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

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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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Hi, @vi30295. Firstly, a very warm welcome to the community.

Thank you for sharing this so openly. It sounds incredibly exhausting for both your father and your family. Sleep difficulties are sadly very common in Parkinsonism and related conditions, and they can have a huge impact on quality of life, mobility, and cognition. It’s completely understandable that you’re feeling desperate for a solution.

There are a few things that might help alongside medication - A specialist review with a Parkinson’s nurse or neurologist can sometimes help by adjusting treatments or suggesting strategies for nighttime agitation and insomnia.

Small changes to the sleep environment, like low lighting, calming sounds, or removing excess stimuli, can sometimes make a difference, as can gentle evening routines that help signal that it’s time to relax.

For practical tips and advice, we have a page on sleep patterns and insomnia which will also hopefully be useful.

Please know that you can also call our free, confidential helpline: 0808 800 0303 (9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays). Our trained experts and specialist nurses can offer tailored guidance and practical ideas specific to your father’s situation.

You’re doing an amazing job caring for him through such a challenging time. I hope you’re able to find something that helps your father get the rest he needs.

Take care :blue_heart:

Parkinson’s UK Moderation Team

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Good afternoon & really sorry you and your Father are struggling with these issues.
I am 71 & was diagnosed with Parkinsonism in June 2023. I have had undiagnosed symptoms for quite a few years.

I have had extreme insomnia related issues, restless leg etc, nightmares and simply not sleeping at all during the night.

I have been on an excellent Parkinson’s drug called Co-careldopa which has helped my Parkinson’s symptoms BUT probably caused my sleep issues.

You say he was on no Parkinson’s medication for 9 years intimating that he started medication then, am I correct? Then that was when his sleep problems started.

I will answer further when you have given me this answer.

Best wishes
Steve2

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He did not start the classic PD medication carbidopa/levodopa even after 9 years. That is only something we tried recently to see if by chance it would help with the insomnia (it didnt). Basically everything we have tried in the past 3 years has been to try and help him sleep but nothing has seemed to work. He’s been on gabapentin (previously ropinirole) for his RLS pretty regularly but other than that, he isnt on any steady medication. Usually his neurologist just prescribes something for sleep to try for a few days- few weeks. If that doesnt work, we discontinue and try something else. So far, nothing has worked.

We were hopeful when we recently changed neurologists and he said this sounds like akathisia and prescribed mirtazapine. But it had no affect. And its not like he’s constantly moving all night. Its a lot of propping himself up on his elbows, or sitting on the side of the bed, or crawling around on the floor. Its not like hes just pacing around in his room all night.

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Regarding medication, how long do you have to try Carbidopa/Levodopa before you know if its working or not?

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Good morning Vi … I had previously tried Madopar and another Parkinson’s drug, neither worked.

I play Indoor bowls and before taking Co-careldopa I was having to miss games due to balance problems. After starting Co-careldopa I was able to play every day.

The affect was fairly quick, although how quick I do not really know.

Quite a subtle difference, not something I would have noticed if I did not play Indoor bowls.

Best wishes
Steve2

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It can vary a bit from person to person, but usually doctors start to see the effects of Carbidopa/Levodopa within a few days to a couple of weeks. How quickly it works and how well it helps with symptoms depends on things like dosage, timing, and how your Parkinson’s is affecting you.

It’s always important to keep your doctor or specialist nurse updated on how you’re feeling while on the medication - they can adjust the dose or timing if needed.

If you want more advice or support, the trained advisers on our helpline can chat things through: 0808 800 0303.

Take care,
Parkinson’s UK Moderation Team :blue_heart:

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Hi,
I was given Neupro Rotigotin 24 hour patches as I had suffered with RLS for years. I used to be up and about for half of the night in agony. But from the very first day of using the patches I slept through the night. After a while they were not doing the job so they just upped the milligrams to 4 then to 6mg and I can say I do not have RLS anymore. The Quetiapine is usually for hallucinations, i had horrendous ones but I now take 3 per night and again this has helped my sleep pattern together with anti-depressants clonazepam, mirtazapine. I also take half sinemet and Stanek which is a slow release 12 hour tablet. I am surprised you are on Gabapentin as it is an addictive drug and has many side effects. During the day I take a number of co-careldopa 9 in all, plus Stanek day time slow release and Venlafaxine for my depression. This has helped. But I wonder has the consultant told you about Lewy Dementia, as your dad has the classic symptoms, is he treating that as well as Parkinson’s. It might be worth either talking to the parkinson’s nurse or Consultant about this. I hope I have helped.

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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.

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Hi vi30295. We completely understand your concern and just how difficult it must be for you, your mum and your dad.

As mentioned, we’d advise speaking to your dad’s GP or Parkinson’s nurse. They can advise on the best action to take and what prescription and dosage will work best for him.

You are also more than welcome to call our helpline on 0808 800 0303. Our specialists will be happy to answer any of your questions and offer you advice and guidance.

We hope you find some helpful answers.

Parkinson’s UK Moderation Team :blue_heart:

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welcome vi30295 I hate to be the person who tells you but I was

dignosed in 2010 with PD the first thing I noticed was that I could not turn over in bed. your father world in just like a mirror image to me, I have all the same sleepless nights. in fact if I do stay in bed all night asleep. Next morning there is a union jack outside every window near us. All I can tell you is what i do , i some time’s bake/ tidy the house./ iron/ look at computer for a flim. as !! I most time than not i will nod off. Also I stick music on ad this will send me to sleep/Your right about the light switch. I told my PD nurse about not sleeping she told me all the normal thing like have a warm bath, a warm drink, ect ??? IT doe’s not work, so if I am tired then I will just lay on the sofa you do not say how old your farther is this jan 2026 iL will be a grand lady of 80, so all you can do is when your father is awake then just make sure so one is with him when needed.

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My husband who has Parkinson’s takes Hemp oil/ CBD oil at night and thinks it really helps him sleep. We get it from Amazon .

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