From Wonder Drug to Catastrophe: My Seroquel Story


At first, it was a love story. It was the winter of 2004. After more than three years of getting a minuscule amount of broken sleep every night and trying every insomnia remedy possible – from herbal and nutritional supplements to Ayurvedic medicine to prescription drugs known to be sedating, such as the antidepressant Remeron (mirtazapine) – a VA psychiatrist decided to prescribe me, off-label, the atypical antipsychotic Seroquel (quetiapine). A specialist in psychopharmacology, he quickly titrated me up to 400 mg and informed me that this was the highest effective dose for insomnia. The results were miraculous. Sleep became easy; I slept a solid eight hours every night and I thought that would be the simple, joyful end of my quest for sleep.

As with most love stories, the magic did not last. The Seroquel became less effective and by 2006, I was also seeking the help of a civilian sleep-disorders specialist. He added more drugs to my nightly Seroquel, prescribing Xyrem off-label, which is a highly-controlled chemical cousin of the date-rape drug GHB. Then my sleep disorders specialist added 20 mg of Ambien to the mix. I dutifully followed my doctors’ orders. But after eight months with no appetite and a substantial weight loss off my already slim frame, both doctors decided it would be in my best interest to discontinue Xyrem.

By 2009, I had a new VA psychiatrist and was taking a new sleep cocktail consisting of 600 mg of Seroquel, 20 mg of Zyprexa (olanzapine), and 30 mg Restoril (temazepam). Though I had remembered what my previous psychiatrist had told me about not taking above 400 mg for insomnia, I thought maybe this new doctor knew something that the other one didn’t, and I just wanted to feel rested. Soon after, he prescribed 800 mg of Seroquel in addition to the other drugs.

Fast forward eight years to the summer of 2017.  My VA doctor, who had clearly overmedicated me, finally realized that fact. He had me reduce my dose of Seroquel from 800 mg to 400 mg over four months’ time. Luckily, I didn’t experience any difficulties or worsening of my broken sleep patterns. Recognizing that I was still overmedicated, this doctor then wanted me to withdraw from Zyprexa over two months. I managed to do it in four. I had no problems whatsoever and didn’t notice any worsening of my non-restorative sleep.

By this time, however, I’d acquired a myriad of side-effects I’d learned were brought on by Seroquel, including hypothyroidism, supraventricular tachycardia (SVT), and low blood pressure, all of which needed to be controlled by other medications. In June 2018, I mentioned to my psychiatrist that my optical nerve had a suspicious appearance suggesting glaucoma. Since glaucoma is another potential side effect of Seroquel use, this was the last straw for him. He said, “You have no psychiatric illness. You just can’t sleep.” He wanted me to cease my 14-year experience with Seroquel within two weeks’ time.

Apparently, he had never looked at my history. Years ago, I had battled Major Depressive Disorder (MDD) and Generalized Anxiety Disorder (GAD). Though I did not follow his advice, a cascade of events happened to fundamentally change my life forever.

What my doctor told me would be a quick, two-week affair turned into a 14-month nightmare that I chronicled in my recently published book, Catastrophic Withdrawal: An Insomniac’s Attempt to Withdraw from Seroquel and How It Dramatically Altered Her Life.

During my harrowing journey, I ended up spending three months in a psychiatric drug withdrawal clinic with a holistic slant. They claimed they could help me completely withdraw from Seroquel. The clinic was extremely expensive. But with no other options in sight, I decided to attempt their eight-week program. I ended up extending my stay to 11 weeks, and yet, I left the clinic so much worse than when I got there. And I was nowhere near withdrawn from the drug, still taking a 200 mg dose. I was considered one of the most difficult cases of attempted withdrawal from any psychotropic drug they had ever seen.

At the beginning of my stay, the medical director, a psychiatrist, was concerned and seemed compassionate. But by my second month there, he and the entire staff did not believe I was on Seroquel just for insomnia. They thought I must certainly have severe mental illness. What else could explain the litany of bizarre effects I experienced during my attempted withdrawal, from partial paralysis to time distortion to days lost to amnesia? I couldn’t do the simplest things to pass the time. I was so cognitively impaired that I did not know how to take a shower, I had no understanding of television, and couldn’t comprehend pamphlets or books.

One good thing (if you can call it that) did happen at that clinic. The day after I got there, in October 2018, I was diagnosed with orofacial tardive dyskinesia (TD). I thought back to July 1, at a family birthday celebration, when a very close friend asked me why my mouth, especially my lips and tongue, were moving involuntarily in a strange way that I wasn’t aware of. These movements occurred two weeks after I began my descent from 400 mg of Seroquel, though I didn’t make the connection at the time. I had no idea how important TD would become to what I see now as my purpose in life.

Initially, the clinic psychiatrist prescribed amantadine to treat my TD, stating that if it worked, it would work quickly, with a low side-effect profile. But after three weeks on it, my TD persisted, so the naturopathic doctor prescribed high-dose chelated manganese, an alternative treatment based on some small studies conducted decades ago. After six weeks, my involuntary movements were completely gone. I was overjoyed! But a week later, on Christmas Day 2018, something even more frightening took their place. I began to have intermittent difficulties with walking. I had only a week left at the clinic. At the time, no one at the clinic realized that manganese taken at a high dose for TD could accumulate in the movement center of the brain, causing Parkinson’s-like tremors and disturbances with gait and other neurological effects. The medical team just told me  I needed leg-strengthening exercises.

On New Year’s Eve, I walked out of the clinic on my own two feet, normally. I was dependent on a reliable friend who knew it would be impossible for me to try to navigate the long trip home from Arizona back home to Florida when I was still having difficulty following a simple conversation and had only slept about four hours total in three weeks due to my still-present insomnia. At this point, I wouldn’t have understood how to traverse an airport by myself. There was no way I would have been able to manage my luggage or get through security or make it to the right gate. My friend had made all the arrangements – from booking our flight to renting and driving a car.

My friend had planned every part of our itinerary but had no way of knowing that at the first rest stop after leaving the clinic I would be completely unable to walk without assistance. Thankfully, he was a strong, 6’3” man who could manage the situation rather than my 80-year-old mother, who had initially planned to make the trip with me.

After we made it to the plane, we settled into the roomy first row of seats of the coach section. Thankfully, he thought of this little detail because we are both taller than the average traveler. But now the extra space was crucial because I had intermittent upper-body tremors. After I got settled in for the flight, though my cognition was severely impaired, I picked up and looked at a test of my neurotransmitters that the clinic had conducted. A section heading, “Low Dopamine,” jumped out at me. My eyes were drawn to the last sentence of the paragraph below, which stated, “Manganese excess may … produce Parkinson’s-like symptoms.” That morning, before leaving the clinic, I took my last dose of manganese. Several days after stopping it, my involuntary orofacial movements fully returned.

It took three months after returning home from the clinic for my cognition to return. It happened suddenly over a week. My ability to speak without stuttering lasted about three months as well. However, I walked with a cane for eight months. And the TD continued. It was life-changing to live with these disabilities.

One weekend in early August I told my good friend that I wanted to do something to make a difference in the world. A few days later, I woke up with a strong feeling that I was meant to start the first national nonprofit organization for TD. Was God calling me to do this? I somehow knew that He was.

That day I went online and researched how to start a nonprofit. The paperwork alone to obtain IRS approval seemed like a daunting task. I came across a law firm in Orlando, devoted to helping establish nonprofit organizations. In mid-August 2019, I had a phone consultation with a young nonprofit attorney. She seemed like a perfect fit to work with. Upon hearing my vision for a TD nonprofit charity, she was eager to assist me in this venture and I retained her services. I also shared my heartfelt plan to start a TD nonprofit charity on a couple of Facebook TD groups. My vision received a positive response from many of the groups’ members. I began thanking God for placing this idea on my heart and giving me a new purpose in life.

While I was awaiting my nonprofit charity status from the IRS, my brother, who is autistic, began developing obvious symptoms of TD as well, most likely from the risperidone he had been taking for many years. He is doing well now that he has been prescribed one of the VMAT-2 inhibitors for TD, Ingrezza, which began working within a couple of weeks. Ingrezza, and the other FDA-approved medication for TD, Austedo, haven’t helped me, though – even after months of trying each at the highest dose. But I’m still a firm believer in their efficacy for some people.

Finally, on October 30, 2019, the National Organization for Tardive Dyskinesia (NOTD) was born. We celebrated our first anniversary as a 501(c)(3) nonprofit last fall. NOTD raises awareness of TD with the general public and medical practitioners and provides tools and education for those with TD. One of our long-term goals is that everyone with TD will be aware that we exist as a resource for them. Though we are U.S.-based, we hear from people around the world. Please visit our website,, and our Facebook page:

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.


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    • Thank you for taking the time to read my blog. Please forgive me for my tardy reply. Since I wrote the above, I have developed akathisia, for which I have improved about 80% on the beta-blocker propranolol (it was necessary for me to continue my work) and I was “floxed” by Cipro. I had no choice with the Cipro, as I had two multiple drug-resistant infections, or at least the prescribing doctor told me that. This has left me with neuropathy in both feet which may or not go away. I only explain this so you know why I haven’t responded sooner. I am going to send this reply to all who commented.

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      • Hi Kathleen, hope all is great. I have a really bad and Sonia for the last four years and I’ve been through a lot for the last 12 years. Can you suggest anything for insomnia I was just put on quetiapine 200 mg a day and lorazepam .5 mg and I still cannot sleep. I have recent thoughts in my mind. It’s been about a month I’ve been on all these maybe a month and a half. Do you know of any new remedies or places for insomnia? Your help is greatly appreciate it. I need it I think you so much.

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  1. Kathleen,

    I’m so sorry for all the suffering you’ve endured in the name of insomnia. Your story is horrific, yet you’ve handled your recovery with such dignity and persistence. My mother suffered from TD probably due to the Thorazine and other neuroleptics she took in the name of treating depression. I’ll be happy to send you a contribution and kudos on your work.

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      • Hello Fiachra,
        Thank you for taking the time to read my blog. Please forgive me for my tardy reply. Since I wrote the above, I have developed akathisia, for which I have improved about 80% on the beta-blocker propranolol (it was necessary for me to continue my work) and I was “floxed” by Cipro. I had no choice with the Cipro, as I had two multiple drug-resistant infections, or at least the prescribing doctor told me I had no choice, as I had two multiple drug-resistant infections. This has left me with neuropathy in both feet which may or not go away. I only explain this so you know why I haven’t responded sooner. I am going to send this reply to all who commented, so they will understand my delay.

        It is truly awful the way that veterans are treated; you are right. Many, as I did when I first sought help from the VA, have no other healthcare options. If I ran the VA and it was possible, I would only allow practitioners that had served in the military themselves. I think they would have much more respect and compassion for all veterans. Of course, it is just a dream.

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    • Hello Ann,

      I remember reading your comment months ago, but somehow I did not respond, for which I am sorry. It is awful that your Mom had to endure TD. Yes, it is not great to have it now, but I feel to have it back when your Mom had it was even harder. There was even more stigma.
      I am sure she is in a much better place, now. A place where she is healthy and happy.

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  2. Hi Kathleen,

    I’m very sorry to hear about your Pharmageddon.

    I was prescribed 25mg per day (/night) (for “Schizophrenia”) of Seroquel in 2005 (which I cut to about 6mg per day). I stopped taking my 6mg per day same years later – and suffered from insomnia as a result, which I still have but can live with.

    – You would have been prescribed over 100 times what I was taking.

    The Seroquel at 6mg per night was also a Wonder Drug for me, until it began to give me ‘scary drops on my heart beat’; with the upper part of my body being ‘a soft pink and the rest of me pure white’ on awakening in the morning. This might be why Seroquel has a Black Box rating.

    [The last Doctor I saw in 1984 reformulated my ‘Schizophrenia’ Opinion in 2018 to ‘Nothing’ ].

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  3. I love it when MIA posts stories from veterans. You would think lamestream psychiatry would be less inclined to scam them, torture them, and kill them. Who would have guessed that a veteran with trouble sleeping would be treated like a “loser and a sucker”? Thank God Ms. Shea got away from psychiatry before it ruined her life forever.

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    • Hello J,
      Thank you for taking the time to read my blog. Please forgive me for my tardy reply. Since I wrote the above, I have developed akathisia, for which I have improved about 80% on the beta-blocker propranolol (it was necessary for me to continue my work) and I was “floxed” by Cipro. I had no choice with the Cipro, as I had two multiple drug-resistant infections, or at least the prescribing doctor told me I had no choice. This has left me with neuropathy in both feet which may or may not go away. I only explain this so you know why I haven’t responded sooner. I am going to send this reply to all who commented, so they will understand my delay.

      Lamestream psychiatry is a very good description. During the number of years that I was treated at the VA, I would see many veterans, both older and younger than me. Some had fought on foreign shores and went through things during their service that the VA practitioners could not begin to understand, I’m sure. But, a nurse who had served in Vietnam – and spent years as VA patient in and out of VA psychiatric wards – told me something that she often relived in her dreams that I will never forget. I think back and wonder if she was getting the best care. It didn’t seem like it. Heart-breaking.

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  4. Seroquel resulted in a bad trip for me, too. But I will say it did result in a fairly severe form of dyskinesia, while I was taking it. Although my psychiatrist claimed my uncontrolled movement problem could absolutely not be caused by his neuroleptics. So definitely the psychiatrists and other doctors do all need to be educated about dyskinesia, and that their “wonder drugs” are not “wonder drugs.”

    Thankfully, in my case, the dyskinesia almost completely went away when I was weaned off the neuroleptics. The only tardive dyskinesia I’ve been left with is a wiggly ankle when I wake in the morning. But I will say, it was a good thing that I was able to medically explain the etiology of my wiggly ankle, otherwise a doctor would likely have attempted to prescribe me a drug for “restless leg syndrome.”

    The ignorance, or outright lies, of psychiatrists and other doctors, in regards to the common adverse and withdrawal effects of their drugs, will likely never cease to amaze me. Thank you for sharing your story, Kathleen.

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    • Hello Ann,
      I have tried several times this evening to reply to your comment, so I don’t know if you will see this.
      Thank you for taking the time to read my blog. Please forgive me for my tardy reply. Since I wrote the above, I have developed akathisia, for which I have improved about 80% on the beta-blocker propranolol (it was necessary for me to continue my work) and I was “floxed” by Cipro. I had no choice with the Cipro, as I had two multiple drug-resistant infections, or at least the prescribing doctor told me I had no choice. This has left me with neuropathy in both feet which may or may not go away. I only explain this so you know why I haven’t responded sooner. I am going to send this reply to all who commented, so they will understand my delay.

      I’m sorry to read that you were harmed by this drug, too. I am glad that you are free of it and that you were left with almost no dyskinesia.

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    • Hello,
      Thank you for taking the time to read my blog. Please forgive me for my tardy reply. Since I wrote the above, I have developed akathisia, for which I have improved about 80% on the beta-blocker propranolol (it was necessary for me to continue my work) and I was “floxed” by Cipro. I had no choice with the Cipro, as I had two multiple drug-resistant infections, or at least the prescribing doctor told me I had no choice. This has left me with neuropathy in both feet which may or may not go away. I only explain this so you know why I haven’t responded sooner. I am going to send this reply to all who commented, so they will understand my delay.

      I looked at your website and am very glad to know your organization exists. I will also spread the word about patient association. Thank you for what you do!

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  5. I’ve been a psychiatrist for 37 years. Any MD who prescribes an anti-psychotic for insomnia is out of their mind. I refuse to prescribe anything for insomnia because in my experience nothing works without a price to pay in the long term, except for 2 pills of CalmAid, a German lavender extract you can buy on Amazon – no one know if it is safe, though.

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    • It has become a remarkably common practice. Shows the ethical level of the average psychiatrist today, no personal disrespect intended. In fact, I respect you for posting your disagreement here. I hope you will hang around and read some stories and let it affect your practice.

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  6. Because of the nature of my work I see 160 patients a week for years. I have never heard of anyone prescribing seroquel 400, 600 or 800 mg, and/or zyprexa 20 mg, and/or ambien 20 mg (???) for insomnia. Most cases of psychopathic prescribing I’ve seen (many MD’s will prescribe you anything you ask for money) involve benzo’s, opioids and amphetamins. Some MD’s are simply drug dealers, but these doses of antipsychotics for insomnia – no, not even in rural communities with crazy solo practitioners. I’ve reviewed malpractice suits and medical license forfeiture cases in NY state – never heard of such a scenario. If such a patient gets to a second psychiatrist it’s difficult to believe the second one will continue this bizarre practice. I will be surprised if this comment gets approved.

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    • We do not withhold or approve comments based on opinion or topic. The only comments held back are those which violate the posting guidelines, which are available on the home page. You are entitled to post any opinion you have to share, as long as it’s done respectfully. Of course, others may respond in kind.

      That being said, I have to ask: are you suggesting that the poster is making up this story? At least in terms of the dosages prescribed? Or are you simply shocked that your colleagues would engage in such unscrupulous and unethical behavior?

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      • I am not going to be baited.

        Regarding being shocked – seriously? Nothing would shock me, every imaginable insanity is perpetrated by some MD’s. It wouldn’t shock me to hear of an MD’s who infect their patients intentionally with HIV or murder and eat them. But prescribing these meds at these doses for insomnia is less and worse than stupid; and I have not heard of even psychopathic lunatic MD’s who are that stupid. It’s no different than performing brain surgery for insomnia.

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          • Well my doc was out of his mind then. He told me that :”There is a new drug for sleep that is very mild;it just makes you a little sleepy”. It was Seroquel. I just dug up the old prescription bottle. I keep these as evidence should it ever be needed. He prescribed 600.0mg immediately with no attempt at titration.

            Blood glucose testing every three months was the standard. Never did he order a single blood test at anytime.

            Here is the other odd part: Seroquel, not even 600.0mg, put me to sleep. Many psychoactive meds have no observable effect in me. This tells me that medication effects are not so much a function of the drug, itself, but mostly a function of the way that the individual metabolizes said drug.

            I read the literature. Horrified, I immediately stopped the use of Seroquel. I had no problems with this. However, this does not mean that the drug is benign. It doesn’t mean that many bodies don’t experience severe side effects and then severe withdrawal reactions. It means, at the least, that one human can have a very different drug processing type from others.

            Have these docs heard of additive effects before they engage in polypharmacy? Is not prescribing two drugs, in the same category, outside the standard of care?

            Still, it is outrageous that humans can fool with other humans’ minds and their lives.
            I was fortunate. Not everyone has my experience. Diabetes is a well known possible outcome. (see Zyprexa Papers new Your Times). Oh I was so lucky where Seroquel is concerned, and I am so sorry that this ugly thing happened to you.

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        • Veteran Affairs is full of military trained Dr with basic military training for their career! This means, crash course on how to patch a soldier up in the field and stabilize to fly out to hospital. Or civilian doctors who lost their medical malpractice insurance and now have a job at the VA, (think of your car insurance and having too many accidents or tickets). Veteran Affairs covers all doctors for medical malpractice insurance, these doctors have zero responsibility in
          seriously injuring or killing a veteran. 60 plus days for review of termination, allowing the Dr time to tow the line and look like a reformed employee to keep there job.
          All Government employees should be treated at the Veterans Affairs to reduce cost and improve the health care Veterans receive. Even Veteran Affairs employees have public civilian health insurance!
          Please, due your research and if you agree please share to bring awareness to suffering Veterans and the cost justify Veteran Affairs decisions that every veteran receives before a medication or test is given to the sick veteran.

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    • You’ve now heard it: Some years ago I was prescribed 20 mg of Zyprexa (olanzapine) for insomnia. Prior to that, that psychiatrist and other doctors prescribed Seroquel for same. I have heard from other individuals who have been prescribed or are even currently taking an antipsychotic for sleep.

      Of course it’s nuts. But it’s actually fairly common. I googled for 2 seconds and came up with this journal article: See also the “similar articles” on this page.

      By the way, the atypical antipsychotics did not help my insomnia and had bad side effects, so I only took them a few times. For me, the insomnia turned out to be partly menopause-related and hormone treatment gave me back my sleep. I sleep fine now and shudder when I recall the past.

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      • I remember my first involuntary hospitalization. A man complained of not being able to sleep and the nurse said “I can give you Zyprexa.” She gave it to him like it was a piece of candy. I also remember another nurse telling me antipsychotics were not addictive.

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        • Ruyi,

          The same thing happened to me in California but with seroquel. I think I said/complained that it ‘didn’t work/help’ so they gave me another. Pretty sure they were horse pills (meaning large tablets). I didn’t sleep that night, for many a ‘good’ reason.

          After a nurse in the presence of a second took off my shoes without asking and essentially tried to ‘put me to bed’ virtually without a word spoken. I realized the mattress was deeply dipping down like it hadn’t been replaced in 2 decades. I requested another room, and they put me in one with what seemed to be a raised hard wood structure with the equivalent of an adult-sized child’s nap time ‘mat’ on it. Or maybe two of those, but no more. It didn’t help that there was a camera in the top ceiling corner, whether functioning or not. What a racket.

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  7. The tragic side of this story is that in most cases, a very high powered dangerous probably addictive drug will get prescribed for issues such as insomnia, anxiety about employment or career choice, being bullied or abused in school, at work, at home or a multitude of “problems” that are then made worse by the drugs. The drugs then cause either side effects (like T.D.) or other alleged diagnosis (like Bipolar Disorder) that, of course, need more drugs. And thus for the “patient” drugs are piled onto drugs. Anti-psychotics and SSRIS are notorious for all these horrors and are well-known to cause “brain damage.” Going off these drugs is life-saving, but, still the person must usually go though some sort of tortuous withdrawal and even after the withdrawal is complete, the person’s life may be changed in some way forever, as the person then saddled with the prospect of learning to adapt to the brain damage the drugs caused that do not go away even after the drug is stopped. More than likely, they must go through all this alone; on a risky trial and error basis because the psychiatric and the medical community lives in denial of this and refuses all efforts to attempt to understand and help. There seems to be very little desire to ameliorate the damage they have caused. I am not sure about this, but, when I hurt someone I usually want to make amends. I do not, if possible, let the sun go down on my anger. The psychiatric and medical professions have chosen the opposite and many suffer. It is not just the “patient” who must “come clean” from their drug-taking; is the prescriber who must “come clean” and “own up” as any “neighborhood pill pusher” should. Also, their suppliers, too. Until this is done, not only will each patient under their evil spell suffer, but society will suffer too. There is absolutely no way to “cure” the ills of society, including violence, and the economy, until this happens. The problems in our society are not because of racial or economic disparity or any other excuse “they” want to “accuse.” The problems of our society are due to one thing: “drugs” and although illegal drugs are a major cause; it is the legal, prescribed drugs that lead the forefront and it is the “psychiatric” drugs that at present are the instigators with the pain-killers not far behind. If the human race goes extinct, it will not be due to bombs, etc. but to drugs with “psychiatric drugs” leading the way. Thank you.

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  8. Bananas, You are right as each person “metabolizes” a drug differently. That is what the doctors don’t really like; all doctors, especially the false doctors, psychiatrists, etc. That each one of us has been created uniquely; that each one of our brains has been created uniquely is something very few doctors, psychiatrist, want to confront or are willing to accept. But, of course, education, the government, etc. are also very unwilling to confront and accept this. This, too, is brought into the home and parenting, etc. by all these “do-gooders” who are doing absolutely no good by thinking each person is basically the same and to deny the uniqueness of each individual is somehow against the greater good; which, it may very well be. However, it is fact and truth and to disregard this causes so much unnecessary suffering and heartache. Thank you.

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  9. Kathleen,

    Thank you for sharing your story. It is an important one to be known, and I hope that you will find other outlets to publish it widely, especially in the medical and veteran communities. It was an astonishing and painful account. It is a wonder you lived to tell it. My entry into psychiatric drugs came when I was prescribed them off label for migraines. I had never been depressed or anxious but suffered from severe headaches. I was prescribed an antipsychotic, antidepressant and Benzodiazepine. I did not know what class drugs they were at the time. I trusted my neurologist who was a headache specialist. I had such bad reactions to the AP and AD that I was taken off them immediately but stayed on the Benzo for several months along with a seizure medication until my migraines abated. When I tried to stop the Benzo, I spiraled into a tortuous year long ordeal, the chief being insomnia. I was then prescribed antidepressants, ambien, etc. to deal with the insomnia. It was a hell I could not have imagined.

    Your story really hit home for me because of my most recent interaction with psych drugs. I found myself yet again on a med, then trying to taper over several months. I suffered from tardive dyskinesia and akathisia. My hands shook so violently I could not feed myself. I had trouble walking and speaking. My psych doctor told me it was not b/c of the drug b/c it was not addictive. I experienced so many of the same things you detail, my cognition and memory so bad, I could not recall what day it was, got lost going to familiar places, could not make simple decisions. I could not follow television shows, had trouble with basic tasks such as showering. I also became extremely disassociated and emotionally numb. Many of the effects have never gone away after years of being off all meds.

    From where I sit, I believe the suffering endured could be classified as torture. I never read about that possibility as a side effect of psych meds nor of the possibility of permanent damage.

    I am glad you are finding a positive outcome of your terrible ordeal by helping to educate others about TD. I confess that I still cling to the memories of my life before the meds and what could have been. All aspects of my life, my health and relationships have been damaged.

    Rebel, thanks for your comments. I agree!

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    • Your difficulties are different than mine So far I have experienced being unable to complete a sentence and feeling like I am not in control of my body while trying to walk to the bathroom. I have expressed all my fears to my doctor and he won’t budge on the olanzapine. Whether I’m doing well or bad he wants me to take it for the rest of my life. I also have metabolic syndrome and am diabetic because of the olanzapine. Neither my PCP nor OB-GYN will admit it is because of the olanzapine and suggest that I remove it. Instead they want me to take 3 more medicines, change my diet and exercise and control my numbers that way. It seems like I walked into a hospital 10 years ago and now I’m have to be on a medicine for the rest of my life. Except it’s killing me.

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      • Ruyi,

        I’m very sorry you have been dealing with all that. I don’t normally offer my website here, but I do talk about my experiences with olanzapine and many other related issues (see below). I am not pressing you to read it, but I was on olanzapine off and on many years, with many similar issues that you’ve mentioned. It often seems like ‘THEY’ prefer that you ‘jump through hoops and turn around in circles’ to stay on the ‘antipsychotic’.

        I discuss why I ‘preferred’ Saphris when I switched from olanzapine, and what it was like, etc. I am now off Saphris (no major tranquilizer whatsoever for 2.5 months), and there are quite specific reasons for this (both ‘being able’ and self-chosen), and I discuss a few reasons how I’ve done this although there are newer developments as well. My email is there if you’d like to discuss more. I am carefully yet optimistically determined to move forward without any major tranquilizers in my life ever again, as well as other people’s attitudes and pressure that I need to and must use them. However, there are layers, levels, and spectrums of things to do even when life seems to ‘require’ them.

        We do what we can do, if/when/how we can. Peace out:

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  10. Insomnia is treated by primary care physicians and as a secondary diagnosis by other specialties, not by psychiatrists. Most psychotropics (like 90%) are prescribed by non-psychiatric practitioners because of the stigma of being treated by psychiatrists. These non-psychiatric practitioners sometimes go overboard, I’ve seen crazy excesses. Patients would not refer themselves to psychiatrists for insomnia and psychiatrists would not get referrals or accept patients with a primary diagnosis of insomnia. Most psychiatrists in community settings find themselves struggling to taper patients off from unnecessarily prescribed psychotropics. The pharmaceutic medical-industrial complex does a good job of persuading clinicians that these meds are harmless magic-cures. Psychiatrists are more jaded.

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    • I am sharing only my own experience as an advocate for foster youth and earlier as a mental health professional. I don’t recall many psychiatrists in community settings trying to taper patients from drugs they got from family physicians. Most of the time, they got referrals from physicians who had prescribed either stimulants (for “ADHD” diagnoses) and/or SSRIs (for “major depression,” which was a very common “diagnosis” for foster kids). They usually got referrals because the physicians’ initial prescriptions didn’t work or more commonly made things worse (usually made them MORE aggressive instead of less), and most of the time, they increased dosages or added new drugs, even if it was kind of obvious that the drugs were causing the problem. As advocates, we usually had to move heaven and earth to get them to EVER reduce ANY drug, let alone drop something from their regime. Every once in a while, they might do a “med wash” if things were super messed up, but that was one case in 500 probably. Most of the time the answer was more “meds” in bigger amounts. There were only two psychiatrists I ever met who even understood that stimulants could make kids aggressive, and only one who regularly did anything about it. I could count the number of med reductions on two hands, and most of them were prompted by us or by the child’s attorney not by the psychiatrists. So my experience is very different than yours!

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    • varien, I am sorry to say but psychiatrists are the least “jaded” about prescriptions for all these psych drugs. They shamelessly promote them like candy at Christmas. In fact, it would seem that these drugs are like a great big candy store from which they can choose. And the psychiatrist (or the “candy-man”) tries to persuade his or her client that he or she “makes the world tastes good” just by using this drug. But, the candy (drug) is/are tainted and from that point onward the deception begins. I have heard of those who have been prescribed “drugs for anxiety” due to the “pandemic.” The doctors, some are not psychiatrist, try to deceptively make the point that these kinds of drugs are so much more different and therapeutic than street drugs or alcohol. The tragedy is there is very little difference and so few do not know that after the pain of living through this “pandemic” they will soon be forced to further pain they do not deserve when they attempt to stop taking the drug or drugs. Thank you.

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  11. You are responding to exactly one sentence from my comment, which is mostly about who treats insomnia. However, if we focus on the issue of who wants to taper up or down, my experience is indeed very different.

    1) Psychiatric inpatient units: psychiatrists are pressured to kick the patients out ASAP so that hospital administrators can win their beauty contests of “decreasing length of stay”. Insurance companies call daily to approve every day and if you did not raise doses you did “nothing” – case denied. So in inpatients settings, yes, psychiatrists push doses up.

    2) Adult outpatient settings: psychiatrists often have to fight with patients demanding controlled substances, usually benzo’s and stimulants for self-diagnosed ADHD (this is an epidemic). Patients also demand to have other meds increased, it’s nearly impossible for psychiatrists to push doses up – patients go home and take whatever they want.

    3) Community outpatient settings for Developmentally Disabled adults: here you have an army of group home counselors, various therapists and anguished family members who practically lynch you if you don’t get the patient’s behavior “under control”. I left one such clinic because I would not budge an inch in these wars and refused to sign off on established cocktails from hell. We were 4 psychiatrists, 2 of us had the same careful attitude, 2 did not, one of them left as well.

    4) Nursing homes: I have treated literally thousands of patients in nursing homes. They come from hospitals where the MD’s from various specialties want them sedated, so they drug them with psychotropics. These are not allowed in nursing homes and psychiatrists are mandated to taper them down every 3 months, and not prescribe anti-psychotics in cases of dementia (black box warning). Here you have the battered nurses the agitated patients assault and administrators gang up on you to prescribe meds to sedate patients instead of hiring more staff and give them competitive salaries, but nursing homes are closely monitored and this show doesn’t go very far, or the facility gets a citation.

    You have experience with youth. I don’t treat kids. Child psychiatrists are disappearing, if you need one you are not likely to find any. The idea of prescribing psychotropics to minors feels me with horror, it’s quackery.

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    • You know, I find I agree with most of what you have said. The problem I see is, and I’m guessing you agree with me, it is (or should be) the job of the psychiatric profession to correct these misimpressions and to get people to focus on what really will improve their lives. So it’s definitely true that the residential treatment staff would often refer kids to a psychiatrist for such idiotic indications as “doesn’t want to go to school” or “stays in her room too much (isolates)” or “won’t complete their ADLs” (I kid you not, these are all three actual reasons provided by treatment programs to justify a “med increase.”) But I also think it’s true that the psychiatrists had a responsibility to say, “You know, it’s not OK to refer kids to me just because you can’t figure out how to get them to school. That’s really your job as a residential counselor.” Or “Yes, teacher, Joey can be hard to handle in class, but he’s super smart and tells me he’s bored to death. He needs to be challenged in class – what can we do to make things more interesting and challenging for Joey, instead of blaming him for being bored?”

      There are a lot of “reasons” why this epidemic of labeling and drugging has occurred, DTC advertising being a very big one. However, psychiatry as a profession has paved the way for this to happen, by redefining mental/emotional problems as “probably biological” and by selling the drug solution as the first line intervention, instead of a temporary or adjunct intervention on the path to empowering the client. At least, that’s my view of it.

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  12. Psychiatry indeed sought legitimacy from mainstream medicine by trying to redefine emotional disorders as biological. This move was successful, but has come home to roost. There are fewer and fewer graduates of medical schools who want to become psychiatrists. There are fewer and fewer psychiatrists – try to find one if you need one – you’ll be surprised, they are disappearing. The lack of sense of mission and the devaluation of the training in the psychological aspects are partly to blame. The prostitution of all of medicine by insurance companies, big pharma and hospital executives play a bigger part.

    So who do you find in the trenches today? NP’s.

    All these issues are very complex and determined by powerful economic forces that determine outcomes behind the scenes. Focusing on psychiatrists as drug pushers is chasing ghosts, specifically ghosts from the 60’s-70’s.

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    • This is still a very ghostly world and as if you only read Robert Whitaker’s books, you’ll notice an extreme uptick in psychiatric drug prescriptions has come after the late 80’s and the arrival of prozac and then the atypical anti-psychotics. Additionally, it was somewhere around this time, that giving children ritalin and adderall for adhd became “popular.” “Benzos” have been around for probably 60 to 70 years. My mother was given a prescription for one back in the early 1960s, but she didn’t remain on that drug. Many times, it is not the patient who clamors for the two “benzo” drugs I was prescribed; klonopin and zanax. In fact they were prescribed me not on any kind of short-term basis, but on a “when-ever” basis to combat the side effects of the atypical antipsychotics prescribed me; risperidal and abilify. Yes, it is true these drugs can be prescribed by other M.D.s and are and there may be less psychiatrists (I don’t know, but that might be aavery good thing.) but, in most cases it is the psychiatrists and Big Pharma who still promote these drugs and the more wk now of their horror, the more psychiatrists and Big Pharma promote them. Thank you.

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  13. Dear Kathleen , I was just wondering if you ever got r i d of your insomnia because I have had chronic insomnia for 12 years now due to medication. I would like to know if anybody has any helpful information or advice 2 get help with this problem.

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