Cervical dystonia is a rare condition in which your neck muscles involuntarily contract into abnormal positions. It causes repetitive twisting movements of your head and neck. The movements can be intermittent, in spasms, or constant.
The severity of cervical dystonia varies. It can be painful and disabling in some cases. The specific cause isn’t known. There’s no cure as yet, but symptoms can be treated.
Cervical dystonia is also called spasmodic torticollis.
Pain is the most frequent and challenging symptom of cervical dystonia. The pain is usually on the same side of the head as the tilt.
The most common abnormal movement in cervical dystonia is a twisting of the head and chin sideways, toward your shoulder, called torticollis. Other abnormal movements include the head:
- tipping forward, chin downward, known as anterocollis
- tilting backward, chin upward, called retrocollis
- tilting sideways, ear to shoulder, known as laterocollis
Some may have a combination of these movements. Also, the symptoms may vary over time and by individual.
Stress or excitement may aggravate symptoms. Also, some physical positions may activate symptoms.
The symptoms usually begin gradually. They may get worse and then reach a plateau. Other symptoms may include:
- neck pain that radiates to the shoulders
- a raised shoulder
- hand tremors
- head tremor, which affects about half of people with cervical dystonia
- enlargement of the neck muscle, affecting about 75 percent of people with cervical dystonia
- unawareness of physical movements not affected by dystonia
In most cases, the cause of cervical dystonia isn’t known. Possible causes identified in some cases include:
- neurological disorders, such as Parkinson’s
- medication that blocks dopamine, such as some antipsychotics
- injury to the head, neck, or shoulders
- a genetic mutation, as 10 to 25 percent of people with cervical dystonia may have a family history of the disease
- a psychological problem
In some cases, cervical dystonia is present at birth. Environmental factors also may be involved.
Cervical dystonia is estimated to affect about 60,000 people in the United States. Those at risk include:
- women, who are affected about twice as often as men
- people between ages 40 and 60
- those with a family history of dystonia
Pain is a main symptom of cervical dystonia. People respond individually to different types of drugs and combinations of treatments. What works for others may not work for you.
The primary treatment for pain relief is botulinum toxin injections in the neck muscles every 11 to 12 weeks. This immobilizes the nerves in the neck muscles. It’s reported to relieve pain and other symptoms in 75 percent of people with cervical dystonia.
According to a 2008 study, it’s important to use electrical signal diagnostics, or electromyography, to target the particular muscles for botulinum toxin injections.
Botulinum toxin drugs used include Botox, Dysport, Xeomin, and Myobloc. You may be familiar with Botox as a wrinkle smoother used for cosmetic purposes.
Several types of oral medications are reported by the Dystonia Foundation to help relieve the symptoms associated with cervical dystonia. These include:
- anticholinergics, such as trihexyphenidyl (Artane) and benztropine (Cogentin), which block the neurotransmitter acetylcholine
- dopaminergics, such as levodopa (Sinemet), bromocriptine (Parlodel), and amantadine (Symmetrel), which block the neurotransmitter dopamine
- GABAergics, such as diazepam (Valium), which target the neurotransmitter GABA-A
- anticonvulsants, such as topiramate (Topamax), typically used as a treatment for both epilepsy and migraine, and has reported successful use in treating symptoms of cervical dystonia
Be sure to discuss with your doctor the side effects associated with these medications.
Treatment options for cervical dystonia have improved in recent years. In addition to physical treatment, counseling may be helpful, especially in methods to help you cope with stress.
Physical therapy may help. This includes massage and heat to relax your neck and shoulders as well as targeted stretching and strengthening exercises.
A 2012 Brazilian study of 20 people with cervical dystonia found that physical therapy improved pain, other symptoms, and quality of life. The study protocol involved:
- exercises to move in the opposite direction of the person’s twist
- kinesiotherapy exercises for moving and stretching the neck
- electrical stimulation of muscles
Biofeedback involves the use of an electronic instrument to measure variables such as muscle activity, blood flow, and brain waves.
The information is then fed back to the person with cervical dystonia, to help make them more able to manage their involuntary motions.
A small 2013 study using biofeedback showed significant pain relief and improvement in quality of life.
When more conservative treatments don’t work, surgical procedures may be an option. Be aware that cervical dystonia is a rare condition, so large-scale controlled studies aren’t available.
Older surgical techniques involve cutting the nerves in the brain involved in the involuntary movements of the head. These surgical procedures may have side effects. Also, involuntary movements may return after a time.
Deep brain stimulation
Deep brain stimulation, also called neuromodulation, is a newer treatment. It involves drilling a small hole in the skull and inserting electrical leads into the brain.
A small battery that controls the leads is implanted near the collarbone. Wires under the skin connect the battery to the leads. You use a remote control to deliver low-voltage electric current to the nerves responsible for involuntary head and neck movements.
A physical therapist can help with specific exercises that you can safely do at home to relieve symptoms and strengthen your muscles.
Sometimes simple sensory tricks can help stop a spasm. These include lightly touching the opposite side of your face, chin, cheek, or the back of your head. Doing this on the same side as your spasm may be more effective, but the effectiveness may lessen in time.
Cervical dystonia is a serious neurological disorder with no known cure as yet. Unlike other types of dystonia, it can involve significant physical pain and disability. It’s worsened by stress.
It’s likely that you’ll have a mix of treatments, including:
- botulinum toxin
- physical therapy
- surgery, in some cases
A few people may go into remission with treatment.
Possible complications include:
- the spread of involuntary motions to other parts of your body
- bone spurs in the spine
- cervical spine arthritis
People with cervical dystonia also have a higher risk of depression and anxiety.
On the positive side, treatments for cervical dystonia continue to improve as more research studies are done. You may be interested in joining a clinical trial that’s investigating new treatments.
The Dystonia Medical Research Foundation can help with information and resources, such as finding an online or local support group.