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    • #15100
      Ally
      Keymaster

      Hi all, I just came across an interesting article from the Michael J. Fox Foundation about REM sleep disorder behaviour (RBD). Here’s a snippet:

      “This sleep condition is a lesser-known symptom of Parkinson’s that, in some people, can precede movement symptoms (tremor, stiffness, slowness) and diagnosis by years or even decades. In REM sleep behavior disorder, a person acts out their dreams. Because these dreams often involve being chased or attacked, people will yell, punch, kick or even leap out of bed.”

      This is fascinating news to me. Has anyone in the community experienced RBD? Did you know about it before today?

      You can read the rest of the article here: https://www.michaeljfox.org/news/ask-md-acting-out-dreams-and-parkinsons-disease

    • #15101
      George Kapetanakis
      Participant

      I have REM sleep disorder, even though I have no problem falling asleep and I do get eight hours of sleep at night.

      • #15104
        Jean Mellano
        Participant

        I fall asleep easily by 11pm usually wake up at 530 sometimes at 3 am to use bathroom.  My sleep has improved since I have been using light therapy although last night I woke up screaming, why, I don’t know…

    • #15114
      Lou Hevly
      Participant

      I’ve always had some insomnia, but I think the PD makes it worse. My main problem is that I can’t find a comfortable position, and I think this uneasiness is PD-related, since I also have restless legs syndrome.

      I go to bed around 1am and if I can’t get to sleep by 4-5am, I just get up, have breakfast and start my day. Around 7-8am I can generally sleep for an hour or two. The strange thing is I feel fine all day and don’t even need a nap after lunch. The subsequent night I usually sleep well.

      My wife tells me that a couple of times that, in my sleep, I’ve yelled and screamed and jumped out of bed, but I have no memory of this at all. It’s a little spooky and bothers me somewhat.

    • #15870

      O sono é o meu grande problema. Tudo o que o médico me diz para fazer, eu faço:Deitar á mesma hora,pouca luz no quarto, chuveiro antes de deitar, café nunca depois do meio dia etc etc.Mesmo assim não consigo sequer estar na cama mais de 3 horas.Noto no entanto que adormeço, logo que me deite.Por outro lado tive um sono a conduzir, fracção de segundos e bati num poste de electricidade.Não tomo medicação para dormir. Gostaria de saber, se há mais alguma coisa a fazer, para dormir.

      • #15871
        Jean Mellano
        Participant

        hi francisco, here is english translation:

        Sleep is my big problem. Everything the doctor tells me to do, I do: Lying at the same time, low light in the room, shower before bed, coffee never after noon etc etc. Even then I can’t even be in bed more than 3 hours. I notice, however, that I fall asleep as soon as I lie down. On the other hand I had a driving sleep, split seconds and hit a power pole. I don’t take sleeping medication. I wonder if there is anything else to do, to sleep.

         

        i am sorry to hear if your accident.  have you looked into photobimodulation?  you can do a google search on:  photobiomodulation therapy for parkinson’s insomnia

    • #15907
      Jeffery Hill
      Participant

      I dream a lot, though inevitably I forget the plot soon after I awaken and my wife tells me that I’ve become a little more “chatty”  in the last few years.  I sometimes wake myself (and everyone else) yelling in my sleep.  Some mornings I find a wall of pillows between my wife and I (she would prefer that I don’t slug her in my sleep).

      • #15910
        Jean Mellano
        Participant

        thanks for sharing jeffrey, it seems like you and your wife have good senses of humor 🙂  I suffer from the ‘wake up screaming’ scenario occasionally. I hate those dreams and like you, i usually forget what i was screaming about

    • #16036
      James Harvey
      Participant

      I have insomnia that I attribute to PD.  The things that have helped me:  1. melatonin about 1 hr before bed (I am male and weigh about 150 lb), 2. blackout window blinds so I can sleep in the morning, 3. gabapentin 1 hr before bed, 4. one-half of a carbidopa-levodopa tab when I wake up during the night (at about 3 am and 6 am).  The gabapentin is a recent addition.  It was prescribed to help reduce bladder activity and it has reduced nocturia frequency but it also enables me to get back to sleep.  The gabapentin makes me a little groggy in the morning but the better sleep pattern makes it worthwhile overall.  The gabapentin also seems to reduce my ability to remember dreams.

      • #16041
        Jean Mellano
        Participant

        james, thank you for sharing what works for you.  i hope it can help others that are experiencing the same thing

    • #15875
      David Dorsey
      Participant

      To my fellow Parkies…..

      NEVER,……NEVER  TAKE AMBIEN.

      I HAD A HORRIFIC NIGHT TERROR, I WAS HOSPITALIZED. THE DETAILS OF THIS EVENT WILL HAUNT MY FAMILY FOR EVER.

      PERSONALLY I FIND THAT 20MG OF MELATONIN IS ENOUGH TO ALLOW MY MIND AND BODY TO REST @ 6 HOURS CONSECUTIVELY.

      God Bless,

      D

      • #15876
        Jean Mellano
        Participant

        david

        thanks for sharing your experieence. i dont do well with drugs myself.  i had horrendous nightmares when i took the antidepressent Viibyrd

    • #17466

      I was just reviewing some of the topics and came across yours regarding REM sleep disorder.  My husband likely was experiencing this periodically long before he was diagnosed.  His first symptom was a loss of smell which occurred about 8 years ago or so.  He was just diagnosed in May 2019 after having a let-handed tremor for several months.  However, we can now go back, at least five years, and recount a couple of incidents wherein he was dreaming that someone had come into the bedroom and was going to attack him/us.  At the time, it seemed odd that this was a recurring theme – we were totally unaware that it could be linked to Parkinson’s.  When these dreams occur, he usually yells out and tries to defend himself.  I tend to wake up immediately and yell out which awakens him.  Only once has he reached over and pinched my leg without verbalizing anything.  These incidents occur every two to four months or so.  Other than that, his sleep has been quite good.  When he brought up the issue of these dreams to four Rock Steady Boxing teammates, every one of them said they experience this symptom – some even pounding pillows.

    • #17468
      James Harvey
      Participant

      In my post of 10-29-19 I indicated that gabapentin was helping me sleep.  Indeed it did help for a few weeks but then in became ineffective even when the dose was increased to 500 mg.  During the period of tapering off the drug my insomnia was worse than normal.

    • #17469
      Mary Beth Skylis
      Moderator

      Mary Klein,

      I’ve never heard of this. I’ll have to ask my Dad (diagnosed in 2013) if he experiences the same thing. I do know that he lost his sense of smell quite early. And, for the longest time, he thought it was because he had polyps. So he had them removed, which didn’t help. However, he underwent Deep Brain Stimulation last Fall. And after the second surgery, his sense of smell started to come back.

    • #17489
      Michael Jaffe
      Participant

      I’ve had the active dreams off and on again for several years. I have learned to sleep facing away from my wife because of my tendency to lash out in the middle of the dreams.  (Smacking her once was enough to enshrine this practice!)

    • #17490
      Michael Jaffe
      Participant

      Don’t want to argumentative, but my experience is just the opposite. Melatonin has no effect on me at all, while ambien (1/2 a pill) is great!

    • #17492
      Curtis Nelson
      Participant

      I also have had rem disorder for many years though not offen. I once was fighting with my wife ,dreaming it was someone attacking me from behind in my car,she quickly stopped that dream! Another time I jumped out of bed about 3 feet and broke a toe thinking I was jumping on a rat,and at the time it gave us a good laugh,though it could cause a problem. Also have developed narcolepsy and have had restless legs for a long time. I was only recently diagnosed 2 mounts back.

    • #17501
      Mary Beth Skylis
      Moderator

      Wow! How have you learned to manage the strange nightmares and sleep occurrences?

      Michael, you noted that you sleep away from your wife. Do you do anything else to prevent sleep disturbances?

    • #17510
      Phil Gattis
      Participant

      Diagnosed last June, but dreams, loss of smell, slight tremors, constipation, kidney/bladder dysfunction, stooped posture & other symptoms preceded it, some by years.

      I’m 69 & on more drugs now than I ever was in my life[not good!], & I’m going back for my 2nd neurologist appointment soon.  I imagine we’ll talk about medications.

      It’s a ride alright.  Thank God for humor, & my wife, family, & church!

    • #17514
      Mary Beth Skylis
      Moderator

      Phil,

      Humor is one of our defense mechanisms too. When we’re struggling, we’re still making jokes. That’s how my Dad’s diagnosis went too. Once they labelled it, he realized the symptoms were there for much longer. Smell, especially, was his big indicator. And he stooped too but our whole family has poor posture so he didn’t think anything of it. It’s interesting to hear about the early signs.

    • #17518
      Chris Thompson
      Participant

      I have not been diagnosed with PD yet but have lived with RBD for several years. Melatonin and a mummy sleeping sheet/bag (example) works well to keep me and my wife safe when episodes occur. I tended to have bouts of kicking which can be dangerous for anyone in the same bed. Unfortunately the research shows that a high percentage of those with RBD will convert to PD or MSA within 10-14 years. A sleep study is needed for a full diagnosis. More info: https://www.sleepfoundation.org/articles/rem-sleep-behavior-disorder

      Tapered sheet

    • #18034
      David
      Participant

      Hi there, as a relatively newly diagnosed PD patient I want to thank you all for posting. Specifically, my issues with sleep are terrible muscle cramps at 3 AM, stiffness and rigidity in the left leg, numbness and burning in left foot. I think this has to do with on-off, and so last night instead of advil, I took half a dose of Modopar, it seemed to work.  Sleep is one of life’s last pleasures, when I don’t get it I get suicidal… Ambien worked for awhile but then on waking the cramps and stiffness were abominable.  So I am hoping my self-prescribed extra capsule of Levidopa at bedtime does the trick. Incidentally, the torture I describe here I had experienced for years before anyone thought of PD. During daytime now, almost all the leg cramps are gone, and my foot feels almost normal again. Dreams are wonderful, there are nightmares to be sure, on occasion, but I don’t mind. They’re more vivid than ever and I often remember them!

    • #18050
      Mary Beth Skylis
      Moderator

      David, my Dad (diagnosed in 2013) struggles with sleep too. With both the consistency and quality of it as well as nightmares. I don’t quite know how he has learned to manage the symptoms. But he has been experimenting with CBD a bit, which has been known to help with sleep.

    • #18056
      Argya Bayuaji
      Participant

      Hello all,

      i’m Argya Bayuaji, i’m new member in this forum. I was diagnosed at 20 y.o. I feel that Parkinson’s Disease giving impact my sleep until now. I could not sleep well. I only slept 1-3 hours since I started the second year with Parkinson’s Disease. i went to neurologist and he given me sleep medication. But, I also use psychological methods, listening to music and mindfulness. And for me very helpful. I can sleep 5 hours. Maybe, any others method for help the quality of sleep Parkinson’s surfferer?

       

      Keep Spirit and Positive 🙂

      Best Regards,

      Argya Bayuaji

      Yogyakarta, Indonesia

    • #18057
      Argya Bayuaji
      Participant

      Hello all,

      i’m Argya Bayuaji, i’m new member in this forum. I was diagnosed at 20 y.o. I feel that Parkinson’s Disease giving impact my sleep until now. I could not sleep well. I only slept 1-3 hours since I started the second year with Parkinson’s Disease. i went to neurologist and he given me sleep medication. But, I also use psychological methods, listening to music and mindfulness. And for me very helpful. I can sleep 5 hours. Maybe, any others method for help the quality of sleep Parkinson’s surfferer?

       

      Keep Spirit and Positive 🙂

      Best Regards,

      Argya Bayuaji

      Yogyakarta, Indonesia

    • #18059
      David
      Participant

      Mary-Beth, sorry for your dad…y issue is not sleep as such but muscle cramps and this horrible pain in my foot and leg incorrectly diagnosed as sciatica. Of course I also have a little sciatica but this is not sciatica! Ldopa kills it, and when it wears off it’s back with à vengeance. Other things I have tried include ambien and OxyContin both worked for a while. I now take neither. What is causing your dad’s insomnia.., is it mental or physical? That’s my suggestion.., get to the bottom of that quick because like exercise sleep or lack of it has traumatic impact on mental health and is a vicious circle

    • #18064
      Beata
      Participant

      I have had. nightmares about being chased for decades, even though I e only been diagnosed about four years. I have unfortunately slugged my husband and have thrown myself out of bed. Thank goodness my neurologist recommended melatonin. It seems to take care of the problem. And additionally helps with sleep.

    • #18068
      Toni Shapiro
      Participant

      Terrible sleeper for years. CPAP machine has helped greatly. Without it my husband says I jump around in bed sit upright and howl just like a dog. In the morning sheets and covers are all twisted and mostly off the bed. I flail my arms and legs and yell things. Pretty scary for him. It doesnt happen when I am on my CPAP.

    • #18070
      Paul Hardin
      Participant

      Oh, yes. I was diagnosed with PD about 6 years ago, and every night may end in an “adventure” for my wife and me. I have the vivid dreams, dreams of being chased or in conflict, etc. Even with a king size bed, my wife often (1-2x/wk) will retreat to the spare bedroom to avoid bodily injury–literally. Other times, she will simply awaken me–after I’ve awoken her with my “midnight madness”, to help me reset my dream cycle. And, yes, at least once I’ve thrown myself out of bed. How grateful I am for a very patient wife! I like Chris’s idea of a sleeping bag or sleeve. Just last night I put a bottle of Melatonin on my bedside table, but decided not to take any–“one more pill….” –so, here I am writing this at 4 AM, up since 2:30 AM. At least I’m not thrashing around in bed, disturbing my good wife!

    • #18082
      Shannan
      Participant

      REM sleep disorder was one of my very first symptoms. I’ve never gotten out of bed but I do kick, punch, fight, yell, curse, cry, bite, scratch, etc. Like the original post said most dreams are running from something or defending yourself….I very rarely remember the dreams.  Melatonin made me excessively drowsy in the morning and didn’t really work so I take 0.5mg of Clonazepam before bed and it seems to have it mostly controlled.  I am 39 now, was diagnosed at 33, and was experiencing 1st symptoms at 29.

    • #18125
      Robert Harris
      Participant

      Yes, I too have Parkysleeposis (my term for the typical broken sleep, tossing and turning, multiple restroom visits, unpredictable wakefulness, etc.) For me, a good night’s sleep: getting up to pee 2-3 times, sleeping up to 5 hours, having occasional REM sleep; average night’s sleep: getting up to pee 4-5 times, sleeping 4 hours, some fidgeting, no remembered REM sleep; rough night: getting up to pee 4-5 times and tossing and turning in between bathroom breaks, maybe 3 hours of sleep. I have some complicating factors, including arthritis in my spine, scoliosis, and spinal myoclonus. I used to get sciatica also, but seldom now, since I avoid aggravating my back usually. Anyway, the arthritis and myoclonus require me to sleep on my stomach most of the time. If I sleep on my back, the myoclonus (a sudden jerking in arm or leg) springs up. My arthritis prevents me from standing more than five minutes at a time, and causes me to get up with a backache much of the time.

      My neurologist prescribed the Neupro patch to take care of the myoclonic jerking, and that usually helps unless I try to sleep on my back. When my back is particularly mean, I take two aspirin at bedtime to calm it down.

      My semi-usual modus operandi for sleep aid is to take a hot bath just before bed time. It has long been said that when the body cools down after a bath, it is a signal to the brain that it’s time to sleep.

      By  the way, I’ve had considerable insomnia since I was  maybe 8 or 10 years old. I wonder if that was a very early warning of Parkinson’s? I didn’t manifest other symptoms  (loss of sense of smell, reduced manual dexerity of right hand) until I was about 50.

       

       

    • #18130
      Mary Beth Skylis
      Moderator

      Thanks for the tip, David!

      It’s hard to say what the cause might be. He has never slept well as far as I can remember. Even as a kid, I remember him napping alot because he couldn’t sleep through the night. But he also has ulcerative colitis, so his situation is pretty complicated. I’ve also been surprised to see that he sleeps at different times, now. For the longest time, he was a night owl. And now he gets up nearly as early as my Mom. The shift seems subtle but it’s very uncharacteristic of him.

    • #18132
      Mary Beth Skylis
      Moderator

      Robert- Parkysleeposis gave me a good laugh. My Dad underwent DBS in the Fall, and he was really pleasantly surprised to find that one of results of the surgery is a less frequent urge to pee. I haven’t asked him if that was disturbing his sleep, but I bet he was experiencing the same kind of thing.

      I’ve been curious about early PD symptoms too, because my Dad has never been able to sleep through the night. But what came first, the chicken or the egg? And are the chicken and egg related?

    • #18152
      David
      Participant

      Robert, I feel for you… i used to be a pianist, now my right hand is useless. My issue is the cramping I get at night… the PAIN wakes me several times each night. Some weeks are worse than others. I thought I had “fixed it taking an extra dose of L-Dopa at bedtime, but alas…. On Sunday I was ecstatically happy, I had NO symptoms. Then, during the night, I had the illusion (?) that PD was saying to me, you think it’s gonna be so easy? take that you… (expletives deleted). I really felt this disease as an animate being, as in a horror movie. Well, maybe it is, but I’m not backing off… keep fighting!

    • #18156
      Phil Gattis
      Participant

      This is becoming a scary symptom.  The other night, I struck my wife, who responded, “That hurt!”  & I replied, “It was meant to!”  I have no memory of that exchange.

      I think I’ll try the trick of sleeping on my other side.  Unfortunately, that leaves the ear that hears exposed.

    • #18159
      David
      Participant

      People should try sleeping separately… it may give you less stress and maybe your wife will thank you

    • #18170
      Mary Beth Skylis
      Moderator

      Wow, Phil! That is scary. Has anything like that ever happened before?

    • #18182
      Phil Gattis
      Participant

      Yes, I’ve been acting out dreams, both pre- and post-diagnosis.

      Seeking peace through prayer.  We’re in it together for the long haul.  I have the best caregiver in the world.

    • #18213
      Mary Beth Skylis
      Moderator

      There’s something to be said for those awesome caregivers. I’m really glad that you have a good one 🙂

    • #18214
      Mary Beth Skylis
      Moderator

      There’s something to be said for those awesome caregivers. I’m really glad that you have a good one 🙂

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