Dystonia is a movement disorder. It causes your muscles to contract and move abnormally, leading your body to assume abnormal postures. These movements can be painful or uncomfortable and they can disrupt your daily life.
Dystonia is the third most common movement disorder, after essential tremor and Parkinson's disease. It affects people in different ways, depending on the type of dystonia, the areas of the body it affects and what’s causing it.
Dystonia is usually a long-term condition but treating it can help reduce symptoms and improve the way you function.
Dystonia is a condition that happens when brain signals that control movement don’t work the way they should. These abnormal signals cause muscles to tighten or contract when they shouldn’t.
Dystonia can affect a single muscle, a group of muscles or several parts of the body at once. Some people have symptoms only in one area, while others have symptoms that spread to different muscles over time.
Dystonia can affect your posture, coordination and movement control. Your symptoms may get worse with stress, fatigue or certain activities and get better when you rest.
Your risk for dystonia increases if:
There are many forms of dystonia. Health care providers classify dystonia based on what’s causing it, how old you are and which body parts are affected. Different types of dystonia have different treatment options.
Primary dystonia happens by itself, not along with any other neurologic condition. Sometimes it’s genetic. In other cases, it’s not clear what causes it.
Symptoms often start slowly and may begin in one part of the body before spreading to others.
Primary dystonia includes several subtypes, including:
Focal dystonia affects one specific body part. It is one of the most common forms of dystonia and it often starts in adulthood.
Examples include:
Cervical dystonia affects the muscles of the neck. It can cause the head to twist, tilt or pull into abnormal positions.
People with this type of dystonia may have neck pain, stiffness and headaches along with changes in posture.
Oromandibular dystonia affects the jaw, tongue and lower part of the face. It can cause problems with speaking, chewing and swallowing.
Symptoms may include jaw clenching, tongue movements or trouble keeping your mouth closed.
If you have both blepharospasm and oromandibular dystonia at the same time, it may be called cranial dystonia or Meige's syndrome.
Some of these forms may affect many muscles, so they can have a bigger impact on mobility:
Symptoms may change over time and can vary based on which muscles are involved. They can be worse if you’re stressed or fatigued.
People often notice:
Dystonia can be caused by:
Identifying the cause helps your care team recommend a treatment and monitoring plan.
To diagnose dystonia and figure out what type you have, your health care provider will:
If you need more testing, they may order:
The treatment of dystonia depends on the type, how severe it is and the parts of the body that are affected. Getting an accurate diagnosis is important. Many people get better symptom relief by using a mix of treatment options.
Medications including clonazepam and baclofen may help reduce muscle movements and symptoms. Some types of dystonia respond to the dopamine-boosting medication levodopa. Other medications that may help are ones that decrease muscle overactivity (such as baclofen or clonazepam), or medicines that reduce acetylcholine activity like trihexyphenidyl.
If you take medication, your health care provider will monitor you closely for possible side effects. Side effects can vary depending on the type of medicine you take.
Your provider may recommend botulinum toxin injections if you have focal dystonia. This medication helps overactive muscles relax and reduces their abnormal contractions. Botox injections need to be repeated every three to six months, since their effects aren’t permanent.
Deep brain stimulation (DBS) uses implanted electrodes to help regulate abnormal brain signals that cause dystonia. Your provider may recommend DBS if you have severe or generalized dystonia and other treatments aren’t working for you.
Supportive care can help you adapt and stay independent. Options may include:
It may also help to:
Research is exploring whether MRI-guided focused ultrasound or gene therapy could help with dystonia.
You’ll need to manage dystonia long-term. Your symptoms may change over time, so ongoing communication, care and follow-up are important. Be sure to tell your health care team about any changes in your symptoms or how well your treatments are working.
Supportive strategies, education and emotional support can help you cope with the physical, social and mental health effects of dystonia.
Talk to a health care provider if you notice muscle tightening, abnormal movements or pain that interferes with your daily life. Early evaluation means dystonia can be diagnosed more quickly and treatment can start sooner.
At Banner Health, our experienced movement disorder team offers specialized care for dystonia. You can count on our team for advanced diagnosis, personalized treatment plans and long-term support. We’re here to help you manage your symptoms and improve your quality of life.
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