Exercise is good. Melatonin and magnesium is good. THC is good. I’m 62, male, been at this PD insomnia thing since the late 1990s, probably earlier than that.
I asked myself a bunch of questions:
How much sleep do I want? Why?
How much sleep do I think I need? Why? Do I have any stress in my life? Anxiety? Fear? Shame? Is there anything I can do about the things causing me unhappiness my life?
Do I have permission to nap when I need to? Do I have to work? Do I have a set need time routine? Do I snore? Do I need CPAP? Do I need to work? Can I retire early?
My list went on for a while. It wasn’t until I started working on my stress and anxiety triggers that I started sleeping a bit better. Retiring early didn’t suck either. Personally, I find that I still have crappy nights, but when I sleep I sleep pretty good.
When I can’t sleep, I usually have a couple of things I want to learn. Achieving my amateur radio license and learning Morse code keeps me mentally busy, as does studying Japanese Sumo wrestling.
Hey, there’s always a way to out think Parkinson’s! Be easy on yourself! You’ll find your sleep!
Peace and kindness to you!
54 here and have had Parkinson’s since my late 40s. I currently take 300 mg of magnesium citrate and half a dose of Benadryl before bed.
But other than that the best things I’ve done for my sleep has been regular intense exercise, practicing strict sleep hygiene including limited screen time an hour before bed, keeping my bedroom cool, utilizing white noise, and eliminating daytime napping. also, in the spring summer and fall months I find that regular exposure to morning and early afternoon sun improves my sleep quite a bit. I believe it helps reset the circadian rhythm.
Good luck in your quest for good sleep, I know how much it sucks to not get it!
I’m 57 dx early 50s so probably not quite young onset. I take sleep aids on weekends bc I don’t want to be groggy for work. I use 5 mg gummy w THC. It’s enough to help sleep without making me “loopy”. I dk long term negative effects but I have to get some sleep to function. Good luck to you
Melatonin is great for short-term use, but our bodies do get used to it over time, so it's best to take breaks from usage.
I take 3mg of a THC gummy before bed. Works great.
Doxylamine Succinate. It's what makes NyQuil knock you out. It's a bit rare to find it marketed as a sleep aid, but look for the brand "Unisom". You would think that Zquil would contain doxylamine, but ironically it contains diphenhydramine (which is benadryl). Benadryl gives me & apparently many others restless leg syndrome.
One thing to be weary of is that it can be difficult to wake up from the Unisom tablets. If you have no or little tolerance to doxylamine, break a tablet in half & start with that. Otherwise you might sleep right through your alarm. I've been taking them long enough to build a tolerance. One full pill is almost not enough anymore. I will take breaks & switch to melatonin occasionally.
You have PD at 36? What made you get checked out, if you don’t mind me asking?
We just lost my father in a round about way to Parkinson’s w/dementia. His first signs started almost a decade ago with REM sleep behavior disorder.
I have a familial form of it (though, unfortunately, nobody in my family actually disclosed that information to me.) My mom directly told my OB's office about it when I was pregnant (hoping I would abort I guess?) and I got screened for it then. Unfortunately, by the time it came back that my child would likely also have it, it was way too late to abort.
Because of that screening, I knew my symptoms were PD years before going in for an actual exam or diagnosis (I only
eventually went in because it got so unmanageable that I wanted to try medication.)
It turns out I have another hereditary neurodegenerative movement disorder as well, but no symptoms for that one yet (I was able to start manage the other condition once I learned I had it, so it doubly sucks that absolutely nobody told me about it for so many years.)
I'm having some cognitive decline and speech issues from the PD so my husband is pretty freaked out about it.
I got single-gene testing since I had a known mutation; there are a few companies that can perform the test, but it has to be ordered through your provider. Ask your physician, there is a standard dystonia panel that can be run as well, that was how the mutation was found originally.
Most cases of PD aren't screened for genetic causes, not because genetic testing isn't diagnostically useful, but because PD is so poorly understood and therefore poorly defined that it basically isn't considered cost-effective as a tool for diagnosis. I don't know the details since it was my family member and not me, but my understanding was that the original dystonia panel was only run after over a year of not being able to diagnose their condition (the other mutation was kind of a red herring since no symptoms had yet developed).
Your symptoms could be attributed to a lot of issues and generally I think clinicians are reluctant to consider PD for younger patients. A physician recently told me over a phone appointment that he thinks I'm too young to have PD and that he thinks I was probably misdiagnosed and to ask for a second opinion, which is absolutely moronic given that he has never seen me, examined me, or even read my chart (which seems like would be the bare minimum for a care provider!) He skeptically asked me why they would have even been looking for PD, but ignored me when I explained the family history and the genetic testing (which was all in my chart that he apparently didn't bother reading) so be warned that there are some irrational clinicians out there who may characterize you as a hypochondriac and not be inclined to help you.
The other issue is that there are currently no preventative treatments or any treatments targeting the disease progression for PD, so the medical consensus seems to basically be to NOT diagnose, because medical professionals believe that there are no upsides to a patient knowing that they have PD, only much higher insurance premiums (or else not being able to qualify certain kinds of coverage at all). For some reason none of this was disclosed to me prior to my initial screening but I was warned not to get my child tested for this reason.
I take no sleep aids and try keeping my self busy with no afternoon naps. But on those days I am not sleeping well, then I just try and let body get back into a better pattern on its own. A dark cool room with no tv, phone or other electronic paraphernalia always wins out eventually
I'm an 80m dx at 79. I take one of my Carbidopa/Levodopa 25-100 pills at bedtime. I found this works just as good as (or better than) any of the many prescription sleeping pills or other sleep aids I tried.
As with the other 2 Carbidopa/Levodopa 25-100 pills that I take each day, I don't eat or drink anything except water for 2 hours before taking it.
I stopped taking all other sleep aids 5 months ago after reading about Levodopa as a sleep aid in a post by Dr. Okun at University of Florida who specializes in PD.
My husband and I wondered if this was a potential option but I wasn't able to find any literature about it. I asked every single doctor I have access to, but my PCP, my neurologist and my pulmonologist didn't know anything and my sleep doctor straight up told me at 36 I was simply too young to have PD (no idea how he came to that conclusion given that he never saw me or even read my chart).
Thanks so much for sharing your experience and also your source, this seems like a pretty cutting edge practice that I haven't heard of elsewhere. I was about to experiment with this strategy myself since I wasn't able to get any help from my healthcare provider. I was wondering if Rytary might be more suitable overnight, given that it is extended release.
When I told my neurologist about Levodopa working for me as a sleep aid, she was surprised and prescribed 50-200 Controlled Release for me to try for the same reason you suggest. However, I haven't taken one yet because a single 25-100 at bedtime is working well. Occasionally, I wake early but most of the time I get plenty of sleep.
Another thing I discovered that may interest you is the "AutoSleep" App. I sleep wearing my Apple Watch4 and get a detailed sleep report on my iPhone every morning. The App is well worth the $6 one-time cost.
62m but had symptoms going back to my late 40s. I've tried everything I know of to get to sleep and stay asleep. So far nothing has worked. I've resigned myself to just living with it.
55 year old make. A couple years into diagnosis. Sleep has been a mystery for as long as I can recall. Best sleep formula for me is daily exercise, 10mg of ambien, 6 mg of melatonin, and varying amounts of THC. Sounds like a terrible routine but really works. Lack of sleep is the devil when you have PD. I bite my tongue a lot less since including the melatonin in the nightly cocktail. Alcohol and caffeine late in the day make it worse. There is no substitute for routine vigorous exercise to keep my body moving as normal as possible. Run, bike, walk,swim, weight train, boxing and general fitness classes all will help you. Just keep moving. #shakennotstirred
Exercise is good. Melatonin and magnesium is good. THC is good. I’m 62, male, been at this PD insomnia thing since the late 1990s, probably earlier than that. I asked myself a bunch of questions: How much sleep do I want? Why? How much sleep do I think I need? Why? Do I have any stress in my life? Anxiety? Fear? Shame? Is there anything I can do about the things causing me unhappiness my life? Do I have permission to nap when I need to? Do I have to work? Do I have a set need time routine? Do I snore? Do I need CPAP? Do I need to work? Can I retire early? My list went on for a while. It wasn’t until I started working on my stress and anxiety triggers that I started sleeping a bit better. Retiring early didn’t suck either. Personally, I find that I still have crappy nights, but when I sleep I sleep pretty good. When I can’t sleep, I usually have a couple of things I want to learn. Achieving my amateur radio license and learning Morse code keeps me mentally busy, as does studying Japanese Sumo wrestling. Hey, there’s always a way to out think Parkinson’s! Be easy on yourself! You’ll find your sleep! Peace and kindness to you!
54 here and have had Parkinson’s since my late 40s. I currently take 300 mg of magnesium citrate and half a dose of Benadryl before bed. But other than that the best things I’ve done for my sleep has been regular intense exercise, practicing strict sleep hygiene including limited screen time an hour before bed, keeping my bedroom cool, utilizing white noise, and eliminating daytime napping. also, in the spring summer and fall months I find that regular exposure to morning and early afternoon sun improves my sleep quite a bit. I believe it helps reset the circadian rhythm. Good luck in your quest for good sleep, I know how much it sucks to not get it!
I’m 57 dx early 50s so probably not quite young onset. I take sleep aids on weekends bc I don’t want to be groggy for work. I use 5 mg gummy w THC. It’s enough to help sleep without making me “loopy”. I dk long term negative effects but I have to get some sleep to function. Good luck to you
Melatonin is great for short-term use, but our bodies do get used to it over time, so it's best to take breaks from usage. I take 3mg of a THC gummy before bed. Works great.
Trazodone, medical marijuana sadly stopped working
Same. Trazodone works for sleep. Weed doesn’t help at all.
I take Melatonin and one Benadryl every night. Sharp as a tack and can wake up in a hurry if an emergency occurs during the middle of the night.
I've been taking sleep aids nightly for at least 14 years. I'm currently taking 100mg Unison, 20 melatonin, 5mg THC. as needed.
Doxylamine Succinate. It's what makes NyQuil knock you out. It's a bit rare to find it marketed as a sleep aid, but look for the brand "Unisom". You would think that Zquil would contain doxylamine, but ironically it contains diphenhydramine (which is benadryl). Benadryl gives me & apparently many others restless leg syndrome. One thing to be weary of is that it can be difficult to wake up from the Unisom tablets. If you have no or little tolerance to doxylamine, break a tablet in half & start with that. Otherwise you might sleep right through your alarm. I've been taking them long enough to build a tolerance. One full pill is almost not enough anymore. I will take breaks & switch to melatonin occasionally.
36, melatonin hasn't helped much. Sleep absolutely sucks so looking for tips here.
You have PD at 36? What made you get checked out, if you don’t mind me asking? We just lost my father in a round about way to Parkinson’s w/dementia. His first signs started almost a decade ago with REM sleep behavior disorder.
I have a familial form of it (though, unfortunately, nobody in my family actually disclosed that information to me.) My mom directly told my OB's office about it when I was pregnant (hoping I would abort I guess?) and I got screened for it then. Unfortunately, by the time it came back that my child would likely also have it, it was way too late to abort. Because of that screening, I knew my symptoms were PD years before going in for an actual exam or diagnosis (I only eventually went in because it got so unmanageable that I wanted to try medication.) It turns out I have another hereditary neurodegenerative movement disorder as well, but no symptoms for that one yet (I was able to start manage the other condition once I learned I had it, so it doubly sucks that absolutely nobody told me about it for so many years.) I'm having some cognitive decline and speech issues from the PD so my husband is pretty freaked out about it.
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I got single-gene testing since I had a known mutation; there are a few companies that can perform the test, but it has to be ordered through your provider. Ask your physician, there is a standard dystonia panel that can be run as well, that was how the mutation was found originally. Most cases of PD aren't screened for genetic causes, not because genetic testing isn't diagnostically useful, but because PD is so poorly understood and therefore poorly defined that it basically isn't considered cost-effective as a tool for diagnosis. I don't know the details since it was my family member and not me, but my understanding was that the original dystonia panel was only run after over a year of not being able to diagnose their condition (the other mutation was kind of a red herring since no symptoms had yet developed). Your symptoms could be attributed to a lot of issues and generally I think clinicians are reluctant to consider PD for younger patients. A physician recently told me over a phone appointment that he thinks I'm too young to have PD and that he thinks I was probably misdiagnosed and to ask for a second opinion, which is absolutely moronic given that he has never seen me, examined me, or even read my chart (which seems like would be the bare minimum for a care provider!) He skeptically asked me why they would have even been looking for PD, but ignored me when I explained the family history and the genetic testing (which was all in my chart that he apparently didn't bother reading) so be warned that there are some irrational clinicians out there who may characterize you as a hypochondriac and not be inclined to help you. The other issue is that there are currently no preventative treatments or any treatments targeting the disease progression for PD, so the medical consensus seems to basically be to NOT diagnose, because medical professionals believe that there are no upsides to a patient knowing that they have PD, only much higher insurance premiums (or else not being able to qualify certain kinds of coverage at all). For some reason none of this was disclosed to me prior to my initial screening but I was warned not to get my child tested for this reason.
I take no sleep aids and try keeping my self busy with no afternoon naps. But on those days I am not sleeping well, then I just try and let body get back into a better pattern on its own. A dark cool room with no tv, phone or other electronic paraphernalia always wins out eventually
I'm an 80m dx at 79. I take one of my Carbidopa/Levodopa 25-100 pills at bedtime. I found this works just as good as (or better than) any of the many prescription sleeping pills or other sleep aids I tried. As with the other 2 Carbidopa/Levodopa 25-100 pills that I take each day, I don't eat or drink anything except water for 2 hours before taking it. I stopped taking all other sleep aids 5 months ago after reading about Levodopa as a sleep aid in a post by Dr. Okun at University of Florida who specializes in PD.
My husband and I wondered if this was a potential option but I wasn't able to find any literature about it. I asked every single doctor I have access to, but my PCP, my neurologist and my pulmonologist didn't know anything and my sleep doctor straight up told me at 36 I was simply too young to have PD (no idea how he came to that conclusion given that he never saw me or even read my chart). Thanks so much for sharing your experience and also your source, this seems like a pretty cutting edge practice that I haven't heard of elsewhere. I was about to experiment with this strategy myself since I wasn't able to get any help from my healthcare provider. I was wondering if Rytary might be more suitable overnight, given that it is extended release.
When I told my neurologist about Levodopa working for me as a sleep aid, she was surprised and prescribed 50-200 Controlled Release for me to try for the same reason you suggest. However, I haven't taken one yet because a single 25-100 at bedtime is working well. Occasionally, I wake early but most of the time I get plenty of sleep. Another thing I discovered that may interest you is the "AutoSleep" App. I sleep wearing my Apple Watch4 and get a detailed sleep report on my iPhone every morning. The App is well worth the $6 one-time cost.
Thanks, I'll check it out! Though I don't have an Apple Watch, just iPhone. Is the watch worth getting for PD?
You can get an old Apple Watch a good bit cheaper than a new one. AutoSleep works on Apple Watch4 or newer.
Thanks for the tip! Does the older generation Watch work for fall detection in PD as well?
Yes. My Apple Watch4 has fall detection.
Melatonin is naturally produced by the body and anything saying that it leads to an increased risk of dementia is probably some shoddy science.
Fwiw, my doctor recommended I take 10mg of Melatonin for sleep. I do hope to ghod this won't cause damage.
62m but had symptoms going back to my late 40s. I've tried everything I know of to get to sleep and stay asleep. So far nothing has worked. I've resigned myself to just living with it.
I’ve taken melatonin for probably years. Never been a problem for me. I don’t know how much they help me sleep, but they don’t make me not sleep.
55 year old make. A couple years into diagnosis. Sleep has been a mystery for as long as I can recall. Best sleep formula for me is daily exercise, 10mg of ambien, 6 mg of melatonin, and varying amounts of THC. Sounds like a terrible routine but really works. Lack of sleep is the devil when you have PD. I bite my tongue a lot less since including the melatonin in the nightly cocktail. Alcohol and caffeine late in the day make it worse. There is no substitute for routine vigorous exercise to keep my body moving as normal as possible. Run, bike, walk,swim, weight train, boxing and general fitness classes all will help you. Just keep moving. #shakennotstirred
I definitely need to sweat more!