Dystonia (2024)

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.

What can trigger dystonia symptoms
  • tiredness
  • stress
  • drinking alcohol or caffeine
  • talking
  • eating or chewing
  • activities like writing, typing or playing an instrument

Non-urgent advice: See a GP if:

  • 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.

Main types of dystonia
Types of dystonia and areas of the body affected
Type Area affected

Generalised dystonia

Most of the body

Myoclonus dystonia

Arms, neck and torso

Cervical dystonia (torticollis)

Neck only

Blepharospasm

Eyes

Laryngeal dystonia

Voice box (larynx)

Task-specific dystonia (writer's cramp)

Hands, arms and wrists

Oromandibular dystonia

Lower face, mouth, tongue or jaw

Read more on the different types of dystonia from Dystonia UK

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.

Read more on deep brain stimulation from Dystonia UK

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.

Information:

You can get support if you live with dystonia from Dystonia UK.

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:

Page last reviewed: 16 May 2024
Next review due: 16 May 2027

Dystonia (2024)

FAQs

Dystonia? ›

Dystonia is a movement disorder that causes the muscles to contract. This can cause twisting motions or other movements that happen repeatedly and that aren't under the person's control. When the condition affects one part of the body, it's called focal dystonia.

What is the cause of dystonia? ›

The principal cause of dystonia has been thought to be dysfunction of the basal ganglia, which emerged from the concept of the basal ganglia as the brain region responsible for integrating motor control. Also, secondary dystonia is often due to lesions of the basal ganglia, specifically the putamen or globus pallidus.

What is the life expectancy of a person with dystonia? ›

A diagnosis of dystonia does not generally reduce your life expectancy. If your dystonia began when you were an adult, your life expectancy should be equal to that of the general population. If you have severe dystonia caused by inherited or genetic factors, your life expectancy can be affected.

Does dystonia go away? ›

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

How do you calm dystonia? ›

Dystonia has no cure, but you can do several things to manage symptoms:
  1. Sensory tricks to reduce spasms. Touching certain parts of your body may cause spasms to stop temporarily.
  2. Heat or cold. Applying heat or cold can help ease muscle pain.
  3. Stress management.
Jun 11, 2024

Is dystonia a form of MS? ›

Dystonia is an uncommon complication of relapsing-remitting multiple sclerosis (MS) and related disorders. The types of dystonia described associated with MS are heterogenous, and the relationship between dystonia and MS remains unclear.

Is dystonia caused by anxiety? ›

Psychological stress can interfere with dystonia in various ways. It can cause psychogenic dystonia and aggravate existing dystonia. Our study suggests that psychological stress might also trigger the onset of—genetically preformed—idiopathic dystonia.

Is dystonia a form of Parkinson's? ›

Although dystonia can be a Parkinson's symptoms, people can experience dystonia without having Parkinson's. Whether or not a person with dystonia has Parkinson's, it is often treated with the same medications.

Is dystonia brain damage? ›

Dystonia may be inherited, acquired, or idiopathic (no known cause). Inherited disorders are transmitted genetically. In acquired forms, dystonia is caused by damage or degeneration of the brain (e.g. after a brain injury or stroke) or exposure to particular drugs.

At what age does dystonia start? ›

Age of onset is broken down into infancy (birth to 2 years), childhood (3-12 years), adolescence (13-20), early adulthood (21-40) and late adulthood (greater than 40 years). Dystonia that develops during infancy or childhood is more likely to have a known cause and to progress to become widespread.

Why does alcohol help dystonia? ›

Ethanol enhances GABAergic neurotransmission in the brain2729 and could potentially improve dystonia by overcoming dystonia-related disinhibition of the somatosensory network. Similarly, other GABA-enhancing substances such as benzodiazepines, zonisamide, and sodium oxybate produce similar effects as alcohol.

What drug causes dystonia? ›

Neuroleptics (antipsychotics), antiemetics, and antidepressants are the most common causes of drug-induced dystonic reactions. Acute dystonic reactions have been described with every antipsychotic. Alcohol and cocaine use increase risk.

What is the best vitamin for dystonia? ›

However, the supplements that have shown the most promise in research for neurological disorders are Omega 3 fatty acids, B12 and Vitamin D. There are many companies that sell these supplements and some are of high quality and others of poor quality.

What mental illness is associated with dystonia? ›

Anxiety and depression are among the most common non-motor issues seen in individuals with dystonia. Studies have shown that as many as 70% of individuals with dystonia will experience depression and/or anxiety over their lifetime. Anxiety and depression significantly worsen disability and quality of life in dystonia.

Does dystonia turn into Parkinson's? ›

Although dystonia can be a Parkinson's symptoms, people can experience dystonia without having Parkinson's. Whether or not a person with dystonia has Parkinson's, it is often treated with the same medications.

What viruses cause dystonia? ›

Herpes simplex virus (HSV), varicella, mumps, measles, enterovirus, Influenza-A, Epstein-Barr virus and other viral infections can cause acute ataxia, OMAS and chorea-dystonic syndromes [10], [11], [27], [28], [29].

References

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