Dyskinesia involves erratic, involuntary movements of the face, arms, legs, or torso that can occur in people who use levodopa for Parkinson’s disease (PD). Dyskinesia is distinct from the motor symptoms of Parkinson’s disease, according to Dr. Sarah O’Shea, an assistant professor of neurology and movement disorders neurologist at the Icahn School of Medicine at Mount Sinai in New York City.

“Instead of the shaking — the low-frequency, high-amplitude tremor of Parkinson’s disease — or the stiffness and the slowness, what they’ll experience is a very fluid, fast movement. They almost appear dancelike,” she said.

Learn more about what causes dyskinesia and how to manage this symptom.

What Causes Dyskinesia?

People with Parkinson’s disease lose brain cells that produce the chemical dopamine. Levodopa is used to increase levels of dopamine in the brain. This helps relieve Parkinson’s symptoms like tremor or stiffness.

Dyskinesia can be a side effect of levodopa. It most often occurs in people with more advanced Parkinson’s disease and is linked to levodopa treatment.

Not everyone with Parkinson’s will develop dyskinesia. “We’re not entirely sure why dyskinesia occurs in people with PD,” Dr. O’Shea said. One potential explanation is related to the fluctuations in dopamine levels that occur when someone with Parkinson’s takes levodopa, she said.

People diagnosed with early-onset Parkinson’s disease, or Parkinson’s before age 50, seem to be at greatest risk of dyskinesia. A study from The Scientific World Journal suggests that sex, disease duration, and disease severity may also affect risk.

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When Does Dyskinesia Occur?

“Usually, dyskinesia occurs in the ‘on’ state, when your levodopa is working and the most effective, and you’re less rigid with less tremor,” Dr. O’Shea said. This is called peak-dose dyskinesia.

“More rarely, diphasic dyskinesia can also occur,” Dr. O’Shea said. Diphasic dyskinesia can occur when levodopa starts to take effect and again as it wears off.

What Members Are Saying About Dyskinesia

“I start to feel dyskinesia about a half hour to an hour after my morning dose.”

“Mine hits whenever the meds are wearing off and can last up to two hours a stretch.”

“My symptoms are worse in the afternoon and evening (since I’ve already ingested more doses of meds).”

What Factors May Affect Dyskinesia?

Members report that fatigue, anxiety, and stress can affect dyskinesia. “When I’m in an environment that makes me uncomfortable, anxious, or stressed — or have a lack of sleep — it sets off my symptoms,” one member shared.

“My husband gets symptoms when he’s overstimulated, on the high or low end of his emotions, or in hot or cold temperatures,” another said.

A third member connected their symptoms to the weather: “My dyskinesia has been driving me crazy lately. I think it’s all the rainstorms we’ve been having.”

How Does Dyskinesia Affect Members’ Daily Activities?

Moderate to severe dyskinesia can disrupt normal functioning and affect daily life. Here are some areas that have been affected for members of MyParkinsonsTeam.

Sleep

People with Parkinson’s disease often have trouble sleeping. Poor sleep is also associated with dyskinesia. “My legs jerk as I’m nodding off to sleep. Sometimes it feels as if my whole body is being lifted off the bed,” one MyParkinsonsTeam member said.

“I thrash about violently and make a strange noise like ‘The Exorcist’ that can last all night,” another shared.

Nocturnal movements can affect partners, too: “I sleep very lightly for fear of being hit, kicked, and screamed at by my husband. Sometimes, I go into another room because it’s just not safe to stay.”

Another member with a similar issue noted, “Sadly, we can no longer sleep in the same bed.”

About half of people with Parkinson’s disease have rapid eye movement (REM) sleep behavior disorder, which can cause people to act out their dreams by talking, shouting, or moving during sleep. This sleep disorder is different from dyskinesia.

If sleeping has become unsafe for you or your partner, talk with your doctor.

Household Chores

Some members use dyskinesia to their advantage. “I keep busy when I’m affected by dyskinesia, but my family thinks I’ve gotten obsessed with housekeeping,” said one member.

Another member mentioned that doing chores can be risky: “Not only do I tend to drop things, but uncontrolled jerks often cause me to hit a wall, chair, or table while doing housework.”

Driving

Driving with dyskinesia can also be dangerous, according to members of MyParkinsonsTeam. “The scariest time for my dyskinesia is when I get an unexpected jerk while driving,” said one member. “It can jerk me out of the center of my lane.”

Weight Loss

Because dyskinesia causes people to move around so much, it can sometimes cause weight loss. Several members noted that they’ve lost weight since dyskinesia started:

• “I have a huge problem with weight loss and have been told it’s from the dyskinesia.”
• “Weight loss happens if you never stop moving 24/7.”
• “My dyskinesia was so bad, I was moving nonstop and losing weight. If I lose any more, I’ll have to tie myself to the weights instead of lifting them.”

Living Alone

When dyskinesia first begins or is generally mild, it may go unnoticed — particularly among people who live alone.

“I don’t notice the dyskinesia until someone puts their hands on me to stop me from moving. Unfortunately, I live alone, so I don’t always notice these changes,” one member of MyParkinsonsTeam said.

Another commented, “Living alone makes it more difficult to monitor. I try to notice small changes and write them down in a journal with date, time, frequency, and what happened, to share with my doctor and neurologist.”

Dr. O’Shea echoed the recommendation to track symptoms. “Keep a diary of your Parkinson’s symptoms and medication-administration times,” she said. “For example, if you record that you experienced dyskinesia two hours after taking levodopa, rather consistently, it can make it a lot easier for you to discuss these symptoms with your doctor and therefore make it a bit easier for them to treat the movements.”

How Is Dyskinesia Treated?

Your healthcare team may consider several options to help manage dyskinesia.

Adjust the Dose of Levodopa

“Dyskinesia is typically treated by adjusting your levodopa dose or frequency,” Dr. O’Shea said. “The goal is to make the administration and therefore levodopa absorption as smooth and continuous as possible to reduce dyskinesia.”

One option is reducing the amount of levodopa in each dose or taking smaller doses more frequently, Dr. O’Shea said. Your healthcare provider may consider different formulations of levodopa, such as long-acting or controlled-release levodopa.

“When my doctor lowered the dose of levodopa/carbidopa (Sinemet), the dyskinesia disappeared,” wrote one MyParkinsonsTeam member.

“We reduced my wife’s dose, and the dyskinesia virtually disappeared,” another said.

Add Additional Medications

“Neurologists may also consider adding adjunct medications, such as amantadine, as these can more directly treat dyskinesia,” Dr. O’Shea said.

Gocovri, an extended-release formulation of the drug amantadine, is approved by the U.S. Food and Drug Administration (FDA) to treat levodopa-induced dyskinesia.

Try Deep Brain Stimulation or Levodopa Infusions

Some people may consider deep brain stimulation surgery or infusions of a formulation of levodopa/carbidopa called Duopa to treat motor fluctuations, Dr. O’Shea said.

“These are by no means the first line in treating dyskinesia,” she added. Although Duopa may help some people with advanced Parkinson’s manage motor fluctuations, it can cause or worsen dyskinesia in some cases.

Lowering dosages of levodopa and other Parkinson’s medications can have downsides for some MyParkinsonsTeam members.

“I have less head movement but more hand tremor. It’s a trade-off,” one member said.

“I’m having very little dyskinesia, but the tremors are bad. There’s no happy medium, but dyskinesia is worse,” another member said.

“Relief from dyskinesia comes at a cost because the lower dosage causes an increase in other movement issues, but the relief is worth it,” summed up one member.

How Can You Prevent Injuries From Dyskinesia?

Pain isn’t typically associated with dyskinesia, but involuntary movements can raise the risk of injury for people with Parkinson’s disease and those around them. MyParkinsonsTeam members have reported hitting their arms or legs against walls or sharp objects and dropping hot liquids.

Try these strategies to prevent falls and other accidents that may occur because of involuntary movements:

• Add cushioning to sharp corners of walls or furniture.
• Remove loose rugs or other trip hazards from your floors.
• Sit down while preparing food, folding laundry, or doing other tasks around your home.
• Keep loose, heavy, and breakable items away from the -edges of furniture.
• Break time-consuming tasks into short, manageable steps.
• Ask for help if involuntary movements make a task feel unsafe.
• Avoid using knives or other sharp objects during dyskinesia episodes.

It may also help to practice safe movement strategies with a physical therapist who can provide personalized guidance.