RBD (REM sleep behavior disorder) and other sleep issues – meeting notes

The Palo Alto (California) Parkinson’s Disease Support Group’s February 2020 meeting featured Dr. Emmanuel During, who specializes in neurology, psychiatry, and sleep medicine at Stanford.  He discussed the various types of sleep disturbances that can occur in Parkinson’s disease (PD), such as insomnia, restless legs syndrome, sleep apnea, and REM sleep behavior disorder, along with available treatments for managing these issues. There was also a question and answer session.

Though this was a Parkinson’s Disease support group meeting, these sleep issues are common in all the disorders in the Brain Support Network community, including Lewy body dementia (LBD), multiple system atrophy (MSA), progressive supranuclear palsy, and corticobasal degeneration.  Indeed, REM sleep behavior disorder (RBD) is common in LBD, MSA, and PD.

Lauren Stroshane with the Stanford Parkinson’s Community Outreach attended the meeting and shared her notes below.


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Sleep and Parkinson’s Disease – Meeting notes
Palo Alto Parkinson’s Disease Support Group Meeting
February 12, 2020
Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The guest speaker was Dr. Emmanuel During, who specializes in neurology, psychiatry, and sleep medicine at Stanford.

Dr. During described sleep as a “blind spot” that often goes unaddressed in medical care. Doctors rarely inquire how their patients are sleeping, so sleep issues often go unrecognized and untreated. Yet the quality and amount of sleep you get every night affects your overall health and quality of life. For many with Parkinson’s Disease (PD), sleep disturbances may have been among their earliest symptoms, before the motor symptoms like tremor or slowed movement started to manifest. Sleep also has the important function of cleaning out toxins in the brain. No matter how well we treat the motor symptoms of PD, if you are not sleeping well, you will not feel healthy.

What types of sleep issues are common in PD?

At night, sleep may be shallow or fragmented. Muscle stiffness can make it difficult to reposition during the night. Sometimes muscle cramps or dystonia occur, which may be painful or disruptive. Frequent urination and restless legs may interrupt sleep, while snoring, sleep apnea, or acting out dreams may worsen sleep quality.

During the day, many people with PD experience brain fog and have difficulty paying attention. Daytime sleepiness and general fatigue are also common.

Fatigue may consist of physical or mental exhaustion. Typically, it occurs when certain neurotransmitters (dopamine, serotonin, and norepinephrine) are low. Causes of fatigue can include poor quality sleep, depression, restless leg syndrome (RLS), and side effects of medications.

Sleepiness is different from fatigue in that it is a difficulty staying awake, like drowsiness. It may be caused by insufficient sleep or sleep apnea, which is when breathing stops repeatedly during sleep. Sleep apnea is a serious condition that decreases the amount of oxygen that the brain receives during sleep, interrupting the sleep cycle over and over. Besides making you sleepy, it also increases your risk of heart attack and dementia. Sleep apnea can be diagnosed at home or via sleep study in a lab. There are a number of different effective treatments available to manage it.

Some medications can cause sleep attacks, periods when a person can’t help falling asleep regardless of the situation. Medications which can trigger this side effect for some individuals include Mirapex (pramipexole), Requip (ropinirole), Sinemet (carbidopa-levodopa), allergy medications, anxiety medications, and some painkillers. Provigil (modafinil) and caffeine are stimulants which can be helpful for managing fatigue and sleepiness in PD, but often, if a medication is suspected of causing sleep attacks, it may need to be reduced or discontinued.

Insomnia in PD

Insomnia, or sleep fragmentation, is also common in PD. Insomnia can either consist of difficulty falling asleep at the beginning of the night, or waking up during the night and having trouble getting back to sleep again. There are a number of ways to manage insomnia, depending on what is causing it.

  • For discomfort in bed due to stiffness or dystonia, sometimes switching to long-acting carbidopa-levodopa (Sinemet ER or Rytary) can help provide on-time overnight.
  • If pain is keeping you awake, try to identify methods to address the pain, such as medication or a heating pad.
  • If you are waking up frequently during the night to urinate (nocturia), the medication can Myrbetriq (mirabegron) can be helpful. Many other drugs for this issue can cause confusion in those with PD.
  • If you address these factors and are still having insomnia, then there are other options:
    • Cognitive behavioral therapy (CBT) can be very helpful.
    • Consult a sleep doctor or neurologist to explore prescription sleep aids.
    • Try over-the-counter sleep aids such as melatonin. AVOID Benadryl and Tylenol PM, which can cause confusion in those with PD!

People with PD sometimes experience circadian abnormalities, in which the body’s internal clock is disrupted and confused. The circadian rhythms in our bodies regulate our cardiovascular, hepatic (liver), pancreatic, adipose (fat), and gastrointestinal systems. Our bodies use certain cues – food, sunlight, activity, and melatonin – to regulate this cycle.

For those experiencing circadian abnormalities, such as from jet lag, Dr. During recommended limiting the use of naps and trying over-the-counter melatonin tablets, 0.5 to 2 mg taken one hour before your desired bedtime.

Restless legs syndrome (RLS)

Restless legs syndrome can occur in the general population but seems to occur more frequently in PD. It is an urge to move the legs that becomes quite uncomfortable until the legs are moved or stretched. This is not the same as leg movements which may occur during sleep – RLS is a bothersome sensation while you are awake, and can prevent you from falling asleep. RLS is typically caused by inadequate levels of iron in the brain.

RLS symptoms can be triggered by rest, boredom, and being in a confined space such as a car or plane. Stretching, massage, walking, distracting, and soaking the legs in hot water can be helpful. Aggravating factors for RLS include smoking, alcohol, coffee, and lack of exercise.

If you have RLS, you may need to get your iron tested and, if it is low, take oral iron supplements at a dose recommended by your doctor. Some antidepressants (with the exception of buproprion) can be beneficial. Other medications commonly prescribed are Horizant (gabapentin enacarbil) and Lyrica (pregabalin), though these tend to be expensive. Dopamine agonist medications including Sinemet, Mirapex, Requip, and the Neupro patch can help with RLS, but must be used cautiously due to the potential to “augment” or dramatically worsen RLS symptoms over time. These medications can also cause serious side effects, such as impulse control disorder (ICD), which consists of compulsive behaviors like gambling, shopping, binge eating, and hypersexuality. Low doses of opioid medications are sometimes used for chronic RLS that does not respond to other treatments.

REM sleep behavior disorder (RBD)

The part of our sleep cycle where the deepest, most important sleep occurs is during rapid eye movement (REM) sleep, when our eyes move but the rest of our body is temporarily paralyzed. In neurologic disease, sometimes the mechanism of paralysis stops working, and our body is able to move around while we are asleep, acting out our dreams. This is called REM sleep behavior disorder (RBD), and it can be quite dangerous due to the risk for injury to oneself and others. People with RBD may flail their limbs, run, fall out of bed, or even throw punches, yet they are asleep and unaware they are doing so.

RBD occurs in 50 percent of people with PD, but can also occur long before the motor symptoms and PD diagnosis. A sleep study in the lab can confirm that RBD is present.

How to manage RBD?

Safety measures can help prevent injury:

  • Move the mattress to the floor and use bed rails to reduce the risk of falling out of bed
  • Padded furniture
  • Window protection
  • Bolster pillow between bed partners
  • Consider sleeping in separate beds or rooms for safety
  • Bed alarm to alert a caregiver if the person is out of bed

Medications can reduce the occurrence of RBD:

  • Melatonin at bedtime (usually 1-10 mg dose)
  • Clonazepam (however, this can be sedating the next day)

A new drug trial is underway for treatment of RBD in Dr. During’s lab. The study drug is sodium oxybate, which has previously been approved for narcolepsy and alcohol withdrawal. Study participants have RBD, have previously tried melatonin and clonazepam, and have been unable to tolerate these medications. To learn more about the study, contact study coordinator Adrian at [email protected]


Parkinson’s disease worsens sleep quality.  Poor sleep leads to poor function during the day!

He recommends the following:

  • Discuss your sleep issues with your doctor
  • Address treatable issues that are affecting your sleep, such as stiffness, need to urinate, insomnia, restless legs symptoms
  • Snoring, brain fog, and headaches when you wake up can be signs of sleep apnea
  • If you have severe restless legs, you may be low on iron
  • If you are acting out your dreams, start melatonin and get a sleep study

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Question & Answer Session

Q: What percentage of people who have REM sleep behavior disorder (RBD) will go on to develop PD?

A: All people with RBD will eventually develop a neurologic disorder. It could be PD, or possibly a type of atypical parkinsonism such as multiple system atrophy (MSA) or Lewy body dementia (LBD).

Q: What types of patients do you (Dr. During) see in your clinic?

A: Dr. During sees patients with PD or other neurologic diseases who have trouble sleeping.

Q: I have dystonia. Is that because of my sleep issues or because of my PD?

A: It is unlikely to be because of your sleep issues. Dystonia is fairly common in PD, but other things can also cause it, so it is important to speak with your neurologist to see if further workup is needed.

Q: Have you found that the quality of melatonin pills is inconsistent?

A: Yes, that is sometimes the case. He recommends a couple brands that seem to be better quality: Nature Made and Naturelle. He also suggested the website Labdoor, which ranks various supplements and minerals according to the quality of their ingredients.

Q: I often crash around 2-3pm and feel like I can’t function anymore. What should I do? 

A: This is common and expected in PD, unfortunately, as well as those without PD! If you are able to nap for 20 minutes or less, do that on a regular basis. If you can’t nap without sleeping too long, instead try going outside and doing something active, like going for a walk. Sunlight and movement will help trigger your brain that it is not time to sleep. Chewing gum also signals to your brain that it is time to eat rather than sleep. And socializing with someone is another tactic that can help wake you up.

Q: Do we only dream during REM sleep?

A: No, we dream at other points during our sleep cycle. However, REM dreams are more complex and memorable. Studies indicate the dreams we remember were typically experienced during REM sleep.

Q: Does sleep position matter?

A: If you have sleep apnea, it is best for your breathing to sleep on your side, and worst to sleep on your back. For other conditions such as RBD, it does not matter what position you sleep in.