FAQs: Living With Dystonia

What's the best way to deal with pain?

The degree of pain associated with dystonia varies greatly from person to person, from none to severe. People with secondary dystonias may experience more pain than those with primary dystonias. In many cases, treatments that address the dystonic contractions and spasms will also relieve pain. Botulinum toxin injections can be quite effective in this regard. Muscle relaxant medications may have the same effect.

If pain persists, over-the-counter pain medications (i.e. acetaminophen, ibuprofen, naproxen) may be surprisingly effective, and should be tried first. Consult your physician to ascertain whether the pain is due to the dystonia or to other secondary conditions such as arthritis or a compressed nerve.

Patients with neck dystonia frequently report persistent headaches. These kinds of headache can sometimes be relieved by botulinum toxin injections, and stronger analgesics may also be considered. If the pain comes from degeneration of the neck spine or impingement and irritation of nerve roots, that pain may require specific treatment.

If pain is impacting your quality of life, consider consulting a pain management specialist. Pain management specialists are medical doctors who specialize in treatment of people who have chronic pain, such as back pain or nerve pain. Medical doctors from many different specialties, such as anesthesiology, neurology, or physiatry, might further specialize in pain management.

Are some drugs better suited to treat secondary rather than primary dystonia?

For the most part, many of the drugs of choice for secondary dystonia also work well for primary dystonia and vice versa. Wilson's disease (which is a copper abnormality) requires a very specific treatment, therefore in a case of secondary dystonia caused by this condtion will be alleviated by treating the Wilson's disease.

Can medications used to treat dystonia be used during pregnancy?

There have been very few studies on the effects of dystonia medications and botulinum toxin in pregnant women, so to err on the side of caution, it is generally recommended that women who are pregnant cease drug treatment. In some cases a woman may (gradually) stop taking oral drugs completely, in other cases the dose is reduced. Treatment for dystonia during pregnancy is very individual and each woman's situation is unique. There is no single recommendation for all women patients, and women should discuss their situation with an experience movement disorder specialist.

Are ramisectomy and rhizotomy surgeries still performed for cervical dystonia?

Ramisectomy and rhizotomy are procedures that involve cutting the nerve or nerves supplying overactive muscles. A ramisectomy may be incorporated into a selective denervation surgery for cervical dystonia, and rhizotomies are only rarely performed for dystonia.

Are chiropractor adjustments on the neck and upper back useful for cervical dystonia?

People with dystonia should exercise extreme caution in considering traditional chiropractic care to address their dystonia symptoms. Because of the nature of chiropractic adjustments and the nature of dystonia, there is some clear potential for harm. Gentle massage may help temporarily alleviate muscle tension, but before seeking treatment from a chiropractor or massage therapist (or any complementary therapy practitioner) you must be completely confident that the practitioner fully understands dystonia and the implications of your individual symptoms. This may involve providing materials to the practitioner, sharing the DMRF's web address, or inviting the practitioner to contact your movement disorder specialist.

Do braces or other orthopedic devices play a role in the treatment of dystonia?

Generally, they do not. Individuals who have dystonia and spasticity may benefit from othotics or braces to help support weak or compensating body parts or guard against joint deformity. However, most people with primary dystonia, especially those with limb or trunk dystonia, will continue to have the spasms and abnormal postures regardless of using a brace. In fact, the brace often makes the situation even more uncomfortable because the spasms twist the affected part against or into the brace. Some people with cervical dystonia find a soft cervical collar helps gently maintain the position of the neck.

Has acupuncture been used in dystonia?

Although published information is limited, anecdotal accounts suggest that acupuncture may help relieve pain in people with dystonia. The benefits of acupuncture are usually cumulative and require more than one visit to the practitioner before becoming apparent. Acupuncture can be used in conjunction with traditional medications without negative interactions.

If you are interested in finding an acupuncture practitioner, learn as much as you can about the practice. Laws vary from state to state so check into your local required credentials for people who practice acupuncture. A practitioner who is not a traditional physician should have a diploma from the National Commission for the Certification of Acupuncturists. You can also contact the American Academy of Medical Acupuncture (AAMA) for a list of certified acupuncturists in your state. The AAMA can be reached at 323-937-5514 or log on to http://www.medicalacupuncture.org/

Can hypnosis help relieve symptoms?

Hypnosis does not address dystonia directly and certainly cannot "cure" dystonia, but relaxation techniques such as self-hypnosis can improve well being and quality of life.

Do specific foods or vitamins affect dystonia? Should people with dystonia avoid certain foods?

There does not appear to be a correlation between dystonia and diet. Generally speaking, you should have a nutritious diet sufficient in calories, considering the amount of muscle activity that can go on during the day. The diet should be well-balanced. Stimulants such as nicotine and caffeine may make symptoms worse in a number of patients. Similarly, alcohol may make symptoms temporarily better (or worse) in a few cases. Nutritional supplements, vitamins, and have not been shown to cause any dramatic improvement in movement disorders. Anything that makes a person more relaxed, calm, or outright sleepy may non-specifically, and usually only mildly, improve symptoms. People who are taking vitamins or herbs need to be very aware of any potential interactions with traditional medications. Discuss all medications and supplements you are considering with your movement disorders specialist. If you're on specific medications, certain foods can interfere with absorption.

How can I learn more about complementary therapies?

The National Center for Complementary and Alternative Medicine is a good source of published information about many complementary therapies. Contact the NCCAM at 888-644-6226 or visit http://nccam.nih.gov/

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