Dystonia is an involuntary muscle contraction that causes awkward, often painful postures. Examples include the neck turning to one side, the toes curling under or a foot turning inward. Dystonia can be a symptom of Parkinson's or a disease itself, without any other symptoms. It is the third most common movement disorder. Here we discuss dystonia in Parkinson's.
Potential Parkinson's Symptom
Not everyone with Parkinson's gets dystonia, but it can happen at any point in the course of disease. It may be more likely to happen in the morning, before the first dose of medication, or during the day, before the next dose of medication is scheduled. During these times, other Parkinson's symptoms such as tremor or stiffness are likely to be present, too. This is called "off" time.
Dystonia is more common in people who are younger at diagnosis, less than 40 or 50 years old. Sometimes younger people even develop dystonia when exercising (while running, the foot turns in or toes curl under, for example) as their first symptom of Parkinson's. In these cases, a person could be misdiagnosed with a condition other than Parkinson's until other symptoms such as tremor, slowness and stiffness appear.
Several Treatment Options
Depending on what time of day and where in your body dystonia occurs, you may consider different treatments. For example, if dystonia comes on before your next dose of levodopa throughout the day, your doctor may recommend changing how much or how often you take levodopa. Or if dystonia only affects your toes at night, you might consider botulinum toxin (Botox) injections to temporarily relax the overactive muscles and ease dystonia. Like all treatments, management of dystonia is individualized, but your doctor may suggest:
- Changing dose or schedule of levodopa (taking less medication more often, for example) or changing to a longer-acting levodopa formulation,
- Adding or changing to another Parkinson's medication to prevent dystonia (Read about Parkinson's medications),†
- Going to physical therapy for stretching and strengthening exercises,
- Taking a drug, such as a muscle relaxant, specifically to target dystonia,
- Considering deep brain stimulation, in some people.
There's no one-size-fits-all treatment, so it's important to work with your doctor to find the best regimen for you.
Specific Dystonias in Parkinson's
In Parkinson's, dystonia most commonly affects the leg, foot or toes. And it most commonly occurs during times when other Parkinson's symptoms such as tremor, slowness or stiffness are present. But dystonia can affect other body parts more continuously:
In the eyes, dystonia may cause increased blinking or even keeping the eyes closed; people may be sensitive to light or feel irritation in the eyes; it can interfere with reading, watching television or driving. Treatment typically is botulinum toxin (Botox) injections into muscles around the eyes. Other options may include oral medications or eyelid "crutches" to hold the eyelids open, and drops for eye irritation.†
Dystonia may cause the head and neck to tilt forward toward the chest. This can lead to neck pain, interfere with vision and walking, and worsen speech and swallowing problems. Management may include wearing a soft cervical collar, going to physical therapy, taking oral medications or having botulinum toxin injections.†
In the torso, dystonia may cause a person to lean forward, sideways or backward. This interferes with walking and balance. Treatment may include physical therapy, oral medications, botulinum toxin injections, and, in some patients, surgical procedures such as deep brain stimulation (DBS) or spinal fusion. A cane or walker may help to decrease the risk of falls.