Diagnosis

To diagnose dystonia, your health care provider may start with a medical history and physical examination.

To determine if underlying conditions are causing your symptoms, your provider might recommend:

  • Blood or urine tests. These tests can reveal signs of toxins or of other conditions.
  • MRI or CT scan. These imaging tests can identify problems in your brain, such as tumors, lesions or evidence of a stroke.
  • Electromyography (EMG). This test measures the electrical activity within muscles.
  • Genetic testing. Some forms of dystonia are associated with certain genes. Knowing if you have these genes can help guide treatment.

Treatment

To manage dystonia, your provider might recommend a combination of medications, therapy or surgery.

Medications

Injections of botulinum toxin (Botox, Dysport, others) into specific muscles might reduce or stop your muscle spasms. Injections are usually repeated every 3 to 4 months.

Side effects are generally mild and temporary. They can include weakness, dry mouth or voice changes.

Other medications target chemicals in your brain (neurotransmitters) that affect muscle movement. The options include:

  • Carbidopa-levodopa (Duopa, Rytary, others). This medication can increase levels of the neurotransmitter dopamine. This drug may also be used as a trial to help diagnose certain types of dystonia.
  • Trihexyphenidyl and benztropine. These two medications act on neurotransmitters other than dopamine. Side effects can include memory loss, blurred vision, drowsiness, dry mouth and constipation.
  • Tetrabenazine (Xenazine) and deutetrabenazine (Austedo). These two medications block dopamine. Side effects can include sedation, nervousness, depression or insomnia.
  • Diazepam (Valium, Diastat, others), clonazepam (Klonopin) and baclofen (Lioresal, Gablofen, others). These medications reduce neurotransmission and might help some forms of dystonia. They may cause side effects, such as drowsiness.

Therapy

Your health care provider might suggest:

  • Physical therapy or occupational therapy or both to help ease symptoms and improve function
  • Speech therapy if dystonia affects your voice
  • Stretching or massage to ease muscle pain

Surgery

If your symptoms are severe, surgery might help. There are a few types of surgery to treat dystonia:

  • Deep brain stimulation. Electrodes are surgically implanted into a specific part of your brain and connected to a generator implanted in your chest. The generator sends electrical pulses to your brain that might help control your muscle contractions. The settings on the generator can be adjusted to treat your specific condition.
  • Selective denervation surgery. This procedure involves cutting the nerves that control muscle spasms. It might be an option when other treatments for cervical dystonia haven't worked.

Lifestyle and home remedies

Dystonia has no cure, but you can do several things to manage symptoms:

  • Sensory tricks to reduce spasms. Touching certain parts of your body may cause spasms to stop temporarily.
  • Heat or cold. Applying heat or cold can help ease muscle pain.
  • Stress management. Learn effective coping skills to manage stress, such as deep breathing, social support and positive self-talk.

Alternative medicine

Alternative treatments for dystonia haven't been well studied. Ask your health care provider about complementary treatments before you start them. Consider:

  • Meditation and deep breathing. Both might ease stress that can worsen spasms.
  • Biofeedback. A therapist uses electronic devices to monitor your body's functions, such as muscle tension, heart rate and blood pressure. You then learn how to control your body responses, which might help reduce muscle tension and stress.
  • Yoga. Yoga combines physical postures, breathing techniques, and meditation or relaxation.

Coping and support

Living with dystonia can be difficult and frustrating. Your body might not always move as you would like, and you may be uncomfortable in social situations. You and your family might find it helpful to talk to a therapist or join a support group.

Preparing for your appointment

You may be referred to a doctor who specializes in disorders of the nervous system (neurologist).

What you can do

  • Write down your symptoms, including any that may seem unrelated to the reason why you scheduled the appointment.
  • Make a list of all your medications, vitamins and supplements.
  • Write down your key medical information, including other conditions.
  • Write down key personal information, including any recent changes or stressors in your life.
  • Ask a relative or friend to accompany you, to help you remember what your provider says.
  • Write down questions to ask your provider.

Questions to ask your health care provider

  • What's the most likely cause of my symptoms?
  • What kinds of tests do I need? Do they require any special preparation?
  • Is my condition likely temporary or chronic?
  • What treatments are available?
  • What side effects can I expect from these treatments?
  • I have other health conditions. How can I best manage them together?

In addition to the questions that you've prepared to ask, don't hesitate to ask other questions during your appointment.

What to expect from your doctor

Your provider may ask you some questions. Being ready to answer them may give you more time to focus on your concerns. You may be asked:

  • When did you first notice your symptoms?
  • Have your symptoms been continuous or occasional?
  • How severe are your symptoms?
  • What, if anything, seems to improve your symptoms?
  • What, if anything, appears to worsen your symptoms?
  • Has anyone in your family ever been diagnosed with dystonia?