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    • #23310
      Mary Beth Skylis
      Moderator

      My dad (who was diagnosed with Parkinson’s in 2013) has always had a hard time sleeping. We used to think that it was just a curse, and that he was unlucky. But now we wonder how much his inability to sleep correlates with his Parkinson’s diagnosis. Are you able to sleep through the night? If so, what’s your secret? If not, do you think it’s because of Parkinson’s or something else?

    • #23453
      Jeffery Hill
      Participant

      Early in my diagnosis (2016) I had no trouble with sleeping.  However in the last 2 or so years I have had quite a bit of trouble.  Either I take hours to fall asleep, or I wake up in the middle of the night and take hours to fall back to sleep. My father, who also had PD, had the same symptoms.

    • #23461
      Chris
      Participant

      I have heard that poor sleep is a symptom of PD, but I have always been a good sleeper, before and after my diagnosis.  My own formula, but may not work for you, is to (a) get physically tired during the day so that you are motivated to get into bed at night and rest; (b) get outside briefly around the middle of the day to get some melatonin and Vitamin D from the sun; (c) have a regular bedtime and wake up time, and don’t sleep late if you can avoid it: (d) do not use electronics or TV or digital screens too close to bedtime and keep your devices out of the bedroom or at least on silent mode; (e) keep the bedroom dark and cool and quiet at night.

    • #23464
      Troy
      Participant

      I no longer sleep through the night. I never had issues until PD; now, I act out, thrash, etc. We use a weighted blanket to help keep me in place and to keep me from kicking my wife. I typically wake up multiple times throughout the night and by 4:30 I’m up, because my tremor is up too. All PD related.

      • #23685
        Susan Schlager
        Participant

        Troy,

        I fully sympathize with the “vivid dreams” as we call them.  My husband had horrible active, vivid dreams 2 years before he was diagnosed with Parkinson’s.  He would grab me because I was falling off a cliff, swing at me because he was hitting a baseball etc.  He also was tired and never had energy, had problems falling asleep and getting back to sleep after going to the bathroom.  I finally suggested he try 1 mg of melatonin which made a huge difference.  He then had an appt with neurologist who said that was the best treatment for the problem because it effected the dream stage of sleep.  He also thought that was too low a dose to make much difference.  Eventually, the dreams came back and I increased the dose to 2 mg and finally to 3 mg.  He has maintained at this level for over a year.  Even on nights it gets missed the dreams aren’t as bad as they used to be.  He sleeps soundly at night and has energy all day long.  I even have more energy after being able to get a full nights sleep.

        • #23985
          Troy
          Participant

          Hi Susan,

          Wow- I’m amazed at how many people I speak with who have PD related sleep issues. I’m happy to report that my doctor has added Mirapex (dopamine agonist) to my regimen and it as helped tremendously. While I still have wild nights, I’m doing better than before.

    • #23468
      Alan M
      Participant

      I’m 110% convinced my poor sleep health has to do with my 16 year battle with sleep aponea and more so lately with a sleep condition called REM-SBD directly linked to my PD.  My hand tremors also contribute to early morning disturbances that wakes me up as well.  I tried taking Circadin (melatonin) long release tabs every night but found their efficacy wore off over time.  Besides, I was told by my GP that their long-term use was unadvisable.

      My wife has taken to sleeping in another room (which aggravates me too) and I keep the room I sleep in cool and dark.  I hate PD for separating us at night. For her sake (well being) it is necessary, sadly.  It sucks having to sleep alone.

      • This reply was modified 3 months, 1 week ago by Alan M. Reason: typo and additional thought
    • #23474
      Trish K
      Participant

      Never. Even on a sleeping pill. My system doesn’t like many medications.

    • #23476
      George Sharp
      Participant

      I only sleep for 4 to 6 hours a night but seems to do me I usually get off to sleep easily but lately I wake up feeling well-rested check the time and I find it is only 12-30 I have been in bed for around two hours this has come pretty regularly of late so I really don’t know if my sleep is changing or it is just one of these things that is changing due to my PD.

      This is one of the problems when you get older is it old age or is this PD  incident who knows I don’t let it be a major thing in my life but all I can say is thankfully I just get back to sleep as fast as I can and don’t let it get to me.   George

       

       

    • #23477
      Greg Dew
      Participant

      I have had sleep problems since I was a teenager. I have been prescribed most all sleep meds (Ambien, Lunesta, Dalmane, Klonopin, and even Xanax) available with little to no avail. I am currently using Temazepam and still have trouble getting to sleep and staying asleep.

      There is some research being conducted to look at the relationship between sleep problems early in life as a precursor to a PD diagnosis.

      I have been living with PD for 17 years and my sleep problems seems to be progressing along with my PD. Just recently my neurologist(MDS) has added REMSBD or acting out dreams to my medical records. I have rarely had dreams that I can remember if at all. I believe this has to do with the lack of REM sleep I get due to the

    • #23478
      Paul Hojuson
      Participant

      It’s been my experience, that those around me seem to be the most concerned that my sleep time is rather short. Personally, I don’t consider this an issue and I use this time for every creative activity possible that I can’t complete during daylight. There are too many distractions during the working day to allow uninterrupted personal time. I read, write, draw, paint etc. This “problem” has been one real benefit of Parkinson’s.

      I use an appliance for sleep apnea. It works to the extent that my sleep period is deeper and unbroken. I wake up refreshed; however, the duration is still the same at 3-4hrs top.

    • #23501
      Krukar
      Participant

      Mary Beth,

      Because of my week bladder I only sleep in 2-3 hour stretches each night.

      But it has become much better since I do Kegels consistently and restrict my water intake after 7 pm.  My exercise is at least 1-2 hours per day so I am tired before I go to bed. Lately I have begun taking 1 10 mg Melatonin 45 minutes before I go to bed. I sleep well today. Fatigue is not my friend.

      Blessings,

      Mike

       

       

       

    • #23504
      John Citron
      Participant

      My sleep varies from day to day, or as I should say night to night.

      There are nights when I can’t get to sleep fast enough and will zonk out and wake up the next day happy, then there are nights when I can’t do it and end up staying up and reading or doing something at my computer like use my Trainz program because I hate watching TV, besides it’ll bother others in the house because the dog will start barking when he hears the voices. I swear, he can hear a leaf fart and barks at neighbors across the street if he hears them.

      Some nights start off perfect. I’ll head right into a deep sleep, dream vividly and wake up after about an hour. The sleep feels like I had been there for hours, but it’s only an hour like a short nap. After that I get up because staying in bed attempting to sleep makes things worse.

      Being one with a critical thinking and analytical mind, I did some troubleshooting as I tried to attribute this to various things that might be affecting my ever so wanting night’s sleep.

      At first, I thought this had to do with me napping during the day which I manage to do right after my evening meal. This nap isn’t a “just check for light leaks moment”. This is an outright really MUST close my eyes otherwise I feel barfy type – The kind we get when we’re fatigued. I’ll then nap in my chair, ending up like a pretzel, but a bit more rested after an hour.

      But that wasn’t it. I’ve napped and ended up sleeping deep anyway on some nights and others I toss and turn, well toss on one side because I can’t turn over well.

      I thought about caffeine. Yes, I’ll drink coffee during the day and maybe a cup of tea after dinner occasionally but mostly in the winter. My coffee consumption is about 2-1/2 to 3-cups per day and nothing more. I don’t drink soda because it makes me urinate a lot and the sugar make me feel queasy.

      But that wasn’t it. It didn’t matter if I cut back on the caffeine and kept it no later than noon with no tea at night.

      I’ve deliberately been avoiding the news at night to ensure I don’t get my mind working on that as I go to sleep. With all the world’s events these days, that means nightmares and over-thinking all night as I attempt to solve the world’s problems. I’ve done this to myself in the past and the worries and angst over the events makes for a horrible night.

      But avoiding the news didn’t help either.

      In the end, it must be the Parkie brain at work. When I do get my good to awesome night’s worth, I enjoy every minute of it and deal with the other days when I can’t.

    • #23527
      STEVEN OPPEN
      Participant

      Are you kidding me? I haven’t had an uninterrupted night of sleep since my last passionate night of love making, hmmm…was that in the 90’s or 80’s …can’t remember. Seriously, my anxiety history, combined with long term usage of zolpidem (not proud of this),decreasing bladder capacity, etc,etc has caused me to become serious about making changes so as to move to better sleep. I’ve stopped taking zolpidem( cold turkey)and replaced it with a safer med (trazalom 50 mg.), increased meditation time, decreased intake of fluids post 8 pm and tried to redirect thoughts to a set of positive subjects vs. Items of conflict.

      I’ve got a way to go, but, for the first time since I became hooked on Ambien, I’m headed in the right direction. Do I expect to reach the goal of a 100% night of uninterrupted sleep? That is as likely to happen as a return to the night’s of passion, but you can dream, can’t you?

    • #23570
      Don Bell
      Participant

      If Restless Leg Syndrome is a factor, try 1 – 4 mg Neupro patch.  It is good for 24 hours.   If you take Lipitor, be sure to take it at bedtime for it’s side effect of sleepiness!  A useful side effect of 12.5 – 25 mg Seroquel is staying asleep through the night.

    • #23581
      Beth T Browne
      Participant

      I suddenly had sleeping problems in 2018.  I could not figure why.  When I relocated to be closer to my daughter, my bedroom was very quite, but I still had sleeping problems.  That next year I was diagnosed with Parkinson.  I was told that is one problem of Parkinson’s.  I did not notice I had slight tremors in my hands.

      It is 2022 and I still struggle with sleep.  Doctors won’t give you sleeping aides as I was told they are addictive.  I have tried over the counter items with no luck.  This is probably why I am so tired every day.

      I have sleep apnea but have special mouth piece for it.

    • #23582
      George Sharp
      Participant

      i used this stuff it is called   melatonin  Gummies take a couple about 3 hrs before you go to sleep,i think it will  George

    • #23590
      Jane Bachmann
      Participant

      I’ve not slept through the the night for years. But since I have to use the restroom once a night anyway it’s not a problem for me. I take a melatonin tablet 3 mg. that helps. I don’t wish to take any sleep aid medication.

    • #23592
      Bill
      Participant

      No guarantee here, however a couple of ideas. I take a slow release carbidopa/levodopa at night and in the morning in addition to the regular one. Also will occasionally take the PM version of Alieve which helps. I have problems with urine retention and catheterize right before going to bed which really helps. May still wake up, but fewer times.

    • #23617
      Andrew L.
      Participant

      My first ( many years before diagnosis) and worst symptom of PD.  Have tried everything, here is what have come up with.  First off , I don’t like addictive meds so that rules out all of the benzodiazepines (Valium Xanax all of the drugs ending in azepam etc. I find the following helpful: 1)Mirtazapine (an anti anxiety anti depressant)at a low dose has sleep inducing side effect 2) melatonin which I take is probably a placebo as is cbd 3)meditating in the middle of the night when I wake up helps4)taking a c/l when I wake up in the middle of the nite “off” helps 5) the orexin inhibitors are a miracle drug for me and I sleep like a baby… but try to limit to 3x per week as leave me a little foggy when taken multiple nights in a row 6)I keep a massage chair in my bedroom which helps as well .  Note: was recently diagnosed with sleep apnea but can’t find a machine . Also I exercise daily ….eat well etc

    • #23618
      Don Bell
      Participant

      Orexin inhibitors may help some insomniacs but have not developed much of a following.  Consumer Reports had a negative evaluation: https://www.consumerreports.org/cro/news/2015/07/skip-new-insomnia-drug-belsomra/index.htm

      • #23693
        Andrew L.
        Participant

        I had orexin inhibitors prescribed by a neuropsychiatrist. He has hundreds of pd patients and claims to have used them with great success. He also uses them on his Alzheimer’s patients .  It is not the be all end all as after a few days it causes me  some daytime foginess…so I try to take it every 3rd day. While this is obviously anecdotal, they give  me the best sleep I have had in years and certainly since I was diagnosed … normal dreams , not thrashing , wake up feeling refreshed….this is obviously not to be misconstrued as medical advice am just sharing my personal experience in an attempt to help others. Certainly would not recommend without doctor supervision  ….

    • #23668
      Debbie Lucchesi
      Participant

      I was having lots of nightmares and acting out in my sleep.  I even hit my husband and fractured a small hip bone because of the force of my kicks. Thank god most have gone away, I take CBD and Thc for sleep along with melatonin and it’s working.  No after effect and wake up at 5:30 to start my day and no groggy feeling.

    • #23667
      David Jacobson
      Participant

      I have been taking Melatonin (5 or 6mg) for a few months.  Some nights good…some nights bad.  I go to bed quite late (midnite-1:30) and do wake up usually once or possibly twice to urinate and get up at about 9.  However, I added Gabapentin (only 100 mg.) to my before-bed routine in the last week.  Amazing!  I have slept completely through the night 3 times and have woken up quite refreshed and alert.  When I work out shortly thereafter, I do not drag or feel tired.  Let’s see if this formula lasts.

    • #23783
      Kim
      Participant

      I always slept great being very active during the day and keeping a consistent sleep schedule for years. I’ve never had to use an alarm clock to wake up, for instance I just wake up. However, since my Parkinson’s diagnosis, it’s becoming harder to sleep through the night. I find myself sleeping five hours and then I wake up. I tried doing deep breathing exercises and sometimes it helps me fall back to sleep; other times I am just resting and never really fall back into a deep sleep.

      • #23807
        Alan M
        Participant

        Hey  Kim:  I suffer similar sleeping disruptions.  My G/P prescribed Circaden (Melatonin, 2 mg/d) but even this doesn’t let me get a good rest.  Have you tried anything else?

        I’ve struggled with sleep aponea since 2008.  CPAP use has become part of my life since then.  It helps but not enough.

    • #23808
      George Sharp
      Participant

      I have trouble getting much over 4- 6 hours a night but I find that is plenty   I have always been the same  long before Parkinson’s so I think in my case it is old age , the only thing I  have a problem with is some times I have got up for the toilet and before going back to bed I may take a pill  which  may be a anti acid or a Panadol I find  it hard if I get up again to remember  taking the pill. in fact have trouble remembering me getting up, thank goodness  this  event  is rare , but as I am 77 it is most likely my old age. the only thing is try and get really tired and when you go to bed you drop off quickly ,

    • #23987
      Beth T Browne
      Participant

      I have had sleep problems since 2018. I was diagnosed
      With Parkinson’s in 2020.

      Nothing could be worse then not being able to get sleep. I have lung issues, heart issues, and others, and I need my sleep to keep my immune system up. Doctors won’t give you any sleep Medication as it is addictive. But what about only getting 4 hour a night. That is hard on the body.

      I have MILD sleep apnea and I wear a sleep guard which was helping before Parkinson’s. So, I know it is this disease. I wish they could give us something. I have tried all the things they tell people with sleep problems and nothing works. It is hard to shut the mind off when you can’t sleep and you lie there worrying about how it is affecting the other things.

      • #23992
        George Sharp
        Participant

        MELATONIN gummies.  Try these they are easy to take. Take them at night and it should help you sleep. all the best  George

    • #24046
      Gauri
      Participant

      No not all. After taking sleeping pill(s) also I keep awake in the middle of the night. Although I have made up my mind to sleep I feel sleeping is unnecessary business and that my other hobbies for which forI don’t get time are I can take it up..

      The things I must do.

      This is how I have been experiencing deficiency in sleep since pandemic started.  This has actually ruined my health.

    • #24068
      Janusz Opolski
      Participant

      Problem with sleeping is typical  for PD “members club”. Different symptoms. Melatonin – a few grams? It is good.No answer. Try Mirtazapinum .Starting with 15 mg a 2 hours before normal time to bed up to 30 mg  7-10 days. Some patiens feel better. Before – consult with your personnal doctor,

      Janusz

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