What narcolepsy really looks like

YouTube Description:

I have narcolepsy with cataplexy, and it can be very frustrating to try to explain what it's like to people who have never seen narcolepsy in real life, and how much of a struggle it can be. Most people think that it's funny until they see what actually happens, or they are completely unprepared and get really scared and panic.I filmed this by accident, and it was really weird to go back and watch later from an outside perspective. I am posting this video as a way to help educate people, so please no trolling. Just like people with epilepsy, I can't control having a sleep attack or cataplexy any more than they can control having a seizure. Thank you for your understanding.

And in case you were wondering what I kept looking at, I had the choreography written out next to the camera so that I wouldn't lose my place in the dance.

Soran Bushi Japanese Fisherman's Dance

Music from the Bleach Soundtrack- Nothing Can Be Explained by Mike Wyzgowski. I don't own it and claim no rights to the song.

For the next video in the series, click here:
http://youtu.be/oXQvI4resm4

(via LiveLeak)
articiansays...

I have a college friend who has Narcolepsy. He took medication for it though (though I knew he hated the side effects of that, even), so for us, including him, we got a good chuckle out of it every once in a while. Really sweet guy. Even though he only blacked out on us a couple times, he didn't ever show this serious of symptoms. I feel extremely bad for this woman, because she seems obviously very frustrated when it occurs. Not having a 'normal' amount of control over your own body can drive you literally insane.

oritteroposays...

She's actually answered quite a lot of questions in the comments, and, in relation to a similar question, says:

It happens all the time, but it is worse if I am tired. And yes, my sleep quality is terrible.


She also said that the attack in the video was worse than normal, because she had been going for several hours without a break and was tired. I can't find that actual comment again to quote, since I watched the original video there have been hundreds more comments, and it's buried somewhere in there.

Daldainsaid:

I hope it doesn't happen very often for her, it looks frustrating and somewhat dangerous.

oritteroposays...

I would have thought the same, but despite hitting reddit, most of the comments are supportive (or curious) and there are only a few trolls.

Stormsingersaid:

That's one brave young lady, to put this out in public. The trollish crowd will be all over this, pathetic creeps that they are.

articiansays...

I think the comment you were looking for was at the end of the video. She mentions just that in some of her closing text.

It makes me happy that most comments toward her aren't trolling, because when she comments at the beginning (in text) about not wanting negative responses I cringed, knowing that asking for kindness and no cruelty on the internet is the warsong call for Trolls everywhere.

oritteroposaid:

She also said that the attack in the video was worse than normal, because she had been going for several hours without a break and was tired. I can't find that actual comment again to quote, since I watched the original video there have been hundreds more comments, and it's buried somewhere in there.

dannym3141says...

Well there's no other way i can think of to say this.. but it's a good job she's in good shape and a long way from ugly, otherwise i think the comments would be very different. It's funny how videos you think would get slaughtered are full of polite inquiry and condolences when there's a level of physical attraction involved...

articiansaid:

I think the comment you were looking for was at the end of the video. She mentions just that in some of her closing text.

It makes me happy that most comments toward her aren't trolling, because when she comments at the beginning (in text) about not wanting negative responses I cringed, knowing that asking for kindness and no cruelty on the internet is the warsong call for Trolls everywhere.

Asmosays...

I tend to agree, although you'd also expect to see a lot of "Ooh, if I found that sleeping I'd totally hit it" etc...

Strangely enough, I've seen serious posts/vids etc before dealt with incredibly well by random anons including obits for WoW players, or a community coming together like the building of a playground in EQ2 for a terminal child. We tend to remember the worst, but there's plenty of supportive people out there who's first instinct isn't to heap shit on a person.

I'm just thankful that I've been relatively healthy all my life. I can't imagine what it would be like to have this hanging over your head (or indeed, any one of a number of chronic conditions).

dannym3141said:

Well there's no other way i can think of to say this.. but it's a good job she's in good shape and a long way from ugly, otherwise i think the comments would be very different. It's funny how videos you think would get slaughtered are full of polite inquiry and condolences when there's a level of physical attraction involved...

lucybmartinez3says...

I also have narcolepsy, but without the cataplexy, for which I am most grateful! I also had blephorospasms, which is when my eyes close unexpectedly, without the sleep. It was quite frightening, as it happened a number of times while I was driving. I saw a neurologist soon after these symptoms began, and it has been controlled quite well, with Botox injections around the outer edges of my eyes. This is very different from the Botox which is used on wrinkles. Within a month or so, those disappeared, although my eyelids are often heavy and I find it more comfortable to keep them closed, whenever possible. The narcolepsy is still with me: I take a medication called Provigil, when certainly helps. But I have a hard time making myself go to bed, when I begin feeling sleepy. I often fall asleep at my desk top computer with my head falling on the keyboard, leaving the strangest comments, which I enjoy posting, much to people's confusion. I have also often fallen out of my chair, and been rudely awakened by the sudden stop. Fortunately, I never been seriously hurt, and that hasn't happened for many months. I'm an older woman of 79, with osteoporosis, but I haven't broken anything in these unexpected naps, as I call them. The young woman in the video, who is a dancer and making a teaching video, it seems, is a much worse situation that I, for which I am grateful. I have here seen this site before, and I hope I'm not intruding...just thought folks might like to hear another perspective.

lucky760says...

I'm sure I speak for everyone when I say, yes, everyone is absolutely interested in hearing more perspectives.

Thanks for taking the time to share. It really is very interesting to hear these first-hand details of what it is actually like living with narcolepsy.

I'm curious how early the signs of narcolepsy might present themselves. Do you recall the very first time your started exhibiting symptoms? Did your parents ever tell you about you having them as a baby or young child?

lucybmartinez3said:

I also have narcolepsy, but without the cataplexy, for which I am most grateful! I also had blephorospasms, which is when my eyes close unexpectedly, without the sleep. It was quite frightening, as it happened a number of times while I was driving. I saw a neurologist soon after these symptoms began, and it has been controlled quite well, with Botox injections around the outer edges of my eyes. This is very different from the Botox which is used on wrinkles. Within a month or so, those disappeared, although my eyelids are often heavy and I find it more comfortable to keep them closed, whenever possible. The narcolepsy is still with me: I take a medication called Provigil, when certainly helps. But I have a hard time making myself go to bed, when I begin feeling sleepy. I often fall asleep at my desk top computer with my head falling on the keyboard, leaving the strangest comments, which I enjoy posting, much to people's confusion. I have also often fallen out of my chair, and been rudely awakened by the sudden stop. Fortunately, I never been seriously hurt, and that hasn't happened for many months. I'm an older woman of 79, with osteoporosis, but I haven't broken anything in these unexpected naps, as I call them. The young woman in the video, who is a dancer and making a teaching video, it seems, is a much worse situation that I, for which I am grateful. I have here seen this site before, and I hope I'm not intruding...just thought folks might like to hear another perspective.

Asmosays...

That's the great thing about the internet, and a bit of the counterbalance to the rude assholes for whom anonymity is a license to abuse people. It's such an open forum and anyone is able to contribute to the conversation, often bringing knowledge, insight and perspective that as non sufferers, we are often ignorant of.

Welcome to the Sift btw!

lucybmartinez3said:

I also have narcolepsy, but without the cataplexy, for which I am most grateful! I also had blephorospasms, which is when my eyes close unexpectedly, without the sleep. It was quite frightening, as it happened a number of times while I was driving. I saw a neurologist soon after these symptoms began, and it has been controlled quite well, with Botox injections around the outer edges of my eyes. This is very different from the Botox which is used on wrinkles. Within a month or so, those disappeared, although my eyelids are often heavy and I find it more comfortable to keep them closed, whenever possible. The narcolepsy is still with me: I take a medication called Provigil, when certainly helps. But I have a hard time making myself go to bed, when I begin feeling sleepy. I often fall asleep at my desk top computer with my head falling on the keyboard, leaving the strangest comments, which I enjoy posting, much to people's confusion. I have also often fallen out of my chair, and been rudely awakened by the sudden stop. Fortunately, I never been seriously hurt, and that hasn't happened for many months. I'm an older woman of 79, with osteoporosis, but I haven't broken anything in these unexpected naps, as I call them. The young woman in the video, who is a dancer and making a teaching video, it seems, is a much worse situation that I, for which I am grateful. I have here seen this site before, and I hope I'm not intruding...just thought folks might like to hear another perspective.

kceaton1says...

I also have narcolepsy, but out of the different "versions" you can find, I think mine may be the easiest to handle (though it may depend on person to person). I do get tired, but strangely I also suffer from extreme chronic headaches, which are powerful enough to keep me awake (bad however, as taking naps are almost always out of the question).

My issues revolve around the fact that when I go to sleep I stay in REM, or phase 2 sleep, almost all night long. I will have very vivid dreams that occur all night long (usually I'll sleep for two hours, get woken up by the dream, rinse and repeat). With this comes the more terrible aspects. I have constant bouts of sleep paralysis every night, and on top of this I suffer from hypnagogic hallucinations like crazy (even when I "think" I'm fully awake).

Very rarely the narcolepsy causes sleeping fits, but it is rare. It may be possible that cataplexy is involved, but I doubt it--it simply happens to rarely (although it does mimic it fairly closely).

Anyway, hypnagogic hallucinations and sleep paralysis are NOT for everyone (as I had a hypnagogic hallucination so strong it felt like someone was yanking me through my bed, sound familiar?). This is where the origins of succubi, demons, angels, and aliens taking you away in the night come from. So, if you do not have a healthy intellect and open mind, you may just end up being, literally, scared of sleeping (unless you are on something akin to Xyrem).

My father has it as well, his symptoms are a little more classical, much like the poster above.

Paybacksays...

Welcome!

Ignore any trolls. We try not to feed them, but sometimes it's just too much fun.

ps. no, to everyone else, I was not intimating anyone was trolling right now, just a blanket statement.

lucybmartinez3said:

I have here seen this site before, and I hope I'm not intruding...just thought folks might like to hear another perspective.

Yogisays...

With all these disclaimers it's hard to know whether or not I'm allowed to laugh at this.

So just to be on the safe side, I'm gonna laugh my ass off.

Send this Article to a Friend



Separate multiple emails with a comma (,); limit 5 recipients






Your email has been sent successfully!

Manage this Video in Your Playlists




notify when someone comments
X

This website uses cookies.

This website uses cookies to improve user experience. By using this website you consent to all cookies in accordance with our Privacy Policy.

I agree
  
Learn More