Tardive dyskinesia is a bothersome side effect of certain medications that can cause grimacing, jaw clenching, lip puckering, and other involuntary movements. This disorder may affect as many as 750,000 people in the United States, according to the National Organization for Tardive Dyskinesia.
Tardive dyskinesia is most often caused by long-term treatment with antipsychotic drugs. But other medications, including ones that treat Parkinson’s disease or nausea, may also lead to the condition.
Tardive dyskinesia most commonly causes involuntary movements in the muscles of the face, including the mouth, though they may also occur in the torso and extremities, says Frederick Charles Nucifora Jr., DO, PhD, an associate professor of psychiatry and behavioral sciences at Johns Hopkins University School of Medicine in Baltimore.
Movements can also include chewing motions, lateral movements of the jaw, and jerky tongue movements, says Dr. Nucifora.
Although tardive dyskinesia symptoms can improve or disappear after stopping or reducing the dose of the medication causing the symptoms, the condition can be permanent in many cases.
6 Things People With Tardive Dyskinesia Want You to Know
Tardive dyskinesia is characterized by repetitive and involuntary movements, primarily in facial muscles, including the mouth.
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Antipsychotic drugs are mostly used to manage psychosis and symptoms such as delusions (false beliefs) and hallucinations (seeing or hearing things that others don’t). The drugs are often prescribed to treat bipolar disorder, schizophrenia, and schizoaffective disorder.
These medications can also be used in combination with other drugs to treat other mental health conditions, such as:
Antipsychotics work by blocking dopamine receptors in the brain. Dopamine is a neurotransmitter that not only helps control the part of the brain that signals reward and pleasure but also plays a big role in coordinating muscle movements.
Other medications that can cause tardive dyskinesia include antidepressants, antiemetics (used for severe nausea and acid reflux), and anxiolytics (used to treat anxiety).
The severity of tardive dyskinesia varies widely from person to person. Some people may not even be aware they’re experiencing involuntary movements, nor are they bothered by them, says Nucifora. Other people, though, may develop speech, swallowing, and even breathing problems, he says.
“For more severe tardive dyskinesia, people will seek help,” says Nucifora. “But many people accept tardive dyskinesia as part of their illness.”
Because tardive dyskinesia can look and feel different for each person, there are many misconceptions about the condition, and it can be difficult to separate the myths from the facts. Here are some truths and misunderstandings about this movement disorder.
Fact: The Risk of Developing Tardive Dyskinesia Increases the Longer You Take an Antipsychotic
Tardive dyskinesia primarily occurs as a side effect of long-term use of antipsychotics. And, says Nucifora, higher doses of an antipsychotic can increase the risk of developing dyskinesia.
Even though tardive dyskinesia typically appears after years of using a medication, it can also happen after taking it for only months — or even as little as one day.
Because tardive dyskinesia is linked to long-term use of antipsychotics, the National Alliance on Mental Illness recommends that people taking these medications be closely monitored and screened by doctors. In fact, a review reported that the best way to treat tardive dyskinesia is with prevention, cautioning clinicians to limit prescriptions of certain drugs and minimize the duration of therapy.
Myth: People Who Develop Tardive Dyskinesia Should Stop Taking Their Medicine ASAP
Although you should talk to your doctor right away about any involuntary movements you’re experiencing, you shouldn’t stop taking the drug on your own, says Anhar Hassan, MB, BCh, a consultant neurologist at Beacon Hospital in Dublin.
Halting medication without speaking to your doctor first can be risky, she says. Abruptly stopping antipsychotics can trigger a recurrence of psychiatric symptoms or even withdrawal symptoms.
If your physician decides to change your current medication, the tardive dyskinesia may stop, says Dr. Hassan. And even if the symptoms don’t go away completely, says Nucifora, the progression of the disorder may be halted or slowed by switching drugs.
Myth: There Is No Way to Treat the Symptoms of Tardive Dyskinesia
Two drugs, deutetrabenazine (Austedo) and valbenazine (Ingrezza), are approved by the U.S. Food and Drug Administration to treat tardive dyskinesia specifically.
The drugs suppress symptoms of tardive dyskinesia, but they do not cure it. And symptoms can recur if the drugs are stopped.
Myth: Only the ‘Older’ Antipsychotics Cause Tardive Dyskinesia
Doctors refer to different groups of antipsychotic drugs as first generation (or typical), second generation (or atypical), and third generation (dopamine receptor partial agonists).
People who take first-generation antipsychotics are more likely to develop tardive dyskinesia than those who take second-generation antipsychotics, says Nucifora, but the latter class of medications can still cause it.
According to a review, there may also be an increased risk of tardive dyskinesia with third-generation antipsychotics.
Fact: Certain Risk Factors Can Increase Your Chances of Developing Tardive Dyskinesia
Although there is no medical consensus on exactly what causes tardive dyskinesia to occur, there are several risk factors that seem to make some people more likely to develop the condition.
According to one review, those include being older, being female, and having the illness longer, as well as having diabetes, smoking, and misusing alcohol or other substances.
Other risk factors associated with tardive dyskinesia include the use of dopamine-blocking medications; taking the stronger or older versions of dopamine-blocking medications, such as haloperidol (Haldol); a history of prior movement disorders while using dopamine-blocking medications; a genetic predisposition to tardive dyskinesia; and brain developmental disorders, says Hassan.
If you are taking a medication that may cause tardive dyskinesia and also have one or more of these risk factors, talk to your doctor about your concerns, says Hassan.
The Takeaway
Tardive dyskinesia is a movement disorder that can cause grimacing, jaw clenching, lip puckering, and other involuntary movements as a result of long-term use of antipsychotics or certain other medications.
Tardive dyskinesia can look and feel different from person to person, which contributes to misunderstandings about the condition.
Educating yourself about tardive dyskinesia can help you separate fact from fiction.
Jessica Baity, MD, is a board-certified neurologist practicing in southern Louisiana. She cares for a variety of patients in all fields of neurology, including epilepsy, headache, dementia, movement disorders, multiple sclerosis, and stroke.
She received a bachelor's degree in international studies and history from the University of Miami and a master's in international relations from American University. She graduated from the Louisiana State University School of Medicine, where she also did her internship in internal medicine and her residency in neurology.
Prior to practicing medicine, she worked in international relations and owned a foreign language instruction and translation company.
Becky Upham has worked throughout the health and wellness world for over 25 years. She's been a race director, a team recruiter for the Leukemia and Lymphoma Society, a salesperson for a major pharmaceutical company, a blogger for Moogfest, a communications manager for Mission Health, a fitness instructor, and a health coach.
Upham majored in English at the University of North Carolina and has a master's in English writing from Hollins University.
Upham enjoys teaching cycling classes, running, reading fiction, and making playlists.
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Ricci V et al. Third-Generation Antipsychotics and Lurasidone in the Treatment of Substance-Induced Psychoses: A Narrative Review. Healthcare. February 2024.
