Helping Those Who Care for Parkinson's Patients
| [Home] [Forum] [Help] [Search] [Register] [Login] [Donate] |
| You are not logged in |
|
| ||
|
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. |
| ||
|
Hello Vi, Sure sounds like you have your hands full and that you have done your due diligence. There are so many symptoms that fall under the ‘Parkinsonism’ umbrella. This may sound crazy but had your PCP or Neurologist referred him for a sleep study? I know that that is done to discover sleep apnea but I wonder if it could provide enough evidence for his doctor to be able to take the next step toward a customized plan to help him somehow. I don’t know. Just a thought. It just might enable the doctors to resort to (and insurance to offer coverage for) an ‘extreme measure’ that would not normally be available but is possible for his situation. Hang in there- NoMatterWhat |
| ||
|
You kind of skimmed over what kind of doctor he has. My main questions would be A) is it a neurologist, and B) is it a neurologist who has special training in movement disorders/ Parkinson's/ Parkinsonisms, etc (probably in a bigger city and not in a smaller city or town)? If you get a neurologist that doesn't specialize in this type of thing, they may be in over their head and just never tell you (or may not even know themselves, or think you can't or won't travel a few hours for a more knowledgeable specialist so never mention it). These things can be very difficult to diagnose and also very subtle to treat since every patient may be very different in how they present and what treatments may or may not work. If the neurologist has little experience with many such patients (because they don't have that special training, and treat a wide variety of neurological issues that do not focus on movement disorders), they may not be much help at all. ... The only time mom (who has Parkinson's) was moving a lot toward bedtime was on occasions where her carbidopa/levodopa doses from throughout the day seemed to build up or kick in at the the end of the day (often randomly). But if I read your post correctly, he is not on anything but gabapentin? ... I don't know as much about Parkinsonism as Parkinson's. Google tells me there is usually some underlying cause of Parkinsonism, such as a medication, vascular issue, or other disorder. Has anyone determined what the cause is, or given any insights about it? |
| ||
| I agree with greyeyed I think he needs to see a neurologist or one specialist in neurology. They should be able to prescribe something to calm him down especially at night. |
| ||
|
In reading over this thread, I thought I'd google to see if there might be a connection between Parkinsonism and gabapentin. ... "While gabapentin is not known to directly cause Parkinson's disease, it can be associated with movement disorders, including parkinsonism, as a potential side effect. This association is primarily seen with higher doses or in individuals with pre-existing risk factors for movement disorders." ... I would consult his doctor about this. ... Mom took Lyrica for a while 10 years ago, which is related to gapabetin, and had an extremely bad reaction that worsened her Parkinson's for a year even after stopping it. There wasn't much online at the time about a connection between Lyrica and Parkinson's, but on a hunch I googled it also. ... "Yes, Lyrica (pregabalin) can worsen Parkinson's symptoms in some individuals. While it's not a common side effect, there are case reports of pregabalin-induced parkinsonism. Pregabalin can also interact with other serotonergic medications used by Parkinson's patients, potentially leading to serotonin syndrome, which can cause a sudden decline in mobility, rigidity, and other severe symptoms. Therefore, it is crucial to discuss all medications with a healthcare provider to avoid potential interactions and worsening of Parkinson's symptoms." ... I'm not saying the gabapentin is the cause his nightly problems, but it might be a possibility to rule out first before looking for other possibilities. (Also I'm not suggesting you take him off of it or anything. Maybe do a little online research, print it out, and take it with you to the doctor.) |