Experiencing Unintentional Movements With Your Mental Health Medications? Hear From a Patient on How to Get Relief   

This article is for people who have symptoms of tardive dyskinesia (TD), their care partners, or anyone who wants to learn more about TD. The goals of this activity are for you to be better able to notice the signs and symptoms of TD, to increase your awareness of treatments for TD, and to encourage you to talk with your doctor about TD.

You will learn about:

• Risk factors for TD

• Signs and symptoms of TD

• The impact of TD on your life

• Treatments for managing TD

• Speaking with your doctor about TD

Tardive dyskinesia, or TD, is a movement disorder that affects nearly 500,000 people in the United States. It causes you to have involuntary (uncontrolled) movements of your face and body.

TD is most often caused by certain mental health medications, including antipsychotic medicines. Rarely, other medicines, like those for seizures, Parkinson disease, and other conditions can cause TD, too.  

At the end of this activity, we’ve provided links to more resources. These resources have lists of the medicines that can cause TD.

It can be hard to tell who might get TD, but there are some things that can make it more likely for you to get TD, such as:

• Being 40 years old or older

• Being postmenopausal

• Being a woman (anyone assigned female at birth)

• Being of African ethnicity

• Using a medicine for a long time that can cause TD

• Having diabetes

• Smoking

• Using alcohol and substances

If you have any of these risk factors, it’s important to talk with your doctor about your chances of getting TD. Ask your doctor what they recommend for you.

In the meantime, make sure to keep taking all your medicines as your doctor has prescribed.

TD is when you have uncontrolled movements of face and body. Signs and symptoms include:

• Lip smacking

• Blinking rapidly (very fast)

• Frowning or grimacing (a facial expression of pain or disapproval)

• Swaying (moving your body back and forth) from side to side

• Being restless (not being able to stay still)

• Moving your fingers as if you’re playing a piano

• And there are other symptoms

Sometimes with the early symptoms of TD, you may not even know that you are having symptoms. It may be someone in your life who first notices them and tells you.

Having movements like these can make it hard for you to do things physically. They can also affect how you feel mentally and emotionally. You might feel scared or nervous to be around other people, both socially and at work.

If you or someone who knows you starts to see any symptoms, it’s very important to talk to your doctor right away. There are ways to help you feel better and get relief from the symptoms.

There are treatments that can help with the symptoms of TD. If your doctor finds out you have TD early, it might be possible to reverse it. However, sometimes the uncontrolled movements can last a long time or be permanent. If you notice any symptoms, talk with your doctor right away.

Your doctor may slowly stop one of your medicines or switch you to a different one. There are also special medicines that can help with the symptoms of TD.

It’s important to keep taking all your medicines as your doctor has prescribed. Tell your doctor if any medicine for TD is not helping you or is causing you other problems.

There are ways to get help with TD including medicines. If you have TD, it’s important to keep track of your symptoms. This way, you can share them with your doctor.

Tell your doctor:

• All symptoms you have

• How often you have the symptoms

• How the symptoms are affecting your life

Self-care and exercise (physical activity) can also help. Check out this short video to hear about one person's experience with TD.

If you are taking medicines that might cause TD, talk to your doctor about it. They may change your medicine, lower the dose, or adjust how long you take it. If you have TD symptoms, they may also prescribe you a new medicine that could help treat the TD.

It’s important for your doctor to check you regularly, about every 3 months, for any changes in your movements or other issues.

Here are some questions to help you talk with your doctor about TD.

• Am I at risk for tardive dyskinesia (TD)?

• Is there a medicine I’m taking that could cause TD?

• Do my symptoms seem like TD?

• Are there any tests I should have?

• Are there medicines or other treatments that can help me?

• What are all my treatment options, and what are the risks and benefits of each one?

Congratulations!

You have successfully completed the program Experiencing Unintentional Movements With Your Mental Health Medications? Hear From a Patient on How to Get Relief

View Additional Materials on this topic that you may find useful:

Tardive Dyskinesia - Symptoms, Risk Factors, and Management (NAMI)

All About Tardive Dyskinesia

National Organization for Tardive Dyskinesia