Tardive Dyskinesia: 11 Tips to Feel More in Control of Uncontrollable Movements

“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.”

2. Consider Adding a Drug to Reduce Movements

“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

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.

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.

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

“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.”

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.”

10. Consider Reducing Your Caffeine Intake

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.