Dyskinesia

Dyskinesia refers to involuntary, uncontrolled movements that can affect different parts of the body. While often linked to Parkinson’s disease treatment, it’s not a symptom of the disease itself, but rather a complication that can develop from certain medications.

Table of contents

• What Is Dyskinesia?
• Causes and Risk Factors
• Types of Dyskinesia
• Who Develops Dyskinesia and When?
• Treatment Options
• Living With Dyskinesia

What Is Dyskinesia?

Dyskinesia consists of involuntary, erratic movements that a person cannot control. These movements can appear in the face, arms, legs, or trunk of the body. They are often described as fluid and dance-like, but they can also cause rapid jerking or slow, extended muscle contractions.^[1]

The movements associated with dyskinesia can take many forms. You might sway, wriggle around, or bob your head. Some people experience writhing movements, while others have movements that look like fidgeting or body swaying.^[7][11] These movements can affect just one body part, such as an arm or leg, or they can involve the entire body.^[11]

It’s important to understand that dyskinesia is different from the tremors that occur with Parkinson’s disease. Dyskinesia mainly happens when other Parkinson’s symptoms, like stiffness and tremors, are actually under control.^[7]

Causes and Risk Factors

For people with Parkinson’s disease, dyskinesias are not a symptom of the disease itself. Rather, they are a complication from some Parkinson’s medications.^[1] The condition most commonly develops after treatment with levodopa (a medication that replaces dopamine in the brain), which is the most commonly prescribed Parkinson’s medicine.^[1]

No one knows exactly what causes dyskinesia, but it may have something to do with different chemicals the brain makes, including serotonin, glutamate, and dopamine.^[7][11] When you have Parkinson’s disease, brain cells that make dopamine (a chemical messenger in the brain) are lost, so dopamine levels decrease. Levodopa temporarily restores dopamine, but because the medication has to be taken several times per day, dopamine levels rise and fall.^[7][11]

These fluctuating dopamine levels, combined with the continued loss of dopamine-producing brain cells, make it impossible to keep a steady level of dopamine in the body. This may play a big role in causing dyskinesia.^[7]

Several factors can increase your risk of developing dyskinesia:

• Taking levodopa in high doses or for a long time
• Being younger when diagnosed with Parkinson’s (before age 40)
• Having a specific type of Parkinson’s where movements are stiff and slow
• Experiencing high levels of stress^[7]

Younger people with Parkinson’s disease are thought to develop dyskinesias earlier in response to levodopa treatment.^[1]

Types of Dyskinesia

Peak Dose Dyskinesia

The most common kind of dyskinesias are called “peak dose.” These occur when the concentration of levodopa in the blood is at its highest, usually one to two hours after you take the medication. This typically matches up with when the medications are working best to control motor symptoms. In the earliest stages of Parkinson’s, these movements are usually not bothersome, and you may not even notice them.^[1]

Diphasic Dyskinesia

Sometimes, instead of at peak dose, dyskinesias can occur as you are just beginning your “on” period (when medication is working) and again as you begin to turn “off” (when medication effects wear off). This is known as diphasic dyskinesia, or the dyskinesia-improvement-dyskinesia syndrome.^[1]

Who Develops Dyskinesia and When?

Dyskinesias usually begin after a few years of treatment with levodopa.^[1] Most people are on levodopa for five to ten years before they notice dyskinesia.^[7] It usually starts when Parkinson’s symptoms are under good control, which doctors call being “on” with dyskinesia.^[7][11]

About half of people who take levodopa develop dyskinesia at some point.^[7] The severity can vary greatly from person to person. Dyskinesias may be mild and not bothersome, or they can be severe. Most people with Parkinson’s prefer to be “on” with some dyskinesias rather than “off” and unable to move well. However, for some people, dyskinesias can be severe enough that they interfere with normal functioning.^[1]

At first, dyskinesia may be so mild you hardly notice it. For some people, it’s never much of a problem. But severe symptoms can get in the way of your job, social activities, and daily life.^[7] Dyskinesia tends to occur most often during times when other Parkinson’s symptoms are well controlled. Feeling stressed or excited also can bring out dyskinesia.^[11]

Treatment Options

Dyskinesias can often be alleviated by adjusting levodopa or other dopaminergic medications (those that influence dopamine-producing parts of the brain).^[1] If you experience bothersome dyskinesia, you can discuss several treatment options with your doctor:

Medication adjustments: Your doctor may change the dose and timing of levodopa so you get enough in each dose to control your symptoms but not too much that it causes dyskinesia.^[11]

Different formulations: Switching to a different form of levodopa, such as extended-release versions or gel infusions, may help. These medications aim to keep dopamine levels steady to control symptoms and limit dyskinesia.^[11]

Additional medications: Adding amantadine to your treatment plan may help. This medication works on the glutamate brain chemical system to lessen dyskinesia.^[11]

Surgical options: For some people, deep brain stimulation (a surgical procedure) may be considered. This is not an option for everyone, but it may help those who’ve had Parkinson’s for several years and have tried other treatments without success.^[11]

Living With Dyskinesia

Living with dyskinesia involves adapting to changes while maintaining quality of life. Many people say they prefer dyskinesia to the stiffness or decreased mobility that occurs when their medication isn’t working. Others, though, have painful dyskinesia or movements that interfere with exercise, social activities, or daily tasks.^[11]

Movement disorders like dyskinesia tend to worsen under stress. Any type of stress—whether physical, medical, surgical, or psychological—can make dyskinesia worse. If you’re experiencing acute stress, such as being the center of attention during a presentation, whatever movements you have are likely to be more pronounced.^[12]

Building a strong support system is important. This includes working with your healthcare team and connecting with other people who have dyskinesia. There are many resources available, including support groups and online communities, where you can share experiences and learn practical tips from others managing the condition.^[12]

Keeping detailed records of your symptoms and daily activities can help you identify triggers and track treatment progress. Some people discover they can use certain actions or sensory tricks to reduce their movements. For example, sucking on a straw or toothpick may reduce tongue movements for some people.^[12]

Taking care of your overall well-being can also help manage dyskinesia. Regular exercise, particularly low-impact activities like yoga or swimming, a balanced diet, and stress management techniques such as meditation or deep breathing can all support better symptom control.^[13]

It’s important to stay informed about your condition and communicate openly with your healthcare providers about your needs and concerns. Every step forward in managing your symptoms is a victory, and with the right support and treatment, living a fulfilling life with dyskinesia is possible.^[13]