11 Tips to Feel More in Control of Uncontrollable Movements

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.

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 disorder 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.

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.”

Knowing that, and being able to show yourself compassion, can help.

10. Consider Reducing Your Caffeine Intake

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.