What It Feels Like to Have Cataplexy

Cataplexy is defined as a sudden loss of voluntary muscle tone for a brief period of time. It’s a component of narcolepsy for many people, and it’s triggered by strong emotions, which can be anything from laughter to moments of distress. These episodes can be as brief as a few seconds or can last up half an hour.

It can happen to me anywhere. Sometimes there is a bit of warning, I can feel it coming on and I’m able to get to a safe spot for it to happen. Sometimes there is no warning, or there was a warning and I didn’t have enough time to get to a safe position. It’s happened to me on trains, at stations, bars, so many different places where you don’t really want to fall to the floor suddenly.

So what does it actually feel like?

It usually starts in my face and works its way down. My speech is usually the first thing to go. I feel my jaw start to droop and I start to slur my words. It’s unfortunate that my speech is the first to go as it makes it hard to explain to anyone I’m with what’s happening. Sometimes my eyelids will droop, but other times my eyes glaze over and I just stare.

Next, my upper body goes and I start to slump. Slowly I release my grip on whatever I’m holding. Finally, my legs give way and I appear to have passed out. On the outside, it might seem as though I have passed out or fallen asleep, but the reality is, I am still conscious. I just can’t move. It’s at these moments that I feel completely powerless.

As I mentioned, sometimes I get warning signs such as my speech starting to slur. If this happens, I am sometimes able to prolong the time until the rest of my body gives out. However, this isn’t without its problems. While I might be able to momentarily hold off the inevitable, the relief from making it to a safe place is replaced with the knowledge that the episode which follows will be worse.

All I can do is hope that when it happens, I am in the safety of my home (bonus points for being in bed) or at the very least I’m with someone who understands, who can watch over me and reassure those who haven’t seen it before that I am all right. It always adds to the feeling of powerlessness when I can hear strangers panic that I have passed out, or adds to the embarrassment if someone thinks I have fallen asleep while having an important conversation.

It has been a long, scary journey figuring out what was happening to me. I am glad I finally know. I am grateful that I have taught myself to watch for signs. It hasn’t been easy, but at least progress has been made.