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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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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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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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