After Seroquel

Nancy Rubenstein del Giudice

Nancy Rubenstein del Giudice

June 25, 2012

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.

After Seroquel Comments RSS

174 thoughts on “After Seroquel

  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, Yes I strongly stand behind James Harper’s “How to get off Psychoactive Drugs Safely” (they will send you a free copy) and I take some of the supplements that the author developed. The supplements are now sold by a new company because the old one changed the formulas. (http://neurogeneticsolutions.com/)
        Omega 3′s are fine for everyone. Actually, they are really essential for healing. The brain consumes Omega 3′s at 45% higher rate than the rest of the body. What is variable for people is Probiotics. You are welcome to email me at [email protected] for resources and support.

        • This is my first time posting but i would like to say i wish i could hear more positive experiences in these forums. It is very true that all you read about on the internet is horror stories. No one is going to post a success story, they just keep going on with their now fixed life. Why take the time to say you feel great. When you feel bad like we psych people do, then you look for help, support, answers, etc. I would like to say that without the “cocktail” of meds im on i would have surely committed suicide. I am 100% sure of it. I have battled anxiety my whole life and i hit a wall at 30 years old. I am not proud of the list of meds i have to take but i am also not ashamed…2×0.5mg Klonopin(anxiety), 150mg Lamictal(Mood and severe muscle spasms uncontrollable to until painful, 200mg Seroquel (sleep), 2x50mg tramadol (pain from back/neck injury, and what my doc calls fibro which i don’t believe in…i think i have some sort of autoimmune or virus that ravaged me at one time and lef lasting effects), 75ug synthroid (hypothyoroidis). I plan to remove each of these one at a time over the coming years but as of now these meds saved my F’n life. I was down to 2 hrs of sleep a night for years. The family genetic paranoia crept in and the “flight or fight” response became a 24/7 curse. Now going on 3 years taking these meds and going to therapies both mental and physical. I feel the change coming over me. The anxiety/irratibility/mood swings/paranoia/etc. have come down by at least 80% and i have hope that i will be able to come down off the drugs. I self medicated with everything you could think of for years and am now 100% sober. Anything i take is prescribed to me. I guess i wanted to put a success story in the making out for people to read and have hope. Im half way there. I am truly sorry for those of you that are alone and don’t have a family/friends to support you. It makes a HUGE difference. I would offer my time to you if you lived near by me. I am learning to love myself, love others, have faith in God/me/Good, i am taking martial arts now, boxing, playing soccer, and finally accepting my success in the workforce. You live half a life without self esteem. I finally have some and it feels F’n great. I will leave you with this. YES, meds are bad for your body BUT if you need a CRUTCH to heal just as if you broke a bone then why not use it. With a CRUTCH you can learn to be your own resource and not depend on it. But without that CRUTCH you run the risk of never feeling what we will call Normal/Peace/Love/Calm. My opinion is use the CRUTCH, learn to live without it over time, then take the CRUTCH away slowly and with ease and support of others. If i can help you i will. Just shoot me an email or reply. MUCH LOVE AND PEACE TO YOU ALL. Signed, Godlovesme..

  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

  4. It sickens me to read this. And I also am very aware of this five-year-old I met recently who they had started on this drug. I don’t want to think about her future. The people who did this to her and to you should go to prison for the rest of their lives.

  5. 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.”

  6. 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.

          • Dear MisusSharon,

            I saw a number of eye doctors who said the same thing. The damaged corneal nerves were seen on a confocal miscroscope. My doctor was Dr Rosenthal in Boston, but he has retired from seeing patients. Here’s the thing; I was told this eye condition is permanent and gets progressively worse. I wrote this article in 2010. Four years later my eyes are improving, still painful but improving.I would suggest to your doctor that he is weaning you far too fast. Show him my article, many people have done that……slow and steady wins the race. Best Wishes, Nancy

    • 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!

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. 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

  12. 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.

  13. 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

  14. I ate lemongrass for the first time in my life and was surprised by the energetic effect it had on me. That’s the power of simple *lemongrass*.

    “psychiatric” drugs are lethal and terrifying. But we all know this.

  15. 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.

    • Dear Vabossnurse, Thank YOU for sharing YOUR story. I wrote this article hoping to get the ball rolling on this topic.Of course it isn’t a topic, it is your life. Three years ago I was in the place you are……but I can tell you some differences between us straight away that may weigh in your favor. First, my last dose was 100 mgs, which I now realize was ill-advised. Also, I had a radical hysterectomy about three weeks later. I was completely uninformed about hormone replacement. I think Malene’s response above is excellent advice. As I mentioned in my article, James Harper’s book was my essential guide, and had I not run out of money for the supplements recommended, I believe things would have gone far better. I use their amino acids, Vitamin E, passion flower (for sleep) and biotin. Harper’s book is available free online. As difficult as this is for you now, clearly you have made an informed decision, and staying positive is crucial. For me and many others, becoming an activist to help others has allowed me to channel my outrage. The survivor/activist community really saved my spirit. You are in my prayers. Nancy Rubenstein Del Giudice

      • Thanks so much for your response. I’m just getting started with the whole supplements thing–I figure getting in the habit of taking regular prenatal (no, not pregnant, thank God!) vitamins every day is a start, at least. I also give myself B12 injections monthly for familial pernicious anemia.

        I am going through menopause right now, with minimal hormonal issues. Frankly, I’m on the fence about hormonal supplementation. I’d like to hear more thoughts on this from those who have gone through this process.

        Thanks for your prayers.

    • 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.

  16. 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.

  17. 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?

  18. 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.

  19. Dear Altostrata,Thank you for the wealth of information and resources you have generously provided for the readers of the piece I’ve written. Thank you also for giving me the specific opportunity to go a step further and say what really needs to be said. If you’ll notice, this was an op/ed, not a “Survivor story”. I’m sure you meant the very best in saying, “I’m happy that you’re healing”. It didn’t come across as I believe you intended at all. It felt like you put a happy face sticker on me. Mine is not a “survivor” story, it is a “Victim” story. First of all, you have made the assumption that I am healing. While I like to think that….hope is a better word…..I now have fibromyalgia and can barely move. Before I withdrew from
    the 300mgs of seroquel, I was a NIA instructor, a vegan, had an extensive social life and loved to travel.I never in my life had known the terror of continued sleep deprivation. As a professional dancer (ballet/Jazz) beiginning in my teens, I have taken excellent care of myself all my life. Solely because New Hampshire’s Dr. Karl Lanocha took advantage of me when I was in despair over the imminent end of my long marriage and sold me the chemical imbalance/ drugs like insulin for diabetes lie, I am an invalid for life at 56. Let me be more specific about Corneal Neuropathy. It is 24hr pain. Even with my eyes closed most of the time (air hurts) the pain spreads to the bones in my face and by three in the afternoon, the headache is so bad that I am horizontal. This condition is considered by the world’s leading expert, Dr Perry Rosenthal at The Boston Center For Sight, to be “permanent and progressive”. Before patients are seen for this condition, they like people to see a psychiatrist (sic) to determine to what extent they may be suicidal. I’m not about to sugar coat this. Altostrata, please forgive me if it seems like this is directed at you; it isn’t. The point I want to make is that there is a gap in our mental health reform movement that I think is a symptom of a larger phenomenon. The denial of Victims. As long as this persists, the perpetrators will not be brought to justice, and the Victims will continue to be disappeared; in institutions, in hospitals, homeless, and in unmarked graves. I am not intersted in standing by while the “Mental Health” profession turns to new markets and engages in turf wars. This is genocide. This is not about medecine. It is about murder. Nancy Rubenstein Del Giudice

    • I am also quite angry about the way psychiatric drugs and psychiatric and how its huge edifice of self-serving lies ruined my life, too, Nancy.

      I once had a good professional career. For the last few years, I’ve been all but house-bound.

      My heart breaks for every person injured by psychiatry. I agree its practices very frequently are crimes against humanity.

      I join you in your outrage and protest and encourage everyone who has been injured by psychiatry to speak out, loudly, and often.

      Thank you for raising your voice about this!

      • And then there’s SHOCK!!! That destroyed my life. I lost my past when I no longer remembered my children growing up, and my future as a writer/ film maker and sculptor. I was a pretty fair tennis player, too, before ECT, but after it I couldn’t coordinate well enough to hit a moving ball. For 13 years they had me then one day I said NO MORE! That was in January 2013. In February I got my serve back. It had taken me ten years. I’m still getting off the last bits of Seroquel & Temazepam but am having sleep problems. The only time I will ever speak to a psychiatrist will be in court. I am setting up a series of meet-up groups for ECT survivors for support for each other, to do some research and to present a fool proof case to the people and government of my country, Australia, to send ECT to join the rest of the horrors that represent psychiatric torture in a museum of madness, theirs. I don’t want to be to be a rabid activist, I want to play tennis and play with my little grandchildren; but when our state government recently passed an amended Mental Health Act with the hard won clause on bans for ECT for children under 14 removed just before the Act hit parliament, I have to. We all have to. I would love it if all of the damaged people could send out protests in any way they can. I weep for the children and I weep for the loss of ALL humanity in those who do it. (55 children of 4 and under were given ECT in 2009 – I am searching for those who did it but they are keeping a very low profile, Why?)

  20. 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.

  21. 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.

    • Dear Dr Terry
      Well said.
      Misuse of psychiatric drugs manufactures long term mental illness. As they become part of the overall balance and when they are stopped the system imbalances and the person ‘Relapses’.

  22. An unnecessary hysterectomy is a stiff price to pay for having cooperated too much with the mental “health” corporatocracy. They got one of my testicles (A court order to force surgery on me that was not medically necessary see http://www.drwrongmd.com)

    At least Dr Drew is out there looking after us, or he will be when we can pay him more than Glaxo does.

  23. 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…

  24. 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.

    • Dear jm77, It has been over a year since I wrote this article and I have found
      that James Harper,the founder of The Road Back Health, is far from an expert in protracted withdrawal. I am unaware as well as uninterested in his religion, be it Scientology or other. He is a nutritionist who has done excellent research and I continue to benefit from several supplements the company sells. Perhaps the most important two are the JNK Aminos and Body Calm Supreme (140 different strains of passionflower). I am sorry you have had bad experiences with a religious group, unfortunately this is not an uncommon experience. I don’t boycott the Salvation Army because I don’t agree with their religious backers. Don’t shoot the messenger. I hear that you have had bad experiences but I also think your advice is dangerous as well. Until doctors are fully informed about withdrawal, tapering, and protracted withdrawal syndromes they are, in fact very dangerous, as are the rehabs which push drug substitutions without the least bit of understanding of the physiological processes involved with each drug.The problem remains as I originally stated. The complete lack of research. The tragedy of completed suicides in the aftermath of drug discontinuation is a very serious issue, and I appreciate your bringing it up. I have also seen this, and have lost friends this way. There is no excuse for doctors prescribing drugs that they cannot help people safely withdraw from, and there is a desperate need for services; places of refuge,support in withdrawal, etc. Thank you for your 2 cents.

    • 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.

  25. 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.

  26. 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!

    • Dear Claire, The answer is yes, you will sleep again. But supporting sleep is very important and when people allow themselves to get to a place of desperation (I know it all too well)we often wind up back in the clutches of medical people who only work with pharmaceuticals. Supporting natural sleep is both a science and an art. I still highly recommend Body Calm Supreme (140 strains of passion flower), which you can obtain through Amazon. I recommend it based on my experience and the experiences of many other people I have supported. Keeping your bedroom on the cool side, limiting stimuli several hours before sleep, processing the positives (counting your blessings) of the day, not eating after five in the evening……all these things have helped me and still do. In terms of supplements, it is critical to understand that your body has been stripped of B vitamins (and in particular Biotin and B12)and these vitamins are vitally important to the function of the nervous system. I take melatonin, many recent studies show that it supports the immune system. Some people don’t like it because of vivid dreams. I welcome that invitation into my subconscious. I also take unisom, a very mild antihistamine which helps me fall asleep and does not have artificial dyes. I suggest you do what you can to restore sleep naturally because it is the single most important factor in healing. There are many who belong to the “grin and bear it” school of thought. When it comes to sleep, I am not one of them. Now, to your real question regarding insulin resistance. In the absence of real research coming from the medical profession which profits massively from insulin resistance, we can only speculate. In the early days of my career as a true believer of the chemical imbalance myth, I gained sixty pounds. My memory of those years is spotty, but I lost it fairly rapidly by starving myself. I had a great deal of experience with that as a dancer; not the healthy route for sure. During the years I took seroquel the weight would creep up, and I would resort back to deprivation. I’m sure that took its’ toll, and I don’t recommend it. When I cold turkeyed off 100 mgs seroquel after many years of “consuming” it, my gut literally fell apart. The best thing I did for myself was to pay nearly 400 bucks out of pocket for a food intolerance test. In the two years since I have been recovering from seroquel, I have transitioned completely to naturopathic care, and even though there is no way I can sensibly explain “muscle testing” as a means of determining food reactivity, I am personally convinced that the results are accurate. Mystifyingly accurate. Along the way I have also explored orthomolecular medicine, accupuncture, and other energy based approaches. These journeys have led me to follow a low histamine paleo diet, and I have been doing this for over a year. What I have found is that removing wheat from my diet (American wheat has 52 chromosomes, it used to have 14) entirely has made the biggest difference of all. While before, I could not tolerate any dairy products, I now can enjoy them judiciously. I could not eat any starchy vegetables or any other grains, beans, or potatoes. Gradually that is changing. I only eat organic, and I do not eat any manufactured or processed foods (How I love John Cusak’s speech in in “Say Anything”). I don’t eat at all after five in the evening. I’m sure this sounds like a prison sentence to some people reading this, but let me tell you; anyone who has gotten to a place of abject terror over food comes to the place of eating to live instead of living to eat. What sounds extremely difficult becomes easy and routine, and feeling nourished and balanced is a far better reward that any momentary delight in indulgence. Having said that, I believe in moderation in everything, including moderation (Here I invoke the spirit of contributor John Shea)and occasionally I can be found at Baskin and Robbins with a scoop of Jamocha Almond Fudge and Mint Chocolate Chip, prepared to pay a larger price than the cost of the ice cream. The issue of insulin resistance is one that needs to be examined by the medical profession, but as an outsider looking in, in seems to me that the culprit has been the food industry since the nineteen fifties combined with the pharmaceutical barrage of symptom management. I personally suspect tha the changes in our food supply have made insulin resistance part and parcel of living in America. Can we heal? It depends upon what we mean by healing. If it means being able to return to the eating habits that brought us to this place, no, I don’t think so. But if healing means living more healthfully, the answer is absolutely yes. I hope this is helpful. You are fortunate, Claire, that you were only on seroquel for 9 months, but pay close attention to the forcast of a six to eight month kickback. If you’re paying attention, and you do have a resurgence of withdrawal effects during that time frame, you will be less likely to wind of going through unnecessary workups for things like fibromyalgia or MS. I’m convinced that we largely underestimate the body’s miraculous healing powers because we have been misled by those whose oath was to help us.

    • 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.

      • Hi Claire, I reread the losing weight comment and I wanted to share that in the last few years I have seen quite a number of people lose the weight they gained on drugs on the Paleo Diet. Pretty much Paleo is about stopping grains and sweeteners (honey is legit).I was on it for two years very strictly while I healed from “leaky gut” (very common these days). My partial understanding of weight gain is insulin resistance, and it’s my belief that this process is also induced by our fake food supply. Here’s what wikipedia has to say;One of insulin’s functions is to regulate delivery of glucose into cells to provide them with energy.[1] Insulin resistant cells cannot take in glucose, amino acids and fatty acids. Thus, glucose, fatty acids and amino acids ‘leak’ out of the cells. A decrease in insulin/glucagon ratio inhibits glycolysis which in turn decreases energy production. The resulting increase in blood glucose may raise levels outside the normal range and cause adverse health effects, depending on dietary conditions.[2] Certain cell types such as fat and muscle cells require insulin to absorb glucose. When these cells fail to respond adequately to circulating insulin, blood glucose levels rise. The liver helps regulate glucose levels by reducing its secretion of glucose in the presence of insulin. This normal reduction in the liver’s glucose production may not occur in people with insulin resistance.[3]
        Insulin resistance in muscle and fat cells reduces glucose uptake (and also local storage of glucose as glycogen and triglycerides, respectively), whereas insulin resistance in liver cells results in reduced glycogen synthesis and storage and a failure to suppress glucose production and release into the blood. Insulin resistance normally refers to reduced glucose-lowering effects of insulin. However, other functions of insulin can also be affected. For example, insulin resistance in fat cells reduces the normal effects of insulin on lipids and results in reduced uptake of circulating lipids and increased hydrolysis of stored triglycerides. Increased mobilization of stored lipids in these cells elevates free fatty acids in the blood plasma. Elevated blood fatty-acid concentrations (associated with insulin resistance and diabetes mellitus Type 2), reduced muscle glucose uptake, and increased liver glucose production all contribute to elevated blood glucose levels. High plasma levels of insulin and glucose due to insulin resistance are a major component of the metabolic syndrome. If insulin resistance exists, more insulin needs to be secreted by the pancreas. If this compensatory increase does not occur, blood glucose concentrations increase and type 2 diabetes occurs.[4]. I hope this was helpful. Best, Nancy

  27. 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.

    • Dear Lynn, I’m so sorry you are going through this. If I can be of any support, my email is [email protected]. In the meantime I would strongly suggest that you go on the low histamine paleo diet which you can read about on Monica Cassani’s website, Beyond Meds. That will help a lot. Best wishes, Nancy

    • 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.

  28. 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

  29. Hi Danielle, I’m so glad you wrote. Since I wrote “After Seroquel”, I have been very involved with psychiatric drug withdrawal, and while it’s very true that responsible research has not and is not being done. People are doing tapers and we are learning a lot. I am sorry to say that Dr. Breggin’s book on withdrawal is a joke to those of us out here in the trenches. We know that depending on the person, there can be enormous sensitivity, and that while some people really can withstand single and double digit cuts (1% to 10%) that those who are too sensitive crash and burn. It is a hell of a lot smarter to learn how to taper in steady microdoses, building up the cuts as the body gets stronger and then slowing down again as zero approaches. This is the safe way. I wish doctors would wake up. In the meantime we all have to start educating them. Even that, however, is of minor importance compared to the needs of the many, which is Right Now. I would be happy to communicate with you privately at [email protected]. I will continue on with some common sense observations for anyone else reading. Okay, so think about this; your body chemistry (not just “brain chemistry”) has changed in order to adapt to the drug. Withdrawal is traumatic to the body. Here are some ways we can reassure the body that it is not in crisis. Why is this important? Because when the body believes it is in crisis it also goes through adaptive changes. People sleep less (gotta be ready to run!), they feel anxiety (preparedness for acting on threats), fat storage patterns change (the body makes different choices to remain prepared for flight)…these are just a few. It’s not good to taper under those conditions. Splitting the doses into three eight hour doses (No Dry Cutting; you lose control over the dose) evens out blood sugar, blood pressure, and keeps an even dose of the drug passing through the liver in a 24 hour period. Addressing sleep issues naturally is critical. Being prepared to do that is of equal importance because the single most dangerous thing that happens in tapers is when people stop sleeping. Not only can’t they heal (you really need five and a half hours minimum) but people become suicidal, sometimes psychotic, and are often interfered with as if they were “having a relapse of “mental illness”. By being prepared to deal with insomnia effectively all that can be avoided. Strengthening the immune system is critical, as well as healing the gut, so it can absorb the necessary nutrients; equally important. Thanks so much for writing, you represent the new reality; Neuroleptics are being widely prescribed for sleep. I am beyond outraged. Best, Nancy+

  30. Hi Rossa, It’s always so nice to see you. People are told to split pills in a pill cutter (or using a razor). When we do that there is dust, and there are bits too small for the eye to see that are lost. Many people have no choice but to do that.It does mean that some of the drug is lost, so really accurate measurements are not possible to make. By diluting tablets in liquid (a solution is better than a suspension; a solution is when the molecules of the drug bind with molecules of the liquid. A suspension means the drug molecules are still distinct from the liquid. Many people have succeeded in tapering from suspensions, but they have to be careful to keep shaking the liquid to get the suspension as even as possible). When I began my taper from Klonopin (which is fat soluble; I use goats’ milk) I was so sensitive that my cuts were .oo125 cc’s. We really wondered if it was even possible that I could get off at all. But as time went on, I got stronger. Started sleeping better. Now my cuts are at 1 cc. That’s pretty huge for me. And they will get bigger. But as we get to the last 25mgs we will slow way down, and then slow down even more as we approach zero. When I’m home free, my assistant and I plan to write about it, but it ain’t over till it’s over. The people I learned to do this from have done a RTC of 180 people who were successful tapering off benzodiazapines. They are waiting for a patent (legal protection) and they will publish as soon as they can. I have applied the same principles to tapering from other drugs. I’ve probably over answered your question, Rossa, but I hope it was helpful.Best, Nancy

    • Nancy, bear with me. I am really, really, slow. I hated high school chemistry. I’m getting two different messages. (1) There is a cut, and some wastage, but the rest is dissolved into the solution. (Doesn’t make sense, because of the wastage.) (2) Dissolve the whole tablet into the solution. By extension, you would then have to stir and siphon off a small amount with a syringe. I am confused about why you are cutting, but I presume you mean siphoning???

      • No problem Rossa, I’m sure it was how I wrote it. There is no “Cutting pills”, only dissolving them as best as possible (solution and suspension). I believe I used the word “cut” also to mean “Lowering the dose”. So for example, at my most sensitive I was making my solution (Correction, my assistant Laura was doing the work because I can’t see well enough) and then “lowering the dose” by .00125ml (taking that much out and throwing it away), then splitting that liquid into three even doses, which I take at eight hour intervals (for me it’s 6am,2pm,10pm). Please don’t hesitate to ask until we get this clear. It occurs to me we all understand words in the context of culture and experience. I loved high school chemistry. Mr. Morrison used to ask me to play guitar for the class. People make all the difference. Love, Nancy

        • Got it, Nancy. I was getting hung up on the word “cut”, which I don’t associate with liquids. Thank goodness my high school chemistry teacher didn’t ask me to sing, or I would have hated chemistry even more. LOL. My high school was so poor and so rural that I don’t remember our having a lab. Can you believe that? Perhaps a laboratory would have changed my mind about chemistry. Love, Rossa

  31. 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

    • Im so sorry to hear that. Your memory loss, stuttering, and uncontrollable hand movements happened after you stopped Seroquel? I’ve been on it for years and I’m so afraid of what is going to happen when I stop it.

    • 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.

  32. 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?

  33. Dear Ripley, If you would like to communicate with me privately, you are welcome to email me at [email protected] with the understanding that I am not a doctor, and that my sharing of resources and experiences should not be construed as medical advice. For readers seeing my response to Ripley, my remarks are addressed to you all. I don’t believe in Bipolar Disorder.There has been oodles and oodles of money spent on researching “Bipolar Disorder” and the study they trot out to convince you that it’s a brain disease has no undrugged control group. Read that sentence again. The “Bipolar Subjects” had all been fed neuroleptics, ssri’s, mood stabilizers (really “anti-seizure” drugs) and other assorted tranquilizers (including benzos) for years. Their brain scans all showed shrunken frontal lobe and basal ganglia (Grace Jackson MD has documented and written about this). Ripley, at this point I pause to say to YOU; “Friends don’t let Friends Cold Turkey”. Please Ripley, whatever else you may read on this site, Cold Turkey can land you disabled. Disabled, period. People come off these drugs safely without any further harm, but they do it well-informed from many sources, and they do it slowly, and with support. I have something very unpleasant to say now; If I went off 200 milligrams of seroquel cold turkey I wouldn’t be keeping cruise reservations, I would be making medical arrangements.The horror story that I wrote, which I assume you read (because you left a comment)happened after cold turkey from half of what you did. You may be a miraculous toxin metabolizer and you may be fine, or you may be in the roughly forty percent of people who have a problem. There is no research, only anecdotes. Mine is one of very, very few out there. I read about an eight month kick with seroquel; where all of a sudden the shit hits the fan. Because I read that (and that web page has been down for two years now, but the guy had a handle on biochemistry and pharmacology)I was emotionally prepared, in a way, for what happened to me (my eyes).I am not speaking to you as an expert. But what happens if you get really, really, really sick on a cruise? You’ll have to make that decision. There is no research, not even a facebook forum where people who have gotten off of seroquel support others. Why I can only conjecture; when I decided to come off in 2009, the very nice psychiatrist “treating me” said, “People like you don’t come off drugs”. People really had been told, “You need to take this for life”. It’s still happening and I fear that this is what is happening to you. You have a lot going on in your life, you don’t eat well enough or sleep well enough and depression hits you like a two by four. You’re at your very wits end, or beyond, and then someone tells you, “Oh, you poor thing, you’ve got this brain disease that’s making you feel the way you do. There’s no shame in it, it’s a physical disease. Like Diabetes, you need to take medication for the rest of your life”. I believed this for over ten years. The shock of learning it isn’t true has completely changed my life….for the better. There’s no brain disease. But life is hard. And being human is messy.Ripley, I’ll be thinking of you, and wishing you well. The journey you are on that brought you to Mad In America is quite an adventure, and the people here are the best. I spent a couple days deciding whether or not to say these things that I think you need to hear. I thought of some very good reasons not to say anything. And then I changed my mind. Someone should have told me sooner. Many people should have told me sooner.Take Care.

  34. 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. :)

  35. 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

  36. Dear Trevonline, DO NOT cold turkey off the seroquel. Not in any way shape or form worth the risk. The fact that you are exhausted suggest MANY things you and your doctor need to look into. Adrenal fatigue is the first thing that comes to mind.Chronic fatigue syndrome (an autoimmune issue) is one of the many things people who have come off psych drugs experience, so I’m not sure I’m on board with your assessment that you are OK. Certainly not OK enough to COLD TURKEY off the least studied class of drugs; neuroleptics. Mine is literally the only article on seroquel withdrawal on the internet. But in truth, NO ONE is safe. It’s Russian Roulette; we have NO IDEA who will walk away and shake off the dust and who will be disabled and in chronic pain. DO NOT COLD TURKEY. Think of all the people whose lives would be affected if you couldd no longer be active in their lives. Think of your daughter. Nancy

  37. 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.

    • Dear Sweep, Sounds very, very familiar. If I can support you, or you just want to rant, I am at your service. I really appreciate your sharing because you’ve mentioned some important things. You have shown us that two years (as opposed to my example of over ten years)of taking seroquel and tapering slowly still left you in a similar state of crushing insomnia and general disability. This is why I wrote this article; so that we could gather this kind of anecdotal information. Sweep, please consider this; you took this drug during a difficult time. What that means is that just when you needed to move through and process, your brain was assaulted. Not only are you recovering from this assault, you also are likely to be carrying old wounds that need healing (the difficult time that brought you to ask for help). The anger that you feel is likely bound up with this. I know mine was. So what I’m saying is, honor your anger, allow it to be a healing and purifying heat that carries you into a place of freedom to move forward.Other people who tell you you need to let it go are….other people.Sometimes other people are right. Letting go of something you aren’t finished with is not letting go. My healing has been slow but constant. Three years after writing this article, I’m sleeping six hours or more. Supplements really help me. I take L-theanine, melatonin, Seriphos (a cortisol managing natural formula) and passion flower. Of course, I’m still microtapering off my last drug, Klonopin, and benzos have strong insomnia effects, but even so, I’m sleeping. I know you will be too. Take Care of You.

  38. 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

  39. 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.

  40. 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.

  41. Dear Rittenhouserobz, Yes there are MD’s who look at the bigger picture. Please contact me and I will help you find someone. Contact me @ [email protected]. There is no way of knowing now how a particular person will react to coming off seroquel. This we know; slow and steady wins the race.Supplements supporting withdrawal have been and continue to be critical to my wellness and I’m happy to share resources with you, as well as my own personal experience. Please do not hesitate to get in touch over the holidays. Your assessment of the medical profession resonates with mine. “They” are blessed to have you in “their” corner.

    • I feel very upset that so may people are so freely diagnosed with bi-polar or other illnesses requiring lithium which can be toxic – toxicity of Seroquel aside. It is great you have realised that your friend is not his normal self, rittenhouserobz, and you have asked questions and sought help so early on. I feel confident that with your support your friend will be ok :)

  42. 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.

  43. Dear Sir,

    While I appreciate your thanks, the best I can do here is to tell you the truth. First of all, I find your nom de plume highly offensive. Secondly, I frankly don’t believe that your wife is “Bipolar” for several reasons, the most important one being that you like your wife drugged.The second reason is that I have spent years reading research, and there is absolutely no proof that “Bipolar Disorder” exists. I am not denying anyone’s experience, but in terms of medical evidence, there is none.Any female on the planet can walk into a psychiatrists’ office and be designated “Bipolar”. Lastly, it is clear to me that you are not doing your homework because there literally is no such thing as a chemical imbalance until one takes psychoactive drugs (which can even include some antibiotics). Let me repeat that; There Is No Such Thing as a Chemical Imbalance.It is a marketing fiction. I’m sure you mean well, or at least I hope you do, but from your post I have to be honest and tell you that your post is quite disturbing. If your wife, whom you should never call “crazy”, wants to communicate with me about diet, or anything else in my article, she is welcome to contact me at [email protected].

    I really don’t mean to be rude, and I hope you can hear what I’m saying.

    Psychiatric drugs are not “medication”, Sir, they are chemical agents which disable the brain and are highly toxic. Used in crisis as respite for a short duration, some people find them helpful, but they “treat” nothing, and taken long term lead to chronicity and relapse.

    If this is shocking news to you, I urge you to stay here and read more articles. This is where people come when it’s time to wake up.

    Wishing you the best, please let your wife know she is welcome to contact me. And thank you for your comment.

  44. Response #2 to “Crazy”,

    I apologize for the harshness of my first reply. We trust doctors and it’s hard to believe that they would provide false information, but unfortunately that is now the world we live in.

    I can imagine this might leave you in a place of not knowing where to turn. There are people who can help you navigate through this mess, and nutrition is also critical to mental health.

    The website I would recommend to you is Beyond Meds.

    Equally as important, the real question for your wife is not “What is wrong with her?”, it is, “What happened to her?”. Finding a therapist who can be a compassionate witness may be extremely helpful provided they are well educated in the myths of so-called mental illness.

    There really are options and alternatives and I wish you both the very best on this daunting journey. If I can be of service, please let me know.

    Sincerely, Nancy

    • Nancy,

      Your first reaction was/is correct in my opinion. Beware men claiming to be helping their supposed mentally ill wives when they are most often abusers who drove their wives to a helpless, powerless, insecure position with constant verbal, psychological and other abuse without the women even realizing it until it is too late. See books like The Verbally Abusive Relationship, Verbal Abuse Survivors Speak Out, When Love Goes Wrong: When You Can’t Do Anything Right; Invisible Wounds, The Emotionally Abusive Relationship, Women Who Love Psychopaths (also web site Lovefraud), Men Who Hate Women and The Women Who Love Them and a zillion others exposing how women can lose their heath, self esteem, vocations and very self through sneaky, systematic gas lighting and verbal/emotional abuse by predatory, control freak husbands.

      I would suggest that the woman/wife should contact you if she truly has a problem rather than someone who may be just trying to gather more ammunition against her to make her appear the “crazy wife” for material, custody and other gains as is all too typical with abusers referring to “crazy bipolar wives.”

      • Dear Donna,
        Dear Donna,

        Clearly you reacted the same way that I did, but I’d prefer to reserve judgement. We really don’t know the situation. What I greatly appreciate is the amazing list of resources you have provided, I’m looking forward to following up on the articles and authors you cite. Thank you more than I can say.

        And I’m glad I made your day!!! Not everyone appreciates my style of communication as much as you do. Thanks for your kind words.

        Sincerely, Nancy

        • Nancy, thanks for your positive response. Since I have a research education and work background in research/information, I sifted through tons of resources to find these critical resources to save the lives of loved ones in my own life.

          I am posting Dr. Carole Warshaw’s article on psychiatrists deliberately ignoring domestic and other abuse like work/school bullying that are equally deadly and stigmatizing it as bipolar, paranoia and other bogus DSM stigmas though she is more tactful than me as you will see. The reason is that this article and others can be very hard to find among all the toxic Big Pharma fraud garbage and their shills like Nassir Ghaemi et al pushing the bipolar fad fraud for everyone in the galaxy by this little dictator. Ghaemi uses the brilliant ploy of Mitch Daniels, Big Pharma CEO, exposed by Dr. David Healy that any toxic side effect of SSRI’s, kiddie cocaine or other toxic psych drugs not to mention abuse related trauma are all evidence of the victims’ “mental illness” or bipolar per Gamey Ghaemi!! I’ve followed Ghaemi on the web and he cites every bipolar lie, fad, fraud ever invented to push the bipolar fad fraud monstrosity on one and all with no mercy. He has even written a bogus historical book whereby he retrospectively stigmatizes many great leaders like Abe Lincoln as bipolar with the pretense it is some great privilege, accomplishment and sign of greatness to get the bipolar stigma from his majesty Ghaemi, which is another Big Pharma fraud ploy to sucker more victims into this death trap. Ghaemi’s favorite literal poison is Lithium no less to destroy one’s kidneys and other organs with impunity.

          Anyway, here is the article about Dr. Warshaw:

          http://psychnews.psychiatryonline.org/newsarticle.aspx?articleid=104895

          As you can see, Dr. Warshaw exposes how abusive husbands controlling their wives health insurance do a number on their victims that the mental death profession aids and abets with their life destroying stigmas like bipolar especially.

          • Nancy,

            Here is an article on complex PTSD coined by trauma expert, Dr. Judith Herman, I cited above. Note, the article exposes here that such complex PTSD that comes from repetitive abuse/trauma situations like domestic/work/school and other bullying, mobbing, abuse, concentration camps and similar long term “combat” conditions is often misdiagnosed as borderline, self defeating and other personality disorders.

            It appears good old Nassir Ghaemi has managed to get all these abuse/trauma stigmas lumped into the horrific, life destroying bipolar stigma in the DSM 5 if I’ve understood correctly, so this little dictator must be in heaven so he can poison everyone on the planet with impunity for the latest psychiatry eugenics culling of humanity attacking the weakest, most vulnerable members of society. Bipolar is Ghaemi’s bread and butter as a supposed expert on this mythological topic now that even Dr. Thomas Insel has admitted that the DSM and its stigmas like bipolar are totally invalid and lacking any and all scientific, medical and other evidence. Joel Paris, an expert in what Dr. Judith Herman calls the insult stigma of borderline personality disorder for abuse/trauma victims, accuses those like Ghaemi of “bipolar imperialism” exposed by Dr. Joanna Moncrieff in her recent article of disgust about the huge, unwarranted expansion of bipolar to push toxic neuroleptic drugs to the great peril of most victims so misdiagnosed. These never ending turf wars would be amusing if the consequences to their victims were not so tragic given that not only is the stigma degrading and life destroying, it is also guaranteed to come with lethal poison drugs to shorten one’s life by an average 25 years with the remaining years a life of hell.

            Dr. David Healy has written the excellent book, MANIA: A Short History of Bipolar Disorder, exposing that the bipolar fad fraud was invented to push the latest lethal drugs like atypical antipsychotics, Depakote and other poisons on patent, which infuriates Nassir Ghaemi to be sure, causing Ghaemi to resort to Mitch DanielBig Pharma ploys per usual. Dr. Healy has also written great articles on bipolar mania excess and biobabble and contributed to books exposing the horrors of the child bipolar drugging nightmare invented by Joseph Biederman who compared himself as second to God no less. Needless to say, the bipolar imperialist Ghaemi is all for stigmatizing toddlers and children with bipolar and drugging them to death a la Biederman with Rebecca Riley as well as taking Big Pharma money.

            The current bipolar fad fraud was actually invented when Robert Spitzer, malignant narcissist, took over DSM III and treated humans like rock specimens there as he did in real life. Experts admit that the bipolar stigma was created as a garbage can stigma to incorporate a wide variety of abuse/trauma victims and character disordered perpetrators much like schizophrenia functioned in the past. Dr. Healy shows that the current bipolar fad fraud with a majority permanently disabled by toxic drugs bears little resemblance to the very rare manic depressive illness in the past from which most people recovered and went on to live normal lives also documented by Robert Whitaker.

            If I can be of any help in providing any further documentation for you, don’t hesitate to respond since I am receiving followups of this post.

            Again, I think your first instinct and reaction was right on the mark and regardless, nobody should be talking about anyone as “crazy” without their permission, which would be highly dubious to say the least in the case of a woman given that women have been the all too frequent targets of abusers in the home and in psychiatry colluding together to destroy women and children with impunity for greed, power and sadism.

  45. 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!!

  46. 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.

  47. 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.

  48. 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.
      .

  49. 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/

  50. 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

  51. 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

  52. 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.

  53. Dear Dear S, I can only tell you what I would do. I would back the hell up!!! The cardinal rule for me is “no sleep, no withdrawal”. There are many people who have traveled this road and can coach you, even advocate for you. You can email me at [email protected]. If you were hospitalized, they would put you right back on the drug……being hospitalized is to be avoided . I’ll be honest, psychdrug withdrawal in general can set off nerve pain in people who have never had it (as can taking these drugs to begin with). You will have to taper very, very slowly…….and you will need help and support. You have a number of difficult and complicated issues to weigh through, and you must restore your sleep in order even to entertain all these thought. Anyone would. We simply can’t function or heal without sleep. The insurance question is another matter. Educating your doctors could help you resolve that situation, but either way you are going to need a safe supply in order to taper. I have to be honest here, if it were me in your situation, I might be considering lowering the dose as much as possible (Very Sloowwwly) but not taking the chance of completely stopping it. I don’t know your age, but you have to consider both the routes of staying on a lower dose and taking the chance of what would happen if you discontinued completely. There is no research. Lastly, if I were you I would do ANYTHING (even be hospitalized) to avoid being cut off. Cold Turkey off 100mgs was a disaster for me, and I had no complicating health conditions. Your situation is difficult but please remember that many have faced these challenging situations and prevailed. I hope you will consider changing your nom de plume. There were good reasons for your suicidality, and once you figure those out (for me, it was the drugs that caused suicidal thought and actions)you can move forward. Holding suicidality up as your identity is not a good idea. You are not suicidality. You are a living, breathing, multidemensional being who wants to live and heal.

  54. 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

  55. 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!!!

  56. “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.

  57. Dear AgniYoga,

    Assuming makes an ass out of you and me, as the saying goes. I started withdrawing from drugs in 2008. My loving sister came swooped down from Mass. to N.C. and had me arrested and force drugged. All she had to do was call 911 and say I was suicidal, and they came and destroyed my life in North Carolina. That’s when I became an activist. I spoke up and the response was that my prescritions were cancelled, no psychiatrist would see me, no family doctor in Asheville would see me because no psychiatrist would see me, and I knew if I went to the hospital that I’d be shot up and sent off to the state hospital, Broughton (famous for their brownies). That did eventually happen, but not before the CEO of the largest child drugging outfit in Asheville (The Pisgah Institute) called the police and reposted me as a “suicidal prostitute trespassing at a church”. It was a church where I had sung in the choir, and I was scheduled to perform. Father’s Day 2010. The police grabbed me outside the truth, took me to the station and treated me to a sexual assault and kept me without glasses or medication for 24 hrs. I came to Alaska and began working at PsychRights in October of 2010 after Jim Gottstein and Kim Crespi helped get me free. Today I am still withdrawing. Over a year of microtapering from Klonopin.

    • …..Outside the CHURCH (sorry for the freudian slip) was where the Asheville police snatched me. You were certainly correct about depression being the portal through which the torture was imposed on me, and many other survivors I know, but another large group is people who experience disorientation or psychosis due to many causes. I appreciated your last line asking why people experience depression, I thought it was very insightful as well as poetic, but it felt to me as if it was focused on the individual, when my experience has shown that trauma of one kind or another is always involved, and one of the things that needs to change about any mental health system is the assumption that people who present are either to blame or can even necessarily be responsible for the situation. Thank you AgniYoga for your comment.

  58. 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

  59. 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)

  60. 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.

  61. 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.

  62. 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.

  63. 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.

  64. 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

  65. 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

    • Dear Liloisabride,

      Congratulations on finding the Love you deserve.

      Since you are already angry with the “pdoc”, be prepared to get angrier. Bipolar is made-up. There is no disease, no medical evidence of any such “disorder” at all. None. This is not to say that people don’t identify their experiences with this label, but that’s all it is. A label.

      The weakness in the wrists that you mentioned is something that I have experienced as well. Pretty much anything under the sun can be part of withdrawal because the drug is a toxin, and every cell in the body is affected.

      Insomnia is without a doubt the biggest challenge, but it sounds like you have someone who will stand by you, and that is the most important thing. One of the things I have learned about getting sleep is that exercising after five in the evening can overstimulate me. Even being out for a social evening can interfere with my fragile sleep. Overstimulation is very real. Learning your body’s cues will help. There are many good websites on “sleep hygiene”, but taking overstimulation into account is critical. Some people find that reducing electromagnetic fields makes a big difference (turn off all electronics). White noise helps many people.

      Watch carefully for what I call “the kick”. For some reason, and in the absence of any research we really have no idea why, what we are seeing is than many people encounter a reemergence of severe withdrawal between four to seven months after discontinuation (your very last dose). If you are not surprised…. IF this happens……you can ride it out without getting diagnosed with fibromyalgia, MS, or whatever your gp can think of. Time is your friend. You will heal.

      If I can help you connect with resources, you can contact me at [email protected].

      Welcome to the world of Survivors. Best folks in the world.xoxo Nancy

  66. 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.

  67. 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.

    • Dear Josh,

      Thanks for writing, thanks for finding this site. I think we Americans have much in common with New Zealanders ,being the only countries that broadcast pharmaceutical propaganda over public media.

      Yes, what happened to me is outrageous……criminal really, but far from uncommon. I wrote this article three years ago. Several months afterwards I went into benzodiazepine tolerance and the article title I’ve been contemplating is “From Seroquel to Benzo Hell”.

      For the last eighteen months I have been going through a liquid microtaper from 1.5 mgs klonopin. I’m down to .12 mgs but the last part tends to be the most difficult and I don’t yet see the end in sight. I have learned so much about drug withdrawal in the last few years, and met so many, many people who are stepping up to learn and help. I very much feel as if I am living in the trenches on a battlefield.

      Unfortunately, I am housebound for the most part. Although my eyes have improved a lot, I still can’t drive, and the benzo withdrawal affects me most in muscle pain. Imagine your worst athletic cramps…….and then imagine it not going away, and being unable to exercise. The muscle pain of benzodiazepine withdrawal, added to unremitting insomnia and anxiety, are the reasons some people commit suicide.

      What has saved my life is being Loved, and Loving other people through the work of witnessing. Witnessing means two things to me. In Southern Baptist Speak it means speaking the truth of Spirit. Telling the story. In Underground Drug Withdrawal Railroad Speak (I’m making this up as I go along) it means “BEING a witness”. Hearing someone, Listening, and BEING with them.

      Pain is not something that can be avoided in life. In fact, the avoidance of suffering causes.. even more suffering. And comparing the magnitude of any one person’s suffering to another’s is almost a way of pushing that person away. A pedestal is as isolating as a prison. Pain and Suffering are also two very different entities, I’ve learned. I am in a lot of pain. Physical and emotional. I have lost so much, and finally safe, I can feel the depth of those losses.

      But I am not suffering. I am not suffering because I am no longer reacting in fear all the time, and because I feel more deeply connected to other people and to the community of humankind. And, probably most importantly, I am not suffering because I have a voice. Here I am talking to a young man on the other side of the world who has his entire life ahead of him, about this difficult, difficult subject.

      Please take good care of yourself, we need empathetic people in our movement to save lives. You can help in any number of ways, activism looks different on everyone. Educating health professionals is the most important one, IMO. It is not easy. But it has to happen.

      I can understand the narcissistic injury it presents………sorry for the clinical lingo…….people don’t want to go through 12 years of a brutal educational environment for the sake of the freedom to practice medicine…….and then have a bunch of angry customers tell them how to do their jobs.

      ” I mean WHO ARE these people anyway??I’M the one who suffered through Internship and Residency with attendings treating ME like a slave who doesn’t need sleep…..I DESERVE the position of power that society has conferred upon ME.”

      Doctors are trauma survivors too. If we want to educate them we need to understand that. I’ll go even further and say that it is rare to find anyone who does not carry unresolved trauma today.

      Josh, from what you say I am concluding that you need to taper slowly. No one regrets tapering slowwwwwwwwwwwwwly. Tons of people ( as in piles of bodies)
      regret NOT doing it. I hope you understand that staying on Quetiapine is a mistake, unless you just can’t get off it. I now know a lot of people whose body chemistry has changed so much they just have been unable. There is no shame in any of this, there is no right thing……there is only the best thing. The best thing for you.

      Nancy

  68. 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] :D

  69. 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.

  70. 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.

      • I mean… if you take Seroquel even at 0-50 mg, it’s a very potent antihistamine at H1 receptors. Your body probably will adjust to this antihistamine effect if you take it long enough.

  71. 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.

  72. 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.

  73. 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?

  74. Hi Liloisabride, I had some itching…….that time tends to be a bit of a haze. It did go away, it wasn’t really troublesome. The eye pain has been my bete noir.I appreciate the discussion and am learning some things about the antihistamine connection. High histamine is a major cause of insomnia I’m told. I spent months on the low histamine paleo diet that Monica Cassani was also on. She and I talked recipes for a short time. My love of food and cooking has been a good friend to me. Best Wishes.

  75. 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?

  76. 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?

    • Dear x,

      I know it’s difficult to wrap one’s mind around the idea that the people prescribing the drugs know little to nothing about them, in fact it’s shocking, it’s outrageous………and it is TRUE.

      So x, let go of your wishful thinking. That’s my best advice. Since NOBODY has done any research on withdrawal, I feel safe in saying “Don’t look for good advice on the label”.

      Schizo-affective, Shmizo-shmaffective………….is another comment I am dying to make. These diagnoses mean absolutely nothing except that you went to a psychiatrist and the psychiatrist categorized you randomly, and then billed for that “expert service”. You are an intelligent person, a highly intelligent person, but you have been had. We all have.

      But all that doesn’t really matter right now. What matters is that this drug is harming you. Finding a medical professional who will partner with you is the most important thing, IMO. I found my partner in an Integrative Nurse Practitioner, she already understood the harmful nature of the drugs, and had treated many depressed patients naturally. Christine read Peter Breggin’s book on withdrawal (which has it’s flaws), and many other articles I brought her and together we worked on diet and supplements to address deficiencies, toxicity, and inflammation. Acupuncture and massage were/are also important elements of easing withdrawal for me.

      x, In answer to your last question, no. The only thing that ends withdrawal is healing. Anything else is kicking the can down the road. Your psychiatrist will be more than happy to prescribe another drug to mask it. Don’t do it.

      The fact that you are going into withdrawal after one missed dose, and that you are having memory issues tells me two things. One; you are not “tolerating” the drug at all (with XR the blood level is more even), and two; you are not a good candidate for taking the drug because you can’t remember to take it. Both conclusions lead me to believe that tapering off may be your best option. I would add that seroquel causes dementia, and your memory issue is not a good sign.

      Tapering has several steps. Find a SAFE SUPPLY, do the REASEARCH, create SUPPORT, and throw out the calendar.

      I wish you the very best x, my email is [email protected] if I can help you find any resources.

  77. 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.

  78. 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.

  79. Dear Shirley,

    Great to see you here commenting. I think you are wise. Very wise. Balancing the risks of withdrawal with the needs of your family is a very tough one. I do want to say that there is every reason to be hopeful for the future. And when the time is right for you, if you decide to taper. there should be more resources…….maybe even some real acknowledgement and research from the medical profession.Never give up HOPE.xoxoNancy

  80. 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.

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