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Narcolepsy/ Sleep disorder support
November 29, 2021 at 1:54 pm
Does anyone on here have narcolepsy or a similar sleep problem just randomly falling asleep. Do you know someone who is? Do you have a list of forums like this one where people with those issues get together and discuss solutions. I'm finding it difficult to find the proper place to discuss via the google bot. Any help would be appreciated.
"There ought to be a term that would designate those who actually follow the teachings of Jesus, since the word 'Christian' has been largely divorced from those teachings, and so polluted by fundamentalists that it has come to connote their polar opposite: intolerance, vindictive hatred, and bigotry." -- Philip Stater, Huffington Post
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RE: Narcolepsy/ Sleep disorder support
November 29, 2021 at 2:15 pm
(This post was last modified: November 29, 2021 at 2:15 pm by BrianSoddingBoru4.)
Not a clue, sorry. Especially sorry if you’re the one with narcolepsy - I understand it can be devastating. Best of luck, hope you can get some help.
Boru
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RE: Narcolepsy/ Sleep disorder support
November 29, 2021 at 2:17 pm
I have an ex-coworker and friend who was on meds for narcolepsy but I didn't delve very deeply into the details. Since she was pretty much all natural when it came to food and treatment of illnesses I figure it must have been a real problem since she did take meds for it. Good luck with finding a solution and some support.
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RE: Narcolepsy/ Sleep disorder support
November 29, 2021 at 2:30 pm
Idiopathic Hypersomnia here. I've been dealing with it since late July of 2015. Nuvigil/Provigil helps, but it only goes so far. The pandemic wrought further havoc on my sleeping patterns. I had a sleep study before the world ended, and I found out two things: 1) I somehow have most all the symptoms of sleep apnea, but not the actual disorder, and 2) I should always sleep on my side. And now that the candy store I used to work at is out of business, I've been looking for another job, but something with normal hours is right out, which severely limits my options.
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RE: Narcolepsy/ Sleep disorder support
November 29, 2021 at 3:49 pm
We have an acquaintance that is a breeder of labs and had it show up in one litter but that's it for my personal exposure.
Did you see this?: https://www.wakeupnarcolepsy.org/
Good luck.
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RE: Narcolepsy/ Sleep disorder support
November 29, 2021 at 4:28 pm
Thanks all, it's not for me. My father has episodes where he falls asleep on the toilet at night. It's embarassing for him and he's reluctant to get help. They haven't figured out why, whether narcolepsy just tired from sleep apnea or some circulation disorder. I have severe obstructive sleep apnea myself. I was looking for people who have dealt with something similar for their solutions. you can find a smart toilet that will clean your arse for you, light up and sprat freshener, but nothing to let you know if you're on it too long. Thanks @ brewer I did see that. I'm not looking for a webinar or physical support group, but a place like this forum where people chat and discuss dealing with something. I just need some tips and trick to help before I go visit during the holidays.
They have pressure sensors, I'm thinking of some sort of dead man vigilance switch contraption, so that once you sit if you don't hit a button or something every 10-15 minutes it'll beep or light up. Any entrepreneurial spirits want to make the next big thing? I require 5% royalties for the idea, but I might invest too.
"There ought to be a term that would designate those who actually follow the teachings of Jesus, since the word 'Christian' has been largely divorced from those teachings, and so polluted by fundamentalists that it has come to connote their polar opposite: intolerance, vindictive hatred, and bigotry." -- Philip Stater, Huffington Post
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RE: Narcolepsy/ Sleep disorder support
December 5, 2021 at 2:56 am
(November 29, 2021 at 4:28 pm)tackattack Wrote: I'm thinking of some sort of dead man vigilance switch contraption, so that once you sit if you don't hit a button or something every 10-15 minutes it'll beep or light up. Any entrepreneurial spirits want to make the next big thing? I require 5% royalties for the idea, but I might invest too.
You might be able to repurpose a cheap electronic kitchen timer - you could keep the buttons that set the minutes and seconds, and move the on/off button to under the toilet seat (with some foam rubber padding so that the weight of the seat itself doesn't start it up).
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RE: Narcolepsy/ Sleep disorder support
December 5, 2021 at 3:53 am
(November 29, 2021 at 1:54 pm)tackattack Wrote: Does anyone on here have narcolepsy or a similar sleep problem just randomly falling asleep. Do you know someone who is? Do you have a list of forums like this one where people with those issues get together and discuss solutions. I'm finding it difficult to find the proper place to discuss via the google bot. Any help would be appreciated.
Had a look a search on Binge and found these. I hope they might be of some help:
Forums | Narcolepsy.Sleep-Disorders.net
Narcolepsy Support Groups: Forums, Near You, and More (healthline.com)
Narcolepsy - Psych forums
There are many more sites.
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RE: Narcolepsy/ Sleep disorder support
December 5, 2021 at 7:12 am
(November 29, 2021 at 4:28 pm)tackattack Wrote: Thanks all, it's not for me. My father has episodes where he falls asleep on the toilet at night. It's embarassing for him and he's reluctant to get help. They haven't figured out why, whether narcolepsy just tired from sleep apnea or some circulation disorder. I have severe obstructive sleep apnea myself. I was looking for people who have dealt with something similar for their solutions. you can find a smart toilet that will clean your arse for you, light up and sprat freshener, but nothing to let you know if you're on it too long. Thanks @brewer I did see that. I'm not looking for a webinar or physical support group, but a place like this forum where people chat and discuss dealing with something. I just need some tips and trick to help before I go visit during the holidays.
They have pressure sensors, I'm thinking of some sort of dead man vigilance switch contraption, so that once you sit if you don't hit a button or something every 10-15 minutes it'll beep or light up. Any entrepreneurial spirits want to make the next big thing? I require 5% royalties for the idea, but I might invest too.
Have you looked at anti-sleep devices? Mostly promoted to truck drivers. They look kind of gimmicky but for the price might be worth a try. Not sure if the stimulus provided would snap someone out of a true narcoleptic episode.
Might be a stupid question but has he been medically evaluated?
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RE: Narcolepsy/ Sleep disorder support
December 5, 2021 at 11:44 am
(This post was last modified: December 5, 2021 at 11:45 am by SlowCalculations.)
(November 29, 2021 at 1:54 pm)tackattack Wrote: Does anyone on here have narcolepsy or a similar sleep problem just randomly falling asleep. Do you know someone who is? Do you have a list of forums like this one where people with those issues get together and discuss solutions. I'm finding it difficult to find the proper place to discuss via the google bot. Any help would be appreciated.
Reddit it's called r/narcolepsy I don't think I have it but I got curious about it after a doctor mentioned it to me once but we never did the follow up to figure it out but i do have sleep apnea.
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