Tardive dyskinesia can appear months or years after medication starts, and subtle early movements are easy to dismiss without routine AIMS checks.
Key Takeaways
- Tardive dyskinesia is underdiagnosed; far more people have symptoms than receive a formal diagnosis.
- A medication-related movement disorder, and newer VMAT-2 inhibitors can help reduce involuntary movements.
- Ask for an AIMS check about every six months to spot early signs and rule out look-alikes (such as Parkinsonism).
- If new or unusual movements appear, call your clinician — don’t stop medications suddenly.
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When Dawn L. was tapering off medication to treat lingering symptoms of bipolar depression in 2019, she started to experience severe jaw clenching and trouble swallowing.
The New Hampshire woman, now in her sixties, didn’t understand what was happening to her. No one told her that tardive dyskinesia was a possible side effect of the antipsychotic she was prescribed. Because she wasn’t informed, she wasn’t on the lookout for these involuntary jerking movements that come with the neurological condition, per Mayo Clinic.
“I had no idea what tardive dyskinesia (TD) even was, and I can guarantee that my provider at the time had no education about TD whatsoever,” says Dawn, adding that she’s still living with uncontrollable mouth movements.
“It’s been a nightmare. I would not wish this on my worst enemy,” she says. “People need to become more aware of the hidden dangers in some of the drugs we’re prescribed.”
Close to 60 percent of people who take antipsychotics are in the same boat. They don’t know anything about this involuntary movement disorder, according to a survey of 2,500 individuals conducted by the market research firm Ipsos Biosciences.
What Is Tardive Dyskinesia?
Tardive dyskinesia is a medication-induced movement disorder that often develops after a delay. It causes repetitive, involuntary movements — most commonly affecting the face, neck, arms, and legs — and can occur as a side effect of certain medications, including antipsychotic drugs used to treat psychiatric conditions, according to the National Institute of Neurological Disorders and Stroke (NINDS).
Who Is Most at Risk for a Missed Diagnosis?
Individuals most at risk for a missed diagnosis include those who have not received regular physical screenings or those whose symptoms are attributed to anxiety or “nervous habits.” Because tardive dyskinesia can take months or years to develop after starting a medication, both patients and providers may fail to connect the new movements to a long-term prescription.
Tardive dyskinesia affects approximately 600,000 people in the United States, notes the National Alliance on Mental Illness (NAMI). Yet only 25 percent of people with tardive dyskinesia are diagnosed, which leaves 75 percent living with the condition and receiving no help for it.
The misdiagnosis of tardive dyskinesia — and the high rate of underrecognition of all drug-induced movement disorders — has led to widespread incorrect treatment, particularly the incorrect prescribing of benztropine (Cogentin), used to treat acute dystonia and drug-induced Parkinsonism. This not only fails to treat individuals living with tardive dyskinesia properly but may worsen their symptoms.
While the exact reasons so many people remain undiagnosed aren’t fully understood, experts have their theories. Here are five of them.
1. Unaware of Medications That Can Cause Tardive Dyskinesia
Any drug that changes dopamine signaling in the brain can potentially cause tardive dyskinesia. Older or first-generation antipsychotics are most likely to cause tardive dyskinesia, and while newer (second-generation or atypical) antipsychotics seem less likely to do so, they aren’t entirely without risk, reports NAMI.
As many as 1 in 5 people taking a second-generation antipsychotic drug for a prolonged period will develop tardive dyskinesia, according to research published by the American Psychiatric Association.
“Antipsychotic medicines nowadays are used to treat many psychiatric conditions beyond psychosis (delusions and hallucinations) in people with schizophrenia, where they were first studied,” says Joseph F. Goldberg, MD, a clinical professor of psychiatry at Mount Sinai Icahn School of Medicine in New York City. “They’re commonly part of the treatment of mania, depression, anxiety, and post-traumatic stress disorder, among other conditions.”
Other drugs can also cause tardive dyskinesia, according to MedlinePlus. These may include:
- Metoclopramide (Reglan) treats nausea, vomiting, and gastroparesis (slow to no movement of the muscles in your stomach that aid digestion).
- Certain antidepressants may occasionally contribute to movement challenges.
- Parkinson’s disease medications such as levodopa (Sinemet) and procyclidine (Kemadrin) are potential causes.
- Anti-seizure medications are also on the list of drugs to monitor.
Many people don’t think of these drugs as potential causes of tardive dyskinesia, so they may not know there’s a risk, making them more likely to miss the diagnosis.
Are you at risk for tardive dyskinesia? The answer is yes if you take any dopamine receptor blocking agent, says Stephen R. Saklad, PharmD, the director of the psychiatric pharmacy program at the University of Texas at Austin.
A study of 164,000 adults on atypical antipsychotics found that among individuals diagnosed with tardive dyskinesia, the most common overlapping diagnoses were anxiety disorders, mood disorders, and schizophrenia, suggesting that tardive dyskinesia may be more common among people with dual diagnoses.
The only fail-safe way to evade this risk is to avoid using dopamine receptor-blocking agents unless you absolutely need them. “There are no trivial uses for these medications,” Dr. Saklad says.
The longer you’re on the medication, the higher your risk of tardive dyskinesia, he says.
2. Not Everyone Is Looking for the Signs as Often as They Should
There’s no one test that says you have tardive dyskinesia or you don’t, explains Dr. Goldberg. “It’s a clinical diagnosis based on observing someone’s movements.”
The Abnormal Involuntary Movement Scale (AIMS) is a 15-minute examination performed by a physician, pharmacist, or nurse. It scores seven areas of the face, body, and limbs on their level of abnormal movement. Experts recommend that anyone taking antipsychotic medications should receive an AIMS screening at least every six months to catch early signs of tardive dyskinesia.
Unfortunately, not all clinicians regularly perform AIMS exams in people who take antipsychotic medicines, increasing the likelihood the condition will be underrecognized, Goldberg notes.
3. Tardive Dyskinesia Is a Great Imitator
Many other conditions may resemble tardive dyskinesia and mimic its symptoms, according to a review. It can be mistaken for:
- Another movement disorder
- Drug-induced Parkinsonism
- Chorea (involuntary movements of the limbs or face)
- Seizures
- Essential tremor
- Tourette’s syndrome
- Tic disorder
It’s vital for clinicians to distinguish tardive dyskinesia from other conditions. While Parkinsonism typically involves muscle stiffness and “pill-rolling” tremors at rest, tardive dyskinesia is characterized by rapid, jerky, or flowing movements, often in the face or tongue. Essential tremor usually occurs during purposeful movement (like reaching for a cup), whereas tardive dyskinesia movements are involuntary and often rhythmic or repetitive.
Also, abnormal mouth movements may be due to dry mouth or dental problems.
4. It’s Easy to Miss Early Signs
If you know what to look for in yourself or your loved one, you’ll be able to identify any signs early, when tardive dyskinesia is easier to treat and potentially reversible.
“Tardive dyskinesia is likely underdiagnosed because patients, their families, and physicians often don’t notice mild tardive dyskinesia symptoms,” says Olga Waln, MD, an assistant professor of clinical neurology at Houston Methodist in Houston and Weill Cornell Medical College in New York City.
Early signs of tardive dyskinesia may be subtle and include unusual movements around the face or mouth or piano-playing movements in the fingers or toes, says Michael Murphy, MD, PhD, an assistant professor of psychiatry at Harvard Medical School in Boston and a staff psychiatrist at McLean Hospital in Belmont, Massachusetts.
Whether it’s grimacing, rapid eye blinking, teeth grinding, or continual chewing motions, these movements are involuntary, so a person may not even realize they’re happening unless a close friend or family member points it out. “It’s good to have people around you who can tell you if you are making strange movements,” Dr. Murphy says.
Dawn agrees. “If you feel any odd body sensations or movements that you have no control over — no matter what you try — don’t hesitate to get in touch with your prescribing doctor.”
5. There Wasn’t Much to Do About It Until Recently
Until relatively recently, there were no treatments for tardive dyskinesia, so many doctors viewed the condition as an unfortunate side effect of lifesaving and necessary therapy.
There are now two FDA-approved VMAT-2 (vesicular monoamine transporter type 2) inhibitors: deutetrabenazine (Austedo) and valbenazine (Ingrezza), which have been available since 2017. These medicines are taken daily.
If long-term or possibly indefinite use of antipsychotic medicines is essential, adding a VMAT-2 inhibitor makes sense if tardive dyskinesias symptoms emerge, says Goldberg.
“They suppress the symptoms of tardive dyskinesia, and if they’re stopped, then it’s possible that tardive dyskinesia symptoms could recur, regardless of whether or not someone is also continuing to take a necessary antipsychotic medicine long-term,” Goldberg says.
Early in its course, tardive dyskinesia is occasionally reversible. Yet the natural course of tardive dyskinesia is to get worse over time unless the offending medication is stopped, Saklad says.
The best chance for remission or improvement of tardive dyskinesia symptoms is to stop the medication that causes the symptoms, but this should never be done abruptly without medical supervision.
“Gradual weaning off a causative drug, switching to a [drug] with lower risk of tardive dyskinesia, or at least a dose reduction, are considered the first steps in treating tardive dyskinesia,” Dr. Waln explains. “If those measures aren’t feasible or effective, there are medications we can prescribe for treating tardive dyskinesia.”
Dawn says her symptoms have decreased since she was diagnosed with tardive dyskinesia. “They’re not as debilitating, but it’s still a daily struggle,” she says. “On some days, especially if I’m under any stress or I’ve overextended myself, my symptoms are very much noticed and uncomfortable.”
She tries to limit stress. “When I’m feeling very tense, I have to nap, as sleeping is the only total relief I get, and if I can’t nap, at least I will find a quiet spot and close my eyes for a bit and do some deep breathing and meditating.”
Editorial Sources and Fact-Checking
UPDATED: Originally posted January 4, 2024
