Narcolepsy. Let me tell you out of ALL of the problems I have I think that one is the most inconvenient.
Growing up I never understood just how powerful narcolepsy can be. I would complain about my mom always falling asleep "come on just get up and shake it off!!!!" Or the great advice everyone gives me: "stand up and do some jumping jacks!" I, like them, mistook general sleepiness for flat out narcolepsy.
The difference of course, if you have this then you'll know why it's vastly different, is that one is just "yawn oh dear I could use a nap" and the other is "4 benadryl and some rohypnol there is no choice in the matter" coma.
It actually feels like when they're putting you under anesthesia. There is no fighting it and you learn that you CAN fall asleep standing up.
And that is one of the LEAST understood parts of being a chronic illness patient that people outside of your family and physicians understand, and most people write it off as laziness or not sleeping well. They don't realize that narcolepsy does not care how much sleep you had last night.
I am terrified because lately it's been at work when my episodes hit and I don't want to lose my job because of these stupid spells. I'm having one right now and it's taking every fiber of my being to keep my eyes open. I already dozed off a few seconds until the phone rang.
Anyone have coping mechanisms?
Also I feel like the only one who even uses this group come on guys lol
1
Enjoy being online again!
Welcome to the community of good people who base their values on evidence and appreciate civil discourse - the social network you will enjoy.Create your free account
2 comments
Feel free to reply to any comment by clicking the "Reply" button.Are there medications? Provigil comes to mind.
When my insomnia was at it's very worst they put me on that.
I did not - however - have narcolepsy.
And you drive? I think you need to ask your Doctors - that could be so very dangerous.
I've had it happen from lack of sleep and that's scary. If this is from the other stuff? Yup I do not know.
RavenCT
Level 9
Dec 17, 2018
0
I usually pull off the road and sleep until it passes. It's weird the spells once I let myself sleep a little only last like 15 minutes but if I don't take the nap it will kick my ass for 2 to 5 hours, and no amount of coffee or running around stops it.
It genuinely feels like being drugged. I've fallen down multiple times because I will fall asleep standing up or even walking.
And of course the only advice anyone ever gives me is "go to sleep earlier" "drink some caffeine" (I all but have an IV of caffeine trust me that isnt the issue) "get up and walk around"
In high school the teachers would make me stand until they found out i just slept standing up then. At some point it became part of my IEP to just let me sleep.
Unfortunate that jobs don't have IEPs....
@LadyAlyxandrea Sleep study. And it sounds like one that should be done at home over several days with a camera on you.
A friend had that done and it wasn't that hard. But they monitor for narcollepsy.
Coffee does NOT solve narcolepsy and I swear we have an actual narcoleptic in this group. Perhaps she'll have some good advice for you. Fingers crossed.
@RavenCT I actively avoid sleep studies because I cannot sleep for them. At all.
I'd rather do one at home recorded, but no one around here do them at home.
But I do know that while I slept 8 hours last night, it was not a restful sleep by any means
@RavenCT Aye, that'd be me. And you're right, coffee doesn't do shit for narcolepsy.
It's treated differently depending on what kind of narcolepsy one has. With cataplexy they go all out and prescribe Xyrem to take at night, as it's a REM sleep inhibitor, and stimulants like Ritalin or, indeed, Provigil to take during the day. But, since Xyrem and Ritalin are controlled substances and Provigil is super expensive, they will insist on a polysomnograph and multiple sleep latency test to confirm a diagnosis.
Recent Visitors 16
Photos 29 More
Posted by Sonja44Sums it up.
Posted by Sonja44This meme cracks me up. I'm Fine.
Posted by PiperMckennaAlways cold + sick days = Mermaid. Sometimes living with peoples who like the AC isn't such a bad thing.
Posted by PiperMckennaI'm quite prone to bruising because of EDS....any tips on how to reduce the look of bruises? Ideally I'd like to prevent them. But it's too late for that today. haha
Posted by LadyAlyxandreaI didn't learn my lesson well enough in March when my incisions refused to heal because i was working the crazy shifts.
Posted by ponz111I have restless leg syndrome which is not uncommon but with me it is my whole body which has the complusion to move.
Posted by LadyAlyxandreaPost op day 3 update: There will be some TMI, which I will mark so you can skip if you don't want to get grossed out.
Posted by LadyAlyxandreaBehold!!!! My weightloss progress thus far!!!! And an update: Surgery in two days.
Posted by RavenCTTruth,,,,,
Posted by LadyAlyxandreaHow it feels going to the doctor
Posted by LutherzmeAnybody else have to do this once a week?
Posted by LadyAlyxandreaPsst hey kid.... You wanna see something cool? (I scared the shit out of my ortho p.a. as he walked by my office. It was freaking hysterical)
Posted by LadyAlyxandreaFor today's game of "whats that weird random pain" I broke my big toe.
Posted by LadyAlyxandreaSo I finally have the date for MEETING my new neurosurgeon.
Posted by sassygirl3869Medical Reasons For Using Cannabis
Posted by sassygirl3869Multiple Sclerosis Relief