Do you have a fear of drowning when eating soup?
No, but I typically wear water wings just in case anything goes wrong.
How many times have you woken up with your face on a keyboard?
I can only really recall one or two times where I’ve legitimately fallen asleep on my keyboard (And even then, I more or less let it happen, I’m really lazy). Now, falling asleep while leaning back in my computer chair? That’s another story, I’ve done that countless times.
How long do you usually blackout for, what is the experience like?
The time depends. It’s typically like a short nap or I might just transfer into my night of sleep if it happens late enough (Such as during a movie in the later evening). It kind of comes out of nowhere, although it isn’t a sudden black out.
It’s hard to explain how it exactly happens (For one, because I’m super fucking sleepy when it does), but think of that kid in your class who keeps falling asleep and his head is bobbing. I desperately try to stay awake, but if I don’t actively get up and move around, I don’t stand a chance, I will fall asleep. Because of how sudden the onset of extreme sleepiness is, more often than not I will succumb to it at least for a bit.
Have you ever had any scares or been seriously endangered because of your narcolepsy?
I’ve never really managed to hurt myself. Although narcolepsy is portrayed in the media as a sudden blackout, this is not really the case. It’s more of a sudden onset of extreme sleepiness that can really only be fought through physical movement.
That being said, I’ve had my fair share of embarrassing moments. I’ve fallen asleep in movie theaters, a Subway, during kissy time, at work, and in class countless numbers of times (I’m the kid who does that hilarious head-bobbing thing in class when trying to fight the sleep onset).
Have had a couple scares on the road with dozing off, fortunately nothing bad happened.
Most recently I can recall a time where I was driving home from school to my parents house. They live a good 90 minutes away and almost the entirety of that drive is freeway driving so there isn’t a whole lot to it. I started dozing off and, almost immediately, came to and found myself in the middle of the two-lane highway. Fortunately the nearest car was about a quarter mile behind me. I made sure to turn on my blinker and switch lanes to play it all cool.
The good news is, since I’ve been taking the medicine, nothing like this has even come close to happening.
What was your most awkward blackout?
Typically speaking, I don’t “blackout” per say. Media and pop culture have done a nice job of exaggerating the effect of Narcolepsy in that, I don’t just suddenly drop to the floor asleep.
It’s more like an uncontrollable urge to sleep. For instance, falling asleep in class. I don’t really willingly go to sleep, I just don’t have much of a choice because I get so damn sleepy. I’m that kid in your class that always does the head-nod.
That being said, I fell asleep once while making out with a girl after a party. Not really sure what she ended up doing.
Before treatment, how often did you fall victim to your narcolepsy? Did you fall asleep multiple times a day?
I would usually have a bout once or twice per day. Typically once or twice during the school day and then once I got home a nap was almost inevitable.
What prompted you to get a diagnosis?
I went in to get checked out because I suspected I had some sort of sleep disorder – my first inclination was actually sleep apnea. I often had very fragmented sleep and even when I slept well through the night, I always had issues staying awake and focused. It was such a battle to stay awake, it didn’t really seem right.
What was the diagnosis like?
I met once with my doctor and discussed the symptoms I was having. My regular doctor happens to be a sleep specialist so fortunately it only took about 15 minutes for him to realize that I should get a sleep study. After the sleep study, he diagnosed me with narcolepsy.
What did he prescribe you?
My doctor prescribed me NuVigil (which is essentially identical to ProVigil if you’re familiar). It’s not an amphetamine but it’s actually classified as a “Stimulant-like” drug. I’m not entirely sure what that is supposed to mean, but it keeps me up and is in my system for roughly 12 hours.
Funny side note, when I first was prescribed the medication I was taking it too late in the day so it’d still be in my system at like 2-3AM. For about a week I slept for maybe three hours a night. Most productive week of my life.
I generally try to take it at about 7:30AM (Class at 8:00AM, fuck me) and I’ll generally notice it beginning to wear off in the later afternoon and by 7:00PM or so I don’t really notice it anymore. If I take the medicine later in the day, I occasionally will have issues sleeping at night. Ironically one of the symptoms of NuVigil/ProVigil is insomnia.
I don’t really ever feel jittery, but I’m on a lower dosage (150mg vs 250mg). I’ve heard that this is the case sometimes with other amphetamines.
Have you had to alter your lifestyle?
A lot of it actually boils down to things everyone should be doing anyways, it’s just that more important that I do them. I make sure to exercise pretty much every day as this helps me sleep at night. Diet is also very important. In addition to a balanced diet being important for a healthy lifestyle, I need to watch what I eat later at night. Heavier, fattier foods tend to disrupt sleep, but at the same time it’s important not to go to bed hungry as this might disrupt sleep as well. Going further, my caffeine intake is pretty much zero. In addition to taking about eight hours to get out of the body, there’s apparently a higher risk of negative side effects from the NuVigil if I have a high caffeine intake.
Perhaps the most important lifestyle (And one that I’m still working on keeping up with to be honest) is a regular sleep schedule. That is, waking up and going to bed at the same time every day. This helps to regulate my sleep cycle.
The general idea with the lifestyle changes is to ensure a full rested night’s sleep, so as to help with the sleepiness during the day time.
Have there been any surprise perks from your diagnosis?
As far as surprise perks go, now that I’m officially diagnosed, I have used it as an excuse in class for why I fell asleep. I actually told one of my professors from day one this semester that I might fall asleep because of my narcolepsy and he was totally cool with it.
Other than that, my friends get to make jokes about it all the time now and comedy is always a good thing.
How would one know if they were a narcoleptic?
The four classic symptoms of narcolepsy are Excessive Daytime Sleepiness (EDS), cataplexy, sleep paralysis, and hypnagogic hallucinations. Hypnagogic hallucinations simply refer to hallucinations experienced in the transfer period between sleeping and wakefulness.For me, I don’t experience cataplexy or sleep paralysis. I certainly have the EDS, and have had a few bouts of a weird, I guess "delirium", immediately after waking up that make me suspect I also succumb to those hypnagogic hallucinations from time to time.Narcoleptics are also different in that their REM and NREM sleep are mixed up. That is to say, I’ll go directly into my REM stage when I fall asleep. Say I take a nap in class, I’m dreaming. Fall asleep in the car? I’m dreaming. If you find that you’re dreaming each time, or at least frequently when you nap, this is a sign that you are going directly into the REM stage. Tied to this, someone with narcolepsy will have a quick sleep onset time. Anything less than 8 minutes is considered quick. When I did my sleep study my onset time was on average between 3 and 4 minutes and I went directly into the REM stage in 3 of 4 naps, but I didn’t actually sleep in the fourth nap.If you’re seeing any of those four classic symptoms or you notice you’re dreaming whenever you take naps, I’d say it’s worth looking into for yourself.