Narcolepsy is weird but I didn't notice

There are certain kinds of experiences that most human beings know very little about because a) they are rare, b) they can only be felt from the "inside", i.e., by the people who have them, and c) not all of those people choose to, or are good at, writing about it.

I have had some rare experiences in my life and it is therefore incumbent on me to write about them. One of these is being Narcoleptic.

I've had Narcolepsy my whole life, but I wasn't diagnosed until well into my twenties. Part of the reason I never suspected it is because my presentation is a bit different from "TV narcolepsy" – i.e., people who just randomly fall asleep during the day. That is a real narcoleptic symptom (more or less), known as "excessive daytime sleepiness," or "sleep attacks" when they are abrupt and sudden. And although I'm often pretty sleepy in the middle of the day in a way that could be reasonably described as "excessive," I can't say I've been plagued with bouts of suddenly careening over and falling into a deep sleep.

What I have been plagued with is bouts of suddenly careening over and not falling into a deep sleep, but appearing asleep to all reasonable outside observers. Although the external symptoms are nearly identical, the key difference is that throughout the whole ordeal I remain fully 100% awake, just unable to move.

That particular symptom is called cataplexy, and it's my chief narcoleptic symptom. You lose control of your muscles, either in part of your body or in all of it, and then you can't move for a while. Your mouth and face require muscles to move, so if they're undergoing cataplexy you won't be able to use those either, which means you won't be able to deliver any spoken lines, such as: "please help me," or "could you scratch my nose?", or "ladies and gentlemen, please accept my apologies for spilling champagne on your dresses and tuxedos; furthermore please be assured that I am 1) not dead, 2) not experiencing a heart attack or stroke, and 3) will be perfectly fine in a few minutes. If it wouldn't inconvenience you too much, could you please fetch two strong men to remove me from the dance floor and gently place me on a couch so that this lovely wedding reception may commence undisturbed in the interim."

The solution, as any boy scout will tell you, is to be prepared. Everybody I know is fully briefed on my symptoms and knows what to do in the case of an event. This is mostly for other people's sakes rather than mine, as cataplexy isn't particularly dangerous by itself, unless it were to happen in the middle of a crosswalk or something. Those days are largely behind me anyways. Cataplexy isn't really a big issue for me day to day, thanks to the excellent medication I'm on.

What's really interesting to me, though, are the other minor symptoms commonly associated with Narcolepsy, that I've been dealing with my whole life but never realized weren't just normal things. It reminds me a bit about reading accounts of people with Anosmia who never realized they couldn't actually smell, or people who only realize late in life they're color-blind.

The first weird symptom is dreaming while I'm still awake. I mean that literally, not metaphorically – not just "day dreaming" in the sense of thinking vividly about stuff. I mean literally dreaming while I'm fully conscious and my eyes are wide open. The weirdest part about this is I didn't even notice I was routinely doing it until like, last year. For context, I'm forty years old.

The effect is pretty mild and the effect usually only happens when I'm in bed and drifting off towards sleep. A few minutes before I'm fully out, while I can still hear and see everything going on around me, I'll start to dream. The dream can be either vivid or fuzzy, but it plays out in just the same manner as when I'm asleep, just kind of superimposed upon my normal waking senses. I guess this is a combination of "I just thought this is how it was for everybody," as well as "I never stopped and paid attention to what was actually happening, and once I did I noticed how weird it was."

The other crazy thing that I didn't notice until recently is that I'm pretty sure that, unless I'm under anesthesia, whenever I'm asleep I always dream, and I start dreaming the instant I fall asleep. I don't always remember the dreams, but I almost always remember having them. This is another case where I figured this was normal, but apparently other people have to be asleep for some time before they will dream? Whereas I can be asleep for 15 minutes and wake up with the subjective dream experience of having been doing something for several hours.

And sure enough, a few years ago I read that Narcoleptics enter REM sleep almost immediately after falling asleep which definitely jives with my personal experience.

Going back to cataplexy, for most of my life, even after the diagnosis, I didn't have any great ways to really deal with it. Usually I just waited the episodes out.

This is difficult, because the subjective experience of cataplexy is baffling. It's not at all clear what's happening to you because it feels like nothing else. It's almost easier to explain what it doesn't feel like. Here, imagine three different reasons for not getting out of bed in the morning. Cataplexy is not quite like any of these, it's a weird fourth thing:

1. Paralysis
2. Fatigue
3. Depression

Actual paralysis is terrifying; I've only had sleep paralysis but that's bad enough. You can't move and you can't feel, and you are utterly helpless until it's over.

Fatigue means your body still obeys your commands, but your muscles are so tired that you just don't have the energy to move. We've all felt like this at some point; it's very different from total paralysis, but it's also not an issue of willpower. You're just pooped.

Finally, plenty of us know what it's like to be depressed. You could get out of bed, but you just don't feel like it. This can manifest in two ways. First, you're so sad you don't want to get out of bed so you simply don't. Second, you intellectually realize on some level that you should get out of bed, and even want to want to get out of bed, but you can't quite cash that in to an actual decision and kick the covers off.

Cataplexy is not like any of these. You're not paralyzed, you can feel all your limbs and it feels like they're all ready to obey you if you just give them the command. You're not fatigued, you're not tired at all, you've got plenty of juice. And you're not depressed – you want to move, and you're even sending all the right mental commands to do it, or at least it feels that way. But nothing's happening.

It's almost as if you lost the car keys to your arms, legs, and everything else. You know how to drive your body, you want to drive your body, your body has plenty of fuel, but it's totally unresponsive. Oh sure, go ahead and send all the brain signals you want – spin that steering wheel, pump those breaks, fiddle with that gear shift – but nothing's happening. Occasionally you might get little fits and starts – a leg bends or an arm flails around haphazardly, not unlike a car engine that chugs and chugs but won't quite turn over, but the episode continues and you still can't really move. This is what cataplexy feels like.

Again, I'm medicated now so my quality of life has massively improved. Today I have cataplectic attacks only rarely – a little less than ten a year (if that sounds like a lot, at the worst period in my life I was having multiple episodes a day).

How does a cataplectic attack end? Well, you can always wait them out and you'll eventually regain function. Exactly why has always been mysterious to me, but through trial and error I figured out some tricks. Being tickled seems to work, though having someone close by who is willing to tickle you in public seconds after it looks to everyone else like you just suddenly died of a heart attack takes a little bit of an established relationship. But I had never found something I could use on myself, I was always dependent on having someone else around me who knew what to do.

A couple years ago, however, I found a special trick on some random forum. This method is so unreasonably effective I can't believe it works, but it's never failed me yet. Whenever you are in the throws of a cataplectic attack, lying motionless and completely helpless, focus all your energy into "finding" the tip of your index finger (either one will do). Now, just try to wiggle it around in a small circle. Focus all your energy on just doing that and don't stop until you get it. Start with tiny circles, then make it wider and wider. Soon you'll be able to access the other fingers on that hand, and then the whole hand itself. The wrist and forearm will follow, then the whole arm, and soon you'll unlock the rest of your body.

What exactly is going on neurologically during this "rebooting" process? No idea, I just know it works.

Anyways, narcolepsy is weird, but for most of my life I never noticed it. Now I have, so I wrote some words about it. Have a great day.