What is dystonia?

Dystonia is a movement disorder that makes it hard for you to control your muscles.

Dystonia can happen in anyone at any age. It can be limited to a certain area of the body, or it can be more widespread.

There are different types of dystonia:

• Focal dystonia affects your eyes — it is the most common type of dystonia.
• Generalised dystonia affects your torso and at least 2 other parts of your body.

Dystonia in adults is usually focal, while dystonia in children is usually generalised.

What are the symptoms of dystonia?

The symptoms of dystonia depend on which part of your body is affected.

Dystonia can cause parts of your body to:

• spasm
• tremor
• twist
• form odd positions

This can cause pain and distress. Involuntary (uncontrolled) muscle movements can make it hard to complete everyday tasks.

Dystonia muscle movements can also happen while you're asleep. The movements can be triggered by certain positions or feelings, such as excitement.

What causes dystonia?

It's not clear why some people get dystonia. Dystonia can exist on its own, or in combination with another disorder.

In some people, dystonia is thought to involve the basal ganglia. The basal ganglia are a part of the brain involved in controlling the movement of our muscles.

Different things can damage the basal ganglia or affect how they work, such as:

• a chemical imbalance in the brain
• a brain injury
• illness
• genetics

Dystonia can also be caused by:

• certain medicines, toxins or other substances
• trauma
• other environmental factors

Generalised dystonia may be caused by conditions such as:

• Wilson disease
• mitochondrial conditions
• Hallervordern-Spatz disease
• Niemann-Pick disease type C
• neuroacanthocytosis

When should I see my doctor?

If you or your child get involuntary muscle movements that are painful or that impact your everyday life, visit your doctor.

How is dystonia diagnosed?

To diagnose dystonia, your doctor will:

• ask about your symptoms
• perform a physical examination
• ask about your medical history

There is no specific test to diagnose dystonia. Your doctor may order blood tests or imaging scans.

They may refer you to other health professionals, such as a specialist neurologist.

How is dystonia treated?

There is no cure for dystonia. But, depending on the type of dystonia and how severe it is, it may be treated with:

• medicines
• injections of botulinum toxin type A, for example Botox injections
• surgery

Sometimes, certain positions or aids like splints can help with dystonia.

Living with dystonia

It can be challenging to accept dystonia. Learning about the condition can help you come to terms with your diagnosis.

If you are living with dystonia, you can learn positive ways to cope with your condition and how it makes you feel.

Allow yourself to recognise things that are difficult or that you can no longer do. This can help you move forward.

Your doctor or healthcare team can give you advice.

What are the complications of dystonia?

Dystonia can impact your everyday life. It can affect you:

• physically
• emotionally
• socially

Dystonia can feel very isolating and may cause depression or anxiety. You may find yourself struggling with your body image and self-esteem.

If you need to talk to someone about your mental health, talk to your doctor or call Beyond Blue on 1300 22 4636.

For advice and to get connected to local mental health services, you can call Medicare Mental Health on 1800 595 212. Check the operating times.

Can dystonia be prevented?

The cause of dystonia is often not fully understood. While dystonia can't be prevented, there are ways you can manage it.

If your dystonia is triggered by certain things, try to avoid them.

Resources and support

To learn more about dystonia, you can visit the Brain Foundation website.

Dystonia Network of Australia Inc. is the peak organisation for dystonia in Australia.

You can call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.