Working With Your Doctor to Improve the Management of Huntington Disease

This article is for people who have Huntington disease, their care partners, or anyone who wants to learn more about it. The goal of this patient education activity is for patients and care partners to learn how to talk their doctor about medicines to deal with symptoms of Huntington disease including chorea (muscle movements that you can’t control).

You will learn about:

• What Huntington disease and chorea are, and how they work

• How chorea changes over time

• Available medicines for Huntington

• How to talk to your doctor about which medicines you can take and how they can help your symptoms

• Questions to ask your doctor

In Huntington disease, brain cells break down over time, leading to trouble controlling movement, thinking, and emotions. It is genetic, so it gets passed down through generations of your family. If you have Huntington, you may have jerky movements (chorea), trouble walking, and you may find your mood changing suddenly.

Chorea is a symptom of Huntington disease – sudden, jerky movements that can be hard to control. If you are experiencing it, it may be hard to walk, talk, or do your everyday tasks. People of all ages with Huntington disease may experience chorea, but it usually starts around age 30.

If you have Huntington disease, chorea may make your quality of life worse. It can make it hard for you to perform daily activities, like eating, getting dressed or even socializing. You may feel frustrated or embarrassed by the movements, or feel isolated or depressed. Learning how to deal with chorea and finding the medicine are both important for living a happy life.

Chorea symptoms may change. In the early stages, movements might be mild and not happen often. Over time, they can happen more often and get worse or harder to control. You may also experience other symptoms, like stiffness or slow movements. Understanding how chorea changes can help you prepare for the future and to find the right medicine for you.

If you’re struggling with Huntington symptoms like chorea, some medicines you may consider with your doctor are:

• Vesicular monoamine transporter 2 (VMAT2) inhibitors, which can help reduce jerky movements by lowering the amount of a brain chemical called dopamine

• Dopamine antagonists, which block dopamine in the brain and can help reduce unwanted movements and improve your mood

• N-methyl-D-aspartate (NMDA) antagonists, which can improve movement by lowering levels of a brain chemical called glutamate

• Benzodiazepines, which can help with anxiety and sleep problems, and may be used with another medicine. There is limited evidence about how effective they are for Huntington, so doctors use them carefully.

Medicine is not one-size-fits-all, so It’s important to talk with your doctor to find the best options for you.

There are different ways to take medicines for Huntington.

• Vesicular monoamine transporter 2 (VMAT2) inhibitors are taken as a pill by mouth (orally), once or twice a day

• Dopamine antagonists commonly come as a pill (oral) or through a needle (injectable), but there are other forms as well, and they may be taken multiple times a day

• N-methyl-D-aspartate (NMDA) antagonists for Huntington come as a pill or a liquid, and are taken once or twice a day

• Benzodiazepines commonly come as a pill (oral) or in a needle (injectable)

Remember, your voice matters while talking about your medicine, so tell your doctor what you prefer.

By reducing chorea, these medicines may help you feel more comfortable and confident in your everyday life. You may find it easier to engage in social situations, work, and hobbies. Having more control over your movements may lead to a greater sense of independence and overall happiness.

When choosing a treatment plan with your doctor, be sure to ask about the side effects of different medicines for Huntington which, depending on the medicine, may include: 

• Drowsiness

• Depression

• Anxiety

• Suicidal thoughts

• Muscle stiffness

• Restlessness 

• Fatigue

• Dry mouth

• Diarrhea

If you end up experiencing any of these side effects after starting a medicine, remember to tell your doctor as soon as possible. And remember, not all medicines have the same side effects, so be sure to ask your doctor for more details.

When talking to a doctor about chorea symptoms, it’s helpful to be clear and specific. Talk about your movements, how often they occur, and how they affect your life. It’s also important to bring up any side effects from your medicine. Feel free to openly express your needs and feelings about what’s right for you.

Here are some questions you can ask your doctor:

• What medicines can help with my symptoms?

• How do these medicines work?

• What side effects might I have from the medicines?

• How long will it take to feel better after starting a new medicine?

• What should I do if the medicine doesn’t help or makes me feel worse?

• Are there any support groups or resources for me and my family?

Congratulations!

You have successfully completed the program Working With Your Doctor to Improve the Management of Huntington Disease

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

Huntington’s Disease (NIH)

Huntington’s Disease Society of America

Diagnosis and Treatment

Patient and Family Resources