Experts Share Views on Managing Patients’ Sleep Problems
Sleep problems associated with Parkinson’s disease, as well as ways of managing such problems, were the focus of expert discussion in a recent webinar.
The webinar, “Night Fight with Parkinson’s: Acting Out Dreams, Insomnia and Other Sleep Issues,” was hosted by the Michael J. Fox Foundation.
Discussion began with an overview of the sleep disturbances common to Parkinson’s, which include insomnia, restless leg syndrome, sleep apnea, and excessive daytime sleepiness. REM sleep behavior disorder (RBD), where individuals physically act out their dreams, is particularly common, affecting as many as 90% of Parkinson’s patients over the course of their disease, the experts said.
These and other non-motor symptoms, such as constipation and loss of smell, can manifest long before motor symptoms become apparent. Sleep can also be indirectly affected by other aspects of Parkinson’s, such as anxiety, frequent urination, physical discomfort, and treatment side effects.
Factors that aren’t directly related to Parkinson’s — such as the use of alcohol or caffeine, exercise late in the day, looking at bright screens (i.e., computers and TVs) late at night, or a bedroom’s temperature (cooler is better) — can affect sleep, too. Managing these issues is also important with Parkinson’s-related sleep disturbances.
“All of these things together form what we neurologist or sleep physicians call ‘sleep hygiene,’ and it’s really an important part of managing any sleep problem that a person with Parkinson’s will experience,” said Michele Hu, PhD, a professor of clinical neuroscience and consultant neurologist at Oxford University.
“Good sleep hygiene is key” for managing sleep problems in Parkinson’s, added Maria Cristina Ospina, MD, a movement disorder neurologist and assistant professor of clinical neurology at the University of Arizona.
Hu and Ospina both stressed the importance of avoiding blue-light screens at night, not consuming caffeine or alcohol late in the day, and not taking long daytime naps as ways to help manage sleep problems.
They also noted the importance of getting the right balance of medications and other therapies.
“Always talk to your doctor about your medications and how well they’re working,” Ospina said. “Sometimes you may need a dose of levodopa [a dopamine-replacement therapy] in the middle of the night to keep you sleeping through the night.”
Ospina added that exercise early in the afternoon can help with sleep at night — however, exercising too late in the day can make sleeping at night difficult. It’s also important to have a balance of different types of exercise (e.g., aerobic exercise and resistance training).
“Just like you have a well-balanced diet, you want a well-balanced exercise program,” Ospina said.
Complementary and alternative therapies may also aid people with Parkinson’s in getting better sleep. For example, light therapy can help “reset the clock” for patients, according to Ospina. In general, things that help manage physical discomfort in Parkinson’s can also help with sleep.
“Anything that helps you with the rigidity of Parkinson’s disease, like massage, tai chi, yoga, acupuncture, helps relax the body so that it can fall asleep,” Ospina said.
These activities can also relax the brain to aid in sleep, she added, also noting that meditation and mindfulness can be helpful to help the brain calm down.
Hu recommended an app, called Sleepio, that delivers cognitive behavioral therapy aimed at reducing insomnia. She said the app was “a similar approach to mindfulness” that can help people get back to sleep at night.
Cannabis, Melatonin, and Clonazepam
Cannabis use as a potential sleep aid has attracted interest in recent years as it has become more widely legalized in the U.S. According to Ospina, cannabidiol (CBD), a compound found in cannabis, has helped some Parkinson’s patients with sleep and pain.
However, Ospina noted that conclusive data are lacking on CBD as a sleep aid, and more research needs to be done. Additionally, there aren’t widely accepted guidelines for CBD use, and regulations on CBD vary among U.S. states. As such, there is a lack of uniformity for CBD as a Parkinson’s treatment.
“So everybody has to sort of try it and see what works for them,” Ospina said.
She shared stories of some individuals who would “only eat the head” of a CBD gummy, saying that was enough for them. She also said that a patient could ingest too much CBD — especially considering that its possible interactions with other medications aren’t well understood. As such, patients need to be careful, start at low doses, and communicate with their healthcare providers, the experts agreed.
Hu said she had recently reviewed a study that “showed some promising benefits” for the use of CBD as a Parkinson’s sleep aid — however, due to confidentiality agreements, she was unable to share details.
“I think we need more studies of this nature to really tease out what works,” Hu said.
Notably, CBD is not psychoactive — that is, it doesn’t induce a “high.” The main psychoactive compound in cannabis is tetrahydrocannabinol (THC); Ospina recommended that people with Parkinson’s try to avoid THC.
“In Parkinson’s patients, you usually want to stay away from the THC because you’re already on psychoactive medications,” Ospina said, noting that levodopa and dopamine agonists can cause hallucinations.
“We don’t want to add one more thing that can cause you to be confused and hallucinate,” Ospina said.
Melatonin, a hormone involved in sleep regulation that is available in over-the counter supplements, and benzodiazepines (a type of tranquilizer) like clonazepam, are commonly used to help people with Parkinson’s get better sleep, according to Ospina. However, there isn’t a lot of solid scientific data supporting their use, and again more research is needed.
Anecdotally, Brian Duggan, who has REM sleep behavior disorder, reported that melatonin has helped him fall asleep. While Duggan has not been diagnosed with Parkinson’s or experienced its motor symptoms, he said that many would consider his condition to be prodromal for Parkinson’s (that is, indicative that the disease will set in at some point).
“Melatonin has worked very well for me at a higher dose,” Duggan said. “In the groups of people I talk with, clonazepam is also something that often works for folks.”
Pillow Forts and Advice for Partners
Duggan, who founded the nonprofit Citizen Science for Health, also said that changing his physical sleeping environment — moving the bed closer to the floor, building a “pillow fort” around himself, etc. — has helped him to avoid the more problematic aspects of moving around while sleeping.
Using a sleeping bag can also help with this, Ospina added.
Duggan also shared how his condition has affected his personal life, particularly his relationship with his wife — on one occasion, he recounted dreaming about reaching for a basketball that had gone out-of-bounds, only to wake up to find he was holding his wife’s head.
“I will wake up out of a dream, but I don’t know what’s been going on. I don’t know I’ve been flailing until I wake up, and they’ve [his partner] had to live with the talking, the noise, the punching, whatever it is,” Duggan said.
In her clinical experience, Hu said that a patient’s partner can often tell when sleep episodes will escalate into a major attack with movement that risks injury.
“What I would tend to say is it is probably, in my experience, better to wake up the [person with Parkinson’s] if you [the partner] can sense that it’s going up to that,” Hu said.
The person with Parkinson’s, having been woken and realizing that they were just dreaming, “can hopefully then just go back to sleep. But this time, go through the sleep phases without going into an episode of RBD [REM sleep behavior disorder],” she added.
If there isn’t a risk of physical harm — for example, if the person with Parkinson’s is just talking in their sleep — then the experts generally recommend not waking them.
Ongoing research efforts, such as the Parkinson’s Progression Markers Initiative (PPMI), are seeking to better understand how sleep disorders like RBD manifest and progress in people with, or at risk of developing, Parkinson’s disease.
Other ongoing studies are evaluating how various medications affect Parkinson’s-related sleep disturbances, as well as other disease symptoms.
“If we have something that is really effective, that will be a big breakthrough, because as we’ve said already, improving someone’s sleep will have a big impact on them, but also on their family,” Hu said.
She added that improving sleep won’t just improve patients’ quality of life, but also improve their motor symptoms and cognition the next day. Restorative sleep may also help to prevent or slow neurodegeneration, the experts said.