Psychiatry’s Denial of the Horrors of Tardive Dyskinesia

ANDWhile tardive dyskinesia and even akathisia, which it resembles, are serious and horrific harms of psychiatric drugs, they are often overlooked or deliberately ignored by psychiatrists.

It took psychiatry 20 years to recognize tardive dyskinesia as an iatrogenic disease, even though it affects about 4-5% of patients receiving neuroleptics per year. Poul Leber of the FDA concluded in 1984 that, in their lifetime, all patients could 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 bearded doctor wagging his finger "NO"
Neurologists are much better at spotting tardive dyskinesia than psychiatrists, and so are researchers. The researchers found tardive dyskinesia in 10 of 48 consecutively hospitalized patients with acute psychosis and treated for at least one week with neuroleptics, while psychiatrists made this diagnosis in only one of them.

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

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

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

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

Organized denial of these serious harms caused by drugs

A notable omission in most lists of neuroleptic impairments 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 discussed 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 evaluation of clinical trial 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 depression medication study reports that also included adults, we also found examples of coding errors, for example, akathisia was miscoded as hyperkinesia.

The symptoms of akathisia can 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 co-occurs with, and is masked by, akinesia, a common extrapyramidal injury in neuroleptics.

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

In one study, 79% of mentally ill people who attempted suicide suffered from akathisia. Additionally, Internet patient reports show that suicidal thoughts while taking neuroleptics are strongly associated with akathisia; 13.8% of respondents who reported akathisia also reported suicidal thoughts, compared with 1.5% of those who did not mention akathisia (P < 0.001). This damage is dose related. By 1999, the FDA had received reports of more than 2,000 fluoxetine-associated suicides, and a quarter of the reports related specifically to akathisia and agitation.

Videos of tardive dyskinesia

American 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 remember certain sensations, but I don’t feel very well.

I can’t hold someone’s hand because my hands grab. They hug very tightly. They open and close quickly and churn until they stop.

My skin can’t be touched, even through my clothes because it’s terribly painful and hypersensitive.

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

As soon as I start a movement, a whole cascade of jerks and fidgeting moments follows until it stops and stiffens again.

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

Here’s Marino’s Tardive Dyskinesia video, showing how horrific this brain damage can be.

And here is another very old heartbreaking video I received from psychiatrist Peter Breggin of people suffering from Tardive Dyskinesia or Akathisia. Some of the children were permanently brain damaged to an incredible extent.

Dear reader. I have a plea for you. Please spread information about my item wherever possible. Neuroleptics are forced upon patients with the untenable argument that they are good for them, which psychiatrists routinely claim they cannot dispute because they lack understanding of their disease.

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

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Mad in America hosts blogs from a diverse group of writers. These posts are designed to serve as a public forum for a broader discussion of psychiatry and its treatments. The opinions expressed are those of the authors.

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