The Dystonia Society

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Eye Dystonia (Blepharospasm)

blepharospasm 1

Click leaflet on left for more information.

Eye dystonia (the medical term is Blepharospasm) is uncontrollable and often painful muscle contractions around the eye. Symptoms of eye dystonia may include excessive blinking and involuntary closure of the eyelids. The cause is believed to be incorrect messages from the brain to the muscles around the eye. Eye dystonia is a neurological movement disorder and should be diagnosed and treated by an ophthalmologist or a neurologist specialising in movement disorders.

Blepharospasm usually starts gradually. First symptoms may include eye irritation, sensitivity to light and increased blinking. The frequency and severity of the muscle spasms generally increases over a period of one to two years. Sometimes eye dystonia is experienced together with mouth, jaw or tongue dystonia (oromandibular). The medical term for this is Meige’s syndrome.

Symptoms usually appear between the ages of 50 and 70 but it does sometimes affect younger people. It affects around 7,000 adults in the UK.

Treatment usually involves regular injections, using a tiny needle, administered either by neurology or ophthalmology professionals and/or oral medication can also be prescribed. Some people find relief by applying light pressure to particular points on their face; symptoms can also be reduced by wearing dark glasses or wearing a hat with a peak. It is very much an individual experience.

Unfortunately there is not currently a cure. However, in the vast majority of cases, dystonia does not shorten a person's life span. Most people do manage to develop successful strategies for living with dystonia combining treatment with pain control and sensory tricks.

Coping Tips *

Ideas for coping include the following. Note: we have no clinical evidence that these coping tips will work universally, so it is up to each person to see what works for them.

  • Press fingers against the temples, end of the nose, or other parts of your face – need to find the spot that suits you.
  • Use a tight baseball cap, hair band or sweat band around the forehead.
  • Put your head back – close your eyes, or look down.
  • Go in a dark place and try to relax.
  • Gum chewing, whistling, humming, talking, sucking on a straw or singing sometimes keep the eyes open in order to do activities.
  • Reading aloud.
  • Looking down (some people find gardening or cooking helpful because they involve looking down).

Can’t cope with bright light?

  • Block it out
  • Baseball cap, golf visor, sunglasses (especially the ones with thick sides which also cut out the wind)

Managing dystonia

Coping with dystonia can be done most successfully if the person affected by dystonia (and, where appropriate, their carers) actively manages the condition. Everyone is different and so what this means in practice will vary from person to person. To manage dystonia effectively, people affected by dystonia need information about all aspects of the condition. This can enable them to take control and become the actor of their condition. Click here to read more about managing dystonia.

Dystonia and mental health

Mental health is a sensitive topic for many people with dystonia as many cases of dystonia are initially mistaken for a mental health (or psychological) condition. In the vast majority of cases, dystonia is a neurological illness and does not have a mental health cause.

However, it is also increasingly understood, that although mental health conditions do not normally cause dystonia, there can be an important relationship in some cases between dystonia and mental health conditions such as stress, depression and anxiety.

This relationship can be two way - the symptoms of dystonia can cause anxiety or depression but also anxiety and stress can make the physical symptoms of dystonia worse. If you are affected by a mental health problem, it is important to get treatment. Click here to read more about dystonia and mental health.

Newsletter supplements

Click to open the  newsletter supplement 1 and newsletter supplement 2 on eye dystonia. For more information, you can call our helpline on 0845 458 6322.

Video and personal stories about eye dystonia

Please note: Every case of dystonia is individual and there are many different types of dystonia. The video and stories below are therefore only personal expereinces and should not be considered representative of dystonia in general or of any other case of dystonia.

In the video below, Jane talks about her experience of coping with eye dystonia:

Blepharospasm (eye dystonia) from Dystonia Society on Vimeo.

 To read case studies of individuals with eye dystonia that have been featured in Dystoniamatters! click on the links below:

Howard Jenson

Marianne Lownsborough

Christina Smith

Clare Tredgold

 

* The section on "Coping tips" is from the US patient advocacy group, the Benign Essential Blepharospasm Research Foundation (BEBRF).

Last reviewed October 2011

Disclaimer

The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.

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