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HealthI am a 26 year old narcoleptic. AMA!

Dec 23rd 2016 by Enibini910206 • 21 Questions • 71 Points

Hello reddit,

I am here to try and answer any questions people may have about what it is like to live with narcolepsy! Here is a little information you need to know first:

  1. I was not diagnosed with narcolepsy until 22 after all of my schooling.

  2. I have a moderate case that developed in my early teens, some have it much worse unfortunately

Here is me during the sleep study. Proof: https://imgur.com/a/2QUYv

Q:

If OP does not answer for a while, is that proof?

A:

Very well could be, it's much like blacking out. You don't even know you fell asleep till you already woke up


Q:

So....just like sleep?

A:

Yes but rather than have no memory of falling asleep in a bed, I have no memory of falling asleep mid conversation or while gaming (these are the most common cases)


Q:

So you're that guy on my team in mp games!

A:

If it's hots then maybe


Q:

At first I thought I was going to open up into a joke where you'd start typing the body of the post followed by a "sddddddddanjibdddddddfjibdfssdffffffffffffffffffffffffffffffffff" as your face hit the keyboard lol.

But now knowing it's serious, do you have any triggers? does it work like epilepsy would? or is completely random?

A:

It's all good, it can be pretty funny even for me sometimes too. But the most prominent triggers involve me sitting and doing repetitive tasks or trying to focus on something I have no interest in. But for the most part it just happens when it wants to


Q:

That is interesting!

I've always wanted to ask someone with narcolepsy this...I'm really sorry if it sounds really wrong, but what do you think would happen, if you had a device that detected when you were falling asleep / passing out and it sent a quick electric jolt through your body. Would it wake you up? or prevent it?

...I think it's safe to say It's a good job I'm not a scientist lol.

A:

No need to feel bad lol. It would certainly wake me up but not much to keep it from happening again a minute later. I used to chew on the inside of my lips and on my hand to try and keep myself up, didn't work to well though


Q:

What kind of symptoms does mild narcolepsy have? I thought that it's always extreme.

How does narcolepsy develop? (You said you didn't have it til early teen age)

A:

Extreme cases tend to be more present while also physically active. There is a second down side to the narcolepsy other than just falling asleep. In extreme cases while feeling an emotion too strongly or being suddenly surprised can make them pass out. I landed in the middle, I can fall asleep while physically active but I've never passed out from shock or strong emotion.

The narcolepsy developed along with your brain, so while it was maturing the narcolepsy made itself more prevalent. Ex. I would always fall asleep in class involuntary, but that didn't start until high-school and progressively got worse


Q:

1 How exaggerated is narcolepsy in pop culture? Do you just fall asleep randomly without warning?

2 What do you think of the Ben Folds song?

A:

In what I have seen it is exaggerated but not by as much as one might think. Passing out for a few minutes at a time with no recollection of it is very common for me when not on my medication. Although falling asleep while running and such (rat race) has never occurred to me.

  1. I will check it out now

Q:

Hello, I was wondering, do you find it difficult to sleep for long periods of time, such as 8 hours or so, for a "typical" night's sleep? How does having narcolepsy affect what others may consider a normal sleep schedule?

A:

In a normal 8 hour schedule I sleep quite regularly, I may enter REM sleep 1 extra time and I do sleep quite heavily but not much else. The problem is that even with 8 hours of good rest, it won't have any change on my falling asleep during the day


Q:

Gotcha. That makes sense. Thanks for the reply. I'm sure you've tried this sort of thing, but what effect does coffee have on your narcolepsy? I know that caffeine is a mild stimulant, and stimulants can be used to treat narcolepsy, but I was just curious on your own personal experience.

A:

Anytime, as for Caffeine, it has little effect on me when it comes to staying awake. It still gives me the energy like everyone else (great for going out) but that doesn't really stop me from falling asleep if it kicks in.


Q:

Is there anything you know of that triggers you blacking out or has every event been at random?

A:

For the most part at random, when I'm already tired it happens more frequently. The only surefire way it will happen is if I sit down and do nothing for a couple minutes with nothing to interact with


Q:

Provigil or Nuvigil, which one is your cup of butter?

A:

I got thrown on modafinil, it's a substitute for provigil


Q:

So you have cataplexy as well? That's what I have is narcolepsy w/cataplexy

A:

To be honest I thought it was all from the narcolepsy but that would make quite a bit of sense. I have not been formally diagnosed with cataplexy but my doctor told me these were side effect


Q:

How much does your narcolepsy affect your day to day functioning? Are there goals or interests that your not able to pursue secondary to this diagnosis?

Edit: grammar

A:

While there is medication that allows me to do things I normally wouldn't (like driving). I now get extreme anxiety whenever behind the wheel. This goes for a lot of things and although I deal with it pretty well, it does get overwhelming at times.

Luckily I had found out early enough that it hadn't changed much of my goals in life since I already tended to lean toward "hands on" work that would keep me awake.


Q:

What's the worst place youve ever fallen asleep at?

A:

Oh that's a tough one, I would probably say in a hot tub, nothing scarier than waking up to your face barely out of water and you have no idea how long you've almost been under


Q:

Thats terrifying....

A:

Ya suffice to say I immediately got out and went back to the hotel


Q:

So what do you want people around you to do when you fall asleep suddenly? Try to wake you up? Just chill and let you have your moment? Something else?

A:

Wake me up certainly, luckily there isn't really a down side to waking up a narcoleptic, it's just like waking someone up regularly


Q:

What did you graduate with?

Since you have no memory of falling asleep or anything during, has anyone taken advantage of the situation at hand?

A:

Associates in hotel management, and friends used to pull pranks all the time if I passed out, but as far as I'm aware no one has tried anything malicious


Q:

What kind of pranks?

A:

Mostly the usual marker or stacking things. Nothing too bad most of the time just because it happened so often, and I would always wake up if they attempted to move me entirely


Q:

late to the party, but hey maybe you'll still answer :D

the only exposure of someone being narcoleptic my entire life has been through the movie Rat Race, so somehow i think of it as a rather "funny" form of... disease? to have (sorry for saying disease, not a native speaker and im lacking a better word for it right now) anywaayy

  1. do people think it's "funny" if you fall asleep midst conversation?

  2. was it only diagnosed at 22, or did you become a narcoleptic at 22?

  3. what would happen if someone woke you up? is that even possible or is it like "hibernation" for a short while (meaning you block out all your surroundings)?

  4. do you feel tired before/afterwards?

sorry if i sound mean or anything, im just really curious. dont mean no harm. anyway, have a great day!

A:

Don't worry no offence taken, it certainly can be funny sometimes even for both parties, but most of the time it's just very frustrating. 2. I was diagnosed at 22 but it was a problem for me though most of my teens 3. It would be just like waking someone up regularly, I may be a little groggy and cranky but nothing out of the ordinary 4. Sometimes I feel a wave of exhaustion before hand but it's pretty rare, after I wake up though I'm almost always more tired than before


Q:

thanks for taking your time and replying! :)

A:

Anytime


Q:

Reddit. Always asking the questions that count.

A:

No