Technically, the word tardive means delayed; dyskinesia means abnormal.

True to its name, many people wait years to even put a name to their experience, their truth, their pain, their isolation. Drugs meant to treat already difficult mental illnesses can cause TD. You could say it’s like rubbing salt in the wound. Or you could talk to the people who are living it.

To raise awareness about TD, Psycom connected with Keith Wapniarski, Wendy Waters, Analisa Corral, and Erik Schneider—four people who live with TD, in different stages of their lives. All harmed by medication intended to help them.

Their stories are heartbreaking, but also hopeful.

What does tardive dyskinesia feel like?

TD affects the nervous system and develops most often in response to taking certain antipsychotic medications used to treat mental health conditions such as bipolar disorder and schizophrenia but has also been linked to medicine prescribed for nausea, anxiety, depression, seizures, and allergies.1

The movements are involuntary and can be painful—think severe cramps or a painful Charley Horse (in some people). But the embarrassment TD causes may be just as bad leading to social isolation and depression.

It’s not possible to hide a protruding tongue or a mouth that moves like a fish. Grimacing, smacking, puckering, rapidly jerking arms, legs, or feet draw unwanted attention but when you have TD you have no control.2 In the worst cases, TD makes speaking difficult and sleep nearly impossible. TD is hard on loved ones, too, who feel helpless and frustrated.

What drugs cause tardive dyskinesia?

Tardive dyskinesia is a response to medication, often a class of drugs known as neuroleptics (or antipsychotics) which can help with psychosis in people with schizophrenia or bipolar disorder. Medicines that most commonly cause it are older, or first-generation, anti-psychotics including:

    • Chlorpromazine (Thorazine)
    • Fluphenazine (Prolixin)
    • Haloperidol (Haldol)
    • Perphenazine (Trilafon)
    • Prochlorperazine (Compazine)
    • Trifluoperazine (Stelazine)

    (Note: Research shows the risk of developing TD is lower with the newer or second-generation antipsychotics.3)

    Antipsychotics work by blocking the dopamine receptors in the brain. Dopamine is a neurotransmitter, a chemical that helps brain cells communicate with one another and is involved in movement.

    Experts believe that the dopamine receptors in people with TD become hypersensitive to dopamine causing hyperactive involuntary movements.

    “The older, or first-generation antipsychotics (developed in the 1950s) are more likely to cause tardive dyskinesia,” says Brittany LeMonda, PhD, senior neuropsychologist at Lenox Hill Hospital in New York City. “More recently, newer antipsychotics, called second-generation antipsychotics (or SGAs) have been developed. They cause tardive dyskinesia less often, although it can continue to occur.” 4

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    Some antidepressants, anticonvulsants (medications for seizures), medications for nausea and vomiting, and anti-anxiety medications also can cause TD, says Katharine N. Woods, MS, DO, medical director, hospital psychiatry (BUMCS/BUMCT), director of neurotherapeutics, and an assistant professor at the University of Arizona. “Medications used for allergies, acute anxiety, and some stimulants for ADHD and weight loss can also cause TD,” she says.

    The risk of developing TD—and the likelihood that it is irreversible is thought to be directly tied to the length of treatment and the total cumulative dose of medication over time. While most cases of TD occur after taking the drugs for several years, it’s been known to develop after shorter courses of neuroleptic drugs–sometimes in as little as six months, says Daniel Tarsy, MD, professor of neurology, emeritus, at Harvard University.

    Discontinuing the antipsychotic medication usually diminishes TD but the disorder can also be permanent. It’s ironic that taking antipsychotics may actually suppress TD symptoms while at the same time mask progression of the underlying condition (bipolar disorder, for example).

    “Seventy percent of the time cases of TD are mild and may not even be noticed by the patient,” Dr. Tarsy explains. “Just 3% are severe. It’s more common in women than men; older people than younger ones, and somewhat more common in black people than people in other races.”

    What happens in the brain to cause tardive dyskinesia?

    The brain is responsible for controlling and coordinating all movement, explains Alessandro Di Rocco, MD, system director of neurology, Parkinson’s, and movement disorders at Northwell Health. To do this, the brain produces dopamine.

    Dopamine is made in one area of the brain, while another part of the brain houses the receptors, or the entry doors, through which signals must travel to coordinate movement. In order for normal movement to take place, dopamine needs to get through these doors.

    But in some people who have been using neuroleptic drugs, trouble can occur at the receptor level. These drugs may diminish the amount of dopamine that can get through the entry doors but at the same time, the brain becomes overly sensitive. “The receptors become so sensitive that involuntary movements begin to occur,” Dr. Di Rocco explains.

    This video, produced by the Depression and Bipolar Support Alliance, illustrates how the mechanism works.

    “While it is not entirely proven, the prevalent theory is that the chronic blockade of dopamine receptors in the brain causes them to become hypersensitive,” explains Dr. Tarsy. “This causes dyskinesia.”

    Who is affected by TD?

    Being elderly, female, or having diabetes, increases the risk of getting TD.5  But TD occurs mostly in people who have been taking neuroleptic drugs for schizophrenia or another serious mental illness for a long period of time (high doses for many years).

    Of those, around one in four patients will experience TD. The estimated annual incidence of TD with continuous exposure to a first-generation antipsychotic is 5 to 6% a year overall and as much as 10 to 25% a year among older adults. (First-generation antipsychotic drugs aren’t used as frequently today.)

    “With long-term continuous exposure, the 5 and 10-year cumulative risk of TD is around 25 and 50%, respectively,” Dr. Tarsy says.

    TD is neither a rare disease nor a growing problem. In fact, Dr. Tarsy says, it’s actually less common than it once was because of the increased use of less potent “second generation” psychiatric drugs (SGAs) which include clozapine (Clozaril), quetiapine (Seroquel), olanzapine (Zyprexa), and risperidone (Risperdal).

    “It’s been estimated that around 5% of psychiatric patients who take ‘first generation’ antipsychotic drugs (these are the older antipsychotic drugs that are not used as much these days) develop TD,” Dr. Tarsy says.

    Treating and Preventing TD

    Experts say it’s important to ask about TD risks when being prescribed new medication. If you need chronic treatment, insist on the lowest dose for the shortest amount of time, and be sure to report worrisome symptoms as soon as possible.

    “If you wait too long, the likelihood of controlling it diminishes. If you intervene quickly, you have a better chance to be successful,” Dr. DiRocco says.

    If you are taking a medication that causes TD, you should be screened regularly for the disorder. Between appointments, it’s important to let your health care provider know if you develop unusual, involuntary movements which may be symptoms of TD.

    Subtle movements of the tongue, rapid blinking, and uncontrolled eyebrow raises can be early signs, Dr. Ri Rocco says. If you or a loved one are diagnosed with TD, the initial treatment is usually to stop the neuroleptic drug, as long as it’s safe from a psychiatric standpoint. Your doctor may decide to try a second-generation antipsychotic if it seems appropriate but those can sometimes cause TD as well.

    In 2017, the US Food and Drug Administration (FDA) approved two medications to treat adults with TD—valbenazine (Ingrezza) and deutetrabenazine (Austedo).

    “These drugs are quite helpful,” Dr. Di Rocco says. “Early intervention leads to a much better chance of success.”

    When TD symptoms are mild, Dr. Tarsy notes, treatment with Ingrezza or Austedo may not be required.

    To prevent TD, some doctors prescribe supplements to patients taking antipsychotic drugs, says Dr. Woods. Omega-3s, vitamin B6, vitamin E, and melatonin can sometimes be taken along with antipsychotics that carry a heightened risk for TD.

    “It’s important to discuss supplements with your doctor who understands the overall picture of your personal conditions and needs. Taking them without input from your doctor can be harmful to your health,” Dr. Woods says.

    A note about using cannabis to treat TD. Two of the people profiled in this collection use different forms of cannabis to treat their symptoms. It’s important to note that cannabis for TD has not been studied in humans, only rats. So, any evidence of cannabis as an effective treatment for TD is anecdotal. Researchers are hopeful that larger studies will prove there is a promising role for this class of drug in the therapy of dyskinesia and possibly tics. In the meantime, experts urge caution when using these substances in people with compromised neurologic function due to disease and report that substances containing THC can be dangerous for people with a history of psychosis as it can exacerbate or even trigger new-onset psychosis.6,7,8,9

    The best way to treat TD is by preventing it.

    Getting Help for Tardive Dyskinesia

    If you suspect that you or a loved one may have TD, Dr. Tarsy recommends seeing a neurologist, preferably one with a specialty in movement disorders, who can work with the psychiatrist to manage the antipsychotic medication and determine the best way to treat the condition.

    If metoclopramide is involved—a relatively frequent cause of TD, according to Dr. Tarsy—a neurologist can also work with the internist or gastroenterologist to address TD symptoms.

    If you are concerned about a family member with TD symptoms and they are reluctant to see a doctor, Dr. Tarsy says not to give up on encouraging them to seek specialized neurologic care. “The medications that have been recently released are effective in reducing the severity of TD,” he says.

    It’s also important to take the medication as prescribed and never stop a medication on your own, advises Dr. LeMonda. “It’s always best to seek advice from your doctor as soon as you notice changes in symptoms,” she says.

    Resources to Help You Live Better with TD

    Living with tardive dyskinesia can be lonely. Ashamed by the jerky movements, some people with TD become reclusive, avoiding social gatherings and being seen in public places. Connecting online with others that live with TD can be a profound experience and an excellent source of friendship and support.

    Support groups are very often the best way to collect names of experienced practitioners, effective treatment information, and tips gleaned from lived experience. Here are some organizations to reach out to:

    The National Organization for Rare Disorders (NORD) is loaded with helpful information on a host of rare diseases and since 1987 has been helping people pay for life-saving or life-sustaining medication that they couldn’t otherwise afford.

    The CureSZ Foundation has created a Tardive Dyskinesia Expert Panel. Persons with schizophrenia who are experiencing TD can use the panel to find a clinician and obtain a second opinion about medications and courses of treatment.

    TD Support Groups on Facebook 

    People who live with TD deserve our empathy and support. Share this article, and the series of patient stories, to help raise awareness and reduce stigma for those forced to live with this difficult disorder through no fault of their own.

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    Last Updated: Aug 9, 2021