Narcolepsy 101

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all illustrations in this post belong to Eleanor Wales – check her stuff out!

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Let me be straight with you:

There are about a million different resources online dedicated to explaining narcolepsy, but none of them make sense to the average bear (i.e., me and you. We are the bears in this scenario). Don’t get me wrong, they’re all very informative, but narcolepsy is so weird and complicated that all these “Narcolepsy 101” resources end up being overly scientific and super boring for anyone who isn’t a brain-loving nerd. (No disrespect to my nerd friends who love brains).

So, I have written my own “Narcolepsy 101” page, skipping all that boring science crap about chemicals and explaining narcolepsy in a way that is (hopefully) easy to wrap your head around and more or less true.

It’s worth mentioning that the following is all based on my personal experience with narcolepsy — other people with narcolepsy may experience their symptoms differently, or may prefer a different way of explaining what’s going on. This is just the way that works for me, so no haters, please.

Without further ado…

What is narcolepsy?

First, here is what narcolepsy is not: It is NOT that thing where you randomly fall asleep while doing stuff, like in the middle of a conversation or whatever. It’s NOT. That DOESN’T HAPPEN.  I am writing in all caps here because some people get really stuck on this point. I know it’s very confusing, because this is how ‘narcolepsy’ appears in the movies, but I’m sorry, Hollywood lied to you. NARCOLEPSY IS NOT WHEN YOU RANDOMLY FALL ASLEEP. OKAY? ERASE THIS IDEA FROM YOUR BRAIN PERMANENTLY.

Done? Good!

(As a side note, some people think narcolepsy is when you are romantically attracted to dead bodies, which is 1) disgusting and 2) actually called necrophilia, and that is a totally different issue, so please don’t ever get these two things confused for the love of God!!!)

ed99f52a82e8b8d7a2895ce53825f3caAsleep or dead? It’s a mystery!

Okay, so what is narcolepsy?

Narcolepsy is actually a neurological disorder, meaning that it’s caused by a physical defect in the brain — it’s not a mental illness. People with narcolepsy are missing the part of their brain that regulates sleep-wake cycles (this is the part of the explanation where people usually begin to say big science words like ‘orexin-producing neurons’ and ‘hypothalamus’, which is so boring that you would probably get narcolepsy just by reading about it).

You are probably thinking, “This sounds pretty chill, sometimes I sleep too much too, maybe I have narcolepsy LOL”. Sadly, you are ignorant, and I say that without judgement because I was once ignorant too.

Missing a part of your brain is actually a huge deal: without this section of your brain, you can’t get deep, refreshing sleep — instead, you have way too much dream sleep, and the lines between being awake and dreaming become blurred. Without the part of the brain that regulates sleep and wakefulness, your body has to make educated guesses regarding the question, “Are we awake or dreaming right now?” Unfortunately, your body is an idiot, and most of the time it guesses wrong, incorrectly assuming that you are dreaming, or that you should be dreaming.

As a result, even when you are awake, your body tries force you into dream sleep.

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The orange bits are dream sleep. As you can see, narcolepsy makes your dream sleep super frequent and super whack.

There are two kinds of narcolepsy, type 1 and type 2. Having narcolepsy type 1 means that your immune system has mistakenly destroyed all or most of the part of your brain that controls sleep-wake cycles, similar to the way that type 1 diabetes means that your immune system has destroyed the part of your pancreas that produces insulin. People with narcolepsy type 1 also have cataplexy, which I’ll discuss in a minute. Having narcolepsy type 2 means that this part of your brain is minimally or not at all damaged, but the symptoms of narcolepsy are still present (EXCEPT cataplexy), maybe from a traumatic head injury or something.

I have narcolepsy type 1, but regardless of the type of narcolepsy that you have, the damage is still considered to be lifelong and irreversible.

That’s the basic gist of narcolepsy, so if you’re bored of reading about weird illnesses, feel free to stop here. You know more than enough and can now consider yourself educated! Good job!

For the rest of you, I’m gonna describe how constantly being on the verge of dreaming really screws up a person’s life.

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Symptoms of Narcolepsy

So, here are the 3 ‘dream intrusions’ that narcoleptic brain forces onto a person with narcolepsy (fellow narcoleptic friends: chill, yes I know there are technically 4 ‘hallmarks of narcolepsy’, but I’m counting sleep paralysis as part of cataplexy because it’s literally the same thing, and I feel qualified to make that claim despite my total lack of medical training):

1. People with narcolepsy hallucinate — usually visual, auditory and tactile hallucinations, and usually while falling asleep or waking up, although I personally experience hallucinations throughout the day, especially when I’m tired. These hallucinations can be super chill, like hearing my best friend call my name over and over or a radio playing classical music — or they can be extremely terrifying, like watching somebody with a knife pin me down and feeling them cut me open. Unlike with schizophrenia, I am generally aware that what I am perceiving is not real and that I am literally dreaming while awake.

2. Additionally, when people with narcolepsy experience sudden, intense, or unexpected physical or emotional changes, their body goes, “Oh shoot, this is a dream!” and paralyzes their muscles, making them go limp — the same mechanism that prevents people from moving during actual, I-am-in-bed-and-sleeping dreams. This weird limp-paralysis is called cataplexy, and it’s not dangerous or harmful, just highly likely to disturb onlookers. Worst-case, this makes you look like a puppet whose strings are cut — you collapse, unable to move or talk, but able to hear and think — unlike with fainting, sleeping, or a seizure,  when you have a cataplexy attack, you are conscious. In partial cases of cataplexy, only your hands might go limp, or your knees might buckle, or you might be unable to hold your head up or talk because your jaw is completely slack. In extremely mild cases, you might feel generally weak or ‘tingly’.  Cataplexy usually lasts only a few seconds, and rarely more than a minute, but the frequency and severity of cataplexy varies from person to person. Also, cataplexy is only found in people with narcolepsy type 1, so the presence of cataplexy alone is enough for a diagnosis of narcolepsy. If you have cataplexy attacks, you have narcolepsy, period.

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This is what cataplexy looks like — a puppet with its strings cut.

3. People with narcolepsy also feel extremely tired during the day, because their body is trying to force them into dream sleep, and because they are incapable of getting restful, restorative sleep at night. But no big, right? You feel tired too sometimes, and you don’t whine about it (much)!

Let’s do a comparison to make it more real: Imagine that you pull an all-nighter. The next day, you’re pretty darn tired, and you can’t wait to take a nap, but you’re still more or less getting stuff done, kinda. Not so bad, right? Pretty doable?

Ever pulled two all-nighters in a row?

What about three?

If you have, in fact, stayed awake for 72 consecutive hours, then congratulations, you’ve experienced ‘narcolepsy tired’. Once.

It is not a ‘gee, I shouldn’t have stayed out so late’ feeling. It is an ‘I am going to vomit and I can’t see because my brain can’t make my eyes work’ feeling. It sucks.

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(3.5 Bonus Symptom: This isn’t technically one of the ‘hallmarks of narcolepsy’, but I think it’s worth mentioning. The extreme tiredness that I mentioned above often becomes overwhelming and uncontrollable — the only way to make it stop is to go to sleep. As such, this kind of tiredness is often referred to as a ‘sleep attack’, because it forces your brain into sleep, whether you realize it or not. When people with narcolepsy have a ‘sleep attack’, they don’t fall face first into a bowl of soup or anything obvious like that — that kind of sudden loss of control only happens with cataplexy, and like I mentioned earlier, during cataplexy attacks you remain fully conscious, despite appearing to sleep.

Instead, during a sleep attack, if a narcoleptic can’t lie down to take a nap, they will micro-sleep: that is, parts of their brain will shut down involuntarily, generally for no more than a second or two, but the person will still appear to be fully conscious. Basically, the brain is trying to get dream sleep while forcing the body to continue whatever activity it is currently doing — such as writing, or talking, or putting the dishes away.

Unfortunately, as we’ve discussed before, your body is an idiot, and can’t do anything well without your brain’s input. As a result, your writing might devolve into an incoherent scribble about snakes, or you might trail off in the middle of a sentence, or put the forks in a cup and then hide the cup so well that your awake self can’t find it (true story). This impaired, body-without-brain activity is called automatic behavior.

I can’t speak for the general narcoleptic population here, but after ‘waking up’ from a micro-sleep, I usually feel extremely disoriented, and have no memory of the seconds during which I was micro-sleeping. It’s a weird feeling to suddenly find yourself in the middle of a conversation, listening to the other person speak but having no idea what they’ve last said or how you’re supposed to respond. Even weirder is ‘waking up’ to find words coming out of your own mouth automatically.

On the bright side, after micro-sleeping, people with narcolepsy usually feel a little bit less tired, which is a plus, I guess?)

Diagnosing Narcolepsy

Oh my gosh, this part is so boring I don’t even want to write about it. Basically, first your doctor has to rule out other causes of tiredness, such as depression, anemia and whatever, so you have to get lots of blood work and stuff done. Then, if they’ve ruled out everything but a sleep disorder (this can take a long time! Don’t let the doctors tell you that you’re just depressed!), you get sent to a sleep doctor, and then to a sleep study, where they monitor your sleep overnight and then make you take naps during the day while hooked up to machines that measure your brain activity.  If you slip into dream sleep enough times during the study, and slip into it too quickly, then ta-da, you’ve got narcolepsy! That was easy! (Jk, this process is not easy at all. It usually takes at least 10 years after the onset of symptoms to get a diagnosis of narcolepsy.)

Treating Narcolepsy

Repeat after me: Gluten-free diets cannot cure narcolepsy. A positive attitude cannot cure narcolepsy. Getting more/better sleep cannot cure narcolepsy. As a matter of fact, narcolepsy cannot be cured. Lifelong and irreversible damage, remember?

Currently, it is only possible to treat the symptoms of narcolepsy — nothing can help the underlying loss of neurons. Symptoms are treated using medication — some meds to keep your body awake during the day, some to minimize cataplexy, and some to force your body asleep at night — and certain lifestyle changes (i.e., taking naps at the times of day when you are most likely to have a sleep attack). With the right medications, people with narcolepsy can feel pretty okay, but there is no way for someone with narcolepsy to feel 100% like a normal person all the time. Dream sleep is always lurking right around the corner, waiting for the meds to wear off.

Gee, that’s a cheerful way to end this post.

Well, there you have it! Everything you’ve ever wanted to know about narcolepsy, packed into one fun little blog post, and without the big words! Now you are fully educated and ready to take on the world!

If you are feeling exceptionally geeky today, here are a few higher-quality resources which explain narcolepsy in a better (ie, more science-y) way

http://www.falling-asleep.com/ — My personal favorite narcolepsy info website. The creator, Elle Wales, also made all the graphics that I used in this post — she is so talented, and her website makes the science side of narcolepsy easy to understand!

http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm — Narcolepsy according to the National Institute of Neurological Disorders and Stroke. This is a good website for brain-loving nerds.

http://julieflygare.com/ — I would be remiss if I didn’t mention Julie Flygare, première narcolepsy blogger and advocate. Her personal posts are peppy and optimistic, and she has organized several excellent awareness campaigns.

http://www.claireccrisp.com/ — Claire Crisp’s daughter developed narcolepsy at a young age after receiving the swine flu vaccination. Her blog is a great resource for parents who have children with narcolepsy!

http://ofdancinganddreaming.tumblr.com/ — Beautifully written personal blog about living with narcolepsy.

http://narcolepsytransforms.blogspot.com/ — Another beautifully written and painfully honest blog about life with narcolepsy.

https://en.wikipedia.org/wiki/Narcolepsy — Don’t listen to what other people say, Wikipedia is totally a reliable source.

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6 thoughts on “Narcolepsy 101

  1. Matt says:

    Hi elaine, great blog and thanks for the explanation. I’m on the diagnosis journey and having a sleep problem has destroyed my life. I’m in my mid 50s and have developed my own ways to manage things, but when the only available stimulants are caffeine and sugar, that creates its own problem. I have been confused over exactly what narcolepsy is – the sudden falling asleep is definitely not me – but this, and your other blogs have been really useful. The hardest part has been to get people to take me seriously whilst my life disappears, and it now looks like i’ve a parallel neurological condition too. oh the joy!

    Like

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