Dystonia

What is dystonia?

Dystonia is a neurological disorder that causes muscles to move or tighten on their own, out of a person’s control. These unintentional movements can lead to slow, repeated motions or unusual body positions. These movements can be uncomfortable.

There are several different types of dystonia. Some types affect only one muscle or body part, while other types affect groups of muscles or muscles throughout the body. Dystonia symptoms can in some cases be life-threatening.

Some types of dystonia run in families. Dystonia can also happen because of an unrelated health problem. 

Symptoms of dystonia

Dystonia symptoms can be different from person to person, depending on which muscles or body parts are affected or the health problem causing the dystonia symptoms. They can include:

A person with dystonia may have mild symptoms at first that are only noticeable when the person is stressed or tired. Some people with dystonia have symptoms that don’t change much, while others have symptoms that get worse over time. 

Sometimes a person with dystonia will only have symptoms while doing specific things. For example, a musician may have dystonia when using one hand to play the piano but not when using the same hand to type on a keyboard.

Dystonia can happen at any age, which can affect what symptoms a person has. Dystonia that begins in childhood is called early-onset dystonia. It usually starts in the arms and legs and may spread to other parts of the body. A child’s symptoms can appear after physical activity and can change during the day.

People who get dystonia during adulthood (adult-onset dystonia) often have symptoms that involve neck and face muscles, but symptoms can also affect other body parts.

Causes of dystonia

Dystonia is caused by changes in how the brain tells the body to move. Dystonia is often named by its cause: idiopathic, genetic, or acquired.

Idiopathic dystonia doesn’t have a known cause. Many cases of dystonia are this type. 

Genetic dystonia runs in families. Variants (also called mutations) in a small group of specific genes cause genetic dystonia. Examples include DYT1 dystonia and dopa-responsive dystonia. Genetic dystonia symptoms may be different for each person, even among members of the same family. Sometimes a person who inherits one of these dystopia gene variants has no symptoms.

Acquired dystonia, sometimes called secondary dystonia, happens when the brain is injured or diseased. Many movement disorders and neurological conditions cause this type of dystonia:

Acquired dystonia usually doesn’t spread to other parts of the body. Symptoms often stop getting worse.  

Types of dystonia

The many types of dystonia are named for how much of the body they affect:

• Generalized dystonia affects most or all of the body
• Focal dystonia affects a specific part of the body
• Multifocal dystonia affects two or more unrelated body parts
• Segmental dystonia affects two or more parts of the body that are next to each other
• Hemidystonia affects an arm and leg on the same side of the body

Each of these types of dystonia can also include other types of dystonia. For example, focal dystonia can include:

• Cervical dystonia is the most common focal dystonia. It affects a person’s neck muscles, causing their head to turn or pull in a specific direction. Cervical dystonia can happen at any age, although for most people, it first happens in midlife. It often begins slowly and then stays the same over a few months or years. About 10% of people with cervical dystonia may have no symptoms for a period of time. But symptoms often return eventually.
• Blepharospasm is the second most common type of focal dystonia. It affects muscles that make a person’s eyes blink. At first, both eyes blink more than usual. Sudden muscle jerks or tightening can cause a person’s eyelids to close completely. This can create vision loss even though the eyes are otherwise healthy.
• Spasmodic dysphonia, also called laryngeal dystonia, affects muscles that control a person’s vocal cords, making it hard to speak.
• Task-specific dystonia happens during certain repetitive actions and is usually named for the activity involved. For example, “writer's cramp” affects a person’s hand or forearm muscles only when they are writing. “Musician’s dystonia” happens when a person tries to play an instrument and can affect their hands, mouth, lips, or voice. “Yips” are a type of task-specific dystonia that cause a person’s hands or arms to jerk during precise movements, like putting in golf or throwing a baseball.

Some types of multifocal dystonia also have specific names. The following are common examples of multifocal dystonia:

• Craniocervical dystonia affects muscles of the head, face, and neck.
• Oromandibular dystonia affects muscles of the jaw, lips, and tongue. It can make it hard to open and close the jaw, affecting speaking or swallowing. 

Who is more likely to get dystonia?

Dystonia can happen to anyone at any age. However, some types of dystonia are more likely to affect females than males. Some types of dystonia run in families. Genetic testing can help a person understand their risk of developing genetic dystonia. 

People with some neurological conditions or who are taking certain medicines may also be at a higher risk of developing dystonia. People with conditions such as cerebral palsy, Huntington’s disease, and Parkinson’s disease may develop dystonia as another symptom. 

How is dystonia diagnosed and treated?

Diagnosing dystonia

Doctors diagnose dystonia based on physical and neurological exams, a person’s personal and family history of disease, laboratory tests, tests that record electrical signals made by muscles, and other tests to rule out any conditions that may cause symptoms similar to dystonia.

Doctors may also use brain scans such as MRI (magnetic resonance imaging), but some people with dystonia don’t have changes in the brain that can be detected this way. Genetic testing can determine whether a person has a gene variant that could cause dystonia.

Find out more about neurological diagnostic tests and procedures.

Treating dystonia

Few treatments can stop dystonia or keep it from getting worse. But treatments such as botulinum toxin injections, medicines, surgery, and physical therapy can help manage specific dystonia symptoms.

Botulinum toxin injections

Botulinum toxin injections are often the most effective treatment for focal dystonia and help reduce uncontrolled muscle movements. People who get botulinum injections typically get relief a few days after treatment that can last for several months. The medicine daxibotulinumtoxinA-lanm (Daxxify) is a form of botulinum injection that lasts longer between injections for some people with cervical dystonia.

Surgery

Some surgeries can help people with dystonia when other treatments don’t work. One option is deep brain stimulation (DBS), when a surgeon puts small electrodes into parts of a person’s brain that cause dystonia symptoms.

Another small device inside a person’s chest acts like a pacemaker to control the brain implant by sending and fine-tuning electrical signals to the brain and easing symptoms. NINDS-funded researchers are also testing ultrasound as a way to treat the brain without surgery or wires.

Physical therapy

Physical therapy can be helpful for people with dystonia by using splints that hold parts of the body firmly in a comfortable position. Learning how to manage stress may help people with certain types of dystonia.

Biofeedback can also help by showing people body signals (like heart rate or muscle tension) so that they can learn to control them. Speech therapy can help people with voice problems from dystonia, and occupational therapy can help them find easier ways to do daily activities.

What are the latest updates on dystonia?

The National Institutes of Health (NIH), which includes NINDS, is the leading federal funder of research on the brain and nervous system, including disorders such as dystonia. NIH supports new and innovative research to better understand, diagnose, and treat dystonia. 

NINDS-funded research is learning about specific types of dystonia to help develop new treatments. These include:               

• How the immune system affects cervical dystonia.
• Studies on mice that have dystonia symptoms to better understand genetic dystonia (DYT1).    
• Development of better ways to diagnose and measure eye-blinking problems in blepharospasm.
• Improvements to DBS surgery for dystonia. For example, one study learned that using DBS to stimulate some parts of the brain worked better than others for certain types of dystonia.
• What goes wrong in brain cells to cause dystonia symptoms. This information may help predict who is at risk and inform future treatments.
• How physical therapy for cervical dystonia affects the brain. This may help explain why physical therapy works for some people and improve treatments for others.     

For more information on research about dystonia, check NIH RePORTER, a searchable database of current and past research projects funded by NIH and other federal agencies. RePORTER also has links to publications and resources from these projects.  

For research articles and summaries on dystonia, search PubMed, which contains citations from medical journals and other sites.

How can I or my loved one help improve care for people with dystonia?

Consider participating in a clinical trial so clinicians and scientists can learn more about dystonia and related disorders. Clinical research with human study participants helps researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.

All types of participants are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities. This helps make sure that study results apply to as many people as possible and that treatments will be safe and effective for everyone who will use them.

For information about participating in clinical research, visit the NINDS Clinical Trials site and NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with dystonia at ClinicalTrials.gov, a searchable database of current and past clinical studies and research results.

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