When Mary* was diagnosed with bipolar depression in 2002 at age 33, it was a relief to find a medication—ziprasidone (Geodon)—that helped manage her symptoms. However, Mary’s psychiatrist warned that long-term use of the medication would put her at risk of developing tardive dyskinesia (TD). In 2019, her tongue began moving uncontrollably. Naturally, she was distressed and concerned. “I was very worried because I couldn’t stop the movements that were present at all times. It was embarrassing and always on my mind.”

The TD was challenging enough, but when her psychiatrist tried switching her medication for bipolar disorder to lithium to stop the TD symptom progression, her mental health suffered. “It was a very dark time,” she recalls. As a result, Mary took a leave of absence from her job.

Mary is not alone in her experience. Maria Drumm had been taking antipsychotic medications for schizophrenia since 2002. Years later she switched to a combination of benztropine (Cogentin), quetiapine (Seroquel), and fluphenazine (Prolixin). In 2020, Maria started experiencing symptoms like mouth twitching and involuntary head nodding. She also suffered from akathisia, a condition that made her feel agitated, restless, and unable to sit still.

Maria began to feel depressed, and after several difficult months, she finally saw a neurologist who diagnosed her with TD. Following this diagnosis, Maria’s psychiatrist switched her antipsychotic medications, but the new one she tried didn’t work. Over nearly three years, Maria was hospitalized several times and struggled with suicidal thoughts before finding the right combination of psychiatric and TD medications and treatments. Clozapine (Clozaril) has helped her, but the damage had already been done. 

What is Tardive Dyskinesia? 

Sara Schaefer, MD, a movement disorders specialist and associate professor of neurology at Yale University, explains, “Tardive means ‘delayed,’ and kinesis means ‘movement,’ so someone with tardive dyskinesia has the delayed development of abnormal movements.” 

TD involves persistent, involuntary movement often involving the lips, mouth, tongue, upper face, and upper limbs; tics; or quick and uncontrollable jerking movements. It is an iatrogenic condition, meaning it is a health problem caused by medical treatment.

Brandon Barton, MD, MS, associate professor at Rush University Medical Center and director of the movement disorders clinic at the Jesse Brown VA Medical Center explains that people living with TD may experience burning sensations in the mouth or mental exhaustion from trying to control the movements. He says that controlling the movements may work, “but it distracts [a patient] from all other tasks and may [lead to] fatigue and pain as well as disruption of mood and sleep.”

The severity of TD can vary widely, and the diagnosis can be upsetting, says Sanaz Attaripour, MD, a movement disorder specialist and associate professor at the University of California Irvine. “The abnormal involuntary movements frequently involve highly visible areas, such as the face, mouth, tongue, and extremities, leading to significant social stigma and interference with activities of daily living and social interaction,” she says. 

Dr. Barton adds that in almost all cases, and like Mary’s experience, “The social aspect of the condition is sometimes the most distressing part because patients are concerned about whether their movements may cause people to perceive and react to them differently.”

Even mild movements in the mouth and face can cause patients “substantial psychological distress” and lead them to avoid social situations, Dr. Attaripour adds. In severe cases, TD may affect the patient’s torso and related muscles, “resulting in disabling symptoms such as repeated arching of the back or difficulty sitting, which can be challenging for both patients and caregivers,” she says.

What Medications Can Cause Tardive Dyskinesia?

All tardive syndromes are caused by medications. Dr. Schaefer says, “In TD, the movements are caused by antipsychotic medications used to treat conditions like schizophrenia and some anti-nausea medications that block dopamine in the brain.”

Dopamine is a neurotransmitter, or signaling molecule in the brain. It helps regulate movement, motivation, and cognition. Long-term blocking of dopamine can make the brain’s dopamine receptors extra sensitive, which can cause the involuntary movements seen in TD.

Most of Dr. Attaripour’s patients with TD are referred by psychiatrists, who often recognize the symptoms more readily than other providers. However, diagnosis is not always easy if someone has not taken an antipsychotic medication in a while. 

“If the psychiatrist-patient relationship is over because their treatment has ended, it can be difficult for other providers to connect that medical history and its correlation to TD movements,” Dr. Attaripour says, adding that TD can continue or even emerge after a patient has stopped taking antipsychotic medication.

In Mary’s case, she spent nearly a year trying different approaches to manage her bipolar depression. When nothing else worked, she started taking ziprasidone again. This stabilized her mental health, allowed her to focus on the TD symptoms, and led her to Dr. Barton. Dr. Barton says Mary’s TD was caught early and is relatively mild. Not all patients are aware of the risk and know to watch for symptoms, so diagnosis may come later in the disease course; each patient’s experience is different.

Tardive Dyskinesia Treatment

TD is difficult to treat. The first step, Dr. Schaefer says, is figuring out which medication caused the problem and whether it can be reduced, stopped, or changed to an alternative antipsychotic medication that is less likely to cause TD.

Finding an effective approach to treating TD symptoms while managing a serious primary mental health problem can be quite challenging. Ideally, the patient would stop taking the medication that triggered the TD, but Dr. Barton says in cases like Mary’s, “When patients can’t get off the drug because their mental health would be too unstable. We have to find ways to symptomatically treat the [TD] movements while keeping the drug there.”

Dr. Schaefer explains that for many years, antipsychotic medications tended to block all dopamine, while the newer generation of medications tends to be “more nuanced and targeted” and less likely to cause TD. Dr. Schaefer says any medication changes must be done with a psychiatrist to avoid worsening the person’s mental health condition. For example, if a patient is taking medication for a primary condition like schizophrenia, as Maria was, it can’t and shouldn’t always be changed.

There is no standard for TD treatment. After medication changes are made, which can take weeks or months, Dr. Attaripour says patients can try VMAT2 inhibitors—a class of medications that reduces unwanted movements—such as valbenazine or deutetrabenazine. These are the only U.S. FDA-approved pharmacologic treatments for TD, and they are considered first-line therapy for moderate to severe cases. They reduce abnormal movements by lowering dopamine levels in certain parts of the brain.  However, they may cause side effects like depression or Parkinson-like symptoms if too much dopamine is depleted.

About a year after Mary’s TD diagnosis, Dr. Barton prescribed deutetrabenazine (Austedo). While it has significantly improved her symptoms, there have been many changes to her treatment approach over the years, including the addition of a medication called amantadine (Symmetrel) that was added when deutetrabenazine, which controls unwanted movements by lowering dopamine levels, caused Parkinsonian-like symptoms to occur.

Deep brain stimulation is another treatment option but has its own downsides, including the risks of implanting electrodes deep in the brain. This option is usually considered only when TD symptoms are severe.

Prevention and early intervention are the most effective approaches. If patients need an antipsychotic medication, they should take the lowest possible dose for the shortest possible time. This approach means that more medical professionals need to be aware of TD and other tardive syndromes so they can avoid using medications that have the highest risk of causing TD.

“Because TD can be lifelong and nonresponsive or suboptimally responsive to all interventions, prevention matters the most,” Dr. Attaripour says.

Life with Tardive Dyskinesia

Now, at 57 years old, Mary is happy with her treatment approach. “I’m in a good place mentally and physically. I’m very lucky that the medication has taken away virtually all movement problems and sometimes I almost forget I have it.”

At 49 years old, Maria, too, says her life has greatly improved since that challenging time following her TD diagnosis.  “I am taking deutetrabenazine (Austedo) that helps me walk better, and I also get botulinum toxin (Botox) for mouth movements that made it look like I was chewing gum,” she says. “I was so insecure and shattered and not independent before, and I’m so happy I can do things again that I couldn’t do, like laundry and going to the grocery store.” 

In her present reality where prevention is too late, she has found ways to deal with the emotional toll of the condition with the support of her fiancé, Michael, her family, and her faith. She feels good about where things currently are with her TD and wants others to know “there is always a silver lining, and mine is that I’ve gotten much better and am able to do the things I want, live in an apartment with Michael, and not be in bed all day.”

Although TD is a distressing disorder and difficult to treat, neurologists and psychiatrists can help patients manage symptoms and improve quality of life. Increasing awareness about TD may lead to earlier intervention and a better outcome with this lifelong condition. 

*Prefers not to use her last name due to concerns about stigma.