Tardive Dyskinesia: Resources for Support

Tardive dyskinesia is a disorder that causes repeated and uncontrollable movements of the face, neck, arms, legs, and trunk. It is a side effect of taking some neuroleptic or antipsychotic medications to treat schizophrenia, bipolar disorder, and other mental health conditions.

These medications work by changing the activity of dopamine, a brain chemical involved in muscle movement. In some people, these changes can lead to tardive dyskinesia. The uncontrollable movements do not usually begin until after someone has taken a neuroleptic medication for many months or even years.

Tardive dyskinesia causes symptoms such as:

  • eye blink
  • lip smacking
  • frowning
  • twist the neck
  • jerky movements of the arms and legs

Tardive dyskinesia causes more than just the physical effects above. The disorder can also have emotional effects.

Living with a movement disorder can be a lonely experience. Sudden blinking, grimacing, or unintentional body shaking can lead to unwanted attention or embarrassment in public. Some people isolate themselves socially for fear of being judged by others.

But there are some things you can do that can help reduce the effects these movements have on your life. You and your health care team may want to consider:

  • adjust the dose of the drug that causes tardive dyskinesia
  • switching to a new neuroleptic drug
  • treat tardive dyskinesia itself

As you work with your health care team to manage the tardive dyskinesiaIt is also important to find emotional support. Here are some places to look for help.

One place to start is to ask your healthcare professionals for advice on managing the physical and emotional effects of tardive dyskinesia. Your medical team office(s) may also have a social worker on staff who can direct you to resources in your community.

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It’s not always easy to talk about your health, even with people who know you well. But tardive dyskinesia movements can be hard to hide.

Sharing that you have tardive dyskinesia can actually bring a sense of relief. And it’s important that the people around you know what’s going on so they can help you. Your friends and family can help with the things that tardive dyskinesia makes it hard for you to do, like grocery shopping or cooking.

Choose the people you trust the most to talk about your condition. Because you can’t always see movements as they happen, your friends and family can be your eyes. Ask them to keep an eye out for any new moves and tell you about them.

Your support network will be more helpful to you once they understand tardive dyskinesia. Explain what causes uncontrollable movements, how they affect your life, and what you do to treat them.

groups like the National Organization for Tardive Dyskinesia and the National Alliance on Mental Illness They are also good sources of information. Bringing a friend or family member with you to medical appointments gives them another chance to learn about tardive dyskinesia.

A tardive dyskinesia support group is a place where people with the condition come together to talk about their experiences and learn from each other. This is a safe space where you can feel comfortable talking about your symptoms without anyone judging you. Connecting with others who understand what you are going through can be a valuable source of support.

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Your tardive dyskinesia health care team may know of in-person support groups in your area. Sometimes these groups are held in hospitals or community centers. There are also tardive dyskinesia support groups online, as well as message boards and social media pages.

If you don’t get all the support you need from friends and family, contact a psychologist, counselor, or social worker. Some mental health professionals specialize in working with people who have chronic illnesses. Talking to a professional about how tardive dyskinesia affects your life may help you feel better.

Tardive dyskinesia is a side effect of medications used to treat schizophrenia, bipolar disorder, and other mental health conditions. It causes uncontrolled movements of the face and body. It can have negative effects not only on your physical health, but also on your mental health.

Ask for support when you need it. You can get help from friends, family, your medical team, or a mental health professional. An online or in-person support group is another way to connect with others for advice.

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