I’ve been living with cataplexy since I was a teen. It can be confusing, frustrating, frightening, and dangerous. If you have cataplexy, you think you might have cataplexy, or you know someone with cataplexy, I hope you find this helpful.
What is cataplexy?
Cataplexy is a rare condition that affects 0.05% of the global population (1 in 2,000 people). It appears almost exclusively in people with narcolepsy. Cataplexy is a sudden and uncontrollable loss of muscle control, triggered by specific strong emotions. It’s a sort of seizure, interrupting the connection between your brain and your muscles. Episodes can last from milliseconds to many minutes. During all of this, the person with cataplexy is fully conscious and aware.
If you don’t have cataplexy, think of it this way. Have you lost control of a car? Whether it’s ice, wet roads, or going full-blown airborne, suddenly you switch from a driver to a powerless passenger. Now think of your body as the car and your brain as the driver. That’s cataplexy.
I didn’t know what it was
My cataplexy symptoms came on in my mid- to late-teens. I had no idea what was happening, of course. It started very slight – I’d catch my head sagging as I laughed at a good joke – and I didn’t think much of it. I eased into it without much thought; soon I was compensating for it without even knowing what was going on. I would sit down when things started to get emotional, or brace myself against a doorpost or wall.
As the symptoms got worse, my friends and family started noticing. It became a regular joke – when the room started laughing, at some point someone would notice me flopping in my chair and point it out. No one meant any harm; none of us knew what was going on.
I knew more than the doctors
The cataplexy episodes were happening more frequently, but I didn’t have time to worry about them. After all, they only happened a few times per week. I had a bigger problem on my hands: I wasn’t able to stay awake for a normal day.
I spent several years of my life cycling through doctors, trying to find someone who knew what was going on. I tried both alternative and traditional medicine; one tried testing for allergies and recommending herbs, the other put me on expensive prescription regimens. As one thing after another failed to make a difference, I continued to scour the corners of the Internet in search of a solution.
After a few years of this I realized that–despite all of their training–I knew more about the specifics of narcolepsy and cataplexy than the average family doctor.
I hit the floor
During the worst time in my cataplexy episodes, I was at my parents’ house getting ready to eat lunch. I had just picked up a plate and glass and was about to being them to the table, when my youngest brother decided it would be funny to surprise me. I was successfully surprised, and the surprise combined with the mild irritation was enough to trigger a cataplexy episode.
I was standing in the kitchen with a ceramic plate full of food and a glass full of liquid, unable to control my muscles. I felt a combination of feeling surprise and irritation at myself. You can’t drop this! Don’t drop it! I still remember the feeling as my whole body sagged, then caught, then sagged again. I ended up sitting awkwardly on the floor, my plate and glass set down in front of me. I was angry, and the anger was still messing with my brain-to-muscle communications.
After a few episodes like this, I started to compensate emotionally as a survival technique. I learned that certain forms of laughter, anger, and irritation were luxuries I couldn’t afford. Patience was no longer a virtue – it was a necessity.
In recent years my cataplexy episodes have been fewer and further between. I’ve never been sure whether this was due to some improvement in the condition itself, or simply that I’ve effectively compensated for it. I no longer experience the full-body episodes that were so frequent in my teens; these days, it mostly exists as a warning that surges into my body, warning me to get control of my emotions before something bad happens.
Living with cataplexy
I’ve never received treatment for cataplexy itself. Most of my time with doctors and specialists was spent trying to diagnose and treat my idiopathic hypersomnia. Instead, I’ve learned to live with it. I’m already highly analytical, but to compensate for cataplexy I separate emotions from my observations and experiences. I avoid potentially situations–edges, climbing, operating machinery–if there’s the slightest chance that I could experience a cataplexic episode. I’m careful to avoid jokes and humor when driving. I sit down in situations that could be triggers.
There’s no doubt that cataplexy has changed my life in many ways, but I’ve been stubborn enough to not let it keep me from enjoying life and pursuing my goals and dreams. If I could say one thing to someone with cataplexy, it would be this: don’t let it define you. Learn to cope. Find ways around it. Look for answers. And most of all, surround yourself with people who won’t let you down.
- More Than Tired – cataplexy is almost always associated with narcolepsy
- Narcolepsy Network – a support forum specifically for cataplexy
If you or someone you love has cataplexy, I want to hear from you. I’ve never met anyone else like me, and I would love to share the experiences, hopes, fears, and solutions together. Remember, you aren’t alone in this. There are others out there, just like you. Over 3 million people facing the same challenges, fighting the same fight. We’re in this together.