So tell me about what it actually is like?

Also, what do you mean people don't take it seriously..? Can't it be kind of dangerous. i.e. can you drive cars?

Narcolepsy is often used as one of those "joke conditions" in a lot of comedies.

Mr. Bean's character in "Rat Race" comes to mind. Vertigo and IBS are similar; they really suck if you have them, but they're often used as the socially acceptable "funny" conditions.

Narcolepsy? IBS? Vertigo?

Are you trying to ask a question?

ah, yes I suppose that's right abge.

What are some of the practical drawbacks of the condition? For instance, can you actually drive cars?

Yes, what are the conditions that I previously listed with question marks after them?

"Narcolepsy? IBS? Vertigo?"

In no particular order:

Cronic abdominal pain or discomfort; a sleep disorder characterised by excessive sleepiness and a spinning sensation experienced when not actually spinning, commonly confused with a fear of heights.

Look them up to find out which way round they go.

Lucille 2 in arrested development is a pretty good portrayal of vertigo

While often shown in comedies, narcolepsy can be no laughing matter... especially if the person isn't taking care of themselves.

Narcolepsy can be described as falling asleep suddenly and "without warning". Could you imagine driving on the road and falling asleep or being next to a driver who suddenly lost control of their vehicle? Or, any form of heavy machinery?

Although it seems through medication and being self-aware of your own sleep-tendencies narcolepsy is something can and do live with.

@Thucy
Everyone's narcolepsy is different, but I can try to explain how mine "works." I spent the better part of four months this year up in Maryland to have doctors finally make sense of it for me and this is what I understand of it.

I don't get anywhere near the normal amount of stage 4 and 5 sleep. Stage 4 is the deep, delta wave recovery sleep that lets you feel refreshed in the morning (essentially recharging your body) and stage 5 is of course REM sleep (essentially recharging your mind). Memory transitions and all other sorts of important things happen in REM sleep, dreaming too, and it's about 15-20% of your sleep cycles.

So when you sleep for 8 hours, 20 minutes, you'll go through about 5 full sleep cycles. That's just under an hour's worth of stage 4 and 5 usually. (Don't quote me on this stuff.)

When I sleep for 8 hours, 20 minutes, I go through about the same amount of sleep cycles (usually a little shorter), except I get maybe 10 minutes worth of stage 4 and my stage 5 sleep isn't really stage 5. Right when I should hit stage 4, I have a seizure (not the shaking kind) and my brain goes straight to REM sleep, except it's like an HDD with the write head removed. I'm spinning, but no dreams are being had and hardly any long-term memories are recorded. My brain essentially cooks instead of cools.

Now, since I wake up with both my body and mind feeling as if I pulled an all-nighter, I look and feel like I did. When I doze off, my body will throw itself into REM sleep almost immediately, but I'll be so easily wake able that a professor changing slides or the falling sensation of my chin hitting my chest will wake me. This is pure torture. A 50 minute lecture can be close to 100 microsleeps. Like revving an engine with the clutch pushed in and then letting it go to grind the gears and stall. Eventually, against my own will, my brain and body will just shut down and I'll fall asleep wherever I am and be almost impossible to wake up. This can happen standing, driving, even once during sex.

But I'm STILL not getting rest. Certainly not making up for what a normal person needs. So after 5-6 days, I'll crash. My body will just fall asleep and stay that way for over a day sometimes. I'll sleep for 24, 36 hours and wake up finally feeling like I had a good night's rest.

Cataplexy appears in less cases of narcolepsy, but its the one everyone remembers. What it is strong sudden emotion, like anger, joy, or fear, can cause a person with narcolepsy to basically faint and have microsleeps. For me its mostly being startled. Horror films or someone jumping out of a closet can mean me hitting the floor instantly. It's kind of embarrassing.

But also really bad for my heart. Since narcolepsy goes wildly undiagnosed through childhood (mine started at 13 and I didn't see a doctor about it until uni), that many years of sleep deprivation and stimulant abuse (I was popping caffeine and amphetamine multiple times a day and still slept THROUGH grade school) can cause pretty bad cardiovascular development problems. I developed a mildly serious heart arrhythmia and until recently, through better exercise and diet, was sleeping with an insanely annoying heart monitor. I still can't really have stimulants in the morning, they don't work except to get my heart in a funk and really make me sick, but also since my catapletic events are being treated (to keep me awake), now what happens is intense chest pain. Like being stabbed with an icicle and having to wait until it melts. It's still less dangerous than passing out, but its definitely not fun.

The treatment I've been going through is called Sodium Oxybate, which among other things, produces GHB in the system fairly rapidly. One dose affords me 4 hours of "near-normal" sleep cycles, so I wake up four hours later and take another. It takes some getting used to, but now I don't even need an alarm clock, I just wake up every 4 hours. The drug is super easy to abuse and if I've eaten or god-forbid had anything to drink close enough to going to sleep, I'll get extremely loopy/retarded and sick to my stomach. Other than that, sometimes I'll wake up and have INSANE hallucinations. I'll wake up into my dream, know I'm awake, but still have to dream. I'll also not be able to move, sometimes complete paralysis for 10-15 minutes.

It's been almost half a year since I started and the results as far as school/work/social go are tremendous. I actually have a memory and concentration, can drive a car (though I still hate to), and generally lead a normal existence. Ten years of narcolepsy can lead to some other pretty fucked up neurological effects like depression, so being able to finally pinpoint and tackle those sorts of things really helps too.

I've only ever really told my family and a few friends, but lately I've been super curious to see how my story relates to others dealing with the issue, so I thought I'd ask here.

Interesting stuff Geofram. Thanks for sharing. I knew almost nothing about Narcolepsy, so this was probably a good thing for me to read before I make an ass out of myself somewhere down the road.

As far as conditions that are not taken as seriously as they should (already mentioned Narcolepsy, vertigo and IBS), I think OCD falls in the same group. Its certainly not as serious as narcolepsy for instance, but it is a serious disorder that people struggle mightily with every day. And most don't understand it thanks to stupid shows like Monk that mock the disorder...

Yeah, OCD might not be "dangerous" but it's certainly life crippling. I've never met anyone with the disorder, but I can't imagine having your whole day-to-day life controlled like that. =(

I have IBS actually, not sure how that got brought up but voila.

I'm sorry to hear about all of that Geofram. I'm glad to hear that you are able to get treatment, but I'm really sorry to hear about the sleep paralysis. The times that has happened to me have all been the most terrifying experiences of my life.

Sucks when you wake up, the grim fucking reaper is standing the corner of your room, and you can't move. For a kid of 15 who was not yet agnostic, I thought that shit was real - I was convinced I was going to die. I hope that sort of thing doesn't happen to you too often. Good luck.

@Thucy, IBS is irritable bowel syndrome and not something else right? Not sure how that relates to narcolepsy.
@Geo, I am glad the treatment is working out for you. Hard to imagine what's it like to go through 10 years of that.

@ Geofram OCD is bad. I have a minor form and it is still pretty bad. I have more compulsions myself, for example I cannot stand bumping things; I have to tap them back. And more. I would hate to have a more serious form of OCD that would be awful. Good luck with your narcolepsy treatment.

OCD can be very dangerous. Some of the sever forms can make it so that you hurt yourself and others as the compulsive part of it.

"I dunno why I've never asked this before, but I just realised I've never met anyone else with Narcolepsy and am suddenly curious."

I saw a documentary sometime back about some English sufferers of the condition who travel to America for a conference for sufferers. For many of them it was the first time they had ever met anyone else who had the condition. Many of them found it really helpful to meet other people going through the same thing.
I am led to believe it is very rare, so I think it would be quite lonely, not knowing people who really understand what it is like. Geofram, have you thought about getting in touch with other sufferers?

Yes its irritable bowel syndrome. I don't know how it relates either, someone else brought it up.. I think it was you zultar..?

@spyman, I haven't, there are several online forums dedicated to it and other sleep issues, but I've not joined them.

Maybe you should. What is there to lose by giving it a shot?

Heh. I suppose I pride myself on how few footprints I've left on the internet is all.

As long as we're talking diagnosed neurological and psychological traits, here's a slightly related link. It's about the psychology of dictators. http://blogs.scientificamerican.com/thoughtful-animal/2011/12/19/the-psychology-of-dictatorship-kim-jong-il/

I think some of the higher scorers on this site might fit the profile. ;-) Just kidding. But not really. YES, I'm kidding. No you're not. Wait, who is this??