Dystonia
Basic Facts for Patients and Their Families

What Is Dystonia?

Dystonia is a condition that causes muscles to move when you don’t want them to. These movements can cause your body to twist, shake, or hold strange positions.

Dystonia can affect just one part of your body, or several. Common types include:

• Neck dystonia (also called spasmodic torticollis or Cervical Dystonia) – Your head turns, tilts, or shakes without your control.
• Eye spasms (blepharospasm) – You blink a lot or have trouble keeping your eyes open.
• Meige syndrome – Spasms in the face and eyes happen together.
• Jaw or tongue dystonia (oromandibular dystonia) – Trouble with chewing, speaking, or moving your tongue.
• Voice dystonia (spasmodic dysphonia) – Your voice sounds tight, shaky, or breathy.
• Hand or foot dystonia – This may happen only when doing certain things like writing or playing music (called task-specific dystonia).
• Generalized dystonia – Rare. It happens when many parts of the body are affected, usually starting in childhood.
   

What Is the Cause?

There are different causes:

• Sometimes, you may inherit it from your family (genetic).
• It can happen after a brain injury, infection, or reaction to medicine.
• Doing the same activity for many years (like writing or playing an instrument) can lead to dystonia in some people.
• Most people do not know the exact cause.
   

How Do Doctors Know If I Have Dystonia?

A doctor who knows about movement problems (called a neurologist) will:

• Ask you about your symptoms.
• Watch how your body moves.
• Do tests like brain scans or blood tests.
• Sometimes, a genetic test is done.

Dystonia can be hard to diagnose. Some people are told they have something else at first, or they don’t get a diagnosis right away.
 

Is There Treatment for Dystonia?

Yes. There are treatments that can help:

1. Medicines

Some people take pills that relax the muscles or calm the nerves. These include:

• Anticholinergics
• Benzodiazepines
• Baclofen

Your doctor may need to try a few different medicines to see what works best.

2. Botulinum Toxin Injections

• These are shots given into the tight muscles.
• They help the muscle relax.
• You may need this every 3 to 4 months.
• These shots must be done by a trained doctor.

3. Surgery

• If other treatments don’t work, you might be able to get deep brain stimulation (DBS).
• This uses a small device placed in your body that helps control muscle movement.
   

What Should I Expect Over Time?

• Dystonia often starts slowly and gets worse over months or years.
• In some people, it stays in one body part. In others, it may spread.
• It does not usually get worse forever.
• How it affects you depends on the type of dystonia and your body.
   

Living with Dystonia

• Dystonia can make daily life harder, but many people find treatments that help.
• You may need to see a specialist and try different treatments over time.
• Support groups, physical therapy, and talking to others with dystonia can help you feel better and more confident.

If you think you may have dystonia, or your treatment is not working well, talk to a doctor who knows about movement disorders.

 

 

Copyright © 2018 International Parkinson and Movement Disorder Society (MDS).  All rights reserved.