Dystonia

Have you ever experienced a painful cramped foot or curled, clenched toes as part of life with Parkinson's? These symptoms can often be a tell-tale sign of dystonia — sustained and often painful muscle twisting, spasms and cramps. Dystonia can be an early symptom of PD, or it can develop later, as a side effect of levodopa.

People with Parkinson’s commonly experience dystonia as a cramp in the foot that causes the toes to curl and stay clenched. In fact, in some people, a foot dystonia induced by walking or running may be one of the very first signs of the illness.

More commonly people who are being treated for PD complain of painful dystonia of the foot on the more severely affected side. This painful cramp usually goes away after the first dose of PD medications. Less commonly in treated patients, dystonia can affect other body parts and come and go throughout the day.

Dystonia can affect other parts of the body too. It causes forceful twisting movements that, for example, can draw a person’s arm behind their back, or pull the head to the side or toward the chest. These movements are different from the flowing, writhing movements of dyskinesia, which are not painful.

Although people with PD sometimes have dystonia, it also is its own movement disorder — people can have dystonia without having PD. Whether dystonia is part of PD or not, it is caused by changes in an area of the brain called the basal ganglia, and is often treated with the same medications.

Common Symptoms

  • Pain. The twisting and cramping of muscles in dystonia are among the most painful symptoms experienced by people with PD.

Parts of the body affected by dystonia:

  • Arms, hands, legs and feet: involuntary movements and spasms.
  • Neck: may twist uncomfortably, causing the head to be pulled down, or to one side. This is called cervical dystonia or spasmodic torticollis.
  • Eyes: muscles around the eyes may squeeze involuntarily, leading a person to blink too much or to have difficulty opening the eyes.
  • Vocal cords and swallowing muscles: a person’s voice may sound strangled, hoarse or breathy.
  • Face and jaw: the jaw may open or close forcefully or there may be grimacing of the face.

Therapies

How can a person with PD ease the effects of dystonia? Discuss your symptoms with your doctor to find the best therapy.

As with any intermittent symptom in PD, it is critical to establish whether it is related to drug levels in the brain that are high or low. Your doctor may ask you to stay in the office for a few hours to observe your symptoms and how they relate to your PD medications. He or she may also ask:

  • Do you have dystonia symptoms when levodopa (Sinemet®) is at its peak effect (“on” period)?
  • Do symptoms happen when medication is wearing off or in the morning before the first dose of medications?

Painful dystonia early in the morning may be relieved by:

  • The first dose of PD medication, whether levodopa (Sinemet®) or a dopamine agonist (for example, Mirapex® or Requip®).

For painful dystonia that develops with “wearing off”:

  • With your physician’s guidance, PD medications may be adjusted to make “off” periods shorter.

In severe cases:

  • The injectable drug apomorphine can provide short-term relief that begins within minutes.
  • Deep brain stimulation may be recommended. This treatment requires surgery to implant electrodes in the brain. Current from the electrodes can improve the brain’s ability to control body movements.

Dystonia while PD medications are “on,” or working:

Some people experience dystonia as a side effect of PD medications. Depending on a person’s specific case, treatment may be to:

  • Adjust the amount of the current dopamine medication.
  • Change the dopamine medication or add other medications that affect medication response.
  • Add another medication specifically for dystonia.

Tips for Living with Dystonia

Pain from dystonia may be the most severe pain experienced by people with PD. Both pain and cramped postures affect a person’s quality of life. To cope with dystonia:

  • Learn about dystonia and treatment options, and work with your doctor to find the best treatment for you.
  • Connect with others who are living with PD and dystonia through support groups, online groups and organizations like PDF.
  • If needed, seek help for depression and anxiety, which are common and debilitating PD symptoms, and can be exacerbated by pain.
  • Find ways to pursue activities that you enjoy, and to plan and pace yourself for social, physical and creative activities.
  • Treat your body well by getting enough sleep and exercise, and by eating nutritious meals.