ok, my friends. I know many of you have different sleep issues and it’s unfortunately part of my snowflake“package”. In fact, it was my first prodromal symptom.
So I’m not really asking which med or supplement to take. I’ve tried them all. Really, I’m sure I’m not alone in this. Beehive and his 2am club! 😂
I’m adapting. Funny how pd can make you face your greatest fears! I’ve been terrified of not sleeping since the first real long bout of insomnia 25 years ago. I’m kind of getting more used to it, although the body rebels.
My motor symptoms are relatively well controlled. But lack of sleep makes my energy drop through the floor.
My question is to those of you in this boat….
How do you manage the days with 2, 3, 4 hours of sleep?
Sleep hygiene wisdom says make it like a normal day, to build up the need for sleep. Does this help? Do you exercise on two hours of sleep? Do you nap in the afternoon?
I know everyone’s different, but I’d appreciate any words of wisdom…
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My husband started with a psychologist earlier this year and seemed to be making some progress. Then several weird health things happened to him which had to take priority. He is hoping to start up again after the first of the year. His psychologist is great. He does zoom calls with him as he is not in the same city. As his wife, I personally believe that CBT-I is the "key that picks the lock" for my husband.
Rebecca- we practice Lee Holden’s Qi Gong for Deep Sleep. It’s a 40 minute form which seems to help. He also has a sleep workshop, link below. Good luck and hope this helps:
I don’t have PD but suffer with not being able to sleep. I have found if the internet is on at night I can’t fall asleep. Do you turn off your wifi at night?
i used to suffer the same way. Trial and error has got me sleeping 6,7 and sometimes 8 hours. If there is something on my mind the routine goes out the window and I twiddling my thumbs at 2 am for sure. I take thc:cbd (1:20) before bed and calm sleep I have tried many melatonin products but the combo of stuff added to this nighttime drink does the trick for me. I also use a sleep app. If i get enough deep sleep, even if I only get 4 hours of total sleep, I seem to function ok the next day. I am writing this at 4:20 am so it is one of those bad nights 😡
Hi there - I have been having sleep issues as well and I just started using the Shakti Mat before going to bed and have been sleeping much better. Hope it helps.
I have improved my insomnia by using low doses of THC, adding nighttime doses of Levadopa/cardidopa, alternating between bed and recliner, and not eating anything after seven. It's still not good.
My question is more to how to manage the days when you haven't slept much...
Thanks JulieGrace -- I also nap if it's been a really poor night's sleep, but try not to nap too much or too late. That's supposed to help with sleep at night.
I hate being exhausted all day after a bad nights sleep. I drink a lot of coffee to get me moving , which I find effective.
When lying awake in bed I listen to audio books which generally have me nodding off within 10 mins, or at least resting my brain. Biography’s are good.
I lay in bed in the dark right before “waking up” (usually 4:00am) and do some easy wake-up brain activity like Wordle. I drink 2 cups of coffee. I try to do some easy work until my meds kick-in, then I do more serious thought and work. Today I was really dragging by 1:30. I decided to stop. I often remind myself to give myself some grace — that little affirmation allows me a needed rest period or simple fun — which could be cooking a meal, pretending I’m going to nap (I never do), taking a walk, reading the news. Today after that rest (and calling a loved one and having some laughs) I was able to go back to work for a bit and cook dinner. It’s 5:50 now. Can I go to bed soon?
So, in summary, I don’t know if I have a great suggestion but my recipe is light brain work, intense brain work, cooking meals or light housework, laughs, exercise (walking and weight lifting) and the grace to let myself lay around for 1h or 4h for a mental/physical rest. Of all of that, laughs are the most important but not always easy to get.
Today I could not get out of my fog. I saw that you can’t do caffeine. When I couldn’t do caffeine at various times, I found controlled fasting and/or intense exercise in the morning were good ways to reduce the fog
—and one final edit, I don’t know where you live and if this is possible for you, but fresh air throughout the day is key to keeping me vibrant. My washer and dryer is actually in my detached garage and I find having a little reason to go out into the crisp morning air invigorates me.
I just take sleeping pills. This is all I do with my insomnia.It's just that in this case, you need to buy really high-quality medicines, because not all insomnia pills help. Personally i buy on here canadapharmacy.com/ . You can try it too!
Like a zombie, that’s how, being in this boat, I managed the days with 2, 3, 4 hours of sleep…. With PD, the variations are many and so are the related sleep problems. Apart from the useful standard recommendations, you will have to find the solution that suits you. Nevertheless, here is the formula that works for me. Fortunately, I have no problem falling asleep, but one year of average sleep duration of 3 hours was disastrous. A hopeless vicious situation whereby your medication no longer works, you fall asleep during the day, in short, you change into a zombie. First of all, it turned out there was a severe B6 deficiency. After supplementation, I slept an extra hour! Given the positive reports about possible beneficial effects of Melatonin for PD, especially by Art (chartist) on HU, I started with 1 mg an hour before bedtime. It yielded an extra hour of sleep the same night. After some time, I eagerly increased the dose to 2 and 3 mg and that yielded another 1-2 hours, but also a nagging headache as a (infrequently) side effect. So further increase is unfortunately not in the cards for some time yet. On average, I now sleep about 6 hours a night, which is a blessing. It doesn't seem to be a placebo effect, because if I forget the M medication one evening, which happens quite often as a real Parki, I miss those extra M hours. Moreover, the improvement only works if I also use the other aids with blackout curtains, bed socks (for the neuropathy), exercise during the day and relax with QiGong. Good luck! 🍀
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