| Spasmodic Torticollis and You It�s been confirmed, you have been to a physician and he/she has observed your involuntary head movements and neck pain and now your diagnosis is Spasmodic Torticollis/Cervical Dystonia. Dystonia is characterized by the over activity of a muscle or group of muscles. It causes: 1. Involuntary movements and tremors 2. Sustained muscle contractions 3. Abnormal postures This neurological disorder has already changed your life. Now it�s time to take control and use some positive steps to have the best quality of life you can have with ST. 1) Become informed! Read everything you can about Spasmodic Torticollis/Dystonia. The more information you have, the better decisions you will make about your treatment. The choice of a neurologist is very important. Hopefully you can find one that specializes in Movement Disorders. Dystonia along with Parkinson�s Disease, Essential Tremor, and Tourette�s Syndrome is considered a movement disorder. There is a disturbance in the functioning of the basal ganglia, the movement center of the brain. Since you have ST, you will want to consult with your support organization to find a neurologist that is experienced in giving botulinum toxin injections. That is considered the most effective treatment for moderate ST unless you have antecollis (your head is pulled forward). The injections usually help with pain and head position for about 10 weeks. It works by blocking the release of acetylcholine, a neurotransmitter responsible for the activation of muscle contractions. You might ask the neurologist how many patients with dystonia they give Botox or MyoBloc to and if he/she uses EMG guidance. The EMG utilizes an electrode needle that records muscle activity. The areas with the most activity are where the Botox should be injected. Those things can make a positive difference in the effectiveness of the injections. For more information on Botox-see www.Botox.com or call 1-800-44-BOTOX Side effects of Botox can be weakness of the head, difficulty swallowing, injection site irritation, flu-like symptoms-these are all temporary. MyoBloc side effects are dry mouth, head weakness, and local site irritation. Using ice to the site and analgesics help. Learn about any medications you will be taking. You should know about side effects, best times to take them, etc. See the table of commonly used medications for dystonia following this article. Remember drugs don�t usually work overnight. It may take a while for an effective level to build up in the bloodstream. Sometimes the dose has to be adjusted or different combinations of medications are tried. Keep in mind that not everyone reacts the same way to a medication. What might work for someone else might not for you. 2) Start putting your health as first priority. This means eating well, possibly taking a multivitamin supplement, treating any other medical conditions you have, getting enough rest, and exercising at least three times a week. All of these measures help to keep you fit and lessen the stress in your life. Stress does seem to make dystonic symptoms worse. Walking, swimming, and riding a stationary bike are all good exercises for someone with ST. You should avoid upper body weight lifting since those muscles are already tight from constant contractions. You might want to consult a physical therapist or NSTA�s physical therapy tape for stretching and range of motion exercises for your neck. Keeping those muscles flexible can mean the difference in preventing contractures, where the neck muscles lose their mobility. Caffeine, sugar, aspartame, and chocolates can sometimes increase dystonic movements so avoiding those substances might help. 3) Learn relaxation techniques like proper deep breathing, visualization exercises, and possibly yoga/meditation. Those of us with dystonia tend to be more anxious due to our overactive nervous systems. Learning how to do deep abdominal breathing to relax can decrease your pain and anxiety level. We can learn to focus on a calming word, prayer, phrase, soothing music, peaceful nature scene or our breathing. The more we practice these techniques; they will become a natural habit. This also helps with insomnia. Trying to go to sleep is difficult for us with the constant movement of the head. Sometimes cervical or buckwheat pillows help. Some people use a soft cervical collar but it is wise to check with your neurologist first. If you chose to wear one, limit it�s use as it can result in the weakening of some neck muscles while the others are overactive. 4) Be candid and open about your disorder and the problems it causes you. Give printed information from your association to your employer and talk with your family, friends, and fellow employees. If accommodations in the workplace could help you, talk to your employer, sometimes they will pay for them. Examples are an OBUSforme backrest ($79.95 NSTA) to support your back and neck, speakerphone, alternate arrangement in your work area, frequent breaks to rest, and shorter working hours. Possibly even working out of your home could be an alternative. One of the most helpful things for people with dystonia is frequent rest periods and changes in position. The ADA (Americans with Disability Act) prevents discrimination and. requires employers to make accommodations for your disability. Also check on availability of short and long term disability insurance in case it�s needed in the future. It is wise to keep up with all your medical records since filing for Social Security Disability might also be an option. Important numbers: ADA information: 1-800-232-9675 Job Accommodation Network (JAN) 1-800-526-7234 5) Listen to your body! If you are doing something that is causing pain, STOP! Put ice or heat on the area and rest it for at least twenty minutes. Avoid long phone calls, extended computer use without a break, driving without support for your neck or for long periods. You might want to invest in oversize mirrors for your car so it is easier to see objects surrounding you. Keep a pain diary for a while and write down activities that bother your neck and your pain scale (0-10). Sometimes it helps to find a pattern of activities that cause more pain/spasms so you can avoid those if possible. 6) Get counseling if indicated. Most people with chronic illness suffer from depression at some point. Sometimes an anti-depressant medication is helpful. An appointment with a psychotherapist when you are first diagnosed to help you cope with the changes in your life and the feelings that you are having is a good idea. If you should constantly feel hopeless or consider harming yourself, you should immediately seek psychological help. 7 )Join a support network. Find out if there is a NSTA or Dystonia support group near you and go to meetings. If not, see if there is a contact person that you can talk with. The Internet has a great support network; there are several message boards. Go to your library and get hooked up if you don�t have your own computer. NSTA has the toll free 800-487-8385 phone number to find out information and get support. Get the quarterly newsmagazine and go to the symposiums. There is nothing better than the fellowship of other people with the same challenges and feelings. You can share positive ideas and information. There is scientific proof that people in support groups are much healthier. 8)Accept yourself as you are. 9) Play! Find a hobby if you don�t already have one. If the one you already have aggravates your dystonia, find a new one. Maybe creative writing, painting, pottery, or listening to audio books is for you. Gardening is usually relaxing as long as you pace yourself. There are many people with dystonia that enjoy bowling, golf, and even tennis. Most of the time our symptoms go away when we are concentrating on something we enjoy. 10) Laugh loudly and often, it�s good for the soul. Enjoy the beauty of the world around us. Watch sunrises, sunsets, birds, squirrels, and children at play. Love life and be thankful. Medications that are used to treat dystonia: Benzodiazepines-used to treat anxiety, muscle spasms, and promote rest. 1. Clonazepam (Klonopin) 2. Diazepam (Valium) 3. Lorazepam (Ativan) All of these drugs can cause drowsiness and dizziness. They also could cause blurring of vision, changes in behavior, weakness, fatigue, and possible nausea. Skeletal Muscle Relaxants 1. Lioresal (Baclofen) 2. Cyclobenzapine (Flexeril) 3. Carisoprodol (Soma) 4. Zanaflex These drugs also cause drowsiness and possibly urinary frequency. Your neurologist may want to check liver enzyme lab studies frequently. Anticholinergics-block acetylcholine 1. Trihexyphenidyl (Artane) 2. Benztropine (Cogentin) 3. Ethopropazine (Parsidol) These drugs cause dry mouth (suck on candy or gum to help). They also can cause urinary hesitancy or frequency, blurred vision and possible confusion or difficulty concentrating. Dopamine Stimulation 1. Levodopa (Sinemet) 2. Bromocriptine (Parlodel) 3. Pergolide (Permax) 4. Pramipexole (Mirapex) 5. Requip (Ropinerol) These drugs can cause a change in blood pressure, try to avoid standing up suddenly. Dopamine Depletion 1. Tetrabenazine (Nitoman) 2. Reserpine (Ser-Ap-Es) These can change blood pressure. |