What is dystonia?
Dystonia is a movement disorder that makes muscles tighten when you do not want them to. It is a miscommunication between the brain and the muscles.
The signal goes from the muscle to the brain, and there are a few areas along the way where it stops to be processed or interpreted. By the time it reaches the area of the brain where a decision needs to be made, and goes back to the muscle while being processed again at a few areas, the message is different.
It is like the telephone game, where you sit in a circle and one person whispers a message to the next person, then the next. When it gets back to the person who started it, it is a totally different message than when it started.
Dystonia can affect one part of the body or several parts. The most common type in adults is cervical dystonia, which affects the neck.
Types of dystonia
- Cervical dystonia affects the neck. It is described in detail below.
- Spasmodic dysphonia affects the voice box, making the voice sound strained, tight, or broken. It is diagnosed by an ear, nose, and throat (ENT) doctor, who treats it with botulinum toxin injections.
- Writer’s cramp affects the hand and arm. The hand cramps or twists when you write, and sometimes during other hand tasks.
- Generalized dystonia affects many parts of the body. Some forms are genetic, such as DYT1 dystonia, which usually starts in childhood or the teen years.
Cervical dystonia
Cervical dystonia is a condition in which the neck muscles tighten or spasm on their own. This pulls the head into a turned, tilted, or bent position. It is also called spasmodic torticollis. It affects the neck and sometimes the shoulders.
Cervical dystonia most often starts in adults, often in middle age. It usually comes on slowly and then levels off. In most people, the cause is not known. Sometimes it runs in families, and sometimes it is caused by certain medicines. It is not caused by anything you did.
Common symptoms
- The head turns to one side, with the chin pointing toward a shoulder
- The head tilts, with an ear pulled toward a shoulder
- The head is pulled forward or backward
- One shoulder is raised
- Neck and shoulder pain, which can be the hardest part for many people
- Jerky head movements or a head tremor, with a “yes-yes” or “no-no” motion
Symptoms are often worse with stress, tiredness, or walking, and better when lying down or after sleep.
Many people find a “sensory trick” that helps. Lightly touching the chin, cheek, or back of the head can ease the pull for a short time. This is a common feature of dystonia and can be a clue for the diagnosis.
How we make the diagnosis
There is no blood test for cervical dystonia. The diagnosis is made mainly through a careful exam by a movement disorder specialist.
At your visit, we will:
- Ask when your symptoms started and what makes them better or worse
- Review your medicines, since some can cause dystonia
- Watch how your head and shoulders move at rest, when you walk, and when you use your hands
- Feel the neck muscles to find which ones are pulling
This exam also guides treatment, because we match your treatment to the muscles that are involved. When symptoms start at a young age or other parts of the body are involved, we may order blood tests, brain or neck imaging, or genetic tests.
Treatment options
Botulinum toxin injections are the main treatment for most people with cervical dystonia. They are described in the next section. Other treatments can help too, and many people use more than one.
Physical therapy
A physical therapist can teach stretches and exercises that ease pain and help you hold your head in a better position. Heat, massage, and good posture at work and home can also help.
Surgery for select cases
For the small number of people who do not get enough help from other treatments, deep brain stimulation (DBS) or other surgery may be an option. We can talk with you about whether this may fit.
Your medication list
Make sure you bring a typed list of medications used to treat dystonia that failed or caused side effects. Use BPMedTracker to track your medications and print a list.
Botulinum toxin injections
We offer botulinum toxin injections in our office. Botulinum toxin is a medicine that relaxes overactive muscles by blocking the signal from the nerve to the muscle. Several brands are available, including Xeomin, Botox, Dysport, and Myobloc.
At your visit, we choose the medicine, the dose, and the neck and shoulder muscles to treat based on your exam. The injections use a very thin needle and take only a few minutes. Most people go back to their usual activities the same day.
The benefit usually starts within 1 to 2 weeks. It then slowly wears off, so injections are typically repeated every few months. At each visit, we check how well the last treatment worked and adjust the dose or muscles if needed.
For cervical dystonia, it can take several injection cycles to find the right pattern that improves it, which can take months to a year.
Possible side effects include soreness where the needle went in, neck weakness, and trouble swallowing. These are usually mild and go away with time. Tell us if you notice any of them. Get medical help right away if you have trouble breathing, or trouble swallowing that makes it hard to eat or drink.
Some people with essential tremor also have cervical dystonia that causes a dystonic head tremor. This head tremor is treated with botulinum toxin, not with the medicines used to treat essential tremor.
Botulinum toxin injections are also used for drooling in Parkinson’s disease.
When to see a specialist
Consider seeing a movement disorder specialist if you or a loved one has:
- Neck muscles that pull the head to one side, forward, or back
- Neck pain with a head tremor or jerky movements
- Botulinum toxin injections that no longer seem to work as well
- New twisting movements while taking a medicine that blocks dopamine
Call 940-828-MOVE (6683) to schedule a visit.
Support and resources
The National Spasmodic Torticollis Association offers support groups, education, and a community of people who understand life with cervical dystonia.
