Narcolepsy was weird but I didn’t notice it

There are certain types of experiences that most people know very little about because a) they are unique, b) they can only be felt from “inside”, ie, by the people who have them, and c) they are not all chosen by people, or well, write about it.

I have had some amazing experiences in my life and so I had to write about them. One of them is Narcoleptic.

I’ve had Narcolepsy all my life, but wasn’t diagnosed until I was in my twenties. Part of the reason I never suspected it was because my presentation was a little different from “TV narcolepsy” – ie, people who randomly fall asleep during the day. that is the a real narcoleptic symptom (more or less), known as “excessive daytime sleepiness,” or “sleep attacks” if they are sudden and sudden. And although I am often sleepy in the middle of the day in a way that can reasonably be described as “excessive,” I cannot say that I am plagued by attacks of sudden care and falling into deep sleep.

what am i THERE which was struck by the bouts of sudden careening over the and not fell into a deep sleep, but SHOWS asleep to all reasonable outside observers. Although the outward symptoms were almost the same, the key difference was that throughout the ordeal I remained completely 100% awake, unable to move at all.

That particular symptom is called cataplexyand this is my primary narcoleptic symptom. You lose control of your muscles, either part of your body or all of them, and then you can’t move for a while. Your mouth and face need muscles to work, so if they are going through cataplexy you can’t use those, which means you can’t give any spoken lines, like: “please help me,” or “can you scratch my nose?”, or “ladies and gentlemen, please accept my apologies for spilling champagne on your dresses and tuxedos; furthermore please make sure that I 1) not dead, 2) not having a heart attack or stroke, and 3) will be fine in a few minutes if it doesn’t bother you too much, can you please get two strong men to pick me up from the floor of dance and gently put on a. sofa so that this beautiful wedding party can begin undisturbed for a while.”

The solution, as any boy scout will tell you, is to be prepared. Everyone I know is fully informed of my symptoms and knows what to do in the event of an incident. It’s mostly for other people’s benefit than mine, because cataplexy isn’t very dangerous in itself, unless it happens in the middle of a crosswalk or something. Those days are largely behind me however. Cataplexy isn’t really a big issue for me day to day, thanks to the excellent medication I’m on.

What really interests me, however, are the other minor symptoms that are often associated with Narcolepsy, which I’ve dealt with all my life but didn’t realize were not just normal things. This reminds me a bit about reading accounts of people who have Anosmia who never realize they can’t really smell, or people who only realize late in life that they are color-blind.

The first strange symptom is dreaming while I’m still awake. I mean that literally, not metaphorically – not just “daydreaming” in the sense of thinking clearly about things. I mean literally dreaming while I was fully conscious and my eyes were open. The weirdest part about this is that I didn’t realize I was doing it all the time until last year. For context, I am forty years old.

The effect is pretty mild and the effect usually only happens when I’m in bed and drifting off to sleep. A few minutes before I am completely outside, while I can still hear and see everything that is happening around me, I start to dream. The dream can be vivid or bad, but it plays out in the same way as when I’m asleep, kind of superimposed on my normal waking feelings. I think it’s a combination of “I just thought it was for everyone,” as well as “I never stopped and paid attention to what was really going on, and when I did I noticed how strange it was.” “

Another crazy thing I didn’t notice until recently is that I’m pretty sure that, unless I’m under anesthesia, every time I’m asleep. EVER dreaming, and I started dreaming as soon as I fell asleep. I don’t always remember dreams, but I almost always remember having them. This is another case where I thought it was normal, but apparently some people need to sleep for some time before they dream? While I can fall asleep for 15 minutes and wake up with the subjective dream experience of doing something for 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 good ways to deal with it. Mostly I just wait for episodes.

This is difficult, because the subjective experience of cataplexy is confusing. It’s never clear what’s going on with you because you feel like no one else does. It’s easier to explain what it is not it seems. Here, consider three different reasons for not getting out of bed in the morning. Cataplexy is not like any of these, it is a strange fourth thing:

1. PARALYSIS
2. tiredness
3. Depression

actually PARALYSIS scary; I’m just there sleep paralysis but that’s not good. You can’t move and you can’t feel, and you can’t do anything until it’s over.

tiredness means that your body is still following your commands, but your muscles are so tired that you don’t have the energy to move. We’ve all felt this way at some point; it is very different from total paralysis, but it is not an issue of willpower either. You’re just bored.

In the end, many of us know what it is depressed. you CAN get out of bed, but you don’t like it. This can be seen in two ways. First, it’s so sad that you’re gone want to get out of bed so that you are simple do not. Second, you intellectually realize at some level that you have to get out of bed, and even want want to get out of bed, but you can’t pay for that with an actual decision and kick the covers.

Cataplexy is not like any of these. You are not paralyzed, you can feel all your limbs and they all seem ready to obey you when you give them the command. You are not tired, you are not tired, you have a lot of juice. And you’re not depressed – you want to act, and you’re sending all the right mental commands to do it, or at least it feels that way. But nothing happened.

It’s like you lost the car keys in your arms, legs, etc. You know how to drive your body, you want to drive your body, your body has a lot of fuel, but it has absolutely no response. Oh sure, go ahead and send all the brain signals you want – turn that steering wheel, pump the brakes, fiddle with the gear shift – but nothing happens. Sometimes you can get a little fit and start – a leg turns or an arm goes limp, not unlike a car engine that sputters and sputters but doesn’t turn much, but the episode continues and you still can’t move. it is what cataplexy feels like.

Again, I am now on treatment so my quality of life has improved greatly. Now I have cataplectic attacks very rarely – less than ten a year (if that many, in the worst period of my life I had several episodes of DAY).

How does a cataplectic attack end? Well, you can always wait for them and eventually you will get the function back. Exactly why has always been a mystery to me, but through trial and error I’ve learned a few tricks. Being tickled seems to work, although having someone close to you who is willing to tickle you in public seconds after it looks to everyone like you suddenly died of a heart attack requires a little built-in. relationship. But I have never found anything that I can use myself, I always rely on someone else around me who knows what to do.

A few years ago, however, I found a special trick on some random forum. This method is so ridiculously effective I can’t believe it works, but it has never failed me. Whenever you are in the throes of a cataplectic attack, lying motionless and completely helpless, focus all your energy on “finding” the tip of your index finger (any one will do ). Now, just try to wiggle it in a little circle. Focus all your energy on doing just that and don’t stop until you get it. Start with small circles, then make them wider and wider. Soon you will be able to access the other fingers of that hand, and then the whole hand itself. The wrist and forearm will follow, then the whole arm, and soon you’ll be opening up the rest of your body.

What exactly happens neurologically during the “reboot” process? No idea, I knew it would work.

However, narcolepsy is rare, but for most of my life I didn’t notice it. Now I have, so I wrote a few words about it. Good day.