Dystonia is a movement disorder that causes symptoms such as uncontrollable twisting and jerky movements of the torso, head, limbs, or neck. Affecting approximately 300,000 people in North America of all ages, dystonia can be defined as generalized, focal, or segmental. Generalized dystonia is involuntary movements that occur in multiple areas of the body. Focal dystonia is when only one area of the body is affected. Segmental dystonia occurs when two or more adjacent areas of the body are affected.
Dystonia symptoms can vary from mild to severe and you may experience pain or disruption to your quality of life. The condition can disappear or lessen during sleep and can worsen with stress. While there is no cure for dystonia, medications can reduce symptoms and deep brain stimulation (DBS) may be an option for some patients.
FAQs About Dystonia
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Are the symptoms of dystonia the same for all people?
Dystonia can affect one or more different parts of the body. Dystonia symptoms often vary greatly by person and age. People with dystonia may have one or more of the following symptoms.
- Foot cramps
- One foot dragging
- Uncontrolled turning or pulling of the neck
- Handwriting that decreases in size
- Rapid, uncontrollable blinking
- Voice or speech difficulties
You and your family may only notice symptoms after a long period of exertion, stress, or fatigue. Over time, symptoms may become more widespread and easier to recognize.
What causes dystonia?
The causes of dystonia are not fully known. Some forms of dystonia are inherited. Experts believe that dystonia may originate from issues with the basal ganglia area of the brain, which is responsible for helping muscles contract.
Dystonia may be caused by other health conditions such as cerebral palsy, encephalitis, liver disease, and Huntington’s chorea. Sometimes two conditions interact to cause dystonia when neither one by itself would cause a problem; for example, medication and a brain injury. Dystonia may also be a symptom of another condition like Parkinson’s disease, stroke, or trauma.
What areas of the body can be affected by dystonia?
Dystonia typically affects the neck, head, limbs, or torso. Cervical dystonia results in involuntary movements of the head and neck. Dystonia can cause blepharospams, which are uncontrollable blinking or spasms of the eyelids. Orormandibular dystonia affects the tongue or jaw and can lead to drooling, slurred speech, or issues chewing or swallowing. Spasmodic dystonia impacts the voice box or vocal cords. Dystonia may also affect the hands or forearms and may only occur with repetitive actions, like writing, painting, playing an instrument, knitting, etc.
How is dystonia diagnosed?
Your doctor will perform a physical exam that may focus on the nervous and muscular systems. You may be asked questions relating to family and personal health history along with questions about injuries, illnesses, and stress.
In order to determine if you have dystonia, you may need to undergo lab tests or imaging studies to make a diagnosis and rule out other causes. These tests may include:
- CT or MRI
- CSF analysis
- Genetic studies
- Blood or urine analysis
How is dystonia treated?
While there may not be a cure for dystonia, there are a number of treatment options available. There is not one regular course of treatment – your care should be tailored to your specific diagnosis and dystonia symptoms. The goal of dystonia treatment is to lessen the symptoms of muscle spasms and awkward postures, helping you function with the fewest side effects possible.
Dystonia is frequently treated with medication as there are a number of drugs that improve dystonia symptoms. These medicines can be used alone or with others, depending on what combination works best for your diagnosis.
Another common treatment for dystonia uses Botox injections to block nerve signals that cause dystonia.
Therapy is also a common treatment for dystonia. Whether it’s physical, occupational, water, speech, or voice, these therapies help you gain greater control over your body.
Complementary therapies may also be recommended, including relaxation techniques, yoga, meditation, Pilates, or acupuncture.
Dystonia treatment often begins with the least invasive method, moving on to more complex surgical procedures, like deep brain stimulation (DBS), if symptoms do not improve. DBS for dystonia is approved by the FDA only under a Humanitarian Device Exemption (HDE) while research continues into the long-term effectiveness. However, early studies show impressive results. In one study, patients six months after receiving DBS surgery showed “substantial improvement in all movement symptoms (except speech and swallowing), the level of disability, and quality of life.”
What are risk factors for dystonia?
While there is no known cause of dystonia, the following risk factors have been linked to higher occurrences of dystonia:
- Medications like neuroleptics
- Brain injuries
- Nervous system injuries
- Bacterial, viral, or fungal infections
- Regular, repetitive, precise hand movements like those associated with being musicians, artists, or engineers
Can I treat dystonia at home?
Dystonia typically progresses over time, with symptoms becoming more noticeable and severe. While at-home remedies like reducing stress and fatigue and complementary therapies like acupuncture, meditation, and massage may help, most patients need dystonia treatment that requires care from a trained physician.
When should I see a specialist for dystonia?
If you are experiencing pain or regular interruption to your lifestyle, you should consult a dystonia specialist. Or, if you are currently receiving care from a physician but feel like your current line of treatment is ineffective or not meeting your goals, neurosurgeons at Neurosurgery One can review your case and offer insights into more dystonia treatment options, like DBS, that might be effective for you.