Extreme Insomnia Due to Inability to Lie Still at Night. Desperate Family seeking Advice.

vi30295

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.

SDianeL

Welcome. So sorry about your Dad. You have found the right place for info and support. My husband was put on Risperidone which helped his hallucinations and he slept all night. I also gave him a CBD gummy twice a day. That seemed to calm him. I asked the doctor if it was OK and she said yes. Geriatric Psychiatrists are the best doctors to get medications balanced. She was the only doctor who helped at all.

vi30295

https://alzconnected.org/discussion/comment/251463#Comment_251463

What brand or dosage of CBD did you use? Have you ever experimented with THC?

SDianeL

https://alzconnected.org/discussion/comment/251563#Comment_251563

FAB CBD. Great company, great product quality. They have daytime and nighttime gummies. No THC. I would be afraid to try THC with a person who has dementia. My husband had hallucinations so I was afraid the THC would make them worse.

Quilting brings calm

I know someone that takes ropinerole ( lunch, supper, bedtime) and pramipexole ( bedtime) for restless leg syndrome. He also takes gabapentin ( split pill lunch and supper) but that’s for neuropathy. The neuropathy mostly bothers him at night. Getting the gabapentin in before it starts works better for him. He also takes B12,B/complex, and magnesium vitamins to combat both RLS and neuropathy. He uses a ‘relaxing’ foot cream and a leg cream too on bad nights. Because his calves hurt too. For a few years, he also used a Neupro patch nightly for neuropathy. Mirtrazipine and trazadone are sleep meds to keep someone from repeatedly waking. I doubt they work well without getting the restlessness under control first so that he gets to sleep in the first place.

persevere

I’ve seen risperdone mentioned several times and I also use that for my wife. She had a delusional period coupled with the restless legs. Finally, after using 1mg risperdone we were able to sleep again.

vi30295

Another issue we are struggling with is: Its very hard to discern whether my dad's behavior is a side effect of the medication or just chronic sleep deprivation building up. Like, we tried the rivastigmine patch for a few days but his mobility started suffering greatly so we discontinued. But in hindsight, was that the patch or was it just the chronic sleep deprivation? If you see your father struggling and wondering whether its a drug side effect, its very hard to keep giving him that drug with that thought in the back of your mind. But on the flip side, are we not doing him any good by not just powering through and giving him the drug no matter what to see if it might possibly have a benefit? Feel like we are stuck in a very difficult place right now. My mom is also very skeptical about loading my dad up on a lot of meds so as soon as she suspects a possible adverse reaction, she takes him right off the medicine. But like I said, that leaves me wondering whether we are even giving the drug a fair chance. Frustrating and sad at the same time.