Discovering Different Types of Cataplexy

Cataplexy is a symptom of narcolepsy that consists of sudden muscle weakness or even temporary paralysis. It can be triggered by many different things, but especially strong emotions.¹

When this happens, people with narcolepsy are left helpless, unable to move but still aware of the world around them. At least, that’s what it's like for me.

A brief history of my cataplexy

When my cataplexy onset in college, I was horrified! I was collapsing onto the ground around 40 times a day, lying there in a temporary paralysis, just from laughing or feeling any other strong emotion. I thought I must have a brain tumor or something horrible to explain the severity of the symptom and its sudden appearance in my life. I’d never heard of the term "narcolepsy with cataplexy," let alone knew what it meant. That all changed once I got my diagnosis.

A cataplexy attack in the car

Once I got in an argument and got so angry that I had a cataplexy paralysis attack in a car. I wasn’t driving, but I still fell forward against my seatbelt, which locked up and held me in place to prevent me from falling completely. I was just hanging there, limp.

Obviously, I couldn’t argue anymore. How can someone talk with full body paralysis? Simply put – they can’t! It was embarrassing and frustrating, to say the least.

My cataplexy symptoms have changed

I tried a few different medications before finding some that actually treated my cataplexy. Since getting on this treatment, my cataplexy has decreased drastically. No longer am I falling limp onto the ground at the drop of a hat. However, that doesn’t mean my cataplexy is completely gone. In fact, it hasn’t disappeared at all – it has just changed!

These changes in symptoms mean that I am relearning what cataplexy looks like for me. Most recently, I got into an argument and my teeth started chattering uncontrollably, as if I was suddenly freezing cold. I was so caught up in the conversation that I didn’t realize that what happened was cataplexy until much later.

Now I know that this is a new, lesser version of my cataplexy. At least I am able to get my point across in arguments now, even with the teeth chattering!

Different manifestations of cataplexy

Other ways my cataplexy can present itself now are through weakness in the hands and knee-buckling. My face used to droop noticeably during cataplexy attacks before finding this treatment plan. No longer! However, although my cataplexy is less visible to the other people around me now, it still affects me.

I hold myself back when laughing because I am afraid of getting paralysis in my legs too strongly, buckling at my knees, and falling to the ground. I get weakness in my hands that happens when I get too excited. This holds me back from trying activities like rock climbing, where you need function of your limbs at all times.

But explaining this to someone might sound hollow. Since I no longer fall to the ground in complete paralysis, it might seem like my cataplexy isn’t a problem anymore. And, yes, I’ve gained back so much functionality with my cataplexy treatment and I would hate if I had to go back to that unmedicated state of severe cataplexy... However, this doesn’t mean that my cataplexy is gone. It just looks different, now.

How does your cataplexy present itself? Has it ever changed throughout the course of your life?