Sleep and Parkinson’s – Webinar notes

Sleep and Parkinson’s – Webinar notes

In mid-May, the Davis Phinney Foundation offered a webinar on sleep and Parkinson’s disease (PD), featuring Dr. Ronald Postuma, a movement disorders specialist in Canada. He discussed the types of sleep issues commonly seen in PD and measures that can help to mitigate them. There was also a question and answer session. We at Stanford Parkinson’s Community Outreach viewed the webinar and are sharing our notes.  

This webinar was recorded and can be viewed here.

If you have questions about the webinar, you can contact the Davis Phinney Foundation at 866-358-0285 or contact@dpf.org.

The concept of “sleep hygiene” is mentioned in the presentation. The American Association for Healthy Sleep provides handy tips detailing healthy sleep habits.

In February, the Palo Alto Parkinson’s Disease Support Group hosted a presentation by a Stanford sleep medicine specialist. His talk provided additional detail about some of the sleep issues mentioned here. The Stanford PD Community Blog summary is available here.

For additional terrific resources on sleep issues in PD –  including downloadable guides, links to online resources, and webinars and podcasts – see this page on the Stanford Parkinson’s Community Outreach website.

Now… on to our notes from the webinar.

– Lauren

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Sleep and Parkinson’s – Webinar notes

Presented by the Davis Phinney Foundation

May 13, 2020

Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Dr. Ronald Postuma, described sleep as a crucial part of living with PD. It is a daily routine that helps our bodies rest and heal, and is essential for the healthy function of our brains. Yet sleep disorders are very common in PD. Almost 90% of those with PD will eventually develop sleep issues of some kind during the course of their illness. Dr. Postuma discussed the reasons for these issues,

Why is sleep so disrupted in PD?

There is a lot of overlap between the areas of the brain that are impacted by PD, and the areas that control sleep. Most – though not necessarily all – of the sleep problems experienced by someone with PD are probably directly related to PD. A general rule of thumb: did the sleep issues predate the PD diagnosis by many years? If so, they might be separate from the disease. For someone who already had diagnosed sleep apnea, or who had struggled with insomnia their whole adult life, these sleep difficulties may be exacerbated by PD, but are not necessarily caused by it. Either way, the important thing is to try to tease out what specific issues are impacting one’s sleep, and then decide how to intervene to try to address them.  

From a motor standpoint, while sleeping, you basically don’t have PD.  Tremor stops, and rigidity melts away. The motor center in our brain unconsciously tells our body to move when we’re awake, but when we’re asleep, that center of the brain is inactive as well. The difficulty is that most of us wake up multiple times during the night. Even if you just woke up a little bit and would normally drift right back to sleep, once the tremor starts going, it can be challenging to get back to sleep. PD can cause increased urinary frequency, which may contribute to the need to get up during the night.

Dopaminergic medication such as levodopa (Sinemet) can cause sleeplessness, acting almost like a stimulant for some individuals if taken right before bedtime. For others, being “off” medication overnight can lead to discomfort, pain, and difficulty repositioning in bed.

What sleep disorders do we see in PD?

  1. Insomnia (difficulty falling asleep or difficulty getting back to sleep)
  2. Excessive daytime sleepiness
  3. REM sleep behavior disorder (RBD)
  4. Restless leg syndrome (RLS)

These sleep issues are discussed in more detail later in the summary.

A common pattern as people get age: falling asleep by 9 or 10pm, sleeping well for a few hours, then waking up in the early morning around 2-4am, unable to sleep again for an hour or two. Practicing good sleep hygiene will help to regulate the sleep-wake cycle; for instance, if you can’t sleep within a half hour or so, get up – don’t stay in bed! By lying in bed for hours, sleepless and frustrated, your brain will start to associate the bed with negative emotions, which can reinforce sleep problems. If it is safe given your mobility, get up and read a book or watch TV (but try to keep the screen dim, if possible) for an hour or two, then go back to sleep.

This pattern is not inherently harmful and can be fine for some people. In the morning, if you feel sufficiently rested even though you were up for an hour or two in the early morning, then that’s great. There is no need to add a prescription medication for sleep if this is your situation.

Other sleep hygiene tips:

  • Exercise (earlier in the day, not late in the evening or afternoon)
  • Light exposure during the day, especially if you have daytime sleepiness
  • Manage other comfort issues, such as temperature or noise

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Question and Answer Session

Q: Is there something my neurologist can do to help, if sleep hygiene is being followed and sleep issues persist?

A: Check your dopamine therapy; they may need to add some close to bedtime if you are feeling under-medicated towards bedtime. Lots of the prescription sleep aids are designed to make you fall asleep at the beginning of the night, not to help you stay asleep throughout the night. Those that do cause you to sleep through the night typically make you sedated the next morning as well.

The speaker often uses doxepin and trazodone, older antidepressants that make people sleepy. They are not treating depression in his PD patients at all, but low doses of these medications are great for “sleep maintenance.” He uses benzodiazepines like clonazepam with caution due to the potential for dependence and sedation, though they can be useful for some patients.

Melatonin is available over-the-counter and is generally very benign. One would typically start with 3 mg or 5 mg; don’t go past 10 mg. Some people only need 0.5 mg or so, it is highly variable. The jury is out on whether it helps those with PD in general, but it can definitely help with REM behavior disorder (RBD), discussed more below.  For some individuals, melatonin works well; others need too high of a dose in order to be useful. The only real risk is that it might make you sleepy the next day if you use too much.

Q: How much sleep do I really need? What if I get less sleep than 8 hours on a regular basis, but I feel rested?

A: Go by how you feel, rather than by the total number of hours.  Anything more than 5 hours, if you feel good, don’t worry about it. Most people sleep less as they get older. Focus more on the quality of the sleep you are getting and how you feel in the morning – do you feel rested or tired? Naps can be helpful too, for those who regularly sleep less than 8 hours a night.

Q: What are “sleep attacks” and how common are they?

A: Sleep attacks are when someone falls asleep suddenly, almost immediately. This can happen when someone starts taking a sleep aid and their body isn’t used to it. It is also a known side effect of the dopamine agonist drug family, which includes some PD medications like pramipexole (Mirapex) and ropinirole (Requip). Most people do have some onset of sleepiness before they actually fall asleep; truly sudden “sleep attacks” are rare. But most people try to power through when they are feeling drowsy, and this can be quite dangerous.

If you are sleepy, you are driving, and you have PD, you have to stop immediately. Even pulling over on the side of the freeway, which is quite risky, is a safer option than trying to keep yourself awake if you are moving and can feel sleepiness coming on. Pull over, take a “cat nap” for a few minutes, or get out and move around, if it is safe to do so.


Q: How can I tell the difference between excessive daytime sleepiness and the regular fatigue that one gets with PD?

A: They can be mixed up with each other, and one can have both, but they really aren’t the same thing. An easy way to tell is: if you sit still in a chair, not doing anything, and you fall asleep right away, then you have somnolence or excessive sleepiness. If you sit in the chair and you feel mentally or physically fatigued, but you aren’t falling asleep, that’s likely PD-related fatigue.

Get outside into some sunshine, if you are able, as this should trigger your brain to wake up. If you don’t have ready access to the outdoors, or you live somewhere with gloomy weather, a lightbox lamp that simulates natural light can be helpful. Vigorous exercise improves the quality of one’s sleep and can actually give you more energy. The timing of your exercise matters, though. If you have trouble falling asleep in general, don’t exercise in the evening, as this can worsen your insomnia. Morning or daytime is better, in that case.

Q: How does caffeine play into all this?

A: Coffee (or other forms of caffeine can certainly help give you a boost if you are feeling tired during the day. But be aware that your body really gets habituated to caffeine levels pretty quickly. If you’re having a midday cup of coffee every day, it will start to lose effect. It’s better to use it just as needed, on occasion, so that your body will be more responsive to the caffeine.

Q: And what about your doctor – can she prescribe anything to help with daytime sleepiness?

A: There are a few medications, some of which are coming into clinical trials and are not available yet. Ritalin (methylphenidate) is a medication used for attention-deficit disorder in kids, and can sometimes be helpful for adults with daytime fatigue. Modafinil (Provigil) is a stimulant medication that is also helpful for some, though it can be very expensive and is not always covered by insurance.

There are some medications prescribed to really drive people to sleep deeply, with the aim of feeling more alert the next day. One of these is Xyrem (sodium oxybate), which is extremely expensive and difficult to use, in part due to its reputation as a “date rape” drug and is highly controlled for this reason. He has only prescribed this once in his career and doesn’t find it a good option for most.

In his experience, most effective is to schedule a nap or two throughout the day, as long as you are not having any trouble falling asleep at night. Short naps can be very beneficial.

Q: What is REM sleep behavior disorder (RBD)?

A: Rapid eye movement (REM) sleep is the part of our sleep cycle when our sleep is deepest, and our body is normally paralyzed. When we are dreaming in REM, it is almost like we are awake – our brain is having vivid, active dreams – but our body is kept paralyzed so we don’t move around and potentially injure ourselves buy acting out these dreams.

In those with PD and some other neurodegenerative disorders, the part of the brain that controls REM sleep is affected, and the body isn’t always paralyzed during REM. An individual doesn’t get up and walk, but often it might manifest as thrashing around, talking, singing a song, or smoking a cigarette. They are unaware this is happening, but a partner sharing the bed would definitely be disturbed by these movements and behaviors. In fact, sometimes movements such as thrashing or punching can strike the partner, leading to injuries. Safety, for the individual and their partner, is the only concern with REM behavior disorder (RBD).

Many people sleep apart. Keeping sharp objects or furniture away from the bed is a good idea. Having a mattress that is low to the floor is a good idea as well.

There are medications that can help. Melatonin can be tried over-the-counter and is helpful for many. Clonazepam can be very effective but has a high risk of sleepiness during the day; it can also increase the risk of falls due to grogginess. Antidepressant medications can actually be very helpful as well.

Q: Is it true that RBD can be a prodromal symptom of PD?  

A: Yes. We are learning that for many who develop PD, the nonmotor symptoms – sleep disturbances, mood changes, etc. – often predate the classic motor symptoms such as tremor.

Unfortunately, most people who experience RBD will go on to develop a neurodegenerative brain disorder, most often PD or a related disease called Lewy body dementia.

Q: What is restless legs syndrome (RLS)?

A: Restless legs syndrome (RLS) can occur in anyone, not just those with PD, but is also more common in those with later-stage PD and in people of European descent. It is usually described as a sense of pain or discomfort that is relieved when you move your legs. Once you lay still and try to fall asleep, the discomfort returns until you move your legs again. This can be quite bothersome and can lead to lack of sleep.

The medications used to treat RLS happen to be the same ones we use to treat PD. This can complicate matters, since we don’t want to make substantial changes to your PD therapy – which may already be optimized – to try to address the RLS. Additionally, RLS has the potential to paradoxically “augment” or worsen over time, the more dopaminergic medication is used to treat it. Unfortunately, it can be difficult to treat RLS; gabapentin is one option, but can cause sleepiness during the day. Sometimes physical measures such as going for a walk, massage, soaking the legs, or keeping the legs cool can be helpful.

Q: Are sleep studies useful?

A: If it isn’t clear what is going on with your sleep, a neurologist may order an overnight sleep study to further evaluate. Most of the time, a sleep study isn’t necessary to diagnose issues like RBD or RLS. If sleep apnea is suspected, the sleep study may be able to capture this issue so it can be treated.

Q: Do you recommend THC or CBD marijuana products to help with sleep issues?

A: THC can cause hallucinations and is generally not recommended for those with PD, but CBD seems to be helpful for some to reduce anxiety and improve sleep. We don’t really know yet because these substances haven’t been formally studied for use in those with PD.

Q: Do those with Duopa, the intestinal gel levodopa pump, tend to have sleep issues too?

A: The advantage of Duopa is a stable, consistent dosage of levodopa throughout the day. Most people turn off the pump overnight, but the complete lack of dopamine overnight can actually worsen sleep. So, for those patients, adding a little bit of oral Sinemet can be helpful.

Q: Does deep brain stimulation (DBS) affect sleep in those with PD?

A: For many, DBS does help sleep. It provides steady, ongoing therapy that isn’t subject to the wearing off or kicking in of oral medications – someone with DBS may still take levodopa orally as well, but overnight they will always have their DBS therapy ongoing even when the medications have worn off.

Q: If I only do one thing to help improve my sleep, what should it be?

A: Exercise! Wear yourself out, be active during the daytime. You should be tired from exercise, sweaty, out of breath at least once a day.