Psychiatry’s Denial of the Horrors of Tardive Dyskinesia

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Even though tardive dyskinesia—and also akathisia, which it resembles—are serious and horrible harms of psychiatric drugs, they are often overlooked or deliberately ignored by psychiatrists.

It took psychiatry 20 years to recognise tardive dyskinesia as an iatrogenic illness, even though it affects about 4-5% of the patients receiving neuroleptics per year. Poul Leber from the FDA concluded in 1984 that, over a lifetime, all patients might develop tardive dyskinesia. Three years later, the president of the American Psychiatric Association said on an Oprah Winfrey show that tardive dyskinesia was not a serious or frequent problem.

Photo of older white doctor with beard shaking his finger "no"Neurologists are much better at spotting tardive dyskinesia than psychiatrists and the same applies to researchers. Researchers found tardive dyskinesia in 10 of 48 patients consecutively admitted with acute psychosis and treated for at least a week with neuroleptics, while the psychiatrists only made this diagnosis in one of them.

Akathisia is also common but is also often missed, ignored or misinterpreted. In the same study, the researchers diagnosed akathisia in 27 patients, the clinicians only in 7. In a community sample of patients with schizophrenia, the prevalence was 19%.

Tardive dyskinesia is an involuntary drug-induced movement disorder characterised by repetitive purposeless movements. It can have many manifestations, including facial movements, sucking or chewing motions of the mouth, sticking out the tongue, blinking the eyes a lot, and inability to sit or lie still, with constant movements of the extremities. Some patients withdraw from social life, as they find their symptoms too embarrassing.

Akathisia is one of the most dangerous harms of neuroleptics and depression drugs, as it predisposes to suicide, violence and homicide. It literally means that you can’t sit still. It is a state of extreme restlessness where the patients may have the urge to tap their fingers, fidget, jiggle their legs, or pace around frantically, but sometimes there are no visible muscle movements, only inner turmoil. Akathisia can occur during ongoing treatment but is often a drug withdrawal symptom.

The main difference between the two conditions is that patients with tardive dyskinesia may not realise they’re moving body parts whereas those with akathisia know they’re moving, which upsets them.

Organised denial of these serious drug harms

A remarkable omission in most lists of harms of neuroleptics in Danish psychiatric textbooks is tardive dyskinesia. One textbook noted that tardive dyskinesia is often reversible, which is wrong and was contradicted by another book that spoke about irreversible movement disorders. Patients with tardive dyskinesia have higher mortality rates, and this harm is dose-related.

Akathisia is also commonly ignored or misinterpreted. An assessment of clinical study reports of trials of fluoxetine in children and adolescents submitted to drug regulators revealed that signs of akathisia could be called agitation, hyperkinesia, hyperactivity or even euphoria. In another sample of study reports of depression drugs that also included adults, we also found examples of miscoding, e.g. akathisia was miscoded as hyperkinesia.

The symptoms of akathisia may be overlooked because they resemble and often overlap with those of mania, psychosis, agitated depression, and the social construct called ADHD. In addition, akathisia often occurs concurrently with, and is masked by, akinesia, a common extrapyramidal harm of neuroleptics.

Psychiatrists generally interpret the restless behaviour as a sign that the patients need a higher dose of the drug, which aggravates the situation. When the psychiatrists finally took an interest in akathisia, the results were shocking. A 1990 study reported that half of all fights at a psychiatric ward were related to akathisia.

In one study, 79% of mentally ill patients who had tried to kill themselves suffered from akathisia. Moreover, patient reports on the internet show that suicidal thoughts when taking neuroleptics are strongly associated with akathisia; 13.8% of respondents reporting akathisia also reported suicidal thoughts, compared with 1.5% of those who didn’t mention akathisia (P < 0.001). This harm is dose-related. By 1999, the FDA had received reports of over 2000 fluoxetine-associated suicides and a quarter of the reports specifically referred to akathisia and agitation.

Videos of tardive dyskinesia

US actor Joey Marino can no longer act, as he is in terrible pain and has constant involuntary muscle movements. In 2021, he published the poem Bedridden on Mad in America:

I can remember certain feelings, but I can’t feel very well.

I can’t hold someone’s hand because my hands over grip. They squeeze very hard. They open and close rapidly and flail around, until they stop.

My skin cannot be touched, even through my clothes because it is excruciatingly painful and over sensitive.

All my muscles and bones pull in every direction in constant contraction. 

As soon as I initiate a movement a whole Cascade of jerks and flailing moments ensue until it stops and stiffens again.

For the first time in my life people are scared of me.

Here is the video of Marino’s tardive dyskinesia, which shows how horrible this brain damage can be.

And here is another heart-breaking video, a very old one, which I received from psychiatrist Peter Breggin, of people who suffer from tardive dyskinesia or akathisia. Some of the children have become permanently brain damaged to an unbelievable degree.

Dear reader. I have a plea for you. Please spread information about my article everywhere you can. Neuroleptics are enforced on patients with the untenable arguments that they are good for them, which psychiatrists routinely claim they cannot dispute because they lack insight into their disease.

This is abhorrent and forced treatment must stop. Some of the patients are afraid of dying because they have seen patients being killed by neuroleptics.

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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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66 COMMENTS

  1. Psychiatry has certainly made denial into a fine art, as it is such a long time they’ve had to perfect the skill. That and promotion of purposelessness. I watched the videos and really it’s beyond words what is happening to children.- as well as adults- with tardive dyskinesia.
    Also the attitude of psychiatrists who actively promote denial gets into many patients who are not interested in learning about the less fortunate with tardive dyskinesia, just care bare minimum about anyone else and are perfectly happy most.of the time with medication. They make indifference their raison d’etre as if there is nothing that really matters. I awkwardly am in the ‘same group?” or am treated as if I ought to be just like them. I find them to be close followers of Psychiatry parroting the cliches my meds keep me well etc. When there is video evidence of the harms, biographical book evidence of the harms, many other available avenues to learn of the harms, they prefer like the psychiatrists they emulate to be foolish even as their side effects worsen. I do not have one other patient friend who is in agreement about the harms of psychiatry. I think the lies upon lies that cause conflict with the idea of integrity and the idea of what is humane exactly just have to reach the point where the truth will out. At this moment it is easy for people, the average person to overlook the failings of Psychiatry even as the health bills steeply increase from “having” to treat the medication side effects. I say ” having” to because the equation is dead simple- less psych drugs prescribed less costly chronic disease proliferating in the health system. It may be $pharmaceutical profit or being able to provide health care at all to put it another way. The change to seeing this couldn’t come soon enough.

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  2. As a mental health therapist now who once faced the very real prospect of developing this, I couldn’t agree more with you. There’s a seemingly rampant laziness in a subset of psychiatry that’s patently wrong. There should be NO laziness when it comes to people’s well-being.

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  3. I had tardive dyskenesia in 1978 when my hapless and cruel psychiatrist put me on Haldol, with cogentin. The symptoms resolved when I was taken off Haldol in a few months, but recurred when I was again given Haldol a year later. I also had seizures from being given Haldol without cogentin the night before Thanksgiving 1979.
    I wished then and I wish now that prescribing doctors would be required to take all the drug and drug cocktails they prescribe — how can they possibly help us if they have np idea what their meds are causing to occur in our bodies and minds?

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      • Correction: upping the dose or changing to another neuroleptic doesn’t lessen TD, it only masks TD. And it often gets worse AFTER the drug is stopped or reduced. That’s what happened to me. It’s a horrible game of Russian Roulette that’s totally unnecessary.

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      • Clarification: upping the dose or switching to a different neuroleptic doesn’t lessen TD; it only masks it. And TD often gets worse AFTER the drug is stopped or reduced. That’s the nightmare that happened to me. And the newer neuroleptics are no safer. It’s a horrible game of Russian Roulette.

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    • l lived same. a fraudulent psychiatrist drank haldol without the drug. l were very bad. l went to neurology. neurology made EMG. l thought very that the nerves damaged. if my nerves damaged someone would not care with me. psychiatry was lying the family. l am hating the family. psychiatry is a fake science. psychiatry is not medicine. l am sensing very good you

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  4. Dear Dr. Gotzsche,

    Thank you for bringing attention to the horrors of Tardive Dyskinesia. It is truly a horror. I should know as I endured a severe case of it for 6-7 years after being prescribed Thorazine as tranquilizer, not as an antipsychotic. The psychiatrist who prescribed said it was Akathisia, but after I stopped the drug, the tardive dyskinesia began with a vengeance. But no case is insignificant, no matter how mild, because there’s always the chance it could get worse whether you reduce the drug, stop it, or keep taking it. The medical community is woefully ignorant of what Tardive Dyskinesia is, that it’s uniquely agonizing and can be permanent.

    It’s not possible to describe how tortuous it is to endure TD, knowing it might be permanent, and there’s no reason anyone should have to endure it, because TD can destroy every aspect of living. And I know I’m extremely lucky that for me it did eventually stop. No one should have to live with it for any reason. And people need to know that what they see on the video is a daily constant for the people who have it. I wish neuroleptics could be outlawed, but since that’s not likely to happen they should only be used briefly in situations where someone is physically out of control.

    This is the first time I’ve mentioned this publicly. I’ve never talked about it because was so traumatic, so traumatic I almost didn’t leave this comment.

    Thank you again, Dr. Gotzsche and MIA.

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      • I wish I had answers for you. But allowing myself to eat sugar, carbs, and fat (in moderation) produced a calming effect. And as for spiritual, I was just determined not to let psychiatry have the last word, which boiled down to hoping for a helluva lotta luck.

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    • Birdsong, even if someone is “physically out of control”, I am sure that neuroleptics are not the only drugs which can be used to calm a person down. And of course there are non-pharmaceutical ways of calming an agitated or aggressive person down.

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        • Birdsong, benzos and neuroleptics are not the only drugs which can be used to calm someone down. And I think that a straitjacket is a much more humane method in these circumstances. Injecting people with powerful drugs (which might even cause death) against their will is a serious violation of their autonomy. People who are not labelled as “mentally ill” are not forcibly injected with drugs.

          You mention “psychotic rages”. I don’t know what kind of situation you mean. A person angry and hostile because of his/her delusions? I suspect that dangerous “psychotic rages” are very rare, especially if a person is not using street drugs. The idea that psychosis causes irrational fury and aggression is unfortunately used to harm and stigmatize people experiencing unusual mental states.

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          • Such rages are often caused by the very drugs meant to “treat” them. Stimulants for “ADHD” are the most common offenders, but SSRIs/SNRIs and antipsychotics can do it, too, plus benzo withdrawal is most definitely associated with violence for some users.

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          • Joanna,
            I didn’t mean to imply that people experiencing psychosis are automatically dangerous. But I’ve witnessed physically aggressive people that are out of touch with reality for God knows what reason, and such moments can be life or death if you’re not a six-foot plus male. And there’s usually no time to safely determine the reason for someone’s clearly threatening behavior. But I totally agree with that a straitjacket is much more humane.

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          • Steve,
            I believe psychiatric drugs are behind a lot of the violence that’s been happening the last 35-40 years. And I consider forced drugging for anything other than isolated incidents a serious violation.

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        • I disagree entirely. The other issue is that in the ER, they often exacerbate a situation prior to even knowing what’s medically wrong with someone; they make assumptions, plus triage isn’t qualified.

          Nothing is worth that cardiac risk. In fact, the law states the least intrusive measure, yet they provoke it on purpose, so that they can cover their finances.

          If anything goes on, injections of Haldol in a “hold” can be deadly. Psychiatry offers two choices: either turn the brain up higher or turn the brain down. Why should we ever shut a brain down? Why would we want to alter it at all?

          Let’s work with it—use common sense. All these drugs are poison. I am very grateful that people like Peter and others will stand up against these social crimes, and political offenses to control the populace and that is all it is.

          Once courts have a very public commitment; they make anybody dangerous, and can take their property, money and real assets. Punishment ordered for cogent opposition to brainwashing and victims won’t have a life left; that is pure evil.

          It is medical terrorism and clearly sanctioned, physical abuse. In a word, it is torture. Nobody needs their delusions; especially those neurotoxins. No value for short term either & they are addicting.

          What’s is done against someone’s will is a disruption of incredible delicate instrumentation.

          They’re arrogant and so corrupt. Most folks are but suffering from trauma, and the last thing they need is more of it. Rest, support, nutrition, education, and self-reliance is not contrary to our freedoms. There is no reason for a straitjacket as that’s what these drugs are. All of them.

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  8. I have never understood why the chasm between osychiatry and neurology and its very complicated complex histories. This is one major concern so thanks for bringing this up. Though the televisions adds for a curative medicine blows my mind.
    This was known long ago. And ancedents with more neurological issues such as Tourette’s Syndrome in which neuroleptics were a recomended option. My mother an old old socialnworker woukdvsay many dont take the medicines because it gives them an emotional flatness.And she was its their choice. Some foljs have discovered intense concentration works as well. Havent heard muchbthese days.
    In older times a doctor woukd always or should have cobtacted the other dictors involved innthe oatient’s care. This shoukd have been the ethical method for neurologists who were seeing pts with TD.
    The psychatrists never seemed to do a thorough review of systems. Many just did med checks snd thst just is poor poor medicine.
    The use of genetics and mish mash of human chemical studies just totatally removed them from any concern or care fir their patients environment as in housing, air, soil, water, and intergenerational family and culture. As a person who has played a role in various chairs this seems to be a horrorific violation of medical ethics among other things and intertwined with other sysyems as well.

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  10. There are other involuntary muscle movement problems. I had a problem with akathesia during my Benzo withdrawal. Before that I was starting to have severe dyskinesia fits. Some would be like a seizure for hours. I also have Tardive Dystonia. My muscles completed contract and twist. Those familiar with Harry Potter, I look like the big tree that keeps contracting. Dystonia can be seen in different parts of the body. I have it everywhere. The muscle walls around my lungs can contract so much I can’t breath. This isn’t hyperventilation. This is Dystonia. I can’t swallow. My eyelids can freeze closed. It has to be affecting my heart. I can’t walk. I stutter. It is an invisible disability. Stress can aggravate it because the muscles are already contracting. It’s very painful. Lack of sleep, too much exercise, hunger, and the weather can affect it.

    I still have a life to live. I know I’m being stared at. I see the fear in people’s faces. I hear the whispering echoing around me. Many people threaten to call an ambulance, or worse, the police.

    I can’t change brain damage. The people who see me can change their reaction. Dyskinesia, Dystonia and other muscle movements are more common as more of us that were enslaved by medication abuse are becoming more common. Psychiatry has done enough for my life. I have asked to be treated only by neurologists. Johns Hopkins has a Dystonia subsection in their neurology department.

    Psychiatry, mental health professionals and BigPharma need to acknowledge this monster is of their creation. I gave up hope on that ever happening. Some psychiatrists are still calling this Conversion Disorder.

    I have chosen to remain on my .5 mg Klonopin a day because it does help. I also chose to stay on my other meds. I am 56. I know my time on earth is coming to an end because of 30 years of being lied to and poisoned. I stay on them because withdrawal is too hard. My chose is for quality not quantity.

    Fortunately, my friends, my neighbors, and my church friends just ignore it. I don’t want Pharma commercials to gloss over my suffering with only showing small symptoms. These commercials are more insulting because it is by these companies who are the ones that created it. At the caveat at the end of these ads are always, “this may worsen your condition”.

    Congress finally dragged the Tobacco industry into hearings on the deadly nature of Cigarettes smoking. Even though they already knew what was going on. I would love for the same for BigPharma and the APA. There is no longer a way to hide from this. I would also hope that these drugs stay on the market. If these drugs help you and you have complete informed consent this is your body autonomy.

    I do urge that those whose life was destroyed by Psychiatry by diagnosis or drugs let them know. The business address for the American Psychiatric Association is 800 Maine Street SW, Washington DC, 20024.

    DC is strict about demonstrations so make sure you understand all the regulations should you want to go. Psychiatric Survivors do have the right to mail their story to the APA. It can’t be harassing or threatening. Just let them know how they affected your life. If you’re in DC you can drop by their office to take a selfie. I did a selfie which was me in front of there sign giving them the middle finger. After I took that photo the pedestrians around me began to cheer.

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      • At times dystonia also affected my torso. TD made my arms and legs thrash so much I couldn’t sit in a chair, read a book, write a note or hold a telephone receiver up to my face. Getting to sleep was almost impossible, as was taking a shower or brushing my teeth. Eating wasn’t any easier. Mostly I had to lie on the floor and watch tv as best I could, but lying flat didn’t keep my muscles from contracting and limbs from suddenly thrashing out; it was like being a marionette puppet. My body was never still long enough to completely relax. And once it made me pace from room to room at breakneck speed. It went on for years. Completely horrifying. I don’t know what I would have done if my mother hadn’t been able to take care of me. No one should have to go through it.

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      • I was on Thorazine for only about a year and went off cold turkey, and the Ativan and Norpramin I was prescribed didn’t help much at all. Psychiatry calls this “medicine”, but medicine it is not. Please don’t let this happen to you or anyone you know. It’s a place no one should go.

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        • I totally agree, Steve. I think using neuroleptics for anything other than isolated emergencies is indefensible. But the problem with that is everyone has their own definition of an emergency, which leaves neuroleptics open to being abused by the medical authorities in power. And using neuroleptics as “maintenance medication” is horrible idea for the reasons you stated. Neuroleptics need to be seen for what they are: chemical stun guns.

          The apathy is the invisible villain. But it’s more than apathy: my ability to think critically was meaningfully diminished; to put it another way, I could no longer access my executive functioning; I could vaguely recall it, but it was always just out of reach. I was zombified. The term “chemical lobotomy” was a tragic reality for me that most critically affected my ability to advocate for myself.

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          • Exactly. The frontal lobes are the center of planning and organization, and hence motivation. It would be almost impossible to execute any kind of complex plan with the dopamine flow to your frontal lobes being so dramatically curtailed. And of course, there is permanent damage from which a person may or may not recover. All to “treat” a “disorder” that no one has any clue if it exists or what is wrong or what is being “fixed.”

            Chemical stun gun is a great description!

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          • Thank you, Steve. I was totally unmotivated on neuroleptics. But antidepressants and benzos made me numb to everything, not unmotivated, but definitely numbed. It was like there was a window between me and everything around me that I couldn’t open. It’s why I’m against “psych meds”. And my cognitive abilities are still improving after almost eight years off all “psych meds”.

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    • Dear Jonnie,

      I can relate to a lot of what you talk about. Most of the time I had to stay indoors because the TD was too physically unmanageable: walking was exhausting and riding in a car could be even worse. And being gawked at in public was another ordeal I could ill afford because any added emotional strain increased the TD.

      And I totally understand and respect your decision to remain on the offending drugs because discontinuing can be even more intolerable.

      You also mentioned how the tobacco industry was finally dragged before Congress. I too hope the same thing happens to Big Pharma and the APA. I think that’s bound to happen if neuroleptic prescribing isn’t seriously limited in the near future. I predicted a surge in TD when I first saw ads for neuroleptics on tv, and so far, my worst fears for people have been slowly coming true. So thank you for including the address for the APA.

      In the meantime, I’ll keep hoping things ease up for you.

      Birdsong

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  11. I was on psychotropics for over 30 years and believed I was supposed to remain on them for the duration of my life. When I found out that might not be true, I started to look into it and found MIA. In the last 6-7 years I’ve been diagnosed with both fibromyalgia and rheumatoid arthritis. I have also come off of the anti-depressants I was taking at the time. I don’t know what to believe about the RA as it seems nothing helps, despite the fact that I am on 3 different drugs. OTC meds are 50/50 hit or miss for the fibro pain. I really related to the line in Joey’s poem about painful skin. It also frequently feels like my muscles are fighting me and causing more pain. I don’t know what to do. I want to sue someone, but it’s not likely I’ll get anywhere with that!

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    • Thanks to Dr. Breggin there’s been some courtroom victories regarding TD and akathisia caused by neuroleptics, but it might take another generation before people are widely aware of the serious risks posed by neuroleptics.

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  14. I have had oral td for over a year. The only way to stop the mouth movements is to chew gum or suck on sucking candies. When I first went to my to my former psychiatrist I told her I hadn’t had a psychotic episode in ten years and I was still taking haloperidol. She should have taken me off of it. Sure enough I developed td six months later. She should have referred me to a neurologist. I am in the process of trying to sue her for medical malpractice. Google it you can sue your psychiatrist. Good luck

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