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.
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.
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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