Connect
Extreme Insomnia Due to Inability to Lie Still at Night
Hello All, sorry for the long post but I wanted to give some background information without being too wordy.
My 80 year old father is currently diagnosed with parkinsonism. He initially was diagnosed with parkinsons 12 years ago, then lewy body dementia, and now they just call it parkinsonism. Overall his symptoms were extremely minor for the first 9 years and he wasnt on any medication for the disease. But starting 3 years ago, he has suffered from extreme insomnia that has caused his condition to worsen exponentially.
He suffers from an inability to sit still, relax, and lie down at night in his bedroom. He is just constantly moving all night long. He's constantly sitting on the side of the bed, or crawling on the floor, or standing up and checking the light switches or closet door, or playing with his sheets, or undressing, or etc. Its like a switch flips in his brain once he goes up to his bedroom at night and he has full blown ADHD or dementia and is unaware of what he is doing and truly has no control over it. On average, he sleeps less than 1 hour every night now. We want him in his bedroom at night because he is a fall risk and that is the safest place for him in case he falls.
During the day and early evening, he is pretty much out of it mentally and just sleepy in his lounge chair in the living room. He has a lot of cat naps but nothing long; certainly not long enough to make up for the lack of sleep at night. His mobility has also worsened a lot due to the lack of sleep. We've tried the whole sleep hygiene/trying to keep him awake during the day so he can sleep at night but it's very difficult and the few times we've succeeded in doing so, he still doesnt sleep at night. So we've just resorted to letting him get whatever sleep he can. He can go weeks upon weeks without sleeping at night and then finally his body will give in and he will have 2-3 nights of good sleep in a row; but then the insomnia will start right back up. When he does actually sleep, he is like his old self from 10 years ago the following day so we are just so desperate to get him to sleep. We hate to see him deteriorate like this just due to an inability to lie down at night and sleep.
The only medication he currently takes is gabapentin for restless leg syndrome. That said, he claims that his inability to lie still at night is not because of the RLS so we have to take him at his word. And it's not like he's moving his legs all night long either for relief. We've tried increasing the dosage of gabapentin too and it hasn't had any effect. For insomnia specifically, these are the list of medications we have tried in recent years but none have worked.
CBD/CBN (2025)
Melatonin (2025)
Carbidopa/Levodopa (2025)
Mirtazapine (2025)
Zolpidem (2025)
Quetiapine (2025)
Sertraline (2011-2025; for mood not sleep)
Trazodone (2019-2025; sporadically)
Alprazolam (2024)
Clonazepam (2023)
Donepezil (2023)
Suvorexant (2022)
Ropinirole (2018-2022; then switched to gabapentin)
Does anyone here have any experience similar to ours? Does anyone have any advice? We wish there was just some magic pill that could knock him out every night so that he can have a better quality of life again.
Thank you kindly in advance.
Like
Helpful
HugInterested in more discussions like this? Go to the Parkinson's Disease Support Group.
Connect
@vi30295 Ugh, thank you for your post. You are definitely not alone, my mom has Lewy Body dementia and is suffering the same way with lack of sleep , up and down at night not sitting still, checking the house. She may sleep for an hour or two but up again and exhausted with legs so weak she can barely walk . Her neurologist is recommending Belsomra.
It's difficult to know when there are too many drugs involved and they're having a negative effect or timing of them is wrong or it's just the disease progression.
Does anyone have experience with Belsomra for Lewy Body dementia?
-
Like -
Helpful -
Hug
4 ReactionsHi Rachel @rwinney, Not sure if you have seen this discussion on pain control for Lewy Body dementia but the first post in the discussion has link on medications and a video series that might be helpful - https://connect.mayoclinic.org/discussion/pain-control-with-lewy-body-dementia/.
-
Like -
Helpful -
Hug
2 Reactions@johnbishop thank you, John
-
Like -
Helpful -
Hug
2 Reactions@janna2
hi janna2,
wonderful advice. so glad he was willing to go along with what you had him to do. i can't get my husband to do what i want him to do. so far, no sundowner's, however, i have to go to bed early and i know he stays up late and then sleeps a lot during the day. thing is: your schedule is perfect. now, my husband is in a lot of pain, so he takes tramadol. which only takes the edge off of his pain. sleep is hard for him to get and i would love to try the melatonin and trazadone. which might help him get better sleep but i really don't know that. he was suppose to go to the neurologist, but, has now cancelled 2x's. sorry for the long rant, but, i had to tell you how wonderful you are handling your situation. i say prayers for all the mayo sufferers.
-
Like -
Helpful -
Hug
1 ReactionThis sounds so tough for your father and also for the rest of you who suffer knowing his suffering.
I would definitely consult with a neurologist. They have so many medications in their arsenal.
FYI. My husband just entered Hospice care at home. He was having a hard time sleeping because of myclonus (muscle spasms). We were prescribed Lorazepam ( low dose .5mg. if needed, just before bedtime, and can be repeated 2 more times 4 hours apart). We don't need it every night but when he is uncomfortable, it does the job. The Lorazepam is a sleep inducer, muscle relaxant, and something else I can't remember right now. I think it is usually meant for short term use. It is something that would have to be prescribed and monitored by a doctor, since it can be habit forming etc.
Good luck! I hope that you find something. As you know, the lack of sleep itself accelerates brain damage.
-
Like -
Helpful -
Hug
6 Reactions@memoriestomoments
lilyann here, thank you so much for your response, we need all the help and information and support we can get from all on this journey. we are not alone for sure. wishing the best for you and your husband and know you are in my prayers. i see the time you wrote and i too am an early riser, but had to take care of the kitties before i could sit down and write. take care of yourself.
-
Like -
Helpful -
Hug
2 Reactions@vi30295 I was like your mother when we tried Keppra. It shut my husband down completely and I had to be convinced by the neurologist to try it for 10 days. We ended up weaning him off of it. With the next Seizure and myoclonus attack, I relented to take Brivaracetam. This time I stuck with it for a few weeks and the main side effects did subside. It is hard to wait sometimes. In the case of the brivaracetam, they said the settling down of the side effects could take up to 6 weeks.
-
Like -
Helpful -
Hug
2 ReactionsHello,
I noticed this discussion and just wanted to add a thought. I've had problems sleeping for years. I've been diagnosed with PD and have had less-than-restful nights. I have found a product that has helped me, and I just wanted to share it with you. It is a magnesium powder that I take at bedtime. The brand name is Clam; however, there are many magnesium powders on the market. This one is available in the supplement aisle at my grocery store and at a nearby health food store. It is just a magnesium supplement that you take at bedtime, mixed with water. It has really helped me. Not sure how effective it is for some of the disorders you have mentioned, but it might be worth a try.
-
Like -
Helpful -
Hug
1 Reaction