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3 Things To Know About Dyskinesia
00:00:04:13 - 00:00:31:02
Dr. O'Shea
My name is Dr. Sarah O'Shea, and I'm a neurologist and an assistant professor of neurology at Columbia University Irving Medical Center in New York-Presbyterian Hospital. Dyskinesias, just to define, with these are first are involuntary erratic writhing movements of the face, arms, legs, or trunk. These could occur in people living with Parkinson's disease, and we're not entirely sure why dyskinesias occur in people with PD,
00:00:31:04 - 00:00:59:07
Dr. O'Shea
but what we do know, however, is that over time, brain cells producing the chemical dopamine are lost in individuals living with PD, and therefore, the dopamine levels drop. We replace this dopamine with medications such as levodopa, however, given how long these medications last in the brain or their half-lives, these need to be given several times per day, and therefore, the levels are always fluctuating and paired with the loss of dopamine cells being lost over time,
00:00:59:09 - 00:01:30:22
Dr. O'Shea
the brain does not have a constant steady state of dopamine levels. And so the thought is that this pulsatile dopamine level contributes to the onset of states of what we call too much movement or hyperkinetic movements, and these are dyskinesias. Usually, dyskinesias occur in the on state when your levodopa is working in the most effective. With dull notices instead of the tremor, the shaking, the low frequency, high amplitude tremor of Parkinson's disease, or the stiffness and the slowness of Parkinson's disease,
00:01:30:24 - 00:01:57:02
Dr. O'Shea
what they'll experience instead is a very fluid, fast movement. It's very different than this rhythmic kind of shaking movement you see with the tremor. This is a nonrhythmic movement. It almost looks dance like writhing, actually. So it's very fluid. So very different than when they're in the clinical off state of their PD. So, three things that I would like everyone with PD to know about dyskinesia would be: one, dyskinesias are not always bothersome.
00:01:57:02 - 00:02:20:14
Dr. O'Shea
In fact, many patients with PD preferred to be in the clinical on state when their medications are working. Their rigidity and tremor and slowness are better, even if that means having some just kinetic movements rather than being in the clinical off state, which in which you could be a little difficult to move. Number two, like I previously noted, dyskinesias are typically treated by adjusting your levodopa dose or frequency.
00:02:20:16 - 00:02:47:06
Dr. O'Shea
Therefore, it's really important to discuss if you're experiencing these movements with your neurologist or your doctor, if your primary care doctor is managing your Parkinson's disease. And then number three, keep a diary of your Parkinson's symptoms and medication administration times. So, for example, if you record that you experienced dyskinesias 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.
Movements that feel out of your control can be confusing, frustrating, and sometimes alarming. Two common causes of these movements — dyskinesia and dystonia — often look similar on the surface. Understanding what sets them apart can make it much easier to talk with your care team and manage your day-to-day life.
In this article, learn more about dyskinesia and dystonia, including what causes each of them and what treatment options are available.
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Parkinson’s disease (PD) can be associated with symptoms of dyskinesia and dystonia. While both are related to the muscles, they are two separate symptoms.
Dyskinesia is a set of motor symptoms that affects some people with Parkinson’s disease who use levodopa, a medication prescribed for PD. These symptoms include rapid involuntary movements of the face, arms, legs, or torso. These movements may look like twisting, writhing, swaying, fidgeting, squirming, bobbing, or flailing. Dyskinesia is a common side effect of levodopa and other Parkinson’s medications. You’re more likely to develop dyskinesia in the later stages of Parkinson’s.
Dystonia is a disorder that can cause excessive, involuntary muscle contractions that occur continuously or repetitively. It can affect many parts of the body, including the face, jaw, neck, eyelids, vocal cords, hands, arms, legs, and feet. Symptoms can include:
You might notice dystonia when you try to use a specific body part. For instance, if you try to walk and your toes start to curl up or your foot turns in, this can be an example of dystonia. You can also experience dystonia when you aren’t moving.
Both dyskinesia and dystonia tend to affect the side of your body that experiences worse symptoms of PD.
Dyskinesia in Parkinson’s disease is typically caused by levodopa. Parkinson’s causes a decrease in dopamine levels in the brain, and levodopa is used to help increase the level of dopamine. However, levodopa is taken intermittently throughout the day, causing dopamine levels to rise and fall over time. These fluctuations are thought to be the cause of dyskinesia.
There are two types of levodopa-related dyskinesia:
Dystonia can also be caused by levodopa treatment, but it’s also a symptom of Parkinson’s disease itself. Dystonia symptoms occur when there’s a decrease in the dopamine levels in the brain. This can occur before medication is taken in the mornings or as it’s wearing off during the day.
There are many types of dystonia unrelated to Parkinson’s disease. While some forms of dystonia occur with no known cause, other forms are hereditary. A brain injury (from trauma or stroke) can also cause dystonia. Huntington’s disease is a rare genetic condition that causes nerve cells in the brain to break down over time. It primarily causes chorea (a different movement disorder), but some people also have dystonia.
Because dyskinesia and dystonia can both happen with Parkinson’s, it’s not always easy to tell which one you’re experiencing in the moment. Paying attention to how the movement feels, when it shows up, and what seems to trigger it can give you useful clues to share with your neurologist.
Dyskinesia often looks like rapid movements that you can’t fully control. These movements may involve a large part of the body, such as your arms, legs, or trunk, or smaller body parts as well. Dyskinesia is usually not painful but can make everyday tasks more difficult. Dyskinesia can happen when your dopamine levels are at their highest or lowest.
Dystonia, on the other hand, usually feels more like a cramp, pull, or twist. Similar to dyskinesia, it can involve the arms, legs, or trunk, but it can also affect your neck, eyes, jaw, and throat. Dystonia can be quite painful and may freeze the affected body part into an uncomfortable position. It’s more likely to show up when your dopamine levels are low, such as first thing in the morning or when a dose is wearing off.
You can track these differences by noting:
Bringing this information to your appointments can help your care team adjust your treatment plan to better target dyskinesia, dystonia, or both.
If you’re experiencing dyskinesia, talk to your healthcare provider or neurologist. They may suggest adding a new medication, switching the form of levodopa you take, or even having a surgical implant to help you manage dyskinesia.
Your doctor may recommend adding a medication to your treatment plan. Dopamine receptor agonists are another type of drug used to treat Parkinson’s disease. These function by mimicking the action of dopamine and interacting with neurons in the brain to relieve symptoms. Dopamine receptor agonists can be used to help control dyskinesia. However, they aren’t prescribed to treat levodopa-induced dyskinesia since they can make it worse. Examples of these drugs include:
Amantadine (Gocovri) is another drug that can reduce dyskinesia and help Parkinson’s symptoms. It also increases the amount of dopamine in the brain. It can be taken with levodopa to manage dopamine-induced dyskinesia.
To manage dyskinesia, your healthcare provider may recommend lowering the dose of levodopa or changing the time of day it’s taken. There’s also an extended-release form of levodopa available, which steadily releases the drug over a longer period of time. These include carbidopa/levodopa (Crexont, Dhivy, Rytary, Sinemet) and foscarbidopa/foslevodopa (Vyalev). They help prevent peak-dose or diphasic dyskinesia.
Deep brain stimulation (DBS) is a surgical procedure used to help control motor symptoms and dyskinesia caused by taking levodopa. During the surgery, thin electrodes are inserted into areas of the brain responsible for controlling movement. Later, in an additional surgery, a small impulse generator is implanted. Once the DBS system is in place, the electrodes send tiny electrical pulses to these brain areas to stimulate them. DBS helps the brain maintain normal movement activity and may allow your doctor to lower the dose of levodopa you need to manage symptoms.
Dystonia can be treated in many of the same ways as dyskinesia, such as with dopaminergic medications and DBS. However, there are other ways to manage this condition, including:
Botox is best known for its cosmetic uses, such as decreasing wrinkles. However, it can also be used to manage dystonia. Botox can interfere with the communication between nerves and muscles. This can cause muscles to weaken, which in turn can alleviate certain symptoms of Parkinson’s. Similar to Botox, anticholinergic medications can be used to interfere with the signaling between the nerves and muscles.
On MyParkinsonsTeam, people share their experiences with Parkinson’s disease, get advice, and find support from others who understand.
Have you experienced dyskinesia or dystonia with Parkinson’s disease? Let others know in the comments below.
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One of the things that really triggers anxiety with me is if I forget a dose of the carbadopa/levodopa. I find myself thinking “what is wrong with me?” I then I realize doh I didn’t take my meds… read more
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