Deep brain stimulation (DBS) can reduce the intensity and frequency of muscle spasms associated with dystonia, but it isn’t a cure. A doctor will give people an idea of what to expect. DBS can be turned off or taken out if it’s not the best treatment.
Dystonia
When your muscles contract involuntarily, the condition is called dystonia. Dystonia causes a twisting or clenching of whatever body part is affected. For example, when you have a stroke, the affected arm and hand may be clenched and held in a strange position.
Dystonia can be very mild or very severe. It can make your life very difficult and this can lead to frustration, depression or anxiety.
See your doctor to treat your symptoms and talk over your frustrations.
Recently Answered
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1 AnswerA person who sees him or herself as a "Patient-Active" is someone who considers himself part of the fight for a meaningful life in spite of having a disorder, such as dystonia.
Being a "Patient-Active" is about feeling and acting empowered. Patient-Active is not just a descriptive term about how you choose to act as a person with dystonia. A Patient-Active is an actual person who opts for being more than a dystonia patient. It is your active participation in the choices you and your healthcare team make about treatment that can improve your quality of life and perhaps enhance the possibility of improvement. Choosing to be a Patient-Active is not one monumental decision, but rather a series of small incremental choices that help you regain a sense of control over your treatment and in your life in general.
This content originally appeared on the Dystonia Medical Research Foundation website at www.dystonia-foundation.org. -
1 AnswerPeripheral surgeries occur outside the brain and generally target the specific nerves and muscles affected by the incorrect messages from the brain. Dystonia symptoms occur when the body’s muscles receive faulty information from the brain, causing them to contract involuntarily. These faulty messages most commonly start in a part of the brain called the basal ganglia. These messages move over brain pathways to the spinal cord and from nerves to muscles.
Peripheral surgeries are generally used to treat focal dystonia. -
1 AnswerThe 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 dystonic contractions and spasms will also relieve pain. Botulinum toxin injections can be quite effective, and muscle relaxant medications may have the same effect.
If pain persists, over-the-counter pain medications such acetaminophen, ibuprofen and naproxen may be surprisingly effective, and should be tried first. Consult your healthcare provider 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; 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 affecting 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 and physiatry, might further specialize in pain management.
This content originally appeared on the Dystonia Medical Research Foundation website at www.dystonia-foundation.org. -
1 AnswerStress can worsen dystonia symptoms.
Regular relaxation and stress management can have a profound impact on your quality of life and general well-being. The goal is not to remove all stress from your life, but to rather to deal with it effectively by incorporating simple stress management practices into your daily or weekly routine. The most important part of reducing stress is to manage it before it becomes overwhelming. Aim to create a lifestyle where stress reduction and relaxation become a way of life.
Tips to help you manage stress effectively include:- Learn to identify stress.
- Make a conscious decision to worry less.
- Practice relaxation and visualization.
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1 AnswerThe constant movement and muscle contractions of dystonia can be compared to working out approximately 18 hours a day and for people whose symptoms don't stop during sleep, 24 hours a day. This can definitely result in fatigue and diminished stamina. Fatigue may be confused with lack of energy or motivation, which may be a sign of depression or other medical conditions. Adequate rest and supplementing sleep with restorative practices such as meditation or relaxation techniques are a mainstay of coping with fatigue for many people.
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1 AnswerFor 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 condition, treatment of Wilson's disease will also treat the dystonia. Categories of oral drugs used to treat dystonia include anticholinergics, benzodiazepines, baclofen, dopaminergic agents/dopamine-depleting agents and others.
This content originally appeared on the Dystonia Medical Research Foundation website at www.dystonia-foundation.org. -
1 AnswerHaving deep brain stimulation (DBS) is a life-long commitment that requires ongoing management. Maintenance may include battery changes (which consist of outpatient surgery) and ongoing programming adjustments. Hardware problems may occur. Rarely, individuals develop new movement disorder symptoms associated with the stimulation. Individuals with DBS must be mindful of situations that can interfere with the functioning of the DBS hardware. One example is exposure to magnetic fields, which includes certain medical MRI (magnetic resonance imaging) equipment. There may be restrictions in terms of certain activities, such as extreme or contact sports, that could damage the implanted hardware.
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1 AnswerRemission in dystonia happens only rarely. It was once believed that 10% of people with dystonia might have such a spontaneous remission. It is probably much less than that. More frequently, instead of a true remission, the severity of dystonic postures may be reduced for months or years in a small minority of patients. Nearly everyone has some degree of day-to-day fluctuation in the severity of his or her symptoms For a few, the fluctuation may be so much better and for such a long time that it seems like a remission. However, a careful exam will still reveal some involuntary postures. Those who do seem to have a true remission are likely to again have symptomatic dystonia sometime later.
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1 AnswerAlthough clearly stress does not cause dystonia, many people with dystonia have reported that their symptoms worsen in stressful situations. This worsening is temporary and resolves when the stressful situation has passed. Unfortunately, getting rid of all stress in life is not possible. Therefore, techniques which result in a lessening of the stressful feelings may be beneficial. Relaxation techniques can be of considerable help.