Questions to ask your doctor about tardive dyskinesia

If you or a loved one has been diagnosed with tardive dyskinesia (TD), you may be feeling overwhelmed, and you probably have a lot of questions. Since the condition is different for every person, your healthcare providers will be your best source of information during this journey. Maintaining an open and honest relationship with your providers will be key.

Below is a list of questions you can ask at your upcoming appointment to help you better understand the next steps in treatment and management.

What are my treatment options for TD?

Your healthcare provider will take into account numerous factors when determining the best approach to treatment. These include:

• The medication that’s causing TD
• The condition for which you're taking the medication
• How long you’ve been taking it and at what dosage
• Your symptoms and severity
• Other medications you’re taking
• Medications you’ve taken in the past
• Your overall health

Treatment may involve discontinuing the medication that’s causing TD, lowering the dose, or switching to another medication. All of these things must be done with caution and always under the guidance of your healthcare provider. You and your healthcare provider will look at your entire health picture to figure out what makes the most sense for you.

Will these symptoms become permanent?

Tardive dyskinesia is a different experience for everyone. In some cases, the symptoms of TD can be permanent or take a long time to improve. It’s important to focus on your own specific circumstance, be patient, and work with healthcare providers whom you trust.

How will this affect my treatment for other conditions?

TD is a side effect of taking medications called neuroleptics, which are commonly prescribed for schizophrenia. Other drugs that can cause it include some antidepressants, anti-seizure medicines, and drugs for treating Parkinson’s disease. Treating TD often involves making adjustments to the medications you are taking. You will collaborate with your healthcare provider to make these adjustments in the safest way possible.

What specialists do I need to work with?

Your healthcare provider will be able to recommend specialists that can help you with managing TD—such as a neurologist, ophthalmologist, or movement disorder specialist. It’s also important to continue seeing specialists for other health conditions you are managing, including mental health practitioners.

What kind of changes in symptoms should I look for?

TD symptoms can change over time. They may worsen, new symptoms can appear, and with treatment, symptoms can improve. Your healthcare provider can explain what changes to look for and how to document these changes.

When should I call a doctor?

Part of managing TD involves regular appointments with your healthcare provider. But there may be circumstances between appointments where you should reach out to your healthcare provider—for example, if you experience a fall, have worsening symptoms, or have trouble swallowing.

What can I do to manage symptoms?

TD symptoms vary from person to person, and your healthcare provider will help you come up with a plan to manage your specific symptoms. They can also guide you through ways to keep yourself healthy, such as staying active, getting enough sleep, focusing on nutrition, and avoiding unhealthy habits (such as smoking, drinking alcohol, and using recreational drugs).

Remember that your healthcare providers are your partners in this. Keep all your appointments. Be honest and open when answering questions. Bring up any concerns and questions you have, and discuss the specific ways that TD impacts your life. This information will help your healthcare providers give you the best care possible.