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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.
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My spouse has had Parkinsons since 2013. He has never taken that many meds before. He takes Melatonin 5 mg., and his seizure meds at night. He takes carbo-dopa 4× a day. I am sure you know that they have vivid dreams with no REM sleep. I asked our neurologist if it would be ok to use it. He sleeps between 6 to 8.5 hrs. a night. I am so sorry this is causing so many problems. Could it possibly that some meds are contraindicated when taken together? I would definety speak with his neurologist and see what can be done. This is not good for your family. I am so sorry you are experiencing this. Sleep is essential for all of you. 🫂
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1 ReactionI have MSA -C & P. I have been having a very hard time getting a full night's sleep. I am 67 years old and have had my diagnosis only recently. I take Trazodone at bedtime and fall asleep fairly quickly. But I wake up about 3 to 4 hours later wide awake and cant get back to sleep. I toss and turn. I want to get up and work on editing my photos but I am afraid if I do I will get into a habit of doing that. I do not have the answers as I am just now talking to my dr's about it. I hope you find the answers you are looking for and I wish you all the best.
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1 ReactionHello, just to clarify, he does not take all those medications at the same time. The only medication that has been a constant has been the gabapentin for RLS. Other than that, we try introducing one of these other medications for sleep and try for a few days to a few weeks but none have shown to be of any benefit unfortunately. Then we try something else in its place and so forth. But so far, havent had any luck with anything.
Also, how long does one need to take carb/levo before concluding if its working or not?
I am so sorry I misread what you wrote. I know that sleep is different for everyone and how they respond. I hope you find something that helps with sleep. Please forgive me if I offended you.
@vi30295 re how long for carbidopa/levadopa. I’m considered early Parkinsonism, and for me after about two weeks I noticed tremor improvement, and after three weeks I noticed I was sleeping better which I was not expecting. I have no idea if that improvement is related to the drug , need others to weigh in. Two of the family members I have cared for experienced “sundowning”, so I know how exhausted you must be. Search for sundowners both within and outside of this Parkinsons topic. My experience is dated back to 2009, but I was lucky in that the trazodone with melatonin worked for us. Maybe something newer has come out. I am so sorry your family is going through this.
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1 ReactionSo for the sundowning, trazodone and melatonin worked? For the sundowning, the neurologist prescribed the quetiapine but unfortunately it had no effect.
@vi30295, Yes- fortunately for us it worked. I’m sorry I don’t remember the final dosage on the Trazodon ( he was a big guy-not overweight). We did 5 milligrams of melatonin about 30 minutes to an hour after dinner, then I would encourage him to do a little task (sort something, fold something, anything that did not stress him out-sometimes it was watching a bit of a National Geographic video on nature, or listening to a cd of old time songs from his era). Then when I could tell he was getting a little tired of that I would give him his trazodon and a little treat, then off we would go to brush his teeth and get ready for bed.
We started doing this routine every night when he first started showing signs that sundowners was upon us. I knew if I let him get upset or stressed, the meds would not help and we would be in for a bad night (or more). It was a long journey. I felt so bad for him-he had been a vibrant outdoorsman. And I felt both relieved and guilty when he lost control of his legs, and I didn’t have to worry about him wandering outside anymore. Even then we kept the routine and I always left something on his bed to entertain or distract him.
I am so sorry for all who are in this situation. I hope you can find a resolution.