Like the Comet

It's been about ten years since I was diagnosed with Narcolepsy, and though the star of this show is excessive daytime sleepiness, the various symptoms that come with this chronic sleep disorder also put on quite a spectacle.

So, instead of doing one post explaining all of the symptoms, I figured I’d walk you through them separately.

Starting with the most annoying IMO: Cataplexy.

Disclaimer: everything I describe in this post is from my own personal experience. I’m not trying to speak on behalf of all people with narcolepsy (PWN) because everyone experiences symptoms differently and at different degrees - including cataplexy.

WHAT IS CATAPLEXY?

According to the National Sleep Foundation, cataplexy is sudden and uncontrollable muscle weakness or paralysis that comes on during the day and is often triggered by a strong emotion, such as laughter or excitement.

WHY DOES CATAPLEXY HAPPEN?

Cataplexy occurs because of the inability to regulate sleep and awake states (Narcolepsy) - meaning that elements can overlap. During normal rapid eye movement (REM) sleep, there is a natural loss of muscle tone. In the case of cataplexy, that characteristic of REM sleep occurs suddenly during the day, causing weakness or full paralysis, even as the person remains awake during the episode.

(Source: SleepFoundation.org)

WHAT HAPPENS DURING A CATAPLECTIC EPISODE?

Basically, without warning, cataplexy causes me to lose muscle tone - meaning I get a slack jaw, my speech becomes broken and slurred, my knees buckle, and all of the muscles go weak in my neck, face and usually arms.

I’m totally awake and aware of it happening, but I just can’t move. Some PWN will also fall asleep after a cataplectic episode because it’s incredibly draining.

WHAT TRIGGERS IT?

My cataplexy is most commonly triggered when I’m laughing really hard. There have been isolated instances where I’ve been frustrated enough to get it, but it’s mostly when I’m laughing.

Quick tangent: in my junior year of college, we had a period of time where random flies would get into our apartment because our building backed up to a field. Whenever I would go to swat a fly, I immediately got cataplexy. Like literally mid-swing would just crumple like a rag doll. After talking with my doctor about it, she actually found a research article later on this exact topic and it turns out it’s a common occurrence.

Literally, the act of swatting a fly commonly causes PWN to have cataplexy lol. I don’t know why I find that so funny. I think it’s because swatting a fly is so mundane and yet it generates just enough excitement to trigger cataplexy.

Cataplexy feels like one of these old string toys.

WHAT DOES IT FEEL LIKE?

The only thing I’ve been able to come up with to describe what it feels like to get cataplexy is comparing it to those old toys we used to have that are like animals made of strings and beads on a platform (pictured above). You push on a button underneath the platform and the animal drops, and then when you let up on the button, it snaps back into formation.

That’s how the sensation of cataplexy feels - like someone pushed on my platform’s button and left me in a pool of string and beads.

It always starts in my face - specifically my eyelids and jaw. My eyelids kind of start to feel like there’s a magnet pulling them down until about halfway, while my jaw goes slack like it’s just hanging there. Super cute, I know.

The loose jaw causes my speech to slur and makes it hard to talk. Honestly, I probably sound drunk like I took some midwestern mom’s “It’s wine o’ clock somewhere” wall decor a little too seriously.

Then follows my neck and shoulders. My shoulders will drop then curl forward while I get that newborn baby, butter-muscle neck. Yanno how a newborn baby can’t lift its own head? That’s me during cataplexy lol. No matter how hard I try to muster up the strength to pick up my head again, my chin stays glued to my chest.

Now if I’m laughing hard enough, then my knees will also buckle. If you’ve ever had someone do that super annoying thing where they come up behind you and push you in the back of your knees when you’re not expecting it, that’s kind of how this feels.

Once the cataplexy has passed, I usually will feel the ramifications of it for about 15-30 minutes after - primarily in my muscles. It kind of feels like that dull ache you get after a super exerting workout. The experience overall is also just really exhausting because so much of your body is suddenly compromised in such a short amount of time.

HOW LONG DOES IT LAST?

Depending how hard I’m laughing, how tired I am, my medication, etc. depends on how long it lasts. On average, I’d say about 30 seconds to a minute is usually how long my cataplexy lasts once it’s triggered.

It’s not something I can just stop on my own though. I literally just have to ride the wave and wait for the cataplexy to pass before my strength comes back.

CONCLUSION

As I mentioned earlier (per my last email (lol jk)), cataplexy is the most annoying symptom in my opinion. It’s exhausting, can be embarrassing and causes quite the inconvenience. Luckily, I haven’t experienced cataplexy in a while due to a nighttime medication I started taking a few years ago.

If you have any questions I didn’t cover in this post, feel free to reach out! I love talking about my experience and am happy to share. Otherwise, please comment below:

If you had one of those string/bead toys as a kid, what was the figure on top?
If you didn’t have one of those string/bead toys as a kid, what year were you born? lol