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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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@ vi30295, HUGS!!! Oh man been there done that. Ran around in circles trying to figure it out. In the end I decided to slow down and give the meds a little more time, as it appears that a lot of these drugs need at least 2-3 weeks of regular use to take affect. When I personally started on the carbidopa/levadopa I thought it wasn’t going to help me, and then 2 weeks in I realized it was helping. The brain is a fascinating organ. For my dad and his brother (one diagnosed with Parkinson’s, the other with Alzheimer’s), their journey’s were different but similar. But at a certain point both passed through the sundowners and agitation phase. For my dad he became kind of fixated on me. As long as he could see me he would calm down. Quite a surprise considering how contentious our interactions were earlier in my life. 🤣 we were both stubborn😂.
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4 Reactions@selboulder Welcome to Mayo Clinic Connect! I’m really glad that you found us. Do you, or someone you know, have Parkinson’s? You’ll find lots of good topics and great answers here!
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2 ReactionsMy husband has Parkinsonism/Parkinson’s with dementia. It is common with this diagnosis to have a day and night reversal. It’s a struggle to returning to a more normal circadian rhythm. He ended up in a geriatric dementia unit for a couple of weeks and they were able to stabilize him. He takes olanzapine at night, 7.5 mg and 15mg of Natrol extended release melatonin. As we age, melatonin is less available in the body so supplements often help. I mention the brand because I’ve personally experimented with various brands and this is the most effective that I’ve used. It also helps if you can have daylight in your eyes first thing in the morning and perhaps some time in the sun during the day.
He also takes sertraline in the morning. That helps stay up.
I had a really hard time needing to be up at night with my husband and then taking care of him and the household all day.
He still gets up a couple of times a night to go to the bathroom but not twenty times like it was before.
I hope you all get some relief soon.❤️
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5 ReactionsSleep deprivation has many colors, side effects. Severe sleep deprivation can cause signs and symptoms of dementia as well as signs and symptoms of mania, mental illness, etc. It is imperative your loved one gets sleep, so everyone can cope with this disease.
Medications for PD or sleep, symptom relief, as long as they are not causing dangerous side effects, should be in place 60-90 days before the doctor takes the patient off the medication. Switching a PD patient back and forth continuously or not giving them medication because it doesn't "seem" to be doing any good is not a reason to take them off a medication. We are not the patient, and therefore cannot understand totally what the PD patient is experiencing.
In addition, a drug may not work at one point in time, but them it MAY work when tried at a different point in time of the disease experience. Give drugs time to work, try different combinations. Even when drugs are tried at different times of the seasons, the effects can change, especially with drugs to help PD or Alz type diseases as the brain is affected by seasonal sun time changes.
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1 ReactionMy husband died a few years ago with Parkinson's , but until then, he was sundowning to the point that I found him one cold morning laying face down in the dirt with hyptheria and he had to go to the hospital. We live on 22 acres of almost wilderness, so you can see it was scary worrying about him.
On my own volition I started giving him 10 mg of melatonin at 4pm and another 10 mg at 10 pm. He never undowned again except for one time when my son was caring for him and didn't give him the 4pm dose until 6pm.
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2 ReactionsWow! Who's letting you (prescribimg) try all the different meds??? Sounds like the doctor is out on a limb, just fishing around.
I have had sleepless issues off and on for many years, but lately it had become a constant.....some nights about 5 hours (!!!), many many zero hours of sleep per night. My average over 60+ days was two hours. Not enough to reach REM sleep. not enough to turn off my busy braiin, which is all I could call it. Ask the patient: what does he HEAR when trying to sleep, and what does he THINK..... also search "Earworm" before you ask...I've had so-called medically trained people who merely thought I was psychotic (really 🙁 and that led to BAD things).
When things became impossible, I was sleep-deprived, nauseous, vomiting, hallucinating when closing my eyes, had aan on-going earworm, was constantly semi-awake: fuzzy vision, mixed up thought processing, inability to concentrate or multitask, and plenty more. The solution was actually very simple. While a simple dose of 20 mg of melatonin once worked, now results were too varied. When I was put on Quetipiene 25 mg 3/day with 200 mg at night (Yes, that's overkill, but not mine), plus 10 mg Melatonin at suppertime, Clonazepam 0.5 mg AM and bedtime, Cymbalta 60 mg at breakfast and suppertime....I slept. I'm still waiting for my next neurologist's appt so I can get mediation on the Q...i know the nighttime dose is too high, or rather, higher Than Necessary. I've been cutting 200 mg pills into quarters (50 mg) at bedtime, when prescribed dose is 200, and all the noise will stop, and I can fall asleep. That's what's been keeping me awake: noise. Buzzing, talking, planning, worrying, re-living events, hearing pieces of songs. All the other meds were already being taken, so it must be the Seroquel (Quetiapine). I'm also going to ask about cutting out one daytime dose, to further relieve my feeling of daytime dizziness, sleepiness. Sorry for the long reply. The Seroquel took One Day to get me sleeping 8 hours a night and continues to do so 3 weeks later. I suspect, but can't verify that I was given an initial high dose, before going to the day/night dosage. Good luck to all. (and Cd/Ld never caused sleep disturbances, just for the record)
What were the dosages for each? How often taken?
To quote AI: "Neurologically, "sundowners," or sundowning syndrome, is a behavioral disturbance in people with dementia or cognitive impairment characterized by a predictable worsening of confusion, agitation, and other symptoms in the late afternoon or early evening. It's believed to stem from disruptions in the brain's circadian rhythm, increased fatigue, light changes, and potentially medication side effects, leading to symptoms like confusion, anxiety, paranoia, hallucinations, and mood swings."
So all those little naps we've been told to take? disruptions in circadian rhythm. Everybody tends to lump this under Alzheimers or Dementia... maybe it just Looks that way???
Hi, @bruizersmom - how awful that you were sleep-deprived, nauseous, vomiting, hallucinating and dealt with constantly being semi-awake. Glad that you've now found a regimen that helps you get the sleep you need at night but allows you to function during the day.
About sundowning, AI is a good place to start, though I also try and double check some of the information I get in AI responses. Something else that may be useful is this information on sundowning from Mayo Clinic:
- Sundowning: Late day confusion https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/sundowning/faq-20058511
Here's some other information that seems helpful on sundowning and Parkinson's, dementia, Alzheimer’s, Lewy Body Variant (which @vi30295 mentioned specifically in relation to their father) and similar is:
- What is sundowning, what causes it and how does it impact the caregiver? https://www.parkinsonsresource.org/news/articles/what-is-sundowning-what-causes-it-and-how-does-it-impact-the-caregiver/
How has the nighttime sleep and daytime alertness gone for you over this past weekend, bruizersmom?
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1 ReactionWell, so far no one has stuck me with an Alzheimer's or Dementia diagnosis, which is great. The nausea was evidently because of the constant pain of constipation; a suppository took care of that temporarily, and I adjusted my const. protocal (still working on that) and so far only one teeny nausea incident. With the pain and constant interruption of sleep caused by it, plus prescription for a sedative (still working with Doc to fine tune that) I am now able to get 8 hrs in, and can easily go back to bed if I'm feeling sub-par...no more hanging around, head on pillow, waiting and waiting, trying every trick in the book with no success. Now: Sleep, glorious sleep!
Thanks for caring! Much appreciated.
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