on. Do you see a difference between this point of view, versus the view that for instance schizophrenia is one cellular level brain disease that causes people to act like, um, lunatics?

      • I also know that epileptic fits, for instance, can cause brain damage and “kindling”. It may be that some people with diagnoses of “schizophrenia” and “bipolar” also have brains or bodies that function unoptimally. However, I don’t think there’s any real proof that for instance “psychosis” itself or maybe taking LSD very directly causes any brain damage, I mean in the direct way that it is shown in the case of epilepsy.

        • Right for sure again, Hermes. LSD is medically far from toxic. But then you get hallucinigens all lumped together and end up with the Ecstasy craze worldwide. The biggest never talked about drug crisis in human history because the Left didn’t want to talk about and the rights people have simplistic views of the differences between the devil potions that tempt their neighbors and kids. E was banned after inhouse experiments in Kesey’s day, because it floods the brain with dopamine and causes brain damage on first use. But when the professionals brought it back the held back the history, just like one thing is no different from another. The Left here just wants the status quo fit for everything, survivors included. Keep all the stories happy to look at and the problems eas to fix if we all do it, which means not Left academicians, not mental health providers, not doctors. They can definitely hang back and cling to their entitlements. It’s followcthe leader here, Left and Right, but with E the Left killed the dream, right from upstairs. The latest giant pacifier for the surveillance state.

      • Sleves
        You and I both know that Schizophrenia, bipolar disorder and depression do not cause brain damage. When the brains of first episode schizophrenia “patients” are scanned, people who’ve never had the drugs, there is no evidence of atrophy. There is evidence of atrophy once the drugs have been forced on people.

  90. Hello, it breaks my heart, looking back to my last few years of shrinkage, and my last year of medical care in the good ole US of A, how the style of medicine had changed. My shrink actually boasted to me a number of times that she was currently treating well over 100 patients. This makes no sense. Why should a shrink have this many patients? They cannot keep track of them all. Our sessions consisted of my correcting her outdated paperwork and my clarifying over and over which medications I hadn’t taken for years, telling her which medications I was on, and watching her type things into her computer. I knew there was no communication anymore. I was on an assembly line. Is this what it has come to? So any shrink or doctor who says, “I have seen and spoken to thousands of patients…” No, they saw them in their offices, charged a fortune, but there was no human interaction whatsoever, no understanding between them, just an exchange of money. The patient left feeling demoralized and worthless.

    Many hope that next time it’ll be different. They hope for “better doctors.” Or hope their doctor was “just having a bad day.” They do nothing. They wait. They want a better pill. I was that way for years. I assumed my own doctor was a great genius and I continued to fail to live up to her expectations of “perfect patient.”

    Sure, I was great at showing up on time and never missed a dose. Yet I knew the patient/practitioner relationships were eroding all around me. It was time to get out. I don’t mean halfway. I mean all the way. I did just that. It was the best favor I could possibly do for myself.

  91. Sleves includes the life, memory destroying ECT as one of the supposed wonder treatments doled out by his group for the “mentally ill” supposedly so eager and willing to have these “treatments.” It is well known that so called patients must pretend to agree with psychiatrists and their enablers about their bogus stigma and the need for their toxic drugs or they risk forced treatment and being indefinitely committed if they don’t play their fascist, humiliating degradation rituals “game” like the current Hunger Games. Often, these victims are falsely accused of some bogus aggression by some family member, police or other fraud to put them in this Orwellian, Kafka like nightmare.

    Here is a great article on ECT that exposes the horrors of this brain damaging torture treatment that is one of the most lucrative in psychiatry with all of the supposed “evidence base” invented by those with huge conflicts of interest with ECT machine makers like Harold Sackeim and Max Fink and the fact that they can make much more money by subjecting mainly helpless elderly women to this barbaric treatment to exploit their Medicare while subjecting them to heart attack risks, more memory loss and brain damage and a great increase risk of death that is often not honestly reported. This is monstrous and evil and in my opinion, there is nothing banal about it.

    http://usatoday30.usatoday.com/life/health/lhs195.htm

    Again, Linda Andre’s excellent book, Doctors of Deception, about ECT is considered one of the best if not the best on the topic.

    Dr. Breggin writes about the shocking study that Sackeim finally produced after being paid by the government to do it as one of the greatest promoters of ECT that he avoided for years while making a fortune off ECT and shock machine conflicts of interest like his fellow ECT pushers. The study proves what ECT victims knew all along: it destroys memories, cognitive function, intelligence, creativity and human lives, which drove some of its more famous victims to suicide like Ernest Hemingway, Sylvia Plath and Virginia Wolf:

    http://www.huffingtonpost.com/dr-peter-breggin/disturbing-news-for-patie_b_44734.html

    Dr. Breggin also exposes that all of psychiatry’s so called “treatments” are brain damaging/disabling or chemical, electrical, surgical lobotomies with the latter two barbaric practices making a great comeback.

  92. I’m aware of the rule of 3rds of Schizophrenia (where a third get better, a third don’t, and a third stay the same), and I should have been clearer when I wrote that we have never seen anyone return to premorbid functioning with schizophrenia – we don’t see long duration of onset schizophrenics return to premorbid functioning. These patients come to us very sick, and leave not much better. Most all of them come to us after their families have suffered for years without ever seeking help – and this includes no history of medication usage. How these patients don’t end up at least in the ER from time to time baffles me, but there you go.

    Fortunately, it’s estimated that only 1% of the population has schizophrenia (worldwide, not just in the US), so we don’t see many legit cases. I’m not sure if it truly would then be only 0.33% with the long duration of onset, but that would make it much, much lower. We do see a ton of cases of substance related and medical condition/medication induced psychosis, and maybe some of the 1/3 rd who get totally better were these type of patients who were actually misdiagnosed? We have the opportunity to appropriately diagnose substance abuse disorders and medical conditions causing psychosis, and we don’t use medications at all for these patients unless they attempt to harm themselves or others – and only then we do PRN usage of drugs (like people use Benadryl PRN for allergies or sleep). I don’t know if that’s scary to you all or not. The way mental healthcare practitioners understand it is that short term use of antipsychotics doesn’t do all that much to the brain – it’s weeks and weeks of usage (just like antidepressants) that leads to beneficial effects. Medications are assumed to changes receptor density, change receptor sensitivity and perhaps genetic expression of proteins. Some parts of neurons take months to communicate from the end of the axon back to the cell body, so we’re not sure how the meds work. On the flip side, with partiall understanding of these MOAs, then it would be safe to assume that being off of the medications would return the brain to its former state.
    Pyschotropics/psychoactive/toxins – whatever you want to call them have effects that are used to try to help people get better. A lot of authors of really good psychiatric texts agree with Whitaker in that psych meds need to be used sparingly and for short duration if at all possible. I never heard of Whitaker saying don’t use them at all. Sure, they can have awful side effects, but murdering your family and lighting yourself on fire isn’t a healthy way to be either. Constantly being suicidal isn’t either, and I’ve met patients who have had ECT who feel better. I’m sure there are people who don’t need it who have received it, but I can’t speak to that. I don’t know of anyone around here who does it because it’s not lucrative at all, and the malpractice makes it not worth it. We did have it, but lost the services. I am aware of the side effects of ECT, with memory loss being one of the most concerning, but there is literature on how to reduce that with how many probes are used, their location and the amount of charge used.

    • Yes, medications DO change receptor density. Unfortunately, it’s in the wrong direction. Have you read up on neurological up- and down-regulation, where the brain reacts to increasing a certain neurotransmitter by decreasing the number of receptors for that transmitter, and vice versa? This is not new science, and lies behind both tolerance of and addiction to psychoactive substances. The analogy with psychiatric drugs is complete, and Whitaker summarizes the research showing that the same thing happens (as any rational person knowing the data might expect) when we increase Serotonin or decrease Dopamine. Look up “supersensitivity psychosis” and “tardive dysphoria” if you don’t believe me.

      “These patients come to us very sick, and leave not much better.” That quote from you above says it all. The drug paradigm is good at addressing short-term acute episodes but does not address long-term recovery, and may in fact impede it. This is not that different from other parts of the medical profession, where we are great at addressing a heart attack, but engage in pointless and expensive protocols like prescribing daily Lipitor to everyone with a history of heart disease, even though the drug’s track record shows little to no improvement in outcomes and a massive increase in side effects.

      And you’re not going to get away with the “must have been misdiagnosed” evasion either. People are diagnosed with schizophrenia based on behavioral/observational criteria, not on some underlying physiological defect that can be tested for. Hence, anyone who meets the description, unless there is some other known cause, qualifies as “schizophrenic” for the purposes of research. If these people do better in Finland or Columbia, you can’t get away with saying “Oh, they didn’t really have it.” The phenomenon called “schizophrenia” plays out differently depending where you live and how you treat it, and treating it with drugs appears in many cases to take what might have been an acute episode and turns it into a chronic disability.

  93. Sleves, you’ve told a couple of “ax-murder” stories to scare people.

    “More often than not, our patients get the benefit of the doubt and aren’t “forced” to be treated… they end up off meds, and back in our hospital, sometimes dozens of times, after doing things like “shooting the cartel members” who are walking sown the sidewalk in their home towns. These are people who have never tested positive for substances of abuse or been on psych meds. In their paranoid psychosis, they know to ask for a jury trial (which our hospital cannot afford), so they go on their paranoid, hallucinatory way.”

    Also, shizophrenia is supposed to be this worst psychiatric disease world has known. It’s also supposed to be the crown of psychiatry, since psychiatrists have found a cure to it. Namely they found neuroleptics which sedate any human or mammal. Do you not understand that your “ax-murder” warnings may be highly “triggering” to many people who write around here, who have got the same diagnoses you accuse “ax-murderers” of?

    Also, as they are so crazy and hallucinating… how come they because of that craziness just know to ask for a jury trial? I’d imagine a truly crazy and hallucinating person wouldn’t know to ask for such a trial.

    • Great points Hermes! Furthermore sleves, by perpetuating the stereotype that all folks with schizophrenia are axe murderers, you aren’t exactly encouraging people to seek treatment which seems to be your goal in posting here.

      And by the way, you seemed to ignore Nancy’s post that what looks like a relapse of symptoms is due to withdrawal symptoms from CT or tapering too quickly. My guess is your patients who keep ending up in hospitals keep continually cold turkeying their meds which starts a vicious cycle.

      By the way, good questions for you to answer is what do your med evaluations look like, how often are they done, and do you ever encourage people to taper off off meds? What do you do if someone wants to and you don’t think it is advisable?

  94. Hi friends, I just read the last post (these come into my email) asking about insomnia. I have been busy (this in itself is terrific as I am no longer the “basket case” I once was) so it’s tough keeping up with everything. I have tried to post as much as I can about how I cured my own insomnia, no drugs, no substances, certainly not a penny in my pocket, no gurus, no hocus-pocus, no religion, no fake science, no therapist, no sleep study, no DOCTOR, no more “diagnosis,” no test necessary, etc. I had the absolute worst case of insomnia I’d ever heard of. I didn’t have occasional insomnia. This was constant. I was so exhausted I couldn’t function anymore. I assumed this would be my life forever, that I would just die of exhaustion and be permanently unemployable, that I’d never accomplish anything. I couldn’t get simple tasks done. Like I’d try heating my home with wood and while trying to make the fire, if it took too long I’d have to stop due to sleepiness. I could barely ride a bus because I was so sleepy. I couldn’t wait at a bus stop, I’d feel like I was gonna keel over from exhaustion if I had to stand there too long. All that has changed but certainly not due to “doctor.” I had to cure my own insomnia. People who are denied medical care make do for themselves. So that’s what I did. All that is in the past now. So I am wondering if I should put up a website or write a book that I can sell for very very cheap. I don’t use any substance, such as marijuana, to help sleep. I didn’t have to give up coffee. I didn’t have to give up an afternoon nap, which is customary in many cultures, because I often need one. I keep writing out how I did it but I can’t keep doing that, plus I want to go into more detail and add more ideas. As time goes on, my sleep continues to improve, as does EVERYTHING in my life. I used to be the most negative person and no one wanted to be around me but all that changed. Getting away from shrinkage was the best favor I could have done for myself. Those doctors were SO WRONG!

    • Julie,

      I would love to find out more information about how you did it as one in a similar situation. I do feel my sleep apnea diagnosis is correct but I am sure there is still alot I could learn from you.

      Web site or cheap book would work for me particular since I wouldn’t have to give up naps or coffee. LOL!

      • Warmac, thanks for asking. Puzzle is amazing. Actually, I approached my shrink in September 2012, asking her to sign papers so Puzzle and I could begin work together with her training as service animal. My shrink was completely in favor of this. In fact, she said “It’s about time.” Since she was “in training” I wasn’t supposed to be bringing her places such as stores, restaurants, etc, I did so anyway. She is small and extremely cute and good-natured, so I had no problem. There’s a lot of controversy over what defines “service animal” or “emotional support animal” and I stay out of that. I was leaving the MH system, and my own definition of “disabled” has changed. After you are in a hospital, depending on your community, you might then be unemployable if your reputation has been ruined by “diagnosis,” which is little more than a passed-on rumor. So having used MH services is ,more disabling than a MH condition, which was temporary. But what happens to the “service animal” status if you go antipsychiatry and no longer see a shrink?

        Puzzle herself answered this question. Right away in 2012, she refused to be a psychiatric service Dog (PSD). Instead, she focused on healing me physically. I guess she was telling me it was time to dump the shrinks, no turning back.

        Here in Uruguay, dog/human relationships are different. Everything is different, it’s a different world here.

        BTW, I slept about 11 hours last night. I thought I’d never be able to do that. I thought I’d be permanently exhausted. I assumed i’d never be able to get a thing done. I had so little hope. But somehow, all that changed.

        • “dump the shrinks” Puzzle is one sharp Dog. She is lucky to have an owner who understands her that’s for sure.

          I try to count my self down into a deeper sleep. The deeper I go the better I feel. Hope is the light of life, right.

          All the best to both of you.

  95. Right, Hermes – I get you on the mental defective pronouncements. My thinking about the Lewontin book is that it takes the mystery out of worrying that you deserve such reputation yourself. I always look for that: can I stop believing the justification for how I lost my place socially? In other words, the facts that genetics can’t produce anything close to “blueprints for organisms”, that we don’t need it to, and that the “noise” of random differences in chemical interactions determine plenty, are as much facts about the stuff we are made of as are our inherited traits. You can re-direct your attention from the fatal flaws that justify all the pressure to medicate and to exclude you from everyday events. If you get that concept thoroughly already, then this book would serve more as clarification on how to interpret the basics of the science for you.

    Also, I mean for my reading to take in changes in definitions of mental illness over time. For instance, Will Hall just blogged about melancholia and said it was the old name for depression. But this might not be exactly so. People change the idea of what particular things make for the unwanted companion and the unhelpful response from one historical circumstance to another. It’s the same for most people’s purposes, of course. But my concern emanates from and extends back to how we limit talking about things because of supposedly identifying some discrete disorder.

    By way of example, I know my condition includes very high stress and hyperarousal. I know of traumas that at the time did not give a clue that I’d get like this. But I don’t have a big, weepy story to tell a therapist, which really seems to be something they want. The point I’m driving at, is that it would work perfectly well for me to talk about moodstates, but this is too heavily de-emphasized. Similarly, I can’t think of who couldn’t talk about stress for mental problems. So, the bottom line is that I don’t see anyone in the business having to prove that hospitalization does some good because they have pressure to prove their case. You get no original information there, and everyone is thought to have one of two disorders. Either Not Taking Your Medicine Disorder or Self-Medication with Controlled Substances Disorder. Why can’t doctors flip the pages and try new approaches or admit confusion, ignorance, and error. I guess it would kill them. Why can’t psychologists acknowledge using psychiatry to shield themselves from harder cases? Too honest, they’d die.

    Nothing ever made me believe anything had changed about the world just because my perceptions changed. But in a sense, I began to experience revulsion toward my life and noticed some reasons for disregarding the typical materialistic goals on account of the meaning to me of the assault on my senses and the commonly seen emotional frenzies of crowds and “serious” people that I have to put up with in times of calm and emergency alike. That and all the rejection and the naive equating of psychiatric diagnosis and treatment with medical help. Here in this backwater of wasted ideals.

    BTW, nothing like paranoid intentions seems to be hanging you up, either. If they ever did and were too intense or of the wrong kind to serve any good purpose, that is for you to say, very much completely I think. You’re liable to encourage by your example, but be sure to get the frustration out when you need to. Talk to you down the road.

  96. Wow, I just took my last dose of Seroquel about 2 weeks ago and I am terrified of what health issues may be forthcoming for me in the future. I was on a “cocktail” of meds, Seroquel was the last one to go. It has taken about 3 years to finally come off all. I have been using Valerian root and over the counter sleep aids and I did sleep last night but I am still shaky. I will be researching psychiatric survivor support groups. Thanks for your article. I need help though. Any guidance suggestions for me in South Carolina?

  97. Hi Nancy
    Congratulations on your having helped to put together such a wonderful site. I have read all the posts and it took a while!
    I want to contribute some of my observations and outcomes in a journey to eventually come off Seroquel.
    I had been on Seroquel 600mg at night for several years and just over 5 months ago I started tapering. I took one month to go from 600mg to 300mg without too many problems. Then another month graduating down to 150mg. I stabilized on 150 for a 6 weeks as getting to there was more difficult than the first stage, with some anxiety, some sleep disruption (luckily not bad), some suicidal ideation. None of these symptoms laid me low but it was a bit of a grind. After my symptoms stabilized I gradually moved down to 100mg and again this was not easy with the same struggles as above. I have stabilized but will stay on 100mg for a further month before tapering off over a few months. That’s the plan.
    Symptoms I’ve had with Seroquel (600mg) are:
    Constipation – horrendous pain and blockages
    Itching
    Blurred vision
    Tardive Dyskinesia – putting tongue out (embarrassing), lip smacking, jaw grinding.
    Heart Problems – serious arrhythmias – 10% of my heart beats were arrhythmias at 600mg – artery plaque buildup – diagnosed as having arteries of an 88 year old. I’m 67 and have always been fit & healthy. A Holter 24hr test when at 300mg showed arrhythmias down to less than 0.1%!!!!! I’m expecting to be clear of arrhythmais when off Seroquel. I am astounded that Seroquel has apparently can cause serious heart complications. At one time I was scheduled to have a pacemaker fitted. For information on Seroquel & arrhythmias go to this article – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2493295/
    My symptoms/outcomes tapering off Seroquel:
    Arrhythmias – huge improvement
    Runny nose – slow but constant dribbling nose which hasn’t stopped in the 5 months
    Constipation – gone – and my tummy now feels great
    Muscle cramps – leg seizure at times
    Sweating – intermittent
    Suicidal ideation – waking up and feeling really down but springing up later in the day. I have a reasonable exercise regime which perks me up.
    Lacking motivation
    Sleep – this has gone fairly well for me. But I’m wary about coming down from 100mg to zero. I’m reminded that Nancy stopped tapering at 100mg and suffered badly as a result. Thank you Nancy for giving insight on this aspect.
    I’m thinking seriously about going to a lawyer to explore taking legal action against AstraZeneca particularly because of the heart/artery and tardive dyskinesia issues I have suffered. Can anyone give me some feedback on embarking on this cause of action?
    Kind Regards to all and I hope I have educated some of your readers.
    Rory

  98. Hi Nancy,
    I just want to tell everyone here that there is hope coming off of Seroquel. I’m 3 wks off of it now & felt ok, although, at the start it was hard but I was able to get through, with God’s help. I give my thanks back to HIM because I finally was able to very slowly taper off that medication by dry cutting. Again, very slowly. I’m still on Mirtazapine but I’m so happy to prove that I was misdiagnosed. I promised to come back here when I have a success story to tell and this is it. There is hope.

    Shirley

  99. I quit seroquel 2 days ago. baruch hashem. I did not experience any withdrawal side effects.

    I was first prescribed seroquel because I was seeing a therapist and I was trying to work my life out. I was 26 or 27 and just divorced. It was a traumatic time. I was given a diagnosis of situational anxiety. I asked my doctor to change it to bi polar disorder cause my insurance gave better benefits to those who have a disorder, situational anxiety doesn;t count as a disorder.

    At my worst I was on 900mg a day, I had gained 30 pounds, I laid in bed all day, I couldn’t speak properly, and I was in a somewhat vegetative state.

    at some point I looked in the mirror and I realized what was going on and I decided to immediately quit.

    quitting at 900mgs wasn;t a great idea

    i became somewhat psychotic as I rapidly tapered down, I was walking around the city a lot for the excercise. I was a mess.

    In the midst of my mental breakdown I got falsely arrested by police officers who decided to pick on me in my weak mental condition. A lawsuit is now pending against the city of new york.

    my personal life has been on a roller coaster ride. My family mostly abandoned me over the last 5 years as I struggled, not necessarily with mental health, but with what seemed like mental health issues.

    I was just having a hard time. I needed help and love. I didn’t need drugs. psychiatrists treat their patients like test subjects. they will just try medications and see what happens. they openly acknowledge that this is what they do. the lack of due diligence required is disgusting. my psychiatrist now, he sees me for about 30 seconds, he is no different from a drug dealer, except he is licensed by big pharma to be a cog in big drug deals.

    While I am not completely against the use of psychiatric medication, It should be illegal for a licensed doctor to label someone with any disorder. Disorders cannot be proven. These is no test for any single mental illness in the dsm. psychiatry is a pseudo science. there is no doubt that it can help people in some ways, and it has helped me. but the way it is regulated, in favor of big pharma profits, made it so that true help is so difficult to find.

    I now believe that most people who are diagnosed with bi polar or other mental illnesses do not have them. modern society has been gaslit. We are being driven crazy by the modern world and than tricked into thinking we are crazy when this is a crazy world.

    So I went from taking

    100 mg of trazodone
    900mg of seroquel down to 25mg which i maintained for a long time (i quit at 25 mg btw, so it was easy)
    10-20mg of valium a day
    300 mg of topiramate (i was taking this at one point to counteract the seroquel weight gain. this is terrible for your liver).

    Now I take none of this garbage. Maybe some valium to help me sleep or to manage occasional anxiety.

    god help us all!

  100. I’m so frustrated. I have a severe, severe anxiety disorder. I am crippled by thought of taking care of myself. I constantly worry about being homeless (even with my wife taking care of things), am in a constant state of humiliation, and can only “assert” myself for brief moments at a time (if you even want to call what I do “asserting myself.”) I was/am deeply damaged by my mother’s biology and her constant attacking my fragile, sensitive being when it was trying to become whole while I was growing up. In fact, I am “bonded” to her by this. So, here I am a 50-year-old “man” and everything I have tried has failed me (I would not be averse to doing something like Janov’s Primal Therapy if I had the money), but psychiatry has failed me the least, much less than nutritional supplements, yoga, tai chi, exercise, meditation, etc. etc. And right now, I’m thinking of trying Seroquel, because it seems (in studies to faire well for paranoid anxiety, which is totally my MO). But then I read something like this, and I don’t even want to take on 25mg Seroquel pill. But I also know that no amount of fish oil, vitamin D, vitamin B-12, SAM-e, passion flower, kava, St. John’s wort, 5-htp, tryptophan, GABA, ashwaganda, rhodiola rosea, and on and on will ever do anything for me. Sorry, I wish it weren’t so, but I’ve powered down the fish oil like a fiend 15-20mg at a time for weeks and months on end) and the most it has ever done for me is provide the mildest of antidepressant relief. So how are we ever to resolve this issue? Yes, psychiatry is in the dark ages and treats our conditions less than fairly. But what else do we have? Prayer? The confounding nonsense of the Book of Job? (I’m serious.) Because of my anxiety, I too feel that neo-liberalism is an evil conspiracy that favors the few brain biological “top feeders” and forces the rest of us into wage slavery (if we can even keep a job) and offers us only poisonous pills to assuage our anger at this social injustice. But if I were suddenly able to run my own successful business, would I feel the same way? I don’t know. I’m so sick of everything. I’m so humiliated that I cannot hold my own and compete with other men in the world. One of my most common secrete resentments is that most psychiatrists and psychologists don’t really want to help me because if I were well, I would be their boss. They actually like me to give my power away to them every visit, and could never deal with the amount of authority I would take over them if I were well. But I know that’s not true with my current psychiatrist. He’s the most flexible, pragmatic, “you do what you think is best for you” p-doc I’ve ever seen, even if nothing he does helps me. I’m pretty much at the end of the line for SSRIs, SNRIs, and benzos. I can now do MAOIs, AAPs, TCAs, and maybe a newer anticonvulsant (though gabapetin seemed to do nothing for me). I’m at the end of my rope. If my wife wasn’t taking care of things financially, it would be back to my dying mother for “support” (making me even more debilitated than I am now).

    And what of all the people who benefit from Seroquel with few or no side effects? I say this not in an antagonistic way, but in a curious one. I have interacted with many people who have taken AAPs for years (even decades) and they seem to have their lives enhanced, even saved, by these drugs.

    Psychiatry is just too primitive to understand what’s going on with all of us individually, but I do believe it tries its best to “help,” even if that “help” is holding up the dominant paradigm, whatever that may be at the moment (eg “homosexuality is disorder/homosexuality is not a disorder”). Whatever, I know I got a low notch on the bio-psycho totem pole and that pisses me off to no end. I just wish I could heal it because if/when that happened, my life would move in a completely different direction.

  101. Chendri, I am sorry to hear about this dilemma. I sure can relate. I felt helpless and trapped myself. It was huge for me after three decades in the MH system to realize, “Wait, this is all wrong!” You can imagine how torn up I was! I feel for anyone who goes through such a change, because it’s about the most painful thing to realize you’ve been on a very wrong path.

    For decades. I was so, so convinced that MH “care” was THE answer, then realized, very much suddenly in 2012, that what MH “care” had done was to steal my life. It’s very much like leaving a religious cult.

    I am reading a couple of rather basic advice books on leaving a cult. These are useful materials for me because the books address people who are walking away from not just a church, but a whole belief system. The cult victim has already gone through a shift upon initiation, and now, that whole foundation that gave the victim a reason to live is shot to hell.

    I was in a religious cult very briefly when I was a young college student. This was 1979. Then, afterward, I made a study of brainwashing techniques and why these cults were able to sway people and convince them of ANYTHING. Leaving a cult is extremely difficult. You love these people you have met, you love their idealism and the way they welcomed you, you wish their ideas held water, you wish it was really true what they were saying and you could just go back and feel that [fake] love.

    One thing I learned was that I couldn’t be half a Moonie. I couldn’t have the good parts of the Unification Church and chuck the rest. I tried but they kept trying to suck me back in. The lure is so strong. it’s not the same dynamic as the lure of an addiction but just as powerful.

    Likewise, for me, I couldn’t have the good parts of MH care without the bad parts getting forced onto me. Of course there are many good parts of MH care, otherwise, folks wouldn’t stay in it! You meet pals, you have “feel good” groups, and if your home is freezing all winter, you get a warm dry bed and hot shower, meals on a tray…gee, why not check into a hospital? But of course, you find out it’s a very bad idea.

    I’d say for over a year after I had my turnaround, I kept sticking my feet back into the water. I’d try it, then jerk my foot out realizing that world was full of poison. I tried getting off the drugs but staying in therapy. I tried to minimize my contact with MH professionals but stayed on one of two drugs. I tried fake therapy run by “peers.” All of this, to me, was too mcuh compromise. Therapy creates dependency. I was the most independent young person I knew until I was sucked into MH care. It’s my nature to be self-sufficient and minimize need for “help” from other humans. As soon as you go to a therapist or any shrink, you lose something very vital, your self-reliance.

    Most tell me they never had self-reliance. But after I went from being a successful student in a field that no women were taking up to a completely dependent and child-like state, I forgot that i possessed incredible inner strength. It’s taken quite a leap, and painful one at that, to realize that none of that dependency had to happen. I knew then that I HAD to completely get out of anything MH.

    That means divorce from the System. Sure, we wish the criminals that ruined our lives would pay up, some kind of alimony, but sadly, that’s not happening. Taxpayers pay instead, in the form of medical expenses, welfare, disability, and the like, making up for the damages shrinkage did.

    In order to gain or regain strength, you must shed dependency. This means, No Turning Back. It’s a huge, incredibly difficult leap but I found it worthwhile. Please find support outside of the System, anyone you can, maybe someone whose experiences are like yours. Buddy up, hold hands, and together, walk out. We can do this.

  102. Sleves, you still out there? I couldn’t get clear about the message in your outbursts, even though I’m from there and know a lot of the differences. You shouldn’t act like you made us run you off. What are you doing? Is the program for normal feeling right? Try not to get moderated just to see your stuff go away. Think, old-timer.

  103. I don’t even know where to start.

    I first went to a psychologist in December 2013. After not really receiving anything helpful out of the appointments, and at psychology fees of nearly a 1/6th of my monthly salary, I decided that the end is most definitely not justifying the price attached to it.

    I started seeing a psychiatrist in October 2014, after 15 minutes, she diagnosed me with Biopolar Type II. I was prescribed Seroquel 150mg, Epitec (lamotrigine) 200mg and Cymgen (Cymbalta) 60mg.

    After a couple of days I started experiencing severe side effects:

    DAY 4/WEEK 1: 06/11/2014
    JAW CLENCHES
    HANDS ARE JITTERY/TWITCHES
    INVOLUNTARY MUSCLE MOVEMENT (HANDS)
    LIGHT HEADACHE (INFREQUENT)
    NAUSEA (INFREQUENT)
    CHEST PAINS (INFREQUENT)
    -> HEAVINESS BETWEEN BREASTS

    DAY 5/WEEK 1: 07/11/2014
    HANDS ARE JITTERY/TWITCHES
    INVOLUNTARY MUSCLE MOVEMENT (HANDS)
    LIGHT HEADACHE (INFREQUENT)
    CHEST PAINS (INFREQUENT)
    -> IF SOMEONE IS PRESSING DOWN ON MY
    CHEST
    EXTREMELY FAST HEART RATE (130+ P/MINUTE)
    FEVER (INFREQUENT)

    DAY 8/WEEK 2: 10/11/2014
    FEVER (INFREQUENT)
    CHEST PAINS (INFREQUENT)
    -> HEAVINESS BETWEEN BREASTS
    IF SOMEONE IS PRESSING DOWN ON MY
    CHEST
    FAST HEART RATE (100+ P/MINUTE)
    NAUSEA (INFREQUENT)

    DAY 10/WEEK 2: 12/11/2014
    FEVER (INFREQUENT)
    CHEST PAINS (INFREQUENT)
    -> HEAVINESS BETWEEN BREASTS
    IF SOMEONE IS PRESSING DOWN ON MY
    CHEST
    FAST HEART RATE (100+ P/MINUTE)
    NAUSEA (INFREQUENT)

    DAY 11/WEEK 2: 13/11/2014
    FEVER (INFREQUENT)
    CHEST PAINS (INFREQUENT)
    -> HEAVINESS BETWEEN BREASTS
    IF SOMEONE IS PRESSING DOWN ON MY
    CHEST
    FAST HEART RATE (100+ P/MINUTE)
    NAUSEA (INFREQUENT)
    INVOLUNTARY MUSCLE MOVEMENT (HANDS)

    DAY 12/WEEK 2: 14/11/2014
    FEVER (INFREQUENT)
    RASH ON RIGHT ARM (RED DOTS)
    CHEST PAINS (INFREQUENT)
    -> HEAVINESS BETWEEN BREASTS
    IF SOMEONE IS PRESSING DOWN ON MY
    CHEST
    BLOOD PRESSURE TAKEN 165/109

    DAY 13/WEEK 2: 15/11/2014
    FEVER (INFREQUENT)
    RASH ON RIGHT ARM (RED DOTS)
    CHEST PAINS (INFREQUENT)
    -> HEAVINESS BETWEEN BREASTS
    IF SOMEONE IS PRESSING DOWN ON MY
    CHEST
    BLOOD PRESSURE TAKEN 164/93

    I had to cancel my follow-up appointment due to work issues. I went to my pharmacist, he told me that my body might have difficulty absorbing the medication and that it might be damaging my kidneys but he refused to assist me in adjusting my medication. I went to see my GP, he refused to make any adjustments saying that “psychiatry is a specialization” and he doesn’t feel comfortable making any adjustments.

    For months I walked around feeling terrible. To afraid of withdrawal symptoms to try and stop taking the medication.

    March 2015 I finally had a follow-up appointment (yes you wait months for an appointment), took a printed list of all my side effects with me as well as a list of new “symptoms” I’ve experienced since starting the medication. Severe irritation, aggression, anxiety to name but a few. My psychiatrist refused to acknowledge that my sudden decline in health was most probably caused by the medication. To “calm” my nerves she removed the cymgen (cold turkey) from my prescription.

    It’s been over a month and I’m feeling worse by the day.
    I’m so tripped out on the seroquel that I can’t get up during the night for any reason.
    I’m afraid of getting a heart attack. My arms go numb, my blood pressure is through the roof and I’m experiencing severe chest pains on a daily basis.

    I’ve decided to stop my medication by lowering the dose over a few weeks. But frankly I’m scared to death from reading all the comments and horror stories from other websites.

    So… honestly I don’t know what to do anymore.

    • Hi, I know the stories about withdrawal are scary, but what can happen from staying on the drugs is ten times scarier. I am only one person. I stopped all psych meds, either cold turkey or taper, with no ill effect except from one of them, an older antidepressant. I’ve been on maybe 30 or 40 different ones in various polypharmaceutical combination over a period of over three decades. I also know others who stopped, sometimes due to a lost or stolen pill bottle or insurance noncoverage, or they had no money to fill more scripts, who stopped cold turkey, and nothing bad happened. A lot has to do with the inner workings of each person’s body. I’m no expert on that. I can tell you there is one person I’d recommend who does, in fact have expertise on your body: YOU. You and you alone.

      Please take back your body. Doing so is the best route to health. You and you alone should be in the driver’s seat. I define “illness” as the opposite, that is, someone else pulls the puppet strings.

      “insurance” doesn’t mean health. “Healthcare” doesn’t mean health. Most likely, these reduce heath and significantly reduce your quality of life. Wouldn’t you rather take control than be dependent on doctors who barely know you? Take back your body!

      Just because a drug is prescribed does not make it any safer than one you buy on the street. Not only that, but that prescription pad means you are giving up ownership of your body to the prescription-writer. It might seem otherwise, but allowing another person control like that is far from empowering, even if you find temporary relief from the pills. It’s not in your shrink’s best interests to keep you alive. Far from it. It’s in his best interest to keep on prescribing and making tons of money. Why even bother with these people? They’re not ethical. Take back your body and live!

      This is my opinion and mine alone, based on direct, first-hand experience.

      • That was one of my main concerns. I’ve had no “relief” from the medication.

        I’ve been more irritable. I’ve had more sever mood swings than the minor ones I’ve had before the medication.

        After A LOT of introspection I’ve come to the realization that my irritability wasn’t due to a “mental illness” but plainly because I’m not a social person who’s constantly forced into social situations. Then I become snappy and irritated.

        After starting the medication I’ve been constantly irritated to the point of becoming violent. Something that’s never happened before. Points I’ve raised with my psychiatrist and receiving no advice or alterations to my medication.

        That was my first clue that she doesn’t have a clue what she’s doing.

        I’ve been through a few rough batches (to put it lightly) in the past couple of years and I’m realizing now that I’ve been trying to treat my emotions (completely normal emotions) by seeking a miracle pill which doesn’t exist.

        By not working through my issues I’ve slowly made it much worse.

        So my story of tapering of my medication starts now and then addressing the health issues that’s been popping up since I started taking the poison.

        Putting down my thoughts about it seems to make it just a tad easier.

      • Can’t say I’m surprised. Many psychology schools teach all the myths you will find in the DSM. Much of western thought on human behavior is now pharma-influenced, so what you get fed is the “illness model” based on the lie that these “disorders” exist in the first place. It’s not your fault. the brainwshing is very powerful and if a person succumbs to it it’s not a measure of intelligence, ability to judge, maturity, nor bad morals. If’s more a reflection of the brainwasher’s ability to tell lies and act like your pal.

  104. Ken, I tried to locate your comment so I could respond directly to it. I want to know if this muscle pain is accompanied by sudden, and rather crippling tightening of muscles. Sort of like a Charlie horse but it can be anywhere in your body. If it is, this is very serious and is most likely related to elctrolyte imbalance. That can cause either a seizure, very serious heart problems, or death. I did a whole bunch of research on muscle cramping a while back. It’s nothing to mess with.

    This is what happened to me. My kidneys were worsening due to past lithium use. The doctors never bothered to inform me of this. I guess they assume patients don’t matter. I complained repeatedly and nothing was done till I nearly died of kidney failure. Again, they didn’t inform me that I had gone into actute kidney failure. Not worth it, I suppose, just another incapable mental patient that taxpayerrs have to shell out bucks for, better off dead they must have figured.

    If indeed this is what is happening, bypass the shrink and go directly to your PCP. Or find a new one if yours won’t listen. Better yet, go to a new one and don’t even admit your past. Then, they’ll take you seriously. It’s sad that it’s come to that in the USA/

  105. Hi Nancy,
    I’m just posting again. I’m on my 3rd month off Seroquel completely. So far, I feel ok with good emotions coming back- feeling happy attending to my kids- unlike when I was on it at 200 mg. I was seeing stars, weird dreams, light flashes whenever I blink my eyes, red visual field when I close my eyes to sleep in the day, and weight gain. I tapered very, very, very slowly upon a friend’s suggestion. During the tapering, I experienced some unwanted thoughts, anxiety but I held back on my dosage and prayed. Then tapered again when I’m more stable. Weeks after withdrawal, some unwanted thoughts reappear but they became less frequent.
    Please continue your advocacy on anti-psych drugs to help educate the misdiagnosed and misinformed people.

  106. I’ve been trying to slowly withdraw from Seroquel for a couple of months. I have C-PTSD (a severe form of PTSD) and have had insomnia since I was 5. What I have is NOT a mood disorder, though I have experienced depression and anxiety due to the PTSD. The medical community is only interested in mood disorder because PTSD responds to therapy. Any drug used should be temporary for anxiety during therapy. This I know now. Alas, it is to late to refuse the drugs that were designed to “control” me for something I don’t have.

    Two years ago I was put on Seroquel for insomnia because the drug I was on before was not working well anymore. They always blame my insomnia on mood disorder; their code for bi-polar. I’ve gotten used to it and stopped trying to correct them because I want to sleep. I was originally pushed to take a ever increasing dose (got up to 200mg) but refused and ended up on a mini dose – only 50 – 100 mg and I was encouraged to take as much as I wanted to sleep. I believe this was because I had a history of refusing large doses of ANY drug and they hoped I’d increase dosage on my own. They really don’t believe that I have had severe insomnia since childhood. They think I misperceive how long I sleep. And they think its due to mood disorder.

    I was not prepared for what happened to my body. Yes, I slept like a baby, but my abdomen expanded to the point where I looked to be 7 months pregnant. Within weeks!! I became embarrassed of my appearance. Seldom left home. Shopped for untold hours for a pair a pants that fit. Not even maternity clothes fit right. One doctor casually asked if I had cancer. I developed problems with my eyes that required surgery and I now have lightening flashes in my peripheral vision. I am putting myself on a good gut diet my daughter recommended because I just don’t seem to digest anything. I am down to 25 mg now.

    Here is the part that really gets me. I was not able to read all the comments above so pardon me if I am readdressing something already written about. When I started coming off Seroquel I suddenly became psychotic off and on. I heard things that were not there, saw things, began having mood swings, paranoia, cried all day sometimes and paced back and forth in my home yelling at people who had “done me wrong” in the past. Then I would be okay for a while. Then it would start again. I had suicidal ideation constantly. My whole body has become VERY weak. My slight case of arthritis has exponentially worsened. I can hardly move compared to just weeks ago. And yet I can’t sit still either. My back hurts like crazy.

    I don’t think you have to be on a large dose of this stuff to set off a horrible autoimmune response, but it’s the intermittent psychosis that I wouldn’t have dreamed of. Has that been reported? I mean this is bad! My neighbors won’t speak to me because of the yelling and crying episodes, etc.

    Called the Doc. Yes. I was advised to increase my dosage. I think I should have been hospitalized. In fact I still might go to an emergency room and get admitted if I go into another suicidal state, but one thing holds me back. MORE DRUGS. BIGGER DRUGS. drugs drugs drugs. Plus I’ll be a prisoner until THEY decide I can leave.

    So I feel trapped. I wish I had money enough to go to a place that would safely, calmly, sanely help me get free of the drug go round, but we all know that it’s expensive to run those facilities. I don’t have a job and don’t feel like I can handle getting one right now. I’m scared actually.

    • Hi freeme,

      You might want to take a look at this site regarding tapering Seroquel:

      http://survivingantidepressants.org/index.php?/topic/1707-tips-for-tapering-off-seroquel-quetiapine/

      Even if you are tapering slowly, you may have to decrease your tapering speed even more since Seroquel is a powerful drug.

      Also, if you have had insomnia since 5, I am wondering if it might be useful to see a sleep specialist for evaluation of a sleep disorder, particularly sleep apnea. I wish I had a nickle for all the people diagnosed with mental disorders who turned out to have sleep breathing disorders. Google sleep disorders to see if anything applies or doesn’t.

      Best of luck to you.

    • Freeme,
      I understand what you are going through. I used to be on Seroquel -Mirtazapine combination. Now I’m only tapering Mirtazapine. It’s been almost 7 most since I quit Seroquel. The first time I tried, I tried the pill cutter as per one MD advice but it was too fast. I had the same withdrawal symptoms you have experienced plus the weird dreams that the doctor thought my tapering was too fast so I went back to 200 mg.
      I would suggest you check the websites that Julie Greene posted. There you will find some discussions on how to safely taper. But do it very, very slowly. Listen to your body.
      I still look like I’m pregnant due to 25 lbs weight gain. My joints started to hurt and I have to buy a lot new stuff like clothes, shoes that would fit me.
      After getting rid off that drug, I became more of my old normal self, and I can feel the real emotions especially to be felt loved by my little children. When I was on that drug, I was numb- flat affect, no emotions.

  107. Hello Freeme, Wow do I ever hear you about the “they never listened nor believed me” part so I will respond to that. I, too, did not have a mood disorder and now suffer insomnia from PTSD due to psych abuse that began in 2011, funny, right after abuse in Massachusetts General Hospital. I love to name the hospital! Why not? The immediate accusation was “mania,” yet I had absolutely no signs of mania! I am a person who spoke repeatedly of “eating disorder” and was never heard nor believed for over three decades. Recently, I phoned a previous provider and she STILL doesn’t believe me, she said, “But what about your bipolar?” I was saddened by this, realizing that for five years she was clueless as to what I was really experiencing on a daily basis. She asked me, “What about all those stuffed animals you had?” Geez. I feel for you. I wish I could at least give you a hug. I even had a doctor say I was lying about my insomnia, that I was totally delusional and that if I truly slept that little for so long, I’d be dead. Hmmm…..I guess I am dead, then! Maybe that’s why shrinks treated me like I was sub-human. Cuz I’m dead. Logical, right? I sure feel tired, like the walking dead, cuz I am! Stephen King, can you write a better horror story than this? Dear Freeme, I sure wish I could help. One of the best pieces of advice I ever got was from a lawyer, who told me, “I think you need to gather up as many allies as you can.” That was maybe January 2014. Another excellent piece of advice came from an alternative shrink (not a person who identifies with the movement per se but trauma based) around early September 2013, who said, “Go find the others who have an experience similar to yours. They are out there.” Within days, I found MIA. It was a start for me. Other than that, most “advice” you get from folks isn’t too useful. Trust yourself more than anyone else, since that’s what you have, when all else fails. Yourself and your dog. Others leave. There are so many shams and broken promises that you cannot count on anything but your own heart. You never part with yourself. Hold on tight. That, to me, is so amazing.

  108. Thank you for sharing your story. I took 600 mg of Seroquel (also with Prozac) for depression/anxiety from ages 16-19, (this was about 8 years ago now), and ever since I have had similar lasting effects that you described. I never linked them specifically to the Seroquel but your account is uncanny. I don’t remember the immediate withdrawal period now since it was so long ago, but in the 8 years I have been drug-free I have experienced the prolonged withdrawal like you described.

    I developed IBS-like symptoms that I never had before the drug, and I am still struggling with this today. I eat a very restricted diet and I can’t wear clothing that presses against my waist at all or I have pain, constipation, gas, bloating, everything. Like the author, I had aspirations to keep to a healthy vegetarian/pescatarian diet, but it became impossible. How can you be a vegetarian if you can’t eat fruit, dairy, raw veggies, or beans/onions/root veggies without excruciating pain? How can you even be healthy without theses things? I have tried probiotics and have had GI work-up done, but the only thing that works is wearing loose clothing, modifying my schedule to ensure I have BMs regularly, and eating basically the FODMAP diet. I can’t say for sure these symptoms were a result of Seroquel as IBS-like symptoms can be a side-effect of anxiety anyway, but certainly the timing was right for me.

    Ever since taking Seroquel, I have had progressively worse concentration and memory. I was an A student who never had to study because I used to memorize practically anything without effort during class, never even took notes. Fast-forward to the time I got to grad school and ooooh boy was that a struggle. I could barely retain anything and it felt like I had to work harder than everyone else to learn and use the material. I couldn’t focus in class, I was constantly cranky, it was the worst 2 years of my life. I know grad school was much harder than the course work I had done before, but the difference in my ability to handle it was unsettlingly bad. As part of my program we learned to administer basic cognitive tests, and we practiced on each other. I had the worst scores for attention/memory measures than anyone else in my cohort. I’m only 27, way too early to be having these issues.

    What really struck me about your story was the photo sensitivity you developed. I thought I was going crazy with how sensitive my eyes have become to light, to the point where it is often painful to be outside even with good sunglasses. My optometrist just actually referred me to the same Dr. Rosenthal you mentioned here in Boston (didn’t know he wasn’t practicing any longer, guess I’ll have to find someone else… any suggestions?) because she noticed some optic nerve changes happening that need attention (can’t remember exactly what she said now).

    The worst of all of it was the insomnia. That immediate withdrawal effect I do remember distinctly. In the months after quitting my meds, I don’t think I slept more than 4 hours a night. I used to get panick attacks within minutes of even lying my head on the pillow (never had those before, and they only happened at night in bed for months) On Seroquel, I was knocked out for about 12 hrs every night and felt groggy during the day. When the panic attacks started I went to see a doctor who tried to give me Lorazepam and would not listen to me about not wanting to take any more psyche meds. He actually forced the script into my hand despite my protest and assurance that I would not be filling it. Years later my sleep has gotten somewhat better. On a really good night, I sleep 8 hours. If I have the least bit of stress though I really struggle to fall or stay asleep (stress meaning if I know I have to be up at a certain time in order to make it to work…). Again, these insomnia/stress symptoms can be associated with general anxiety. But before Seroquel it was never this bad.

    Other than the above lasting symptoms, I fortunately have no other health problems. Overall I’m happy to say that these days my moods are better, my thoughts under more control (most of the time), and I have found ways to relax that work for me. I do have to make significant daily changes to make it so (diet, only working part-time, being up early enough in the morning to not have to rush, giving myself extra time and space to learn, writing everything down to help me remember, seeing a therapist, meditation practice, etc). But I am a living example that some people with mood disorders can heal drug-free.

    What I’m angry about is that I was so young (16) when the psychiatrist put me on this drug. I had no idea what I was getting into. All I was told is I would have to have regular checks on my triglycerides and that I might feel sleepy so take it at night. When my moods/depression didn’t change, they upped the dose. Then I moved away for college and the university psychiatrist just kept me on the drugs by default, not bothering to explore whether they were helping or hurting. They never actually helped me, I am almost positive about that. My depression and anxiety did not go away or even abate during those 3 years.

    It was a dark time in my life when I was prescribed meds, but I do not think my life was at risk. For anyone considering taking Seroquel or any other psychiatric medicines, I believe if they truly feel their life is at stake if they don’t then go for it. But do it carefully, educate yourself, and make sure that every other part of your treatment is balanced too (make lifestyle changes, talk to a mental health professional that is a good fit, cleanse toxic people from your sphere, find a support group for your condition or experience), and try to only stay on the meds at the lowest dose and for the shortest time that is possible for you. I can’t speak to the detoxing advice she describes in this piece as I was given no advice in the years since I came off them, but it makes sense to be pro-active and try some strategies and supplements mentioned.

    Thank you Nancy for sharing your story and allowing me and others the space to talk about ours. It is somewhat of a relief to see my some of my ongoing health problems in a new way with a possible source. Also – If you have any recommendations for an ophthalmologist in Boston since Dr. Rosenthal is now retired, I would love to know! Eye problems run in my family (but never this young!) so it is time for me to be proactive there.

  109. Is anyone else colorblind? I am extremely nearsighted by inheritance. My eye doctor was concerned that while I was on meds my eyes were changing rapidly. Off meds, not rapidly and he was much relieved. BTW in Boston try Kevin Kaufman, which might be spelled Kaufmann. He takes care/caid, too. My only complaint is that he tends to be rushed. But I feel he has good expertise and many trust him explicitly. His advice has been excellent, especially when I had double vision. He said not to go to prisms. Turned out to be from a pill, of course. Lamictal. Anyway, as for the colorblindness, it is a HUGE nuisance for me. I actually have to apologize all the time since I often have no clue what color a thing is, and not knowing the language here it ends up awkward. I can tell bright orange and that’s about the only thing of which I am entirely certain. That and a granny smith apple. Unless it’s rotten. I have fun joking about it, and while I had double vision I joked that my bank account doubled, too. Too bad that ended.

  110. My son, after a failed suicide attempt entered a psychiatric facility voluntarily. After an hour long interview they diagnosed him with bi polar disorder and prescribed 1,500 mg. of Seroquel daily. After gaining one pound per day for thirty days, he was discharged. We refilled his prescription but he stopped taking the Seroquel cold turkey without telling anyone in our household. Miraculously, he was able to deal with the cold turkey withdrawal and only experienced minor insomnia which he dealt with through self taught meditation. He dealt with unemployment and the loss of his girlfriend by developing new hobbies, including music and by seeking spiritual support by attending church services and doing occasional volunteer work. He continued to work out at the gym every week and lost the unwanted fat. During episodes of ‘brain zaps’ and high energy he climbed trees, and worked in the garden. He found that it was therapeutic to remove weeds, including blackberries on our property. He could work as fast as a bulldozer. Pretty soon, his reputation for weed removal became known in the neighborhood and he was hired by neighbors to remove weeds. The employment, though it was very low wages, improved his confidence and helped him practice his social skills. His paranoia started to decrease and gradually the original trauma that had him wound tight as a drum started to heal. He learned how to build a small forge and made his own custom machete to augment his weed removal. He made his own tools and some of his projects were quirky but we developed a high tolerance for his wild, unfinished projects, seeing as how they occupied his mind and hands. He gathered wild seeds and experimented by planting seeds in a greenhouse. He manually increased the production of wild foods and herbs on our property known to have beneficial medicinal effects. He gave up caffeine in favor of tea and began experimenting with making his own tea blends. He experimented with his diet and ended up eating a diet that is more or less a ‘paleo’ diet high in proteins and vegetables/fruits. Today, he is working as a seasonal wildland firefighter and putting himself through college during the off season. Every day, I thank the Lord that he escaped the bullet of long term Seroquel use.

    When he was on Seroquel, I took a fraction of his daily dose to see what it was like and it frightened me. It caused me to be disassociated for several days, as if I was perceiving everything in my environment through an inverted telescope. I won’t rest until everyone who has been given a psychiatric diagnosis and told they have to take meds for life is informed that they have been lied to and misinformed.

  111. Nancy,

    Thank you for this article. I have been looking into getting off this stuff for a while and this has given me much hope!

    I have been on Seroquel for over 10 years. I have been in recovery from addiction/alcoholism for over 7 years. Before I got clean/sober, I was on over 600mg of Seroquel. Now I am down to 200mg for sleep. I have suffered from horrible insomnia for years, which had to do with some of my addiction issues in just trying to get some sleep, which is how I became addicted to benzos, alcohol, opiates… Seroquel is the only medication I am taking now. Before I got sober, I was diagnosed with Bipolar Disorder. I have had my days but getting clean and sober really helped and I don’t really have a lot of mood swings. The only real issue now is insomnia. I read your article and nearly flipped because over the last year, I feel like I have been continually sick from something…my eyes are more sensitive and I have more of a sensitivity to chemicals. Plus, the efficacy of the Seroquel is fading because I am up 4 times a night anyway…usually eating because of the appetite stimulant effect it has. I really want to get off the stuff. I have ADD to begin with but I am noticing my ADD issues really increasing and I am wondering if the seroquel is also contributing to that.

    I noticed you wrote this article like 3 years ago, which was 1 year post getting off the stuff. So I was wondering how you are going now? I was also wondering who else out there has come off of Seroquel successfully. I have been dealing with insomnia for half my life and I would be so grateful and happy if there was a solution to beast that doesn’t require crazy drugs.

    Any advice, encouragement is greatly appreciated.
    Blessings

  112. I´m writing from North Europe, so English isn´t my mother language, I´m sorry for spelling mistakes.

    I´ve been taken Seroquel for 10 years now, I´m 33 years old. My highest dose was 600 mg per day or even 800 mg (can´t remember anymore). I started with withdrawal a year ago with small steps and a month ago I was on 5 mg. Every time I felt horrible for 5 days (one moment was extremely cold, then extremly hot, I was nervous and wanted to cry and screm without no reason) but then everything was good again. One moment (from 300mg to 200mg) I felt, that syptoms of my illness are back (first I was diagnosed psychosis and now schizoaffective disorder, depressive type). I started to to affraid of people around me, that I didn´t know and I cried a lot, I was scared and tired, couldn´t sleep. I started to take 300mg again and after few months with small steps 300-200-100-50-0 mg I finished with Seroquel. 2,5 weeks later I have a feeling, that I have a high fever and flu (although I don´t), I have nausea, I have no energy at all, some days I can´t stand more than 10 minutes without having dizziness, I feel extremely hot and cold, I´m thursty all the time, one night I felt like I´ll suffocate, I can´t sleep, I´m crying a lot, I´m nervous, I can´t stand situations, where strange people are around me and my whole body is iching like I have some bugs. I´m going crazy!!!!

    At least with Seroquel I felt good – I was sleepy, but everything else was fine. But we are planning a baby and I don´t want to continue with Seroquel, although my doctor says, that a low dose is safe for pregnant woman. As I felt, that I´ll die yesterday or smash my all flat, I took 25mg, but I already feel it is not enough. I was thinking to take 50 mg today. I hope, it helps, but I´m still worried …. Is it really, that withdrawal symptoms may last up to 3 months? Is it normal? Any advice?

  113. Hi Nancy:

    I just wanted to let you know that your post has been much help to me understanding Seroquel, the side effects that become more prominent as dosage increases, and how to combat withdrawal.

    I’ve been taking Seroquel for about 8 years now, and unlike yourself, I consider the drug to be a lifesaver. Also, I’ve been taking medication to relieve mental health issues since I was 16, or half of my life. I know the perils of not having access to meds all too well, and no amount of titrating, weaning, or stopping cold turkey will ever work for myself.

    This all said, I refuse to rely on meds alone to fix my mental health. I workout regularly, try to eat a healthy diet, and am a lifelong learner in order to cope with my diagnosis: bipolar disorder. Shoot, the diagnosis to me was never anything more than a “catch-all label” that never made sense to begin with. Severe anxiety and moderate to severe depression are my key symptoms that are always simmering on a back burner, plotting their next move.

    Recently, I underwent an adjustment to my meds, and damn, was it uncomfortable. I ended up in the ER like yourself, but it was there that I was told that Seroquel is a controlled substance, which culminated in the nurses treating me like a heroin junkie and the hospital ripping me off. Seroquel IS NOT a drug that you can get high off of, and it’s NOT a controlled substance.

    The main problem I immediately encountered after my Seroquel dosage had been adjusted was not being able to sleep, coupled with a nonstop panic attack. My GI issues were keeping me awake, caused me to get drunk to relieve the pain, and forced me to lay on my stomach because the pressure provided minimal relief.

    After reading this post, I experimented with removing all grains from my diet, and all of my GI issues were cured! This is not something that would ever be relayed to me by my primary care provider which is just plain scary. I no longer get the burning sensation in my gut that I have always mistaken for indigestion. I can drink coffee and eat plenty of foods that are very acidic, such as tomato juice, without any problems.

    As you said yourself, “97% of neurotransmitters are in the gut,” and stopping Seroquel can cause major abdominal pain and bloating. Your post as former patient was the only one that even touched this topic. Virtually all of the “professionals” in the psychiatric community that I have talked to over the past 15 years convinced me that (1) you have a problem, (2) you need to be on meds, and (3) your problems will never go away and medication is the only way to combat them. While I finally accepted these as facts when assessing myself, not having access to my meds will always send me into a tailspin. Your “no grains, no pains,” tip has cured issues that I always thought were psychosomatic.

    Thanks again!

  114. Nancy,
    I’ve read your story and those of others, all horrifyingly and tragically very compelling. I too fell a ‘victim’ by that accursed “profession,” and at the same time, I’m still frustrated and angry that I allowed myself, or should I say in some way, sacrificed myself to it years ago; signing a form of “admission” to a state psychiatric hospital where I live. It was probably the worst and least proud decision I could have done at the time, and yet my withdrawal from my last neuroleptic, Abilify, now off 8 months, was the bravest and most difficult thing I’ve ever done. 30 years under the spell of neuroleptics, the straight jacket effects of the drugs unknown to me, until experiencing the agony and paradoxes of withdrawal. I too believed the “chemical imbalance theory” hook line and sinker. Peter Breggin’s videos were a revelation, but not until I found out that the “side effects” no one spoke of are every bit a reality; the mental and physical torment has been beyond “inexperienced” “med” withdrawers comprehension. I saw Breggin 5 times, his “Withdrawal from Psychiatric Drugs,” is the epitome of reliable and scientifically accurate information, but he was of little help to me getting off this last drug. My insomnia and then mania was raging (I didn’t even know what “mania” meant then).
    I was given Seroquel as a sleep aide too, but fortunately used it but a few times years ago. My agony and “panic attacks,” last April were bad enough to call my brother on the west coast and another acquaintance which unfortunately resulted in the “Mobile Crisis Unit” coming to my house, me trusting them to their “new and improved” facility for what I thought was going to be a therapeutic experience, but instead was a hellish experience in a filthy and disgusting place among a series of sociopathic “professionals,” that reduce human beings to something less than animals (a man(?) burst from his room, blood pouring from his forehead, pounding on walls, threatening nurses; no one reacted, but instead threatened me as I tried to avoid him; I’ve never seen anything like this, he was a crazed less than horror, his face a distorted, contorted, hellish countenance. They slapped on an additional 4 serious “diagnosis'” after my 3 additional days in another state facility, though underhandedly, my outgoing diagnosis, was “anxiety disorder, unspecified,” and to seek out “Naturtyme,” a holistic supplement store where I live; those additional diagnosis miraculously appeared on my former doctor’s Internet Website notes when I got out, when in fact, they were not there before. “HE SURVIVED THE HOSPITAL” was written distinctly in one of my “health” review meetings with him… I called everyone I could think of that third day, I had filled out a court order for release, they continually tried to give me Seroquel, but I knew that drug then. Dr. Gay, though I trusted initially, “The Seroquel” doctor, (who knew).

    My story on and off the “meds” would take quite of bit of space. I’m coping day to day as best I can, few friends and no family support. I’ve read again and again how human nature reveals itself when one is in such a helpless position. 3 decades of spellbindedness, a mind now free from the chemical haze and straight jacket, but a very damaged psyche and body and a Master of Science in Earth Science, personal trainer, skiing instructor career path not fulfilled, though my most rewarding position was as an adjunct professor of environmental geology at a local community college.
    These scoundrels in “medicine” never cease to amaze me, there are few if any “ethically inclined” people left in this field as far as I know, two of my last “medical” doctors have quit their respective practices and one wrote to me he’s moving to Hawaii back to his family and to serve veterans now. What is it with this world we inhabit, has our species gone completely mad? Do “doctors” now have the absolute power to discredit anyone that may disagree with their insane drugging and intimidation of their patients, or “labels” they bestow? Who is to stand in their way? I deleted several posts on a survivor site, that I was quite proud of, and completely truthful about, but was afraid of the consequences; I’m fearful now.

    I take no pride in this post, I would gladly forgo the past 30 or so years, had I found the “help” I needed, perhaps a mentor who saw my potential and took me under his wing… then have discovered more “holistic” means for my “mental health,” I would not have suffered so long and hard in a degraded and degrading “system,” that I tried so hard to work out of, unaware that the “legal” drugs I was taking were making it so difficult for me.

  115. Hay there
    I tapped from seroquel 200 quite slowly, but when getting to ziro got the insomia. Took me few days to deside what to do. Its hard to think during this thing.
    Desided to go back to it, have a very good doctor, she put me on 400xr, am now 4 monthes later, but the insomnia fingertips dont leave: Still I am not developing tieredness, cant have a nap. dont sleep good at all. Cant meditate. Hard time falling a sleep even with aids. The doctor says the sleep will be better but the others will not.
    Will love to hear if someone got a solution for that. I didn”t find any similar case in the web. Here, in madinamerica it mentioned that the tieredness do comes back, after up to 2 years, but that if you dont restart the drug.
    Thanks

    • Hi Niv, for sleep, less is more. The tiniest dose will sedate. 400 won’t, not that well and you get unwanted effects for sure. 25 is more sedating. Even a half pill if you can get down that low. So lower dose, under 100, you will sleep. Get as low as you possibly can, and use the non XR if you can get it. After your body realizes it is supposed to sleep, try to go off altogether. I wish I had a link to the website that explains why less works better. Also, don’t use benadryl because it interferes with the sedation. So mixing benadryl with other sedating drugs will cancel out the “wanted” effect. I discovered this after a lengthy bit of research.

  116. Hi Nancy

    Thanks for your article.

    I’m approaching my 9th day off Quitiapine cold-turkey. I’ve come off from 150mg. I’m getting awful sweats, that’s the worst bit. My sleep is definetly disrupted and I get dizzy moments and waves of feeling drunk from time to time. My concentration is also affected. I suppose I feel a bit floaty.

    I stopped it as I was on it for it’s anti-depressant effects but it hasn’t been effective in this department for over a year. I had been on it since April/May of 2015. Despite the side effects my mind does some how feel free-er. I did try to come off gradually reducing by 25mg but that just left me feeling all over the place.

    I’ve struggled with depression for more than 30 years and have exhausted all the anti-depressant groups.

    It would be good to hear from other folk coming off or have come off and are past the withdrawal.

    Many thanks for your article Nancy and I hope you are well.

    hopeful

    • Hi Hopeful, My guess is that since 25mg of Seroquel is extremely sedating and 150 is only mildly sedating, this accounts for the spaciness when you tapered to 25. People do not realize that “more” isn’t going to knock you out more. The smallest possible dose will induce sleep. What happens is that people try it, then think: Oh, I will raise the dose, and then, sleep better. Then, they wonder why several hundred “doesn’t work.” The “effect” of this drug at the lowest doses is mostly very akin to antihistimine sedation. A very high dose won’t do any good at all, say, over 600. People wonder why 800 or 900 “doesn’t work.” It will produce only “funny effects” which may be unpleasant and also, you get the rapid weight gain which probably overshadows ANY imaginable benefit anyone will derive from the drug.

      I hear that some people who are oriented toward “pleasure-seeking” (who enjoy drunkenness and get stoned for fun) will likely feel “stoned” on high doses but I can’t imagine that it’s at all worth it. From my own recollection, even decades ago, some patients were telling me they liked the stoned effect of Cogentin even. At the time I found this idea ridiculous, and I asked them, “Why bother?”

      • Hi Julie

        Thanks for your comment.

        I should clarify something. When l tried to taper l went from 150mg to 125mg. That’s what l meant by reducing by 25mg. Being on the 125mg amount was just too much of an upheaval for my head.

        My experience of quitiapine is different from what you wrote. My starting dose was 25mg. It was really effective both for depression and sleeping for about a month and then it just wore off so l increased it by 25mg. Over the following few months any helpfulness with an increase in dosage would just wear off. My last increase saw me at 150mg. It was still helping with sleep so l carried on.

        But over a year later l decided to come off completely as it has zero antidepressant effect and here l am on my 9th day of withdrawal.

        • Hopeful, this particular drug is not an antidepressant and isn’t designed for that. Some may feel less depressed on it, though. It is given for mania, to lower one’s mood, and for psychosis. Or is supposed to be. I don’t think it’s even approved for sleep alone, though that doesn’t mean it won’t be given off-label, legal or not. I hear that for “schizophrenia” (which doesn’t exist) it is minimally effective, but that depends on prior brainwashing of whomever you ask. I found that the drug caused writer’s block for me, and normally I never get that.

          Antidepressants include Prozac-like drugs (SSRI) which are given out like candy, and also a few other classifications, such as tricyclates, MAO inhibitors, Effexor-like drugs, etc. I can’t say I am impressed with anything Pharm has come up with, especially their lies.

    • Hi Hopeful,

      I would strongly advise you to go to http://survivingantidepressants.org/ and get support regarding reinstating your dose (as low as possible) and tapering very very slowly. Standard recommendation is 10% of current dose every 4 to 6 weeks but you may need to go more slowly.

      Please don’t be fooled by the title as this site supports people coming off of all types of psych and sleep meds. It is not beholden to any commercial interests and is totally dependent on financial donations.

  117. Hi Julie

    Quitiapine can be prescribed at low dosage as an antidepressant. Whilst it is an anti-psycotic, it’s use as as an antidepressant especially when augmented with another psychotropic medication to try and address treatment-resistant depression is common in the UK.

    Rightly or wrongly many medications have valid alternative uses.

    • Very true! The pills are so colorful that with a bit of glue you can make them into a bead collage. I have no doubts that pills have other uses, it’s just that legally (in the US) they cannot legally prescribed for the alternative uses.

      Look at the weight gain Seroquel causes. That could be beneficial to some, but to prescribe it as such is considered off-label. Is it ever done? Yes. IIn the US, that’s not legal but they get around that.

      The “adjunct” effect is approved for the neuroleptic drug Abilify in the US.

  118. Hello, I’ve read this article many many times as I have been taking seroquel for about 4 years. I started taking it when I tried a friends and it helped when i was going through a break up and had also been suffering from depression and anxiety for about 5 years. The doctor, following an app with a psychiatrist allowed me to continue taking it and I gradually upped it by 25mg a time by myself and in agreement with the GP over 4 years. I now don’t think it’s helping me and my therapist says drugs like this can actually have a lot of side effects and could even be the cause of some of my anxiety and depression these days. I was starting to feel really unmotivated and sleepy on 75mg and so lowered to 50mg a month ago and my doc put me on 10mg citalopram to help but citalopram does not work for me at all. Extreme anxiety, lack of hunger, agitation and harrowing insomnia at one point so I have currently stopped taking the citalopram and am continuing with the 50mg on seroquel. I feel like an addict who can’t tolerate the withdrawal from seroquel. I think I’d be happier off it in the long run but wonder how I do that and tolerate the withdrawal without losing my mind and breaking down? I’ve done a lot of therapy and work on myself and this feels like something important to be free from. Do you know how I can get through the withdrawal and does it get better? I know Nancy’s article says one truth is there is no safe place of refuge and this I completely get.

  119. Nancy, I came across your article years after it was written, but the issue is crucial for me now. My mother (61, almost 62) has been on seroquel (and generics) since 2007. Dosages varied from 400mg/day down to 100mg/day. Now she quitted it. Two months (or a bit more) passed. And I am so worried!
    Her legs are swallen (so is the abdominal area) and hurt! She barely walks after being an active person able of walking 10km without sitting down (she loved being outside, actually). She is agressive and she would not let me call any doctor (though, if it is a withdrawal, she may really need no one). She is sometimes paranoid and says awful things. Her night sleep is disordered, while at day time she stays in bed 95% of time. She is passive, “dull”, “unthinking”, absent I’d say. Also she coughs badly((((.
    What would you recommend? She refuses any help and I cannot do anything against her will (neither I would like to). I am outside the US.
    How long does the withdrawal take? Does it make sense just to wait as long as the situation is not critical (she eats, cooks her meals…sometimes she seems quite herself, though passive).

  120. My god I am SO, so glad that somebody FINALLY wrote such a detailed explanation on the dangers of sorquel. I just wish I’d known all of this before my doctor decided to start me on this horrendous medication.
    I’ve just recently turned 17 & was admitted to a psychiatric ward when I was 14, in the October of 2014 after becoming very depressed & traumatised by my hectic home life. I’ve NEVER once experienced ANY psychotic symptoms, at times I get paranoid but that’s just because of my anxiety & PTSD.
    Within a WEEK of being admitted to the ward, my consultant suggested I start taking sorquel, bearing in mind I was just 14 years old & a small height of 4ft 10. I’d never heard of it before & I’ve always refused any antipsychotic medications because I’m aware they’ll be side effects that come along with them. I later found out that 12 out of the 14 young people on my ward were ALL on sorquel & pretty high doses too! One of them being 12 years old!! I refused point blank to take it for almost 3 months until I was placed under section & FORCED to take it. During this time, my consultant didn’t ONCE offer me a leaflet with information on sorquel so I had no idea what it was, what the dosage meant, what the side effects were etc.
    During the month I was sectioned, they’d increased my dosage from 25mg to 250mg. It affected my blood pressure so badly that every time I even sat up in bed to drink something, all I could feel was my heart thumping in my head & chest. On 3 occasions I thought I might actually pass out. I complained to a staff nurse working on the ward & she told me ‘it’s just anxiety you’re having a panic attack’ even though my blood pressure only ever sky rocketed a couple hours after I’d take the sorquel. I went from sleeping 3-4hrs a night to barely being able to make it out of bed after 13hrs of sleep. I felt sick & dizzy a lot of the time & couldn’t focus on the work my school were sending out for me to do. When my mum came to visit me on one occasion I struggled to even form a sentence & was in & out of sleep the whole time. She was that concerned she thought I’d taken an overdose when in fact I’d just been IMed with 50mg promethazine & 1mg lorazepam on top of my 250mg sorqeul.
    As soon as I was discharged from that hell hole after a LONG 21 month admission. I was FINALLY able to start coming off the sorquel. I was SO happy about it up until the withdrawals hit me. Once again I had NO idea what to expect as not a single one of my doctors explained anything about the drug to me. The nausea, stomach cramps, dizziness, heart palpitations were at times unbearable. On top of withdrawals I also suffer with Celiac Disease so have to deal with the effects of that too!
    I’ve just recently (around 8 days ago) decreased it from 50mg down to 25mg & I’m SO glad I’ve persevered. Comparing myself now to when I was on 250mg is crazy!! Not only have I noticed the HUGE difference but the people around me have too! I can complete school work & focus in classes properly, if anything my ADD & anxiety have actually IMPROVED, occasionally I do miss out on some sleep, but now I’m not doped up to my eyeballs I can actually cope with it!
    I honestly believe there should be SO much more warning around this terrible medication. If I’d have known how badly it would’ve affected me & how hard it is to come off, I probably would’ve done something legal to prevent them from forcing me to take it!