What is hemifacial spasm?

Hemifacial spasm is a movement disorder which causes the muscles on one side of the face to contract. In its mildest form, hemifacial spasm may cause no more than a slight inconvenience, although it may still be disfiguring and socially embarrassing. In more severe cases, it may interfere with vision. However, since the other eye is usually unaffected, it rarely causes loss of sight.

Who is affected by hemifacial spasm?

Hemifacial spasm affects both men and women and usually develops in middle age. It is thought to affect more than 4,000 people in the UK.

What are the symptoms of hemifacial spasm?

Hemifacial spasm usually develops gradually. Initially, the muscles surrounding the eye may be affected by muscle spasms. The spasms may then spread to other muscles on the same side of the face, particularly the muscles of the jaw and mouth. Some patients experience a clicking sound in the ear on the affected side each time there is a muscle spasm. Hemifacial spasm tends to affect the left side of the face more often than the right.

Hemifacial spasm is usually less variable than many focal dystonias, although some sufferers do find that their condition worsens when they are under stress and improves when they lie down.

What causes hemifacial spasm?

The causes of hemifacial spasm are not yet fully understood, but current medical opinion suggests that the condition may be mechanical and caused by irritation of the facial nerve.

What should I do if I think I have hemifacial spasm?

If you think you are suffering from hemifacial spasm, you should visit your doctor. It is likely that you will need to be referred to a neurologist specialising in movement disorders for further investigation and treatment.

Is there a cure for hemifacial spasm?

Surgery can be curative, although it is not suitable for many patients. In addition, a range of other treatment options are available which can help to keep your symptoms under control.

When is surgery used?

A number of specialised surgical procedures are available for the treatment of hemifacial spasm. These are often effective, but may be associated with potentially serious side effects. They are generally reserved for patients with severe and disabling hemifacial spasm, for those who do not respond to treatment with botulinum toxin, or for younger patients who opt for them.

What other treatments are available?

The other main treatment options that you are likely to be offered are drug treatments, such as injections of botulinum toxin.

What is botulinum toxin?

In recent years, the introduction of botulinum toxin injections has improved the outlook for many hemifacial spasm patients. Tiny doses of this substance are injected into the facial muscles. The treatment works by blocking the nerve's signal to the muscles responsible for the contractions. The effect of the injections usually lasts for two to three months and so a programme of repeat treatments will be necessary.

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

What other drug treatments are available?

Some patients may benefit from treatment with drugs such as carbamazepine and clonazepam. However, to be effective, drugs may need to be taken on a long-term basis.

Is there anything I can do to control the condition?

Self-help measures such as relaxation techniques appear to help some people, whereas homoeopathy , acupuncture and dietary management appear to offer little benefit for hemifacial spasm sufferers.

A positive attitude is important. Learning about hemifacial spasm and talking to other sufferers may help you to come to terms with your condition and enable you to find ways of coping with your symptoms. Although hemifacial spasm is not strictly classified as a dystonia, the two conditions have much in common and the Dystonia Society is a good source of support and information.

Support from family and friends is also important. They may also benefit from learning more about hemifacial spasm so that they can better understand your condition.

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