Experiences with

Dystonia

Check if you have dystonia

Dystonia can affect your whole body or just 1 part. It can start at any age.

Symptoms of dystonia include:

• uncontrolled muscle cramps and spasms
• parts of your body twisting into unusual positions – such as your neck being twisted to the side or your feet turning inwards
• shaking (tremors)
• uncontrolled blinking

The symptoms may be continuous or come and go. They may be triggered by things like stress or certain activities.

• you think you might have dystonia

Dystonia is uncommon, but it's best to get the symptoms checked out.

How dystonia is diagnosed

If your GP thinks you could have dystonia, they'll refer you to a specialist called a neurologist for tests.

To diagnose dystonia, a neurologist may:

• ask about your symptoms
• ask about any other conditions you have and any medicines you're taking
• ask if anyone else in your family has dystonia (sometimes it can be inherited)
• carry out some blood and urine tests
• arrange a brain scan to look for any problems

If you're diagnosed with dystonia, your neurologist can tell you which type you have and what your treatment options are.

Types of dystonia

There are several different types of dystonia, which affect different areas of the body.

Treatments for dystonia

Treatment can help relieve the symptoms of dystonia. The best option for you depends on the type of dystonia you have.

The main treatments for dystonia are:

• injections of a medicine called botulinum toxin directly into the affected muscles – these need to be repeated about every 3 months
• medicine to relax the muscles in a larger part of your body – given as tablets or injections into a vein
• a type of surgery called deep brain stimulation

Physiotherapy and occupational therapy may also help.

Surgery for dystonia

Deep brain stimulation is the main type of surgery for dystonia. It may be offered on the NHS if other treatments do not help.

It involves inserting a small device, similar to a pacemaker, under the skin of your chest or tummy.

The device sends electrical signals along wires placed in the part of the brain that controls movement.

Living with dystonia

Dystonia affects people in different ways. The severity of symptoms can vary from one day to another.

It can have a big effect on your life and make daily activities painful and difficult.

It's usually a lifelong condition. It may get worse for a few years but then remain steady. Occasionally, it can improve over time.

Causes of dystonia

Dystonia is caused by a problem with the part of the brain that controls movement.

Often it's not known why this happens.

Sometimes it can be due to:

• an inherited genetic problem
• a side effect of certain medicines, such as antipsychotic medicines and anti-sickness medicines
• Parkinson's disease
• a stroke
• cerebral palsy
• multiple sclerosis

Symptoms of dystonia include muscle cramps and spasms, and parts of your body twisting or shaking. Symptoms may be triggered by certain activities.

To diagnose dystonia, a specialist will ask about your symptoms and may do tests such as blood and urine tests or a brain scan.

Types of dystonia include generalised dystonia which affects most of the body, and myoclonus dystonia which affects the arms, neck and torso.

Treatments for dystonia include injections of botulinum toxin, medicines to relax the muscles or a type of surgery called deep brain stimulation.

Dystonia is caused by a problem with the brain. It can be inherited or caused by some other conditions or taking certain medicines.

Related links

Dystonia

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