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Narcolepsy

User Profile: JeremyTheLostNarcoleptic
JeremyTheLostNarcoleptic December 23rd, 2015

Such a misunderstood condition. Can't stay awake without medication, can't focus even with it sometimes, and treated as sitcom fodder by society. I can't stand it.

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User Profile: SilverWaterfall
SilverWaterfall December 24th, 2015

That sounds awful Jeremy, I'm sorry to hear you're experiencing this *hugs* :)

User Profile: CarpetLovesU
CarpetLovesU July 22nd, 2016

@JeremyTheLostNarcoleptic

Damn annoying. Feeling dependent on meds-not much research on it-lonely af.

1 reply
July 24th, 2016

Although I don't have narcolepsy, I used to work with a guy that did. He was always fidgetting with something. If he kept moving, he wouldn't fall asleep. I always got scared for him when we were doing things that could potentially be dangerous. (worked with livestock). While a lot of our coworkers laughed at home, I would be talking to him, asking questions he had to answer to try to keep him awake, or sending him to do another task while we did said dangerous jobs. I always wondered how he drove. Turns out he had lots of things in his truck to fidget with while driving. I think both the narcolepsy and the fidgetting were dangerous. So can I ask, what do you do to stay awake while driving. I'm assuming that you do drive.

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September 27th, 2016

I also have narcolepsy but I am unable to take meds for it. I can take [edited by forum mentor InspiringLee for drug names] to help me sleep but over time it doesn't work for me. Other sleeping meds give me severe sleep paralysis or hallucinations. Alertness medication even provigil eventually all cause me anxiety over time. So I suffer with chronic fatigue and am unable to work. It is not manageable fatigue. People do not understand that there are no special diet or supplements to help. I like sleeping though I just wish I wasn't sleeping my life away.

I think I would like to get one of those companion dogs that are trained to help people. I've heard they can help with cataplexy and would make me feel safer when I'm alone in public. What are your thoughts?

1 reply
User Profile: KestraJean
KestraJean February 23rd, 2018

@MorningStar610

I have hypersomnia, narcolepsy's less heard of cousin, and am currently running the medication Gambit without much in the way of results. I'm starting to look at going on to disability as an option seeing as I can't drive like this, and working is an ongoing struggle that can only end poorly. Do you have any advice for someone in my position? Perhaps you can tell me how to keep from isolating into Oblivion? Thanks, and keep your chin up.

Kestra

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