What is dystonia?

Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK. There are a large number of different types of dystonia which affect people in widely differing ways. Unfortunately there is not yet a cure.

Click here to download a copy of our leaflet Dystonia Explained.

For information on dystonia in Welsh click here.

For information on dystonia in Punjabi click here.

Symptoms of dystonia

Dystonia is a neurological movement disorder. Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures. Sometimes the symptoms are accompanied by dystonic tremor.

Click here to learn more about the symptoms of dystonia.

Causes of dystonia

The cause of dystonia in most cases is not known although a minority of cases have an identifiable cause. Dystonia is thought to originate in part of the brain called the basal ganglia.

Click here to learn more about the causes of dystonia.

Types of dystonia

There are many different types of dystonia. Dystonia which starts in adult life usually remains focal to one part of the body. If dystonia starts in childhood, it tends to spread across multiple parts of the body.

Focal dystonias

These dystonias are limited to specific parts of the body. Symptoms generally appear between the ages of 30 and 50 (except eye dystonia where they usually start between ages 50 and 70) although sometimes symptoms can appear earlier or later. Generally, focal dystonias starting in adulthood affect only one part of the body. If they spread at all, which is unlikely, it is usually only to one other area (if this happens it is called a segmental or multifocal dystonia). The progress of focal dystonia is unpredictable with symptoms varying from day to day. Typically, a focal dystonia will progress gradually over a five-year period and then progress no further.

Dystonias affecting multiple parts of the body

There are a number of different types of dystonia that affect more than one part of the body. These usually start in childhood or early adulthood.

Acquired dystonias

Acquired dystonias (which used to be known as secondary dystonias) are dystonias caused by damage or degeneration of the brain or abnormal response to certain medications. There are more than 50 causes of acquired dystonia.

Functional dystonia

Functional dystonia is a condition where some specific symptoms of dystonia appear but tests that normally establish the cause of these symptoms are negative.

Click here to read more about the different types of dystonia.

Treatment of dystonia

Treatments are available and most people do manage to develop successful strategies for living with dystonia combining treatment with pain control and sensory tricks to help with social situations. Remission from symptoms does sometimes occur but is rare – occurring in around 5-10% of cases.

Click here to learn more about treatments.

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 pain

Some people with dystonia report experiencing pain while others report none. Pain is most commonly experienced by those with neck dystonia and/or generalised dystonia although some people with other types also report experiencing pain. To read more about managing pain click here.

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 inter-relationship in some cases between dystonia and mental health conditions such as stress, depression and anxiety. This relationship can be two way. Click here to read more about dystonia and mental health.

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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Kent DS Group meeting 21 March 2020

Local support group meeting. Annual meeting. Details TBC.
Kent DS Group meeting 18 January 2020

Local support group meeting. Details TBC.
Kent DS Group meeting 30 November 2019

Christmas lunch. Details TBC.
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Local support group meeting. Details TBC.

Blinking and eye problems

Most abnormal blinking or twitching of the eye clears up quickly - within a few hours of when the symptoms appear. If the symptoms do not go away one possible cause is eye dystonia.
More detail on tremor

Many people with dystonia experience head shake especially if the dystonia is affecting their neck. People often ask us about the difference between head shaking caused by essential tremor and that caused by dystonia. In this article Dr Marie-Helene Marion explains what the differences are and how neurologists tell if it is dystonia or not.
Foot dystonia

Foot dystonia is uncontrollable and often painful muscle contractions in the foot which causes a twisting or turning in of the foot. Foot dystonia is believed to be caused by incorrect messages from the brain to the muscles in the foot or lower leg.
Tremor

Tremor is an uncontrollable shaking or oscillation of a part of the body. Dystonic tremor is a type of tremor which occurs in conjunction with dystonia.
Oromandibular dystonia

Mouth, tongue or jaw dystonia (the medical term is Oromandibular dystonia) is characterised by forceful contractions of the face, jaw or tongue. It can cause difficulty opening or closing the mouth, often affecting chewing and speech.
What is dystonia?

Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK. There are a large number of different types of dystonia which affect people in widely differing ways. Unfortunately there is not yet a cure.
Blepharospasm

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.
Neck dystonia

Neck dystonia (the medical name is cervical dystonia, or sometimes spasmodic torticollis) is uncontrollable and often painful muscle contractions in the neck which cause awkward postures and discomfort. The head generally pulls to one side, backwards or forwards.
The role of muscles in neck dystonia

The purpose of this article is to give a brief explanation of how some of the muscles in the neck can cause the abnormal movements and positions seen in neck dystonia.
Hemifacial spasm

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