Crash Course: Cataplexy

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.

Source: Project-Sleep.com

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

Spilling that Sleepy Time Tea

“I’m tired.”

A phrase most of us hear daily and have definitely used in a few different contexts. According to my handy dandy Google search, the word “tired” can mean:

• In need of sleep or rest

  • As in: I’m tempted to take a nap in my car at lunch because I’m so tired today.

• Bored with/fed up with

  • As in: I am so tired of people saying pineapple shouldn’t go on pizza.

• No longer fresh or in good condition

  • As in: The Uggs you used to wear in middle school looked tiiiired.

Gave ya some examples in case you needed it used in a sentence. :)

Today though, my friends, we are going to focus on the first definition — needing sleep or rest.

Most people who have been in my life for a while or that I’m close to know that I have a chronic sleep disorder called Narcolepsy. For those of you who are unfamiliar or are quickly jumping to the wrong assumption that it’s the same thing as epilepsy, no need to worry. Hales is here to educate and inform.

Narcolepsy is excessive, uncontrollable daytime sleepiness.

It’s an incredibly overlooked, under diagnosed disorder and is more common than you’d expect. Though I eventually plan to dive deeper into my own experience with the disorder in a future post, I figured I’d start out with some of the facts.

So, today we’re going to bust some myths and spill some tea on this chronic sleep disorder.

*Cue Sleeping Beauty in Ghost Busters uniform because why not?*

Masterpiece drawn by my girl, Dilly Dalian.

All right, y’all. Let’s bust some myths.

Myth 1: Narcolepsy is a comical disorder that has been portrayed 100% accurately in the movies.

I remember watching Rat Race as a kid and the one character was so excited to be ahead of everyone else until all of a sudden, he’d stop dead in his tracks and fall asleep standing up. Though falling asleep mid-conversation is something that can happen, it’s not necessarily a daily occurrence. Plus, narcolepsy comes with an array of not-so fun symptoms in addition to all of the annoying sleepiness.

Myth 2: People with narcolepsy fall asleep all the time and can sleep whenever.

Even after being diagnosed with Narcolepsy, there was about four years where I was free balling the nighttime without a medication. Once I was put on a medication that puts me out at night, I realized how little I had been sleeping and how often I was waking up at night. Though people with narcolepsy struggle with extreme sleepiness during the day, a huge issue also experienced is disrupted nighttime sleep. It’s truly doing the most to make sure we aren’t getting sufficient sleep.

Myth 3: Being able to nap/sleep whenever would be nice.

False, my friend. So incredibly false. I was watching Family Feud not too long ago (last night. It was last night.) and one of the questions was something along the lines of “Where is the worst place to fall asleep?” and to no one’s surprise, “Work” was the number one answer. The incredibly strong physical feelings that come along with a sleep spell (or micro nap - whatever you want to call it) are so uncomfortable and unwelcome. Imagine having to excuse yourself from a meeting at work, so that your will eyes quit going out of focus, your speech will stop slurring and you don’t fall asleep on the table in front of your colleagues. It’s definitely not a luxury, especially when you cannot control the timing of your next micro nap.

Myth 4: Sleepiness = laziness.

I was never great at math, but I’m confident in calling some bullshit on this one. Go without sleep for about 2-3 days straight and that’s how a person with narcolepsy feels every day. It’s something we cannot control and is definitely not a sign of laziness. Besides, narcolepsy aside, one thing I learned a while ago during an internship in college from my mentor, the wonderful Erin, if you see someone who you know is normally a hard worker struggling to stay awake, maybe you should ask if he/she is okay. Maybe he/she is having a hard time at home or isn’t feeling well. You never know what someone is going through, so before assuming the sleepiness automatically means laziness, maybe check on the person first.

And, last but not least.

Myth 5: There’s a cure!

Though scientists are learning a lot more about this neurological autoimmune disorder that causes the gradual loss of neurons called hypocretin (or orexin), they haven’t quite found a cure for it yet. You cannot detect it from a blood test and the experience is incredibly different for everyone. So, what might work for one person (medications, etc.) may not work for the next person.

Well there ya have it. Five high-level myths about narcolepsy. If you’re ever interested in learning more, I highly recommend the book “Wide Awake and Dreaming: Memoir of Narcolepsy” by Julie Flygare. It’s an incredibly accurate and detailed book that helped people in my life understand truly what I’ve gone and continue to go through daily. s

Available here on Amazon, if you’re interested in a quick, but informational read. :)

Shout out to JF for her incredibly helpful website that inspired me to write this post as well.

For the record, I love talking about my experience with narcolepsy since most people aren’t very familiar with the disorder and I still plan to write a future post about my own personal experience with it. In the meantime though, please feel free to ask me questions and I’d be happy to spill some more of that Sleepy Time Tea. :)