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Do you struggle with sleep disturbances?
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My restful sleep problems began when I started getting moderate-severe dyskinesia from the PD meds and for the past 2 years I have tried several fixes, most of them inadequate. Exercising has been my best defense against PD for 15 years, but the night “hard” tremors are both persistent and relentless. I have learned to control the dyskinesia during the daytime with yogurt, kefir, and exercise, and have reduced my Ropinirole Rx by 1/3 and now take 1 L-Tyrosine mid-day, while adding Carb-Levo Extended Release to my daily Rx dosage. Overall, the “hard and painful shakes” are much reduced and perhaps this will continue. :))
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As an update to my prior input on quality of sleep, the disturbances have become routine: I wake after 4 hours and take 1/2 each of the ER C/L with 1/2 of the IR C/L, and experience hard unstoppable shaking until the med kicks in. Drinking water in the middle of the night necessitates a bathroom trip which increases the tremors. All in all, it sucks. ER C/L has not helped my dyskinesia episodes and I hope to stop taking them next week. I also take 10 mg of Melatonin. and CBD has not helped. Am hoping to participate in MRI directed US if accepted, and look forward to the Parlinson’s Glove Tx release by the FDA, hopefully, this year. My motto is “Never Give Up”. Please share your efforts until we beat this monster. :)) https://www.youtube.com/watch?v=GySCSlEBC6M
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Hi there! I’m sorry to hear about your dad’s struggle with sleep disturbances.
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Hi there! I’m sorry to hear about your dad’s struggle with sleep disturbances. I can relate to how challenging it can be to wake up feeling exhausted even with a consistent sleep schedule. A few years back, I too was having trouble sleeping. But I stumbled upon Sleep Underground and started reading the reviews of different sleep products. I decided to try out a few and I have to say, it made a huge difference in my sleep quality. I now wake up feeling rested and refreshed.
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Yes, I have sleep problems, waking several times a night. I have occasional incontinence issues and even if i don’t need to go I do. Mostly hip pain wakes me – it’s irritated musiclature. Sleeping in in the morning seems to help. I was diagnosed in 2009 and like JJ I work out regularly at the gym since 2003. I credit it with being alive and mobile today at 81 years old – though dyskenesia is becoming more problematic in the past few months.
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Has anyone been able to control RBD events and dream content with anything other than drugs? I have developed a diet that uses simple foods that have virtually eliminated my RBD events and has changed my dream content from violent to non-violent.
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I would have the most disturbing dreams that would wake me and then I’d be up for hours. I was on 1 50 mg Trazadone but taking 2 makes a huge difference. I usually sleep 8 hours now.
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Just adding my two cents to this revived thread.
My PD Doc prescribed 2 3 mg melatonin capsules and two carbidopa/levodopa CR 50/200 tablets at bedtime. Most nights this works for me. Before this I found my self too frequently still trying to get to sleep in the AMs. I still never feel really rested or refreshed in the morning. But I have at least slept which allows my bodily functions to get some needed restoration.
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My husband was diagnosed with REM sleep disorder 15 years ago. He was put on 1 mg of Klonopin. It has worked for all these years. He doesn’t have the violent dreams and sleeps well. He was diagnosed with PD 1 1/2 years ago.
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Yes, though never would have thought about it before PD kicked in, sleep is a major factor in PD because of the rigidity of the body- what seemed so natural before PD is plays a big part of how i feel during the day. My routine is starts at 10-11PM, I start taking my meds regimen: At 1030 to 1130 I take 3 Ibuprofens and 2 Hylands Leg Cramps tabs , along with 1 zolipidem (Ambien generic) and 1/2 of a ‘zopiclone'(similar to ambien also- get those from a guy in INDIA,) and-take 2 25/100 carbidopa -levadopa and that concoction gets 4 hours, or sometimes 4:30 hours if I am tired…as long as i get to bed within 45 minutes of taking that stuff I’ll fall asleep for 4 ish hours
Then it’s up at 4-430 to feed cat, heart up micr0waze flaxseed pad, take 2 ibuprofens, and the other other half of the zopiclone – then I lay down on my back (I/m stomach sleeper normally, put ear plugs in, heat pad on stomach, and try to doze off –this was working so so until I added my PEMF mat to the mix (kinda pricey at $2500)I won’t mention brand name here but this PEMF device has a mode specifically for sleep, and it works! i’ve been getting 3-3.5 hours after I started using PEMF pad – still taking all those drugs, but it’s great to get 3-3.5 hours sleep in my second sleep period, it has made a big difference for me. God Bless.
WROTE THIS AFTER TAKING MEDS, NEED TO SLEEP!
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At my wife and my daughter’s suggestion, I got an Apple watch over the Thanksgiving holiday. Mine is the simplest version, and one thing it does is keep track of the amount of sleep I get and the various sleep stages. This information is automatically transferred to my Iphone. The increased awareness has me going to bed earlier and sleeping longer. That works for me, unless the cat decides to get on top of me while I sleep. A simple fix that others may want to try. 78 year old male diagnosed about 4 1/2 years ago.
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Repost for clarity. The rigidity – unable to relax muscles – from PD makes sleeping for me impossible without meds. I take zolpidem (ambien) along with an half of an ambien clone from India, Zopiclone, along with Ibuprofen, valerian, and lately, Pm Leg Cramps tablets from Hylands, phew!
That gets me about 4 – 4.5 hours sleep, then I wake up, usually about 4-430AM, take the other half zopiclone and a couple more Ibuprofens., feed the cat, then lay back down…It was hit or miss whether I actually got any more sleep, often would not …until just recently… I bought a PEMF mat, and the brand I bought actually has a sleep mode, and it works! So now I’m getting back to sleep in the early AM…not ideal, having to take all those pills, but it beats not sleeping! God bless everyone.
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I’m a very light sleeper and sleep with a snorer. I take 2 sleep aids from Now vitamins. They have melatonin, valerian, l theanine, skullcap and hops, etc. If needed, I will take Benadryl. I also do a couple of puffs of 20/1 thc/CBD and high THC tincture that I get from a medical cannabis store in NY. The puffs help me relax and reduce pain. The tincture keeps me asleep. If I wake up in the middle of the night to pee, I can easily get back to sleep. I think if I exercise during the day that helps too.
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I have struggled with sleep issues for 20 years. I have fibromyalgia. In addition to PD. It is very frustrating and I have tried everything including prescription medications which didn’t work very well for me because of side effects. I take Sinemet 3 times daily and my neuro recently added Sinemet-CR at bedtime. I find I have to keep a rigorous schedule with meds, meals, time for bed and getting up. What works best for me is to eat at 6-6:30 pm, take Nature’s Bounty Sleep 3 at 8:30 pm, take my bedtime meds at 9:30 and go to bed. If it’s going to work, it works very well. There are some of those nights that nothing helps as all of you know. Since everything has become so regimented for me, I am trying to emotionally cope with all of that. It is easy on the weekends to get off schedule and I have problems when I do. Planning a trip is difficult because of my schedule. I guess like all of us I just have to do the best that I can. If you haven’t tried to Sleep 3 I would suggest doing so. I can also tell you that I have read credible research articles recently that indicated that melatonin is a good supplement to take with Parkinson’s sleep problems.
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I can totally relate to the struggle with sleep disturbances.
For the longest time, I found myself in a constant battle with fractured sleep, waking up multiple times during the night. Like many others, I tried a variety of remedies, from melatonin to prescription meds, but unfortunately, nothing seemed to do the trick.It got to a point where I resigned myself to the idea that I might just have to settle for a few hours of sleep each night. Reading your comments, I see that you too have gotten used to sleeping less.
However, I decided to make some changes in my bedroom to make those precious few hours of sleep more comfortable and effective.
First off, I upgraded my mattress and invested in a Pluto pillow, which fits perfectly under the way I sleep. I say this because I also have pain in the neck area. The CertiPUR-US foam core provides just the right balance of support, and the plush cover with down-alternative microfibers feels like a dream.
The combination of upgrading to a quality mattress, incorporating blackout curtains to create a darker sleep environment, adding the Pluto pillow, and investing in soundproofing solutions for my bedroom has significantly improved my sleep.
Certainly, not everyone would need soundproofing for their home or bedroom, but I live in a noisy area in the city center, and this significantly contributes to discomfort during sleep or even falling asleep.
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Sleep disturbances can be a real pain in the butt. Personally, I’ve been through my fair share of restless nights, tossin’ and turnin’ like nobody’s business.
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But lemme tell ya, I stumbled upon something that’s been a game-changer for me: https://releaf.co.uk/ . Now, I know it might sound a bit out there, but hear me out. I started incorporating a bit of cannabis into my nighttime routine, whether it’s a little vape sesh or some edibles, and lemme tell ya, it’s been a game-changer. It helps me relax, unwind, and drift off into dreamland without all the usual tossing and turning. Of course, it’s not for everyone, but for me, it’s been a lifesaver. So, if you’re struggling with sleep, maybe give medical cannabis a shot and see if it works for you!
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I find red light therapy before bed reduces muscle stiffness I think and therefore I toss and turn less and sleep more.
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I sell my jewelry at art shows and on those weekends I take a Benadryl tablet and get 8 hours sleep. The next couple of days without I’m lucky to get 5 hours of sleep. I haven’t tried taking it consistently during the week because I’m afraid it won’t keep working. Also steady use has been linked to Alzheimer’s. When I’m home in Montana I take 4 1/2 mg of indica gummies before bed and that really helps me sleep. Unfortunately I often travel to states that don’t have recreational and I can’t get a medical card being from our of state.
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