Early symptoms of tardive dyskinesia can be subtle. Here’s how screening, treatment, and support can make a difference.
Key Takeaways
- Early signs can be easy to miss and may look like stress or anxiety, so tell your doctor if you notice any new or unusual movements.
- If you take an antipsychotic, regular AIMS screenings every three months can help catch problems early.
- Treatments are available that may ease symptoms and, in some cases, help them improve.
- Don’t stop or change your medication on your own — it needs to be done slowly and with your doctor’s guidance.
Tardive dyskinesia is an involuntary neurological condition characterized by uncontrollable, repetitive body movements. It can cause lip-smacking, tongue-thrusting, jaw-clenching, torso-twisting, or other mannerisms that may be subtle and mildly embarrassing, or painful and debilitating. While this is a brain-based disorder, it’s often manageable with the right approach.
The condition can result from the long-term use of antipsychotic medications (also called neuroleptics), which block dopamine receptors in the brain. Dopamine is known as the feel-good neurotransmitter, and these dopamine antagonists are used regularly to treat depressive, manic, and mixed episodes associated with bipolar disorder, schizophrenia, and nausea.
With medication specifically targeting tardive dyskinesia, the symptoms can become less severe over a span of years, and in some cases, they can be reversed. It’s important to note, however, that “for nearly everyone who has it, this is a lifelong condition,” says Richard M. Trosch, MD, an associate professor in the neurology department at Oakland University William Beaumont School of Medicine in Rochester, Michigan.
Recognizing Early Warning Signs of a Movement Disorder
Warning signs of a developing movement disorder can go undetected for quite a while, even by the person experiencing symptoms. These movements can progress over time and may become more severe if left untreated. If you notice subtle, new movements in your mouth or hands, it’s helpful to report them to your healthcare provider immediately.
In fact, it’s often the case that a person living with someone who has undiagnosed tardive dyskinesia first notices the involuntary movements, “usually around the mouth and the tongue,” says Cynthia Comella MD, a professor in the department of neurological sciences at Rush University Medical Center in Chicago, Illinois. The movements “can be pretty mild at first and worsen as time goes on.”
Why Early Diagnosis Is Often Missed
Early symptoms of this neurological condition may be incredibly subtle, appearing as occasional or infrequent movements that aren’t yet bothersome. Because of this, these signs are frequently mistaken for symptoms of stress, general anxiety, or simple fatigue.
Common early signs include:
- Grimacing or rapid eye blinking
- Teeth grinding and continual chewing motions
- Slight tremors or twitching of the fingers, hands, or feet
These symptoms are often overlooked or attributed to a side effect of other medications. However, Dr. Trosch notes that while the severity may fluctuate, the specific type of movement is usually consistent day to day.
Who Faces a Higher Chance of Developing This Movement Disorder?
Typical estimates put the number of people known to be living with tardive dyskinesia between 500,000 and 700,000 individuals in the United States. However, it’s likely these estimates are low because this condition is often underdiagnosed. Studies have shown that one reason for it being overlooked is due to the lack of awareness that all classes of antipsychotics have the potential to cause the disorder.
“We need to do a better job of recognizing what an increasingly common disorder is,” Trosch says.
Research indicates certain factors can influence your risk level:
- Medication Type Second-generation antipsychotics have been shown to lessen the risk of the disorder by 25 to 66 percent, according to an article published in CNS Spectrums.
- Duration and Dosage Those who receive higher doses of the medications over a more extended period appear to be at greater risk. Symptoms rarely develop within three months of starting a drug, according to Cleveland Clinic.
- Demographics The chance of developing the condition is higher if you are 50 years or older, female, and of African American ethnicity.
- Other Factors Smoking cigarettes, having diabetes, or living with a substance use disorder can also increase risk.
Differentiating This Neurological Condition From Parkinsonism
It’s vital to distinguish tardive dyskinesia from other movement disorders to ensure proper treatment. While this condition typically involves rapid, repetitive motions like lip smacking, Parkinsonism — which can also be drug-induced — usually presents as muscle rigidity and slowed movement.
As noted by the National Organization for Rare Disorders (NORD), other conditions can cause similar atypical movements, including:
- Huntington’s disease
- Tourette’s syndrome
- Dystonia
- Cerebral palsy
Understanding the Diagnosis and Tracking Process
Both Trosch and Comella say the only way to confirm a diagnosis is through clinical observation, typically by a psychiatrist or neurologist. Other tests — such as MRIs and CT or PET scans — may be used to rule out other disorders.
To ensure symptoms are caught early, healthcare providers use the Abnormal Involuntary Movement Scale (AIMS). This is the standard method for initial screening and regular monitoring of symptoms of tardive dyskinesia. Because the condition can develop gradually, undergoing an AIMS test during routine check-ups is essential for ongoing monitoring.
Trosch notes that the increased use of telemedicine can sometimes make a diagnosis more challenging. Video calls can make it harder for a provider to notice subtle movements in general, and it’s often impossible to see movements happening off-camera. Because catching the disorder early can minimize its impact, it’s often best to seek an in-person opinion from a professional who specializes in movement disorders.
The Importance of a Multidisciplinary Approach
Tardive dyskinesia cannot be prevented entirely because “antipsychotic medications are important and very effective drugs for many people,” says Trosch. “If someone has bipolar disorder with psychotic features, I think they should be treated [for their bipolar symptoms].”
This is why the National Alliance on Mental Illness (NAMI) recommends that people taking antipsychotic medications be closely monitored by a healthcare provider, including having a routine symptom assessment every three months.
According to an article published in StatPearls, this movement disorder is best screened and treated by a team of medical professionals. This team should include a primary clinician, who may first suspect the condition, and a pharmacist.
And since people with schizophrenia and bipolar disorder are more at risk for tardive dyskinesia, they should be monitored more closely. The pharmacist should also inform the patient about the possibility of this side effect and the alternatives, and educate the patient about wearing an alert bracelet to warn against administering drugs such as dopamine-blocking agents.
Management and FDA-Approved Treatments for Tardive Dyskinesia
For many years, there wasn’t a way to treat tardive dyskinesia, even though the diagnosis has been around since 1964. However, the landscape changed in 2017 when the U.S. Food and Drug Administration (FDA) approved two specific medications: valbenazine (Ingrezza) and deutetrabenazine (Austedo).
These medications have made symptoms much more manageable. Before these approvals, an older study found this neurological condition to be reversible in just 13 percent of cases. Trosch observes, however, that many people who would benefit from these treatments are still being missed.
If you are concerned about your symptoms, it’s important not to stop taking any antipsychotic drugs until you consult with your doctor. Serious problems can occur if you don’t taper yourself off by reducing the dose gradually while being overseen by a professional.
In the meantime, lifestyle adjustments can help:
- Exercise NAMI recommends exercising to help relieve symptoms related to balance, gait, and flexibility.
- Stress Management “There’s no question that stress aggravates tardive dyskinesia,” says Trosch. “Movements become exaggerated,” so finding ways to stay calm is a vital coping mechanism.
Resources and Support
The nonprofit National Organization for Tardive Dyskinesia (TDhelp.org) offers videos, papers, infographics, a podcast, and a blog for those to learn more about the condition.
Other places to find educational materials, guidance, and hope include:
Editorial Sources and Fact-Checking
UPDATED: Originally published on February 27, 2023
