If you have tardive dyskinesia, a side effect associated with the use of antipsychotic medications — as well as medications used to treat Parkinson’s disease, anxiety, nausea, or other conditions — you may experience involuntary movements of your mouth and other parts of your face and body.
This disorder can be frustrating, but there is hope. Not only is it possible for the symptoms of tardive dyskinesia to improve with treatment, but there are also several steps you can take to help yourself feel better in the meantime. Many of the best strategies work by reducing stress, a key aggravator of tardive dyskinesia.
“Any movement disorder, including tardive dyskinesia, gets worse under stress,” says Burton Scott, MD, PhD, a neurologist and movement disorder specialist at Duke Health in Durham, North Carolina.
This could be due to an increased release of the brain chemical norepinephrine by your sympathetic nervous system — which triggers the fight-or-flight response, says Dr. Scott. The following strategies can help you reduce stress and maximize your ability to control your movements.
1. Work With Your Doctor to Adjust Your Meds
“Tardive dyskinesia can get better,” says Scott. “The natural history is that if the patient is able to stop the drug that’s causing it and wait long enough, it can get better.”
But you should not abruptly stop taking an antipsychotic, as that can cause serious problems, he says. Work with your doctor on a plan to wean yourself off it or try another medication.
2. Consider Adding a Drug to Reduce Movements
Talk to your doctor about taking a type of medication called a vesicular monoamine transporter 2 (VMAT2) inhibitor. The two that have been approved by the U.S. Food & Drug Administration for the treatment of tardive dyskinesia are deutetrabenazine (Austedo) and valbenazine (Ingrezza).
“These medications can help suppress the abnormal movements and make them more tolerable, so that patients can get back to their normal,” says Scott.
3. Practice Stress-Reduction Techniques
Meditation is a proven stress reliever, possibly because it turns down the sympathetic nervous system’s response to stressful situations and activates the parasympathetic nervous system, which is known as the “rest and digest” branch.
Another option is to sign up for a class in mindfulness-based stress reduction, which is offered in person or online by many local healthcare networks, schools, and other organizations.
You may also find relief in your beliefs. “For some people, spiritual activities or reconnecting with their religion is a good thing,” says Scott.
4. Exercise Regularly
Get moving, and you will feel better — both physically and mentally. “Schedule daily walks in a pleasant place,” says Scott.
Walking in a natural setting, rather than an urban one, may have added benefits. One research review found evidence showing the many positive effects that being outside in nature can have on your mental, emotional, and physical health.
Swimming is another good source of aerobic exercise. Or if you enjoy sports such as tennis or basketball, look for opportunities to play regularly. It doesn’t really matter which physical activity you choose — if you enjoy it and it gets you to move your body, it can be beneficial.
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Tardive Dyskinesia: How to Feel in Control of Uncontrollable Movements
Tardive dyskinesia, which causes involuntary movements, is a possible side effect of taking antipsychotics long term. Here are some tips to feel more in control.
5. Don’t Assume Other People Notice Your Movements
When you feel embarrassed about involuntary movements, you might be overestimating how much other people notice them. “The rest of the world may not be as focused on the movement as the person thinks,” says Scott.
Think about how often you’re too focused on your own thoughts to notice what others are doing, and use that knowledge to remind yourself that people probably aren’t scrutinizing you as much as you think they are.
6. Empower Yourself With Information
People sometimes feel better when they learn all they can about their condition, says Scott.
Consult reliable sources, such as the National Organization for Tardive Dyskinesia. And talk to your healthcare provider about ongoing research, which can help you learn more about this condition and possible treatments.
7. Join a Support Group
You can help yourself and others at the same time by leaning on each other for support.
“If there’s a mental health support group or psychoeducation group somewhere that you have access to, that may be the most helpful thing,” says Karen E. Anderson, MD, a neuropsychiatrist and professor of psychiatry and neurology at Georgetown University School of Medicine in Washington, DC.
“Often, your psychiatrist, psychologist, or social worker will be able to point you to local support groups or an online support group where you can learn more,” says Dr. Anderson. The National Organization for Tardive Dyskinesia also lists virtual support groups on its website.
8. Prioritize Good Sleep Hygiene
Good sleep is crucial for your body to function properly and manage stress and anxiety, which makes it important for managing tardive dyskinesia. One way you can try to get the rest you need is by practicing healthy bedtime habits.
“The best place to start is to get rid of screens in the evening,” says Anderson. “Phone screens, tablets, computers — the blue light from those can cause a lot of people to stay up much later than they should.”
Blue light can suppress production of the sleep hormone melatonin, so give yourself a deadline at night and don’t look at any screens after that time. As much as possible, try to stick to a schedule of going to bed at about the same time each night and getting up at around the same time each morning.
9. Give Yourself a Break When You’re Nervous
“I always try to remind patients: If you’re in a stressful situation, like if you have to go to a family event or a big church or community event, your movements may get a little worse,” says Anderson.
“That doesn’t mean you’re suddenly worse or that you’re relapsing. It just means that when you’re stressed, your movements are going to come out a little more.”
Caffeinated beverages can make involuntary movements worse for some people, says Anderson.
That doesn’t necessarily mean you have to give up your morning cup of coffee, but she suggests trying an experiment: Have one less caffeinated beverage per day, and cut out caffeine entirely after 5 p.m. If you notice an improvement in your movements, you might be sensitive to the effects of caffeine, and consuming less might help you feel a bit better.
11. Ask a Friend or Family Member How Much You Move
Sometimes, people with tardive dyskinesia aren’t sure how much they’re moving. So, if you feel comfortable doing so, ask someone you trust for feedback on your motions.
Anderson suggests saying something like, “My doctor has told me that involuntary movements, particularly in my face, but sometimes in my fingers and toes and the rest of my body, can be a side effect of my medication. Do you notice that I’m doing this? Does it look like I’m fidgeting or chewing gum when I’m not, or moving around a lot?”
These kinds of conversations can help you assess your situation more objectively.
The Takeaway
Tardive dyskinesia can occur as a side effect of use of certain medications, and can cause involuntary movements throughout the body.
These involuntary movements can trigger feelings of embarrassment and self-consciousness.
Certain strategies can help you feel more in control of tardive dyskinesia, such as managing stress, exercising, seeking support, and considering medications that may help reduce symptoms.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Jason Chua, MD, PhD, is an assistant professor in the Department of Neurology and Division of Movement Disorders at Johns Hopkins School of Medicine. He received his training at the University of Michigan, where he obtained medical and graduate degrees, then completed a residency in neurology and a combined clinical/research fellowship in movement disorders and neurodegeneration.
Dr. Chua’s primary research interests are in neurodegenerative disease, with a special focus on the cellular housekeeping pathway of autophagy and its impact on disease development in diseases such as Parkinson disease. His work has been supported by multiple research training and career development grants from the National Institute of Neurological Disorders and Stroke and the American Academy of Neurology. He is the primary or coauthor of 14 peer-reviewed scientific publications and two peer-reviewed online learning modules from the American Academy of Neurology. He is also a contributing author to The Little Black Book of Neurology by Osama Zaldat, MD and Alan Lerner, MD, and has peer reviewed for the scientific journals Autophagy, eLife, and Neurobiology of Disease.
Julie Stewart is an author and editor with more than a decade of experience in health, science, and lifestyle writing. Her articles have appeared online for Men’s Health, Women’s Health, EatingWell, Vice, AARP The Magazine, and Shape.
