Parkinson’s Disease: Sleep difficulty

PD screws with our sleep and circadian rhythms. For many, melatonin before bed can be very helpful.

I suggest starting focusing on the basics before adding medication. Having good sleep hygiene is critical. This means:

Sleep in complete darkness: Invest in blackout curtains, and cover up anything in your room that produces light. Blue light wavelengths have been shown to interfere with sleep the most.

Avoid Screens: Avoid look at a screen (phone or TV) for 30 min -60 min before bed. This extra light can disrupt circadian rhythms and decrease the amount of melatonin our brains would naturally release. Do not watch TV in bed, watch in a different room in house, and stop at least 30 minutes before bed.

Phones: If possible, charge cell phone in a different room. If you need an alarm, use watch alarm, or turn volume up loud enough that you can hear it.

Avoid Caffeine and alcohol: Both of these can interfere with quality sleep. If you can eliminate both that would be best. I still have caffeine, but stop at noon, and I have 1-2 alcoholic drinks per week…

I loved the book, “Why we sleep”

This book gave me so much insight into why good sleep is so important in maintaining good health and being high functioning members of society.

One tool that I picked up from the book, is understanding how our core body temperatures change as we sleep, and that for best sleep our temperatures drop after we fall asleep. It was suggested that by taking a hot shower before bed, that more blood is shunted to the skin, and as a result our core body temperature is dropping as we fall off to sleep.

If you have tried everything else and have a few thousand extra $$ to spend, it may be worth considering Eight Sleep. I never know what to get my husband for Christmas, but he had become obsessed with his poor sleep. I had read from some other docs in a physician mom’s group raving about it, so I went for it. Even though it was pricey, I have to say it is one of the best purchases I have made in a while. The main downside is, that when I travel, I can’t take it with me and I have a hard time sleeping without it. (I don’t get anything from Eight Sleep, but maybe should try:).

For those of you who don’t know what it is, it is a “smart” mattress pad that circulates water through a matrix to adjust the temperature through the night, it monitors your heart rate, how much you move, how much you snore and uses an “autopilot” feature to optimize the temperature through various stages of sleep for each side of the bed.

I asked The Parkinson’s Fight Club group what problems they have experienced with sleep and their solutions. I have included the thread below. There are a lot of different solutions. I want to reiterate that all of this is anecdotal and very little is backed by science, but just because it may not have been studied yet, does not mean it may not be helpful to you.

In the interest of first causing no harm, I just want to say that THC or “pot” may or may not be legal where you live, and even if it is, if you have a job, such as mine as a physician, or work in a field where you are susceptible to random drug testing, even if it is legal where you live, it is likely not allowed in the terms of your employment.

Selected posts from a thread on The Parkinson’s Fight Club Facebook group asking for input for this website.

Jamie Bryson
I don’t sleep well without meds and/or supplements because my tremor keeps me awake. What I do has changed over time, as sometimes something works really well for a while and then it doesn’t. For a long time I used melatonin and cannabis (edibles containing CBN and THC). I had to stop that because of brain fog. Now I am using magnesium and lunesta. This combo is working ok right now, but not last night 🤷‍♂️

Jorge Verdugo II
Alkalized water is helping my inflammation and helping me get better sleep. Have you tried it?

Charlotte Juarez
I was just prescribed gabapentin for restless leg and rigidity, and the MDS said it would help me sleep as well. I’ve been sleeping like a baby the last few nights! Best sleep scores on my Fitbit that I’ve had in a very long time!

Shawn Evans
I rely on THC gummies. I sure wish I didn’t have to but nothing else has worked. Thankfully legal where I am. Ambien was great too – no side effects for me, but my docs didn’t want me on long term. They’re totally fine with me being on THC. I tried an online cognitive sleep therapy program thru Cleveland Clinic. It’s helped some friends of mine but didn’t work for me. I wish they’d do one a little less judgy for folks with PD!

Jeff Yates
Melatonin 6mg and magnesium plus vit d. Not terrible but not great. Late exercise kills my sleep. Occasionally pop a zopiclone a sleeping tablet or some kind of painkiller to knock me out. Oh I also get RLS and sometimes bad cramps in my calfs. Magnesium helps with cramps for sure.

Nicky Raph
I take temazepam not every night. I also take slow release madoparHBS 100/25 capsule.

Marcus C Leavell
I take RSO oil twice before bed to help me sleep. One of the few things that helps me sleep.  💤

Joe Fredendall
The biggest problem I have with Parkinson’s is falling asleep at night. Depending on how much exercise I’ve done during the day, I experience what I guess is referred to as “restless leg syndrome“. My feet and legs don’t necessarily hurt as much as they feel numb and cold. So I am constantly flapping around, trying to change positions and move my feet and legs to somewhere where they’re comfortable. Eventually, I fall asleep in the next time I wake up it’s a couple hours later in the problem is not quite as severe.

Joe Fredendall Does exercise increase or decrease RLS symptoms for you?.

Jose Mata increase. It seems to be worse after I have exercised hard.

Gunilla Beard
PD is very disruptive of sleep. I was not getting enough REM and deep sleep cycles and had insomnia, both difficulty falling asleep and staying asleep. Now with taking an extended release carbidopa/levodopa at bedtime I sleep very well and have dreams (I didn’t have dreams for a few years prior to diagnosis).

Michelle Tuesday
(1) 10 mg melatonin + 50 mg trazodone OR 10 mg melatonin + 25 mg dyphenhydramine (brand name Simply Sleep, the same ingredient as Benadryl). I change up the trazodone and dyphenhydramine to avoid dependence. Doc says neither cause dependence, but I swear when I’ve taken one for a week and then switch to the other, I have one or two really great nights. (2) Keep my constipation under control to prevent back and abdominal pain during sleep, which I accomplish with 290 mcg Linzess and a capful of Miralax in the morning and 1-to-3 Dulcolax tablets at bedtime, plus plenty plenty plenty of water. (3) 15-lb weighted blanket to calm my leg muscles. It makes me sweat, but it’s worth it. (4) If my muscles are being ornery before bedtime (usually hips, thighs, calves and feet, but sometimes neck, back, and shoulders, too), I massage them with this (for hips/legs/feet): https://www.amazon.com/RAEMAO-Electric…/dp/B0BC1GS34Q/ or this (for neck/back): https://www.amazon.com/Massager-Shiatsu…/dp/B07WJSY2G8. Despite all that, I still don’t get adequate sleep (more because of the dogs than the PD), or quality sleep (that’s the PD – I experience vivid dreams and according to my husband, I talk and scream often in my sleep.) Luckily I have the flexibility to nap due to self employment. EDIT: I forgot to mention, I also take extended release carbidopa-levodopa as my last dose of the day, although that’s between 6-8 PM versus a bedtime around 10-11pm.

Cathy Austin
Zalepon if all else fails. I use magnesium and a Tylenol pm. If that don’t work, I add 10 mg melatonin. Last resort Zalepon for 4 hr good sleep. I can take a 2nd if I awake and feel I need 4 more hours.

Judy Elston
Good old fashioned pot helps me. Right before bed. 2puffs, Gummies too.

Nancy J Cohen
We are both in a lack of sleep crisis because his PD effects both of us. The large doses of melatonin that helped him with REM sleep behavior disorders had other cumulative negative effects and so he is being weaned off it. We hope that a more or less drug free night ritual will help. Maybe magnesium? Will ask our MDS next month and will share his ideas.

Trish McLoughlin
Avoid looking at my phone for about 30 mins before sleep…and charge it in another room.

Wayne Munchel
A few weeks ago, I was only getting a couple of hrs sleep due to muscle rigidity. I tried cannabis gummies (hybrid CBD/THC) and I’ve slept 8 hrs solid ever since They also throw in some lavender & chamomile. Very pleased.

John McCrea
I’m in the midst of trying to deal with that now. I have tried extended release ritary, magnesium and melatonin in various doses- the magnesium seems to have done the best but its a mixed bag. Last night I woke at 12:15 and styed up for almost 3 hours until dozing off-haven’t done that in a few weeks. I have not found the perfect solution yet – maybe I never will.

John McCrea I’ve experimented with melatonin and magnesium and meditation etc. What helps me is an extended release c/l 50/200 at bedtime.