What Narcolepsy Really Looks Like. Spoiler Alert- It Sucks.
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Channel: Sleepy Sarah Elizabeth
Views: 14,937,550
Rating: 4.92063 out of 5
Keywords: Narcolepsy (Disease Or Medical Condition), Cataplexy (Symptom), Dance (Interest), soran bushi, Japan (Country), Japanese (Ethnicity), sleep attack, micro sleep, Fisherman (Profession), Bleach (Musical Album), Bleach (Comic Book Series), Health (Industry), narcolepsy, it sucks, sleepy sarah elizabeth, epilepsy, spoiler alert, narcoleptic people, cataplexy, reality, real narcolepy
Id: 1PuvXpv0yDM
Channel Id: undefined
Length: 4min 45sec (285 seconds)
Published: Mon Jul 07 2014
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What is 'memory bobble'?
How severe of a case is this? My fiancé has lots of moments she calls spacing out that look a lot like this woman's micro-sleeping
I think most times I have ever seen narcolepsy mentioned in movies or on TV it is usually in a funny way, like wouldn't it be humorous to see someone just fall asleep right in the middle of eating their soup or whatever.
There is nothing funny about this video though. The sheer amount of effort and frustration she deals with to complete the simplest of tasks makes my heart go out to this poor girl. Makes a person realize how much they take for granted.
I have narcolepsy as well, albeit not even close to being as severe as this girl's case. I received my diagnosis about ten years ago, while I was in the Navy (which incidentally ended my stint in the military). It is one hell of a weird neurological condition. I do not, however, have cataplexy.
What I do have are mild sleep attacks, where I become sluggish and my limbs become heavy. I also lose a degree of feeling all over my body. Imagine that uncomfortable "pins and needles" feeling you get from your foot "falling asleep." Now, imagine that feeling all over your goddamn body, and you can imagine what fighting a sleep attack is like for me. The weirdest part is always my nose--it goes numb, yet it feels like I have a bunch of dried up boogers in there. If I fight the attack, it goes away after about an hour. If I don't, I'll doze. If it's bad enough and I fall asleep, I'll be out for four or so hours. I suspect it's because my brain is trying to shut down its sensory and motor cortices in anticipation of sleep. Regardless, it is annoying.
I also have hypnagogic hallucinations, or "waking dreams." Well, sort of. The narcoleptic brain is chemically unbalanced (as I understand it), as if in a state of constant sleep deprivation. So, when I go to sleep, I go directly into a REM state, and if something is going on around me, such as a television show or people talking, it infiltrates my dreams. Other narcoleptics have these hallucinations while fully awake.
When I was in college, I fell asleep in a botany class. The professor was talking about archaea, and I began dreaming that I was smashing football-sized proto-bacteria with a sledgehammer. I could still hear her talking during the dream. I used to joke that I would never need hallucinogenics thanks to narcolepsy.
Another symptom in narcolepsy is sleep paralysis. Imagine that you wake up in the middle of the night, and you can't move. My father has that. He described it as "icy hand of death." It scared the ever-living shit out of him when he experienced it for the first time. Thankfully, I don't have this symptom, either.
So, you may ask, how do you know if you have narcolepsy? Tests. I went through a neurological sleep test and a multiple sleep latency test. The former is an overnight test where you are hooked up to various machines via electrodes and devices to monitor your brainwaves, heart rate, breathing, etc. The latter is where you take multiple naps during the day while hooked up via electrodes to machine that measures your brain waves. If you dream immediately in more than two of the four twenty-minute nap sessions, it's an indicator. Also, you can get a spinal tap, so your spinal fluid can be tested for a lack of a specific neurochemical peptide (I opted not to undergo that particular test).
The results were straightforward. It's not pulmonary (like sleep apnea). I sleep with an efficiency somewhere on the order of 95% efficiency (my neurologist mentioned that most people sleep at around 87% efficiency, which means you are asleep 87% of the time you are in bed). I also fall asleep twice as fast as a normal person (~3.5 minutes versus ~7, according to this doctor), and where REM sleep should normally occur between 45 and 90 minutes (after cycling to Stage 4 sleep and back), I go into REM immediately upon falling asleep.
Overall, my narcolepsy is very mild. I used to take Modafinil to treat it, but I don't really need to. I mostly just feel like I haven't slept enough. While I was on 300 mg of the drug, I felt like I was at 100% for ten hours a day, and then I would get rather drowsy. Without the drug, I would say I'm at 85% all day long. And yes, I can drive without issue. It's tolerable, and I definitely don't use it as an excuse to sleep at my desk at work.
The only thing that really bothers me is that I haven't had what has felt like a good night's sleep in ten goddamn years...
TLDR: Narcolepsy is weird and annoying.
That bleach music.
I don't see how a person could live life normally with narcolepsy this extreme and I feel like you could easily get hurt by falling asleep while doing everyday task.
Hey! That's me! I mean...., but not actually me. I do have narcolepsy though. It was painful to relate to what she was going through.
She has remarkable composure for dealing with something like that. It must be terrifying for your brain to revolt against you like that.
Thanks for posting this. I had no idea what cataplexy was nor that it is common condition for those suffering from narcolepsy. It seems extremely frustrating and scary to suddenly be unable to control your body or even remain conscious. Furthermore, I'm really sorry that the media typically portray those with narcolepsy in a goofy, slapstick comedic light; this clip demonstrated well how difficult it can be to live a life normally while with these conditions.
TL/DR: Good post. Learned about something I misunderstood.