Doing a new dance called the ‘cataplexy shuffle’

It was January 2020, and I thought to myself, I can’t dance. My feet felt like they were moving through glue, and I couldn’t seem to pick them up fast enough. This wasn’t the first time I had this realization, but I was still a little disappointed that I couldn’t keep up.

I was at a wedding, surrounded by family and not worried about looking silly. We were all doing the “Cupid Shuffle,” a simple line dance. Even the most timid wedding guests hit the dance floor when the song comes on. The lyrics declare, “It don’t matter if you’re young or you’re old, here we go.”

But I couldn’t do the “Cupid Shuffle.” I kept laughing and telling myself to focus. “If I really lock in, I’m sure I can get my feet to move,” I thought. But the extra mental effort seemed to make my movements even slower. It was like wearing heavy ankle weights.

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It was another five years after that wedding that I discovered the reason for my slow-motion dance moves: cataplexy, a symptom of type 1 narcolepsy that entails sudden episodes of muscle weakness. Now I must go back through my memories and untangle what had been a result of this neurological disease and what hasn’t.

Cataplexy feels like a type of physical restraint. I involuntarily lose muscle tone, which often can be induced by an emotional trigger. A big trigger for my cataplexy is laughter and surprise. On that dance floor, I certainly felt both. In 2020, I wasn’t concerned, though, I just thought I had two left feet.

I’ve since been taking Xyrem (sodium oxybate) and Sunosi (solriamfetol) for about a year, and my narcolepsy has evolved in unexpected ways. My cataplexy has improved tremendously. I’ve also learned about automatic behaviors — something I do without full awareness or control, often during routine tasks.

The line between being awake and asleep can become almost indistinguishable for me. These two states combine to form sleepy, robot-like motion. Lately, I’ve been sleep dancing. While doing my nightly routine, automatic behaviors kick in, and dancing is apparently some kind of automatic behavior for me. An audience of my partner and our two cats gets to witness this nearly nightly show.

One way to describe it is like the non-player characters, or NPCs, from a video game, which often have repetitive, unnatural movements in the background. Think of a villager from the game Animal Crossing eating a sandwich. My sleep dancing probably would resemble an NPC version of dancing.

I have yet to try the “Cupid Shuffle” again, but I’m hopeful that with my new treatment plan, one day I’ll be able to. So, if I’m invited to your wedding this year, look out! I may or may not have some moves.

Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.