Sleepless with Parkinson's

By popular request, this is the first blog for those of us who are awake at night and feel alone and frustrated. If this is popular enough I might start a new blog with a new start date every few days. Who's up to tonight ? I'm away from my home with my daughter and grandkids and wondering how I will sleep tonight. I have terrible sleep habits at home but at least I'm home. Getting away is lovely but I dread the nights with all of us in one room .

15 Replies

  • I'm nodding off now. Someone else pick up the threads and maybe we can get this going... This space is for support but also interested in practical suggestions and any new research information. Good night but don't be surprised if I'm back on on a few hours.

    Aloha, Jill

  • you are far from alone. I spend countless nights awake!! I know what you mean when you say being at home is better. i am planning to visit my son in Savannah at the end of the month and already I am concerned as to how I will spend my nights.

    Perhaps I will see you here. Now I am off to work after having but a few hours of sleep..UGH!

  • Yep, I got three and a half hours of sleep and am trying to stay quiet in the hotel room but my coughing ( asthma too) was waking the others so I'm holed up in the bathroom with my IPhone and dawn 2 hours away . I'll make one more try at sleeping . Don't feel too bad for me as when dawn comes the view is gorgeous here in Hawaii.

    Aloha jill

  • I have only slept thru the night twice in the last year. I can take 2 sleeping pills, 3-4 drinks, another sleep aid I use and still wake up after an hour or 2. Most people would be in a coma let alone asleep. 4 hours a night is the norm. Medical Marijuana is what I need but in NJ will probably not get but we should qualify to be users; nothing else works.

  • Day2 April 7- went to sleep too early - 9:30. Woke up at 11:30. I'm still away with family at a hotel so I only have my iPhone to make the hours go by. Watched at least 10 Adele videos, 3 TED talks (check it out, great stuff) and now checking blog site . Found out I missed the party .

    My question to ponder today is- what does long term sleep deprivation do to the brain and body? What benefits would we see if we could turn it around even with pd progression?we'be been told that sleep is restorative but how does that work and what are we missing? I'm going to try to find out. I do now try to stay in bed if I'm awake at night so even if the mind is racing the body is resting . Anybody else awake out there or is most of the world already at Easter Brunch?

  • I had a bad night. Read half a mystery. I can read these over and over because for some reason ( :D ) I can't remember whodunnit! Woke up a few hours later and lay down on couch to watch news. Dozed through news and woke up to find CBS New Sunday Morning was already on. Oh well. Time to make the coffee. Have a good day.

  • I too, have sleep problem. I now have sleeping pill to take. two pills about 2hr before going to bed, will be able to sleep in about 30 min. will wake up after about 4 hr, will go back to sleep the get up 2 or 3hrs later. If i wait to take the pill at bed time it take at least 2 hrs to get to sleep. I am still tired when I get up as I have pain in my lower back from arthritis, even after taking two advil.

  • It's 3:30 am & yes, I'm awake! ... If I do manage to fall asleep, very intense and vivid nightmares wake me ... sleep aids seem to work backwards for me ... if I can fall asleep around 5 am, I may sleep until 8 (that's a plus!)

  • My sleep early in the morning from 4 a.m. to 7 a.m. seems much more refreshing than the beginning of the night. my pattern seems broken in 2 parts, 2-3 hours of sleep from 11 or 12 and then 2-3 hours before dawn. No nightmares for me. In fact, no recollection of dreams at all most nigihts. If I take a short nap during the day, I immediately go to dreamland.

  • Before my diagnosis, I had simply gotten used to interrupted sleep. I always fell asleep fine about 11:00, then I was up at 1:30 and 4:00, or sometimes 12:30, 2:00 and 4:00. Each time I would get up, have a snack, and surf the cable channels, often getting sleepy again in 15 minutes or so. This pattern didn't affect my full-time job at all.

    After my diagnosis, I started taking Mirapex and guess what --- I sleep through the night!

  • How long ago were you diagnosed?

    Glad you're sleeping well.

  • I was diagnosed in January of this year.

  • Sleepless update. Pattern this week seems to be to fall asleep watching TV (didn't feel sleepy at all) and wake to 2-3 hours later,stay awake 1-2 hours and then sleep another 3- 4 hours so at least I'm getting more sleep.

    I checked with my new neuro about melatonin so I am going to start taking it regularly before bed. 3 mg .

  • I can only sleep for approx. 3 hours a night. I get so tired during the day and am reluctant to sit in a comfy chair as I fall asleep. My Parkinsons nurse prescribed me pills to take before going to bed but they made me vomit.

  • I never get more then 3-4 hours sleep at a time, was never like that b4 the meds

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