Sleep struggles and Parkinson’s

[Carol Hardbarger]

Sleep issues are a huge problem for me. I feel I’ve tried everything suggested, other than prescription medication. I am considering a medical marijuana option -legal here. If I do take melatonin or an herbal tea, I wake up after a few hours and struggle to go back to sleep.

[Ally]

That’s so frustrating, Carol. Please keep us posted on whether or not medical marijuana helps. You could also try CBD which is marijuana without the ingredient that makes you feel high.

[Charles H Levin]

A year ago, sleep disruption became a very big problem. Initially I tried melatonin (at my doc’s suggestion) and THC/CBN gummies (my idea). But after a while, it just continued to worsen.

Finally, by August, I was at wit’s end, often getting less than six hours a night. This badly stressed my body, which aggravated my symptoms. It often felt like my meds were wearing off a few hours early.

I asked my doc for meds. First we tried Trazadone, which did not help. But then we tried Quetiapine (aka Seroquel), and it’s working quite well. I still take the melatonin and gummie (the latter is 10mg THC and 10mg CBN).

Now I’m sleeping 7.5 to eight hours a night without a problem. I still get up to use the bathroom but rarely have any trouble falling asleep again.

Better still, my symptoms are fine and my motor disorder score dropped by five points, which is quite dramatic.

[Ally]

Wow, Charles! Thanks for sharing your journey to figure out what could work for you – I’m sure it will be helpful to someone else.

[kristin]

Yes i have had big issues with sleep–both falling asleep and staying asleep! it has been debilitating. i think I have struggled my whole life with sleep issues , even before I was diagnosed with PD. I believe it runs in my family. My grandmother used to complain about insomnia and my sister has been on the sleep meds for years. i think she struggles with anxiety and years ago she a whole month where she was only getting 1-1 1/2 hours of sleep a night and she has been on a nightly sleep aide ever since. I have tried all the sleep medications out there and they seem to work for a couple of nights and then become ineffective with the exception of ambien which worked consistently but ambien causes my balance to completely go haywire causing me to fall. so the risk of injury is too great, When i retired I thought i would sleep better since I had nothing to worry about to keep me awake but my insomnia kept getting worse and worse! i finally got some help from a sleep psychologist Robert Glidewell who literally wrote the book on insomnia–well “a” book anyway (10 laws of insomnia), his book is excellent and he is a former insomniac so his book is half memoir and half informative/therapeutic. When I first came to see him he classified my insomnia as severe. I told him i had no idea why i couldn’t fall asleep and he told me that what triggered my insomnia is probably long gone ,, that anyone who has suffered insomnia for more than three months the insomnia gets a life of its own, it becomes a living breathing self- Perpetuating MONSTER,.. its a brain programming problem. Everything that I was doing to to compensate for my insomnia was actually teaching my body to not sleep in bed. I had to retrain my brain. And that’s really really helped a lot so get the book and read about reprogramming your brain but still there’d be some nights where I could not relax and this is what I learned about myself: I never thought about why I couldn’t sleep like everyone else i’m not very introspective so now that I’ve thought about it I realize that I have A really excitable personality so i get jazzed up so easily and it’s so hard for me to relax So I do take Sleep aids at night Trazodone to relax plus or minus melatonin +/- THC gummmies whatever I need to relax and I do need to learn how to relax! Go Buy that book!

[Ally]

Thanks for sharing your experience, Kristin. I hope that what you’ve learned through trial and error can help someone else in this forum community. 🙂

[katgrey]

Thank you all for the info

[gsry]

I have severe muscle cramps and spasms in my legs and feet only when I sleep. They are so

intense that I tore a tendon in my foot! I’ve tried time release C/L, muscle relaxers, extra magnesium,

Pro bio 299, and nothing has helped. The good news I go right back to sleep. The bad news I can barely walk and have to get surgery on my foot. Does anyone else have this issue, and any suggested remedies?

Thanks, Gary

[Gerald McCarty]

I was on sleeping 5 hours straight night in my last few years of working. Once diagnosed and after retirement, I wasn’t sleeping much better. Late last year I had DBS surgery and between that and establishing better sleep hygiene, I’ve been able too get 7+ hours on average.

[Ally]

That’s great progress. Thanks for sharing, Gerald.

[Jacque Walston]

I have problems getting enough sleep. It sometimes takes me awhile to get to sleep, then I wake up after an hour or two, spend 30-60 trying to go back to sleep, then wake after an hour or two. For several months I only got 4-6 hours of sleep a night. Sleeping pills had too many side effects (groggy, fuzzy headed), and CDC did not help. A contributor to all this was urinary incontinence. I had a stimulating implant a year ago to control incontinence, but so far, it is not working very well. On top of all this I started having painful leg jerks only at night (dyskinesia), which would wake me up and prevent sleep. I would just walk around the house or stand looking out the window for hours until it was time to get dressed and start the day. I usually would sleep a couple of hours in the afternoon.

Now I have established a regular routine and try to get to bed at the same time. I now sleep alone so I don’t worry about disturbing the other person. I wear a sleep mask so varying light does not disturb me. I take 25 g. of melatonin before bed, all of which helps me wind down and fall asleep.

Also, I adjusted my Rytary schedule. I was taking 3 caps 3 times a day, but that left 14 hours between the last one in the evening and the first one the next morning. I spread it out so that I take it four times a day, the last two when I go to bed. That stopped the leg jerking and leg pain that had kept me up for hours. I am also working with the tech at the implant company to find the right program for my incontinence. Now I can sleep three hours between having to pee and get back to sleep fairly quickly.

The main things that have helped me are: adjusting my Rytary, sleeping alone, and sticking to a bedtime routine.

Jacque W