What is dystonia?

Dystonia is a neurological movement disorder. It causes involuntary muscle contractions which lead the affected parts of the body to develop abnormal movements or postures, with or without tremor. Dystonia can affect just one part of the body or several different areas. However, when it develops in adults it usually confines itself to one part of the body and is known as a 'focal' dystonia. There are estimated to be 70,000 people living with dystonia in the UK.

What is Cervical dystonia?

Cervical dystonia, sometimes known as spasmodic torticollis, is a focal dystonia of the neck and typically occurs in people over the age of 40. By causing neck muscles to contract involuntarily, it produces abnormal movements and postures of the neck and head.

The movements can lead to the head and neck twisting (torticollis) or being pulled forwards (antecollis), backwards (retrocollis), or sideways (laterocollis).

Symptoms may vary from mild to severe and the muscular spasms may result in pain and discomfort. Sometimes, the condition may be partially relieved by touching the chin, other parts of the face, or the back of the head.

Though cervical dystonia may progress, it is not life-threatening and does not affect other brain functions. Cervical dystonia is unlikely to become generalised, although occasionally another part of the body may be affected. The condition varies from one individual to another. In some cases it may progress for about five years and then get no worse. In other cases it hardly progresses at all.

Occasionally, it may go into remission as symptoms disappear, but may return at a later date. Because every case of cervical dystonia is different from every other, it is difficult to predict accurately how it may change in the future.

What causes cervical dystonia?

Cervical dystonia is believed to be the result of abnormal functioning of the basal ganglia, an area deep within the brain that is involved in the control of movement. Much research is currently being undertaken and progress made towards a better understanding of this abnormality.

How is the condition treated?

To date, no cure has been found. Many drugs have been tried in the treatment of cervical dystonia, but while some of these may provide benefit for some individuals, none is universally effective. These drugs may also produce side effects in some people.

Botulinum toxin injections, which weaken the muscles affected by spasm, are one of the most effective treatments. Injections need to be repeated every three months or so. In cases where little improvement results from the injections, it may be because they have not been accurately targeted, or the dose needs adjusting, or a different type of botulinum toxin is required. Sometimes electromyography (EMG) or Ultrasound (USS) is used to identify the appropriate muscles to inject.

For further information on botulinum toxin and possible side effects, see Botulinum toxin injections - your questions answered.

How do I live with cervical dystonia?

Cervical dystonia can be a challenging condition to live with. Engaging socially or carrying out certain activities, such as driving or walking can sometimes become more difficult. Sensory tricks (e.g. touching a part of the head with a finger), relaxation techniques, and pacing your self where possible may be among a number of coping strategies you may wish to pursue.

Learning about cervical dystonia and talking to others who have the condition may help you come to terms with it and find the best way to manage your condition. A brief explanation of cervical dystonia to others may not only help them to understand your condition, but also, in turn, help you to cope with it.

What can the Dystonia Society offer?

The Dystonia Society is dedicated to providing information and support to everyone affected by dystonia in the UK and to raising awareness of the condition and the needs of everyone affected. The Society is committed to ensuring that everyone with dystonia has access to the treatments they need.

The Dystonia Society has a Helpline (tel: 0845 458 6322) that is open Mondays - Fridays between 10am - 4pm and offers an opportunity to discuss concerns in confidence, and to obtain information on dystonia and its various treatments, including ways of making living with dystonia easier.

Local support is provided via the Dystonia Society's regional support groups run by the Society's team of volunteers.

The Dystonia Society encourages and supports research into potential treatments and practical ways of coping with the condition.

You may want to join the Dystonia Society - become a member and receive their quarterly newsletter. Call: 0845 458 6211.

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Helpline: 0845 458 6322