Thoughts on klonopin for sleep/ RBD.

[Leest2023]

This is my first post, but I've been following as a silent member for many months and appreciate the great information. I was diagnosed with PD this year by DaTscan, but figured out PD was what it had to be about a year before my doctors, and in retrospect I could have been diagnosed years earlier. My main symptoms are insomnia, fatigue, brain fog, headaches, constipation, an isometric tremor and mild bradykinesia starting this year.I've had bad insomnia for decades, but it got much worse in early 2024, a month or so after I got over Covid. My sleep went from about 7 hours of broken, unrefreshing sleep to about 5-6 hours, and I start having REM behavior disorder episodes (recently confirmed by a sleep study).

I've been taking low dose doxepin for years, not sure its doing anything, and have tried every other sleep medication available to no benefit. At one point over a decade ago I took klonopin for anxiety for a few months and then spent a year tapering off of it with badly disturbed sleep.

Since I can't tolerate more than about 1/2 mg melatonin, that's not an option for treating my RBD. So I've decided to start nightly klonopin (prescription is for 0.5 mg, but I may try to get by with less), with the feeling that it's probably something I'll need to take for life (I never want to go through withdrawal again). I'm fearful of the cognitive effects, but getting 2 hours short of my needed sleep every night also has had bad cognitive effects, and my insomnia/fatigue has been destroying my life at every level. I'm hoping improved sleep will give me the energy to take part in life a bit more.

I'd like to hear from members that have used klonopin for RBD. Has the dose needed to be increased over time? Do you feel the benefits outway the side effects? Have you found anything else that helps.

Looking forward to seeing your responses

[Boscoejean]

drugs.com/klonopin.html

[Trixiedee]

Klonopin is addictive and hasn’t made any difference to REM sleep disorder for me. I wish I’d never taken it.

[Leest2023 in reply to Trixiedee]

Thanks Trixedee; I fear I may end up coming to the same conclusion. After a few days on it I'm sleeping much longer but just as foggy when I wake up. But I'm desperate, so I'm going to give it a try.

[YOParky]

I've taken klonopin and found that my body woukd gradually continue to require higher doses. I now take Mirtazapan for sleep and have stayed at the lowest dose of 15mg. I do wake you a bit groggy at times but I'll take that over the alternative of not sleeping or minimal sleep.I hope you find a solution soon!

[Rufous2]

N of one, but might be of interest to those with RBD.

journals.lww.com/md-journal...

[LAJ12345]

my husband takes 1x0.5 cut into quarters split over the day 1/4 1/4, 1/2 and he finds it very helpful for anxiety and sleep.

[PD-CareGiver]

My husband has been taking .5mg for anxiety related to Parkinson every day and it was suggested by two neurologist and it has been working for him. I personally think lack of sleep would have more harm than Klonopin.

[Leest2023]

That was my thinking also. It seems there is much more evidence of the risks of sleep deprivation on cognitive impairment than there is for low dose klonopin. Even after a few days, I'm feeling so much better now sleeping 8 hours compared to 6 hours before.

[PalmSprings]

Hi, welcome! Your sleep problems sound so familiar. I essentially stopped sleeping after the birth of my second child. I was about 31. I also had symptoms of PD a long time before I was diagnosed at 55. I used to take Gravol (Canadian) for motion sickness to sleep but it never really worked very well. I have recently found a solution for me. I started thinking of my own circadian rhythm and so I went back to my teenage years when I slept well. I incorporated the idea of going to bed late and sleeping in (I am retired). I also rejected all the sage advice given by doctors and sleep experts. I watch tv till the late hours and even listen to podcasts to go to sleep with, all after midnight. I actually try to stay up until 2. I also ignore the neurologist that say your last dose of l/c should be at 8 or 9 pm. I take a dose at 9 and right before I fall asleep. I also learned my body works best with extended release l/c 200/50. I sometimes wake up at around 8 to go to the bathroom but I go back to bed and fall asleep again sometimes I sleep to noon but then I feel good during the day and don’t need naps. I believe this is the best things I have done for myself. Sleep is amazing and I even dream! I know not everyone would choose my times and possibly wouldn’t choose the teenage hours but it is working for me. I didn’t sleep well for over 30 years which maybe a contributing factor to my PD.

Cheers and I hope you find relief,

Christie

[TracyLaine]

my dad took Klonopin for probably 30 years for essential tremor that then morphed into Parkinson’s. It was always being increased by the neurologist until he finally became like a zombie! I had to convince him that it was an addiction, and that he needed to detox from it. It was not an easy process! But he did it and now his brain/cognition is great again! I have Parkinson’s as well, and I would never ever go on Klonopin after seeing what my dad went through.

[Leest2023]

Great to get your opinion. Thank you.

[Caa11]

Klonipin works to help because it essentially stops the REM cycle of sleep, which in itself is not great. There is a great ( although very scientific at points ) called Why We Sleep by Matthew Walker - that speaks to this. The lesser or 2 evils?? I don't really have the answer to that.

My husband also deals with RBD, and has found relief in taking TCH/CBG gummies at bedtime. he went from flailing in bed, falling out of bed, screaming so 10/10 disruption - to what I would say is about a 3- 4/10~ just some talking in his sleep, some screams - depending on his dreams. I know this is not available in all areas, but maybe with a medical card, you would have access to it. He also takes Mg Glycinate as well as Vit, D specifically for the sleep benefits. Meditation sleep apps to help increase delta waves. Just some other suggestions to try. I wish you all the best in this journey