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My dad never seems fully rested. Although he maintains a consistent sleep schedule, he wakes many times during the night, which leaves him exhausted come morning. I’ve heard others talking about the sleep disturbances that they’ve experienced from Parkinson’s disease. Do you struggle with similar disturbances? If so, is there anything you’ve done that has helped to minimize them?
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I had the same kinds of problems, where I couldn’t sleep consistently. I’d sleep for the first few hours and then be up for a good 30 minutes and then just kind of “bob along the surface of sleep” until morning. So I’d be pretty foggy following those nights. Melatonin and OTC stuff didn’t work, so I asked my neuro about a non-addictive aid, and she prescribed Trazodone—it has made a ton of difference! A separate neuro also got me on a CPAP machine, which I struggled with for the first week but now do fine with. That combo means I wake up only 2 times a night at this point.
Good luck to your dad!
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I wake constantly throughout the night. Fractured sleep (and insomnia) is among the many symptoms of PD. I’ve tried a wide range of treatments, from melatonin to magnesium and everything in between (except prescription meds), but nothing has helped, unfortunately.
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Right now this is my husband’s worst symptoms. Most nights he wakes yelling or striking out at some danger. Of course, this disturbs both of our sleeping. He started taking Mannitol (as seen on this site) and has had relief from the extreme fatigue but the nightmares continue. He has also said that Mannitol makes his stomach feel “funny” like he is on the verge of diarrhea. Has anyone else experienced this stomach problem?
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Hi, Sharon. I’m a caregiver for a late-stage PD patient and have him on a little Mannitol. In his case, his normal meds (Rytary) do such a number on his colon (the usual constipation) , and he’ s taking so many drugs, that I can’t isolate an effect from Mannitol.
But what your question really reminded me of is this: I’ve never encountered a sugar alcohol, of which Mannitol is one, that didn’t wreak havoc on my colon. If I chew too much Ice breakers gum (Xylitol, Maltitol, a little Mannitol), the muddy river instantly rages like it’s monsoon season.
I think the effect is quite common. Even when I was a kid, my friend and I used to deliberately eat a bunch of nasty, artificially-sweetened Velamints in order to have spectacular “gas” battles with one another.
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I take melatonin and trazadone right before I go to sleep, & still have fractured sleep. I sleep 2-4 hours. I have to get out of bed, it’s like my body needs to be in a different position. (I take advantage of the opportunity & use the restroom). I’ve tried to go back to bed but by te time I get myself on th bed ,scoot up to the head of the bead, get in my sleeping position & try to pull the covers over me, I’m exhausted & wide awake, I have concluded that i can no longer tolerate the bed. So now I do not try to go back to bed. Instead I go to my lift chair turn on the tv on & off in 1-2 hour increments. I getup at 4:00am to take my 1st dos of meds, then around 8:00 after my husband has left for work & before my caregiver arrives 10:00, I rest/sleep in my lift chair.
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I struggled with sleep before I was diagnosed, so Parkinson’s explains why. It appears I started my third year this past July. I still can drive, walk with out problems except for some balance, so I did a balance class. My tremors in my hand are still there, and better when I have no anxiety. My doctor said he may try botox on me it it has work for others. I am exercising in a class 2x a week, and use the treadmill opposite days. My brain does not do well with short term and since I am 84, wish I knew how much was due to old age and how much to Parkinson’s.
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My neurologist suggested I might be struggling with REM Sleep disorder. I act out when sleeping. I don’t have RLS but I’ve used a CPAP machine for the past 15 years for my sleep aponea. I guess maybe that might be when my PD was in it’s earliest stages.
I am knackered by 9:00pm every night. But if I awake to go to the loo in the middle of the night, I really struggle to get back to sleep. I’ve started on a course of Melatonin. This seems to help my REM-SBD issue.
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One of the symptoms of PD is sleep disturbance. I find myself waking up several times a night due to a sleep disturbance (have to urinate or had a disturbing dream). I also can’t sleep beyond 4 or 5 in the morning and often have to take a nap around 4 in the afternoon.
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Rick, my sleep timing is exactly the same as yours. I wake up between 4 & 5 most mornings and feel alert and full of energy. I feel better about my 4:00 in the afternoon bedtime now!
Acting out, and intense dreams are a difficult PD symptom for me. After one night when I threw myself out of bed, hit my cheek bone on the bedside table, cutting it to the bone and barely missing my eye, Trazodone was prescribed. That has stopped the intense dreams, but hasn’t changed my sleep schedule.
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Hey Barbara F… thanks for your informative forum post. My RBD journey has prompted acting out behaviors like thrashing my limbs about, resembling a carp on a hot sidewalk, shouting out, punching, kicking, and rolling violently out of my bed.
I’ve been lucky not to injure myself, but my spouse has run for the hills at bedtime.
You mention the need for napping. I too need naps daily. At around 3:00pm, I start to seriously flag, and soon enough I’m on our couch snoozing away for no less than one hour, more often 90 mins.
GP’s don’t prescribe Trazodone in NZ, so Melatonin is my only option — unless I want to start taking Domperidone (10 mg) before bed nightly. Has anyone out there tried this sleep aid? I never heard of it until my Neuro suggested it a week ago.
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Oh yes, this is all too familiar to me as well. Sleep is one of my all-time favorite hobbies and I can never seem to get enough. I was diagnosed approximately 5 years ago (epic 60th birthday gift!). I take a 1/2 of a Carbidopa-Levodopa and two Melatonin nightly. Most nights I have the same results; get to sleep quickly, wake from a dead sleep, go pee at least twice, go to sleep after 3 due to exhaustion! I’m all ears for a good solution friends…
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Diagnosed PD 10/2017. Didn’t have any definite sleep problems until about 12 months ago. I would be awake until 3-4 am and out of bed at 8 am, tired and weary. My PCP prescribed Trazodone 100 mg, then increased dosage to 150 mg at bedtime. Worked for a couple months and then I was back to 3-4 am. PCP does not want to increase the dosage any more. Since I live in Illinois and cannabis is legal here, I tried relaxing THC mints. These also helped for a short time. I now have my medical cannabis card. I am taking THC 10 mg Indica gummies about 10:30 pm and heading to bed at midnight, asleep within half an hour. I intend to purchase an Indica THC cartridge for calming, relaxing, and sleeping to supplement the gummies. As with PD, everything is trial and error with cannabis.
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Sleep issues are my worst PD symptom. Tried everything mentioned in this forum and then some, except Mannitol which I do not believe in. Only thing that makes a true difference for me are the Orexin receptor antagonists. Take this 2x per week, the only nights I pretty much am guaranteed a good night’s sleep. Would take it more but do not want to get tachyphylaxis…
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I often suffer from insomnia. Canadian pharmacy states the range of serious problems that can cause insomnia. Of course if you have Parkinson’s, you’d probably have problems with sleep. However, I think that in most cases my insomnia is a cause of an absence of sleeping schedule.
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My husband had sleep disturbances even before being diagnosed with PD, and we now realize that the disturbances are PD-related. So far the best bet for him is taking 3 mg melatonin and an extended-release version of Sinemet right before bed. If we feel the disturbances getting worse, we would comfortably go up on the melatonin dosage. Good luck!
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I don’t ever sleep more than 3 hrs at a time. It’s more like napping.
my body hurts so bad that I wake up every 2.5 – 3 hrs. I also have to pee a lot throughout the night so between the 2 I just don’t sleep well anymore.
Before 2016 when the Parkinson’s reared it’s ugly head I slept like a baby all night long.I’ve tried different things like gummies and sleeping pills to no avail.
I’m reserved to the notion that I sleep when I can and that’s life.
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Yes, part of which has to do with problems emptying my bladder, however for the past year I’ve been using a catheter three times a day and that has all but eliminated that part of my sleeping problems. That solution to the bladder problem is one I avoided for several years, however do no regret making the decision. Still have trouble staying asleep, which seems to be related to nightmares, sweating, drooling or PTSD . . . or a combination of these. Many nights are ones in which I get 4, 5 or 6 hours of fractured sleep. I don’t want a prescription for sleep, however find that Aleve PM seems to work pretty well, although the PM part messes with some of our PD meds. I use it very judiciously . . . maybe 2 or 3 times a month.
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Avoiding alcohol helps with the waking up and the need to pee. If I imbibe it is early and lightly (happy hour 3 to 6!). If I overdue it I am up every 2 hours. I try to time my Sinemet for a dose right at bedtime. I find that I tend to wake when the last dose runs out. So that limits me to about 4 hours because a dose only lasts me about 5 hours and it takes me awhile to get to sleep. I find that I use the bathroom because I’m up, not up because I need the bathroom. Thankfully I can usually go back to sleep. Resigned to getting broken stretches but if I can get that first stretch to last 5 or 6 hours it is great. Tend to be up for good around dawn so try to get to bed by 10. Had to stop Rytari which was great for me but unfortunately experienced side effect. Tried melatonin didn’t seem to help. Seems like we all have similar experience. Trying CBD gummies next.
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Yes I do. I go to sleep around 9:30pm and have my 1st call to the toilet around 11:30pm. The 2nd call is about 03:30am finding no difficulty in going back to sleep. I finally wake at around 07:45am in time to take my 1st regimen of medication at 08:00am.
My final medication for the day is Circadin (2mg Melatonim) taken at 06:00pm.
I’ll discuss the above pattern when I see my neurologist on 20th September.
Regards,
Barry Alder
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I take a cup of Yogi Bedtime tea, which includes valerian root extract, along with a 10mg Melatonin, which starts with a strong effect, then levels off to a continuous release.
I brew another cup of the tea, which I put on my dresser to drink if/when I awake at night & get up to pee. This was my neurologist’s suggestion, & it works well, helping me gently back to sleep. If I don’t drink the midnight dose of tea, I just save & use it for my next bedtime dose, so nothing’s wasted.
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Me again. Still struggling with sleep. I have seen three Movement doctors and none have helped with sleep. They don’t want to give you anything.
For me, with bad allergies and lung issues, I desperately need sleep. So frustrating. \
I have tried so many things I see on Facebook to no avail. Money wasted.
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Yes- one of my earliest symptoms was acting out in sleep. The first time I was dreaming I was Bruce Lee, doing some sort of flying kick over a car; my wife and I woke up when I was kicking her in the side. Initially, L-dopa and a weighted blanket helped, but I was eventually put on Mirapex, which made a drastic difference. I still wake up somewhere between 3:30-4 am every morning, regardless of what time I go to bed. So, I just get up and start my day. That takes a toll.
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I’m 5 yrs into this thing and yes, sleep problems are very bothersome. 5 mg of Melatonin does help me some. I’m not against getting a prescription sleep aid if it gets worse. This method isn’t for everyone but I turn the TV on with volume real low and turn so I can’t see it. Helps stop my mind from racing.
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Hello.. I am 61 and was diagnosed 4 years ago. Sleeping has been an issue for me but lately it seems to be getting better. What I do is I wake up early and exercise for 45 min. At night I take one tan of Clonazepam which was not working very well until my MD added TRAZODONE. It has been a game changer. Before I was waking up 3-4 times every night. Now I sleep from 11 to 4:00 am walk around for 15-30 min and go back to bed for another 1.5-2.0 hrs.
I feel much better now..????
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Translation: Before being diagnosed with Parkinson’s, I never had any problems such as sleep, although I did not sleep, or had to, because I worked.* At 11:00 p.m. I went to bed and at 7:00 a.m., I was taking a bath. Like Parkinson’s, I did not alter, Same nothing, everything the same. Lately, for reasons not related to homework, I didn’t sleep for 7/8 hours, but I’d rather be a passenger. I didn’t sleep during the day. I have a busy time, because I live alone, I still consider myself self-employed, cook my own food, clean the house, take care of the garden, produce some food, such as sweet potatoes, feijão, pears, figs, etc. From second to sixth I am in physiotherapy from 9 am to 10:30 am. I did everything not only to feel useful, but also to go to an institution. A neurologist, I received any medication to sleep. Two years ago I had surgery My heart, and I believe that during my hospital stay, I was medicated to sleep. I concluded that the less I think about doing, the better the days will pass.
Antes de ser diagnosticado com parkinsson, nunca tive problemas com o sono, bem peço contrario, dormia o necessáario, pois trabalhava.*As 23 horas ia para a cama e as 7 horas , estava a tomar banho.Com o parkinsson, não alterei, mesmo nada,tudo igual.Ultimamente por motivos naõ relacionados com a doença, não durmo as 7/8 horas, mas julgo ser passageiro. Não durmo durante o dia. Tenho o tempo ocupado, pois vivo sózinho,ainda me considero autonomo, cozinho os meus alimentos, limpo a casa, cuido do jardim, produzo alguns alimentos, como batatas, feijão, peras,figos etc. De segunda a sexta estou na fisioterapia das 9 horas ás 10,30 horas.Faco isto tudo não só para me sentir útil, mas também para adiar a ida para uma instituição.Nenhum neurologista me receitou qualquer medicamento para dormir.Há dois anos fiz cirurgia ao coracão, e julgo que durante o internamnento,fui medicado para dormir.Chego á conclusão que quanto menos pensar na doença, melhor passarei os dias.
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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. 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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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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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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