Dystonia

What is dystonia?

Dystonia is a nervous system disorder that causes uncontrollable muscle contractions, meaning a person’s muscles tense up without trying to make the muscles do so. Though it affects muscles, it’s actually an issue with your brain or another part of your nervous system.

The name “dystonia” is a combination of the Latin prefix “dys-,” and the Greek word “-tonos,” which refers to muscle tension. The combination of the two words describes a problem where your muscles tense up in a way that’s faulty or incorrect.

What is the difference between dystonia and dyskinesia?

Dyskinesia and dystonia are closely related but aren’t the same.

• Dyskinesia: This word comes from Greek. “Kinesia” comes from the word “kinesis,” which means “movement.” The combined word refers to movements that are faulty or happen in a way they shouldn't. Dyskinesias are involuntary muscle movements, meaning you don't control that they’re happening.
• Dystonia. This is a specific type of dyskinesia. With dystonia, muscles tense up for longer periods. Depending on what part of your body they happen in, they can often cause you to move or pose in certain ways.

Who does dystonia affect?

Depending on why it happens, anyone can develop dystonia. Some causes are age-specific, affecting people at birth or in childhood, while others are more likely to develop late in life.

How common is this condition?

The available research indicates that dystonia affects about 300,000 people in the United States. However, it’s difficult to know how common dystonia is because experts believe it’s underdiagnosed. That’s because dystonia can take so many different forms.

How does dystonia affect my body?

Dystonia is a brain condition that affects how your brain controls muscles throughout your body. This can affect muscles or groups of muscles in different ways. Exactly how and why this happens is still a mystery, though. The effects of dystonia can also worsen when you feel tired or stressed, or if you drink caffeine or alcohol.

Some types of dystonia happen because of genetic mutations or conditions that disrupt the way parts of your brain work. This can cause the affected cells to work incorrectly, leading to faulty signals reaching your muscles and causing dystonia’s effects.

Dystonia can also happen because of injuries or conditions that disrupt your brain function, and some of these conditions are visible on imaging scans or detectable with certain tests. But it can also happen for other reasons.

What are the symptoms of dystonia?

In general, the key symptom of dystonia is uncontrollable muscle movements. These movements are often:

• Uncomfortable or even painful, sometimes feeling like electric shocks.
• Repetitive (especially with tremors).
• Variable in how long they last; some last seconds or minutes while others can continue for months.
• Twisting or stretching in nature, causing a person to look like they’re holding an unusual pose.
• Worse when using the affected muscles.

There are also some slight differences in the symptoms depending on where dystonia happens in your body. There are five main ways that symptoms happen (with more about each below):

• Focal dystonia.
• Segmental dystonia.
• Multifocal dystonia.
• Hemidystonia.
• Generalized dystonia.

Focal dystonia

Focal dystonia only affects one part of your body, and experts estimate these cases are about 10 times more common than generalized dystonia cases. Depending on the body part affected, this can take different forms:

• Eyelids: Eyelid spasms (blepharospasm).
• Jaw: Teeth-grinding (bruxism).
• Hand or wrist: Cramps or muscle spasms, often known as “writer’s cramp” or “musician’s cramp.” Golfers and baseball players often call these “the yips.”

Segmental dystonia

This affects two or more adjacent body parts, such as different parts of your face, your head and neck, or your hand and arm. The most common example of segmental dystonia is cervical dystonia, which affects muscles in your head and neck. Another example is Meige syndrome, which affects multiple parts of your face.

Multifocal dystonia

This affects two or more body parts that aren’t directly connected. An example of this is dystonia that affects both hands. Tardive dyskinesia is an example of multifocal dystonia when it affects more than one non-connected part of your body.

Hemidystonia

Hemidystonia gets its name partly from the Greek word “hemi,” which means “half.” In this context, it affects just half — one side — of your body. An example of this is uncontrollable muscle movements in the right side of your face and your right hand. Strokes are a key cause of hemidystonia.

Generalized dystonia

This can involve your body’s leg and trunk (the main part of your body to which your arms, legs and head connect) or even your entire body. This can happen when dystonia is progressive, meaning it worsens over time. When focal dystonia turns into generalized dystonia, the symptoms spread from your limbs to the trunk of your body.

What causes dystonia?

Dystonia happens because of disruptions in how your brain should function. It usually involves your basal ganglia, a group of brain structures that link many different brain areas and coordinate how those areas work together.

Experts organize the causes of dystonia into three categories: Primary, secondary and “dystonia plus” conditions.

• Primary dystonia: This is when dystonia is the main condition. It’s usually “idiopathic,” which means it happens for an unknown reason. Experts also suspect genetics are a factor, meaning it runs in families.
• Secondary dystonia: This is when dystonia is a symptom of another condition or issue.
• Dystonia plus:These are neurological conditions where dystonia is a main symptom, but there are other symptoms, too.

Secondary dystonia causes

Secondary dystonia can happen because of, or in connection with, a wide range of reasons:

• Brain tumors.
• Other brain conditions (such as epilepsy, Parkinsonism, Parkinson’s disease, etc.).
• Cerebral hypoxia (especially for newborns who experienced a lack of oxygen during their birth).
• Drugs (prescription or recreational).
• Genetic conditions (such as Wilson’s disease or Huntington’s disease).
• Infections (such as encephalitis).
• Metabolic conditions.
• Stroke.
• Toxins and poisons (carbon monoxide poisoning, manganese poisoning, etc.).
• Traumatic brain injuries.

Is dystonia contagious?

Dystonia isn’t contagious, and you can’t spread it or catch it from others.

How is dystonia diagnosed?

A healthcare provider, often a neurologist, can diagnose dystonia based on your symptoms, a neurological exam and various medical tests. Diagnosing dystonia is often tricky because its symptoms can happen with so many other conditions. That means it’s important to rule out those other conditions, some of which are life-threatening medical emergencies.

What tests will be done to diagnose dystonia?

A wide range of lab, diagnostic and imaging tests are possible with dystonia. The most likely tests depend on your symptoms and what conditions healthcare providers suspect. Possible tests include, but aren’t limited to, the following:

• Blood tests (these can detect many problems, ranging from immune system issues to toxins and poisons, especially metals like copper or manganese).
• Computerized tomography (CT) scan.
• Electroencephalogram (EEG).
• Electromyogram (nerve conduction test).
• Genetic testing.
• Magnetic resonance imaging (MRI).
• Positron emission tomography (PET) scan.
• Spinal tap (lumbar puncture).

Other tests are possible, so your healthcare provider is the best person to ask about the tests they recommend for your specific case. The information they provide will be the most accurate for your circumstances.

How is dystonia treated, and is there a cure?

There’s no way to cure dystonia, but it might be treatable. Many possible treatments depend on the underlying cause or condition, or the symptoms you have. Your healthcare provider is the best person to tell you the treatment options they recommend in your specific situation.

Is there anything I can’t eat or drink with dystonia?

Your healthcare provider may recommend that you avoid caffeine and alcohol. For some people, drinking beverages that contain either can make dystonia symptoms worse.

What medications or treatments are used?

The possible medications or treatments for dystonia depend on why it’s happening and the specific symptoms you have. In general, the following treatment types are possible:

• Deep brain stimulation. This treatment involves surgery to implant electrodes into your brain. These electrodes deliver a mild electrical current to part of your brain, which can help the symptoms of dystonia. This is the most common and most useful surgical treatment for dystonia.
• Medications. Depending on why dystonia happens, it’s often possible to treat it with medication. The medication (or combination of them) depends on the symptoms and the underlying cause — if there is one — of the dystonia.
• Botulinum toxin injections. Botulinum toxin — commonly known under the trademarked name Botox® — can block all nerve signals for weeks or even months when injected in the right place. That keeps the signals that cause dystonia from getting to your muscles, making botulinum toxin a treatment option for focal or some segmental dystonia symptoms.
• Physical, occupational and speech therapy. These forms of treatment can often help a person adapt or recover from dystonia, especially when dystonia happens because of a temporary health condition or circumstance.

Complications/side effects of treatment

The complications and side effects possible with dystonia depend on several factors, starting with the treatments themselves. Your healthcare provider is the best person to explain what’s possible or likely for you because they can give you information that considers your circumstances.

How do I take care of myself or manage symptoms?

Dystonia is a neurological problem, which means it isn’t something you can self-diagnose and self-treat. It’s also important to talk to your healthcare provider sooner than later because dystonia can happen with severe or life-threatening conditions.

How soon after treatment will I feel better, and how long does it take to recover?

The timeline for you to feel better and recover depends on why your dystonia happened, how severe it is, the treatments you received, any other health conditions you might have and more. Your healthcare provider is the best person to tell you about the likely timeline for you to feel better and recover.

How can I reduce my risk or prevent dystonia altogether?

Dystonia happens unpredictably, so you can’t prevent it. You also can’t reduce the risk of developing primary dystonia. That’s because you either inherit it or develop it for unknown reasons.

However, some causes of secondary dystonia are preventable, or you can reduce your risk of developing them. The things you can do include:

• Eat a balanced diet and maintain a healthy weight.Many conditions related to your circulatory and heart health, especially stroke, can damage areas of your brain, causing dystonia. Preventing, delaying or reducing the severity of these conditions can have a big effect on whether or not you develop dystonia.
• Don’t ignore infections. Eye and ear infections need fast treatment. When these infections spread to your brain, they become a serious threat. Infections can cause brain inflammation (encephalitis) that can lead to dystonia.
• Wear safety equipment.Traumatic brain injuries can damage your brain and cause dystonia. That makes safety equipment essential in reducing your risk of developing this condition.
• Manage your health conditions.Chronic conditions cause or contribute to other conditions that lead to dystonia. That includes conditions like Type 2 diabetes, high blood pressure, epilepsy and others.

What is the outlook for dystonia, and what can I expect if I have it?

The outlook for dystonia depends on what caused it, when you develop it, where in your body it causes symptoms, your health history, the treatments you receive and more. Your healthcare provider is the best person to tell you more about the outlook for your case.

Primary dystonia outlook

In general, primary dystonia tends to have a less-favorable outlook when it happens early in life. That’s because primary dystonia can progress from focal to generalized. The earlier in life you develop this condition, the further the condition can progress.

Focal dystonia tends to have a better outlook because it’s limited in how it affects your body. When dystonia affects multiple areas of your body, especially areas that aren’t directly connected, it’s usually because of more severe disruptions in your brain.

Secondary dystonia outlook

The outlook for secondary dystonia depends strongly on the condition causing it. When the underlying cause is a curable or reversible condition, there’s a much better likelihood of a good outcome. When it happens because of a chronic (long-term) condition, the odds of a good outcome go down. However, there are some chronic conditions where a good outcome and recovery from dystonia are still possible.

How long does dystonia last?

Primary dystonia is a lifelong condition once it develops. It’s treatable, but it isn’t curable and doesn’t go away on its own.

Secondary dystonia can be a short-term condition, depending on the underlying cause. This is more likely with conditions like infections, traumatic injuries and certain drugs. However, other factors can influence this, so your healthcare provider is the best person to tell you what you should expect in your case.

How do I take care of myself?

If you have dystonia, there may be some things you can do to take care of yourself, including:

• Avoid caffeine and alcohol if your healthcare provider recommends this. These can make dystonia symptoms worse.
• Manage your stress. Anxiety and stress can cause dystonia to worsen. You can reduce this risk by managing your stress and anxiety with techniques like meditation, relaxation training, exercise and more.
• Avoid activities that make symptoms worse. Some forms of dystonia are more likely to happen under certain circumstances. Avoiding those circumstances, when possible, can reduce the chances of dystonia symptoms flaring up.
• Learn how to manage your condition. Different forms of dystonia are often manageable with “sensory tricks.” A key term for this is “geste antagoniste,” which is French for “antagonistic gesture.” An antagonistic gesture can cause dystonia symptoms to get better temporarily, though experts don’t know exactly why this happens. An example of an antagonistic gesture is touching your chin or the side of your face to help relieve the symptoms of cervical dystonia (which affects muscles in your head and neck). Your healthcare provider can help find if you respond to these gestures and teach you how to use them.
• Take your medication. If you take medication for dystonia, take your medication as prescribed. Suddenly stopping your medication can worsen dystonia symptoms or cause other side effects.

When should I see my healthcare provider, and when should I seek care?

If you have dystonia, you should see your healthcare provider for follow-up visits as recommended. You should also see them if your symptoms change or worsen, especially if the changes disrupt your life and routine. Also see them if medications or other treatments lose effectiveness or cause side effects that are difficult to deal with or disruptive.

When should I go to ER?

You should go to the ER if you have any symptoms that could also happen with a stroke. To know when you need to call 911 (or your local emergency services number) because of stroke symptoms, remember to think FAST.

• F is for face. Does one or both sides of the person's face droop when they try to smile?
• A is for arm. Does one arm sag downward when the person tries to raise their arms upward?
• S is for speech. Can the person speak clearly and understand others talking to them?
• T is for time. Call 911 or your local emergency services number IMMEDIATELY if a person has the above symptoms. Stroke is a time-critical condition, and fast treatment is the best way to increase the chances of having a good outcome and recovery.

What does dystonia feel like?

What dystonia feels like depends on what’s causing it, where it happens in your body, how severe it is and more. Dystonia can vary greatly from person to person, and what one person experiences with the same type of dystonia could be wildly different from what another person experiences.

For some people, dystonia causes minor symptoms, and the muscle movements feel like light fluttering or twitching. For others, the muscle movements are sharper, faster and may be uncomfortable or painful. Some types of dystonia cause muscle movements that feel like electric shocks.

What is the life expectancy of someone with dystonia?

The life expectancy with dystonia depends strongly on why it happens, if it happens in connection with any other conditions, your health history, the treatments you receive and more. Your healthcare provider is the best person to tell you more about whether or not dystonia affects your life expectancy and, if yes, how it will do so.

A note from Cleveland Clinic

Dystonia is a brain condition that causes faulty signals to your muscles, which makes those muscles move uncontrollably. This condition can happen for many reasons, ranging from lifelong inherited conditions to short-term illnesses. The severity of the symptoms and how widespread the effects are in your body can make this condition a minor inconvenience, or they can be severely disruptive and keep you from doing certain things.

While it isn’t curable, dystonia is often treatable, especially with certain causes. In some cases, dystonia may go away entirely when it happens with short-term or curable conditions.