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Ask a Narcoleptic
#1
Ask a Narcoleptic
Sleepy 

Narcolepsy is fairly rare, but I think there are a lot of misconceptions about it out there. 
 
Just FYI, I also have frequent episodes of sleep paralysis and hypnagogic halucinations (frequently co-concurrant with narcolepsy, but can be had on their own), which honestly are kind of cool now, though they freaked me out the first few times I had them as a kid/tween.

I've had it all my life, but was only recently officially diagnosed.  I don't want treatment (stimulants and me don't agree), so I always figured official diagnosis was a waste of time. But too many people kept telling me I was just lazy, didn't exercise enough, didn't eat right, etc, so I went ahead and did the sleep study, kind of for my own peace of mind.

So...up front, no, not every narcoleptic falls asleep mid sentence.  Most people will still assume that my extreme sleepiness is due to my own lack of proper diet, exercise or some other things I'M doing wrong, and that is more distressing than the sleepiness itself.


So, any questions? If not, cool.  But if so, I'll answer after I get up from my nap.  Big Grin Sleepy

(Also, if anyone cares, "How narcolepsy contributed to losing my religion".  Story at 11)
“Eternity is a terrible thought. I mean, where's it going to end?” 
― Tom StoppardRosencrantz and Guildenstern Are Dead
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#2
RE: Ask a Narcoleptic
Does it impact your ability to drive a car or operate dangerous machinery? Are you in danger of falling asleep while using such things?

"A wise man ... proportions his belief to the evidence."
— David Hume, An Enquiry Concerning Human Understanding, Section X, Part I.
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#3
RE: Ask a Narcoleptic
(May 31, 2015 at 11:52 pm)Pyrrho Wrote: Does it impact your ability to drive a car or operate dangerous machinery?  Are you in danger of falling asleep while using such things?

Good question.  For some narcaleptics, the answer is yes.  My cousin even wears a little neck thing that beeps at her if her chin drops down too far.  For me, the answer so far has been no.  I do not suffer the "sudden" onset of sleep the way some do.  I have a warning period, and I can usually push through it if required, but since I know that can be dangerous anyway, if I feel the warning sleepiness, I just don't do those things.  
Still, I'll never go looking for a job as a truck driver or crane operator.  Tongue

Fortunately, I'm on disability right now which allows me to schedule my life around my need to sleep at weird times of the day.  For instance, sometimes I do my shopping at 6pm, because I needed a nap before I could safely drive.  It can be awkward, but my family is learning to adjust to it. 
 
Back in my 20's, I did drive many times when I shouldn't have in order to get to work on time.  I regret that a lot now, looking back.  I could have easily fallen asleep at the wheel and killed myself or innocent people. 
If I ever do get back to work, I will also get a neck/chin beeping thing, for the safety of everyone around me.
“Eternity is a terrible thought. I mean, where's it going to end?” 
― Tom StoppardRosencrantz and Guildenstern Are Dead
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#4
RE: Ask a Narcoleptic
Is that related to CFS?
Also, on a lighter note, if I start talking to you about how much better the horizontal rock crushers are, and you start yawning, I'll know it's not personal and I'll just keep nudging you, OK?
No God, No fear.
Know God, Know fear.
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#5
RE: Ask a Narcoleptic
How do you handle it and does the sleepiness obstruct in normal functioning?
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#6
RE: Ask a Narcoleptic
I would ask, but......never mind, you've fallen asleep.
"Never trust a fox. Looks like a dog, behaves like a cat."
~ Erin Hunter
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#7
RE: Ask a Narcoleptic
(June 1, 2015 at 12:31 am)ignoramus Wrote: Is that related to CFS?
Also, on a lighter note, if I start talking to you about how much better the horizontal rock crushers are, and you start yawning, I'll know it's not personal and I'll just keep nudging you, OK?

I don't know if it is related to CFS, but I don't think the medical community has made a connection.  The causes of CFS are largely unknown as far as I'm aware, and while narcolepsy is still being studied, there are secific things the brain does that can be labeled as narcaleptic, such as going into REM sleep withing 8 to 10 minutes of falling asleep,that are not associated with CFS.  For all I know, a lot of people diagnosed with CFS have mild narcolepsy though, it seems sometimes these things end up related.  
So, in short, maybe?

And yes, don't take it personal if my eyes glaze over when talk of horizontal rock crushers comes up, lol.  Nudging is fine. Smile

(June 1, 2015 at 12:39 am)Neimenovic Wrote: How do you handle it and does the sleepiness obstruct in normal functioning?

Yes, it totally obstructs normal functioning.  Back when I was working, I would fall asleep every day at lunch, and often on my 15 minute breaks as well, and I got teased pretty hard for it, but it was the only thing that made working even possible.  I needed the constant naps.  I kept losing jobs, even though employers would tell me I was the most organized and best workers they had, and did the work of 2 or 3 drafters, because I would miss work, or sleep though lunch on accident in my car.  It makes holding a regular job nigh on impossible.
If/when I get back into the workforce, I'm going to see if I can telecommunte.  I know other drafters that have done it. 

How I handle it, boy, that's a tough one.  Sometimes I don't handle it very well at all.  If I need to get something done I push through the sleepiness, but I pay for it later.  It causes me extreme anxiety AND depression, both things I've been misdiagnosed with IMO.  

Mostly I deal with it by taking naps when I feel like I need to. I am SO lucky I got onto disability, I don't know how other people with narcolepsy have a job and a family, becauae the meds are like speed, which is worse to me than the sleepiness.

Sometimes a nap is unavoidable, like, they just sort of happen to me.  And by nap, I mean 60 to 90 minutes. 10 to 15 minute power naps do shit all for me.  
I have pulled over and slept in my car.
I have slept in some very awkward situations.  I guess I just get used to it, and my friends and family just accept it now, too (though there is still teasing, lol).

Also, feel free to tease, it is a funny thing to have sometimes, so I won't get my feelings hurt.  Tongue  
“Eternity is a terrible thought. I mean, where's it going to end?” 
― Tom StoppardRosencrantz and Guildenstern Are Dead
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