Dystonia is a neurological disorder that affects motor function. People with this disorder typically experience shaking and repetitive involuntary muscle movements that can contort the body into uncomfortable positions. Dystonia is triggered by faulty brain signals.
While there are several treatment options available today, it might take time to figure out which one works best for you.
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What Is Dystonia?
Dystonia is a movement disorder, meaning it affects parts of the brain that control body movement, or motor function. It causes involuntary muscle spasms, known as contractions, which can occur repeatedly and twist the body into painful positions.
Dystonia can affect any part of the body, including:
- Arms, hands, and fingers.
- Eyes and eyelids.
- Face and jaw.
- Legs, feet, and toes.
- Limbs and torso.
- Neck and shoulders.
- Vocal cords.
While dystonia affects the nervous system with physical symptoms in the body, it is actually a brain condition. The brain is being given faulty signals to move the body’s muscles in involuntary ways. Dystonia comes in many forms and originates from different areas depending on the body part affected, the root cause, and the severity of the condition.
What are the types of dystonia?
There are many different types of dystonia, depending on the area of the body that is affected and the underlying cause. Some of the most common types of dystonia may be referred to as:
- Cervical dystonia — Symptoms are centered around the neck and shoulder area.
- Drug-induced dystonia — Some medications can cause dystonia as a side effect.
- Generalized dystonia — Symptoms can happen in multiple areas around the body, mostly in the limbs and torso.
- Hand dystonia — Symptoms occur in the forearms, hands, and fingers.
- Laryngeal dystonia — Symptoms affect the vocal cords.
- Lower limb dystonia — Symptoms occur in the legs, feet, and toes.
- Oromandibular dystonia — Symptoms occur in the face, jaw, and tongue.
- Trauma-induced dystonia — Injury to the head or other body parts can trigger dystonia symptoms.
You may also hear doctors categorize dystonia as primary, secondary, or dystonia plus to help determine the root cause.
- Primary dystonia — This means that dystonia is the main condition causing symptoms.
- Secondary dystonia — Occurs when dystonia is actually the symptom of a different underlying condition (such as brain tumors, infections, other health conditions, or a certain medication).
- Dystonia plus — This type of dystonia is for neurological conditions in which dystonia is a main symptom, but not the only one.
How common is dystonia?
Some experts believe dystonia is an underdiagnosed condition with many more cases than reported, but research shows about 300,000 people currently live with the condition in the United States.
What causes dystonia?
In about half of all cases, dystonia is a symptom of a disease or is caused by exposure to toxins or certain drugs. In most other cases where dystonia is not linked to a specific illness or problem, it is thought to have a hereditary link.
This condition may be related to a problem in the brain’s basal ganglia, a group of structures involved in coordination and movement.
Acquired dystonia could be the result of:
- Brain trauma.
- Oxygen deprivation.
- Reactions to drugs.
- Stroke.
- Tumors.
Many cases of dystonia are temporary, such as those brought on by medication. Although there is no cure for dystonia, several treatment options can help control symptoms and allow people to live independently.
Dystonia risk factors
You may be at a higher risk for dystonia if you:
- Are a woman.
- Have a family history of the condition.
- Have another health condition that may cause dystonia, such as Parkinson’s or Huntington’s disease.
Complications of dystonia
While dystonia symptoms and complications vary depending on the type of severity, you may experience:
- Mental health struggles, such as anxiety and depression.
- Pain in the muscles that are constantly involuntarily contracting.
- Physical disabilities that prevent daily life.
- Trouble moving your face or jaw, speaking, or swallowing.
How can I prevent dystonia?
While there is no way to completely reduce your risk or prevent dystonia, you can practice healthy life habits that can help prevent conditions that cause secondary dystonia, such as:
- Eating a healthy diet.
- Maintaining a healthy weight.
- Staying physically active.
- Treating infections quickly, especially eye and ear infections.
- Wearing helmets and safety equipment to prevent traumatic brain injuries.
What Are the Signs and Symptoms of Dystonia?
Dystonia symptoms often start in childhood or early adulthood and can range from mild to severe. Dystonia can affect a single muscle, a group of muscles (such as the arms or legs), or the entire body.
Symptoms of dystonia include:
- Body parts twisting into involuntary and painful positions.
- Difficulty controlling hands or poor handwriting.
- Difficulty speaking.
- Foot cramps.
- Foot-dragging.
- Involuntary and constant muscle spasms and cramps.
- Repetitive movements.
- Shaking (tremors).
- Uncontrollable blinking.
These involuntary movements can feel like electric shocks or intense muscle cramps. You may find that they start in one area of the body and then spread to a neighboring area. They may worsen with caffeine and alcohol intake or during times of stress.
Depending on the type of dystonia, you may also experience other related symptoms, such as:
- Eyelid spasms.
- Strained or whispering voice.
- Teeth grinding.
When should I see a doctor about my dystonia symptoms?
If you are experiencing any of these symptoms, even if they are mild, it is best to schedule an appointment with your primary care provider. Diagnosing dystonia early can help reduce symptoms faster.
How Do You Diagnose Dystonia?
Diagnosing dystonia can sometimes be tricky, as the symptoms may be related to another underlying condition, medication prescription, or be a part of a different condition altogether. For this reason, your doctor may need to run several tests to rule out other conditions.
First, your doctor will ask you about your symptoms, health history, and family history. They will want to know if anyone else in your family has been diagnosed with dystonia in the past and what medications you are currently taking, as these factors are linked to the condition. They may perform a physical exam in the area(s) of symptoms.
To determine what form of dystonia you have, four factors will be taken into consideration:
- Age when symptoms began.
- Body part(s) affected.
- Cause of the dystonia, if known.
- Symptoms of other neurological disorders.
Tests to diagnose dystonia
Next, you can expect your doctor to run some tests to help diagnose dystonia.
These may include:
- Blood tests — Can detect various health conditions related to dystonia, such as toxins in the bloodstream and a weakened immune system.
- Brain scan — To get a clearer picture of where the brain is misfiring information.
- Urine tests — Are also helpful in detecting other health conditions in the body.
- Various imaging and diagnostic tests — Depending on your symptoms and health history, your doctor may want to use other imaging and diagnostic tests to look for underlying conditions or a formal diagnosis.
Dystonia prognosis
Because dystonia is so varied in its severity, causes, and symptoms, it’s impossible to generalize the outlook. For some people, symptoms clear up with treatments, or the underlying condition is treated, and the symptoms are short-term. For others, dystonia is a lifelong condition that can worsen over time.
Although dystonia can be a chronic condition and the symptoms can be severe, most dystonias do not impact a person’s intelligence, cognition, or life span.
Your health care provider and care team are the best resources for information on prognosis and expectations.
How Do You Treat Dystonia?
Dystonia treatment options depend on the severity of symptoms and take into consideration any related conditions you have. If you have been diagnosed with secondary dystonia or dystonia plus, your doctors will want to uncover the root condition causing your symptoms. For primary dystonia, the following treatment options may be used.
Medication, therapy, and complementary treatments for dystonia
Medications and physical therapy, including voice therapy, are often the first treatment approaches for dystonia.
Drugs that help one person may not help another, so your doctor will work with you to determine the formulation best suited to your case.
In addition to oral medication, injection of botulinum neurotoxin into muscles affected by dystonia may also be used.
Other helpful treatments may include:
- Relaxation exercises
- Gentle exercise, including yoga.
Surgery for dystonia
In order to limit or stop involuntary muscle spasms and lessen pain, doctors can operate:
- At the site of dystonic symptoms (such as muscles or nerves in the legs).
- In the basal ganglia of the brain, where the signals to move the body originate.
In this type of surgery, selected nerves or abnormal brain tissue are destroyed and/or removed.
Deep brain stimulation for dystonia
UPMC is a leader in treating movement disorders, such as dystonia, with deep brain stimulation (DBS), and now offers both standard and MRI-guided DBS, depending on your specific condition.
DBS is a surgical option that uses a battery-powered implanted medical device to deliver electrical stimulation to targeted areas of the brain that control movement. This blocks the neuronal signals that cause abnormal movement.
The device is implanted in the chest, with wires that connect to electrodes in the brain. Using a remote control, the stimulation can be adjusted to interrupt the abnormal brain activity and abnormal movements.
DBS provides significant benefits in approximately 70% of people who undergo the procedure.
