A man stands in front of a white board looking back at it nervously. On the whiteboard is a rising line chart, spikes on the chart are labeled with emojis. Laughter, sadness, fear, anger, anxiety, marker

The Evolution of My Cataplexy

Most people I’ve spoken to have expressed that one of their first symptoms of narcolepsy was excessive daytime sleepiness.

This was not my case. The first symptom I remember experiencing was cataplexy.

Why do some people have cataplexy while others don't?

When I was 15 years old, I remember laughing and immediately experiencing what has now become a very familiar feeling. For this reason, and a multitude of others, cataplexy is one of the symptoms that most intrigues me.

There are a lot of things that we would like answered about cataplexy. What makes some people have narcolepsy with cataplexy and others have narcolepsy without? What is the connection between cataplexy and emotions? Why do certain emotions trigger cataplexy and others don’t?

My cataplexy attacks have escalated with time

While I would like to have answers to these questions, the one thing that has become of greater interest to me is the evolution of cataplexy with age.

From what I can remember, I have been living with type 1 narcolepsy for 18 years now, and it feels as though my cataplexy attacks have been escalating with time.

A timeline of my experience with cataplexy

Age 15
As I shared before, my first memory of experiencing cataplexy was at 15, and back then, these episodes were few and far between. They were also very specific to one emotion only: laughter.

For years, whenever I laughed, my cheeks trembled, I couldn’t make a sound, and my knees would become weak. As unnerving as this was, it was easy to dismiss and push to the back of my mind.

Age 21
By 21, cataplexy attacks triggered by laughter were guaranteed, and it was around this time that other emotions began showing signs of becoming triggers as well. After laughter, it was fear.

I’ve always had a fear of spiders, but at some point, my fear became a full-blown phobia. I remember one episode very vividly. I was in my living room, scrolling through my phone, when out of the corner of my eye I saw something scutter across the floor. When I looked and saw what it was, fear shot through my body, and the next thing I knew, my wrist slackened and my hand went limp. My phone crashed to the floor.

Age 31
By this age, most emotions triggered my cataplexy. I was now triggered by laughter, fear, anger, frustration, and even excitement at times.

Despite this, my cataplexy had always been very localised, and usually, there were never more than two or three body parts that would be affected simultaneously.

That is, until my sister’s wedding day. It was an extremely hectic day, and as the sister of the bride, I had been running around non-stop all day. By the end of the night, after everyone had finally left, I was absolutely exhausted. I ended up having a small but heated discussion with someone, and I was becoming increasingly frustrated.

I was standing up and talking with the person, and all of a sudden it felt as though I lost control of every single muscle in my body. Before I knew it, I was lying on the floor.

I’m not sure how many seconds or minutes went by before I was even able to speak. I think I was even more shaken up by the incident than the person who witnessed it.

Wondering what the future holds

I am now 33 years old, and luckily I have only experienced this complete body shutdown 2 more times since that day.

I do worry about this evolution in my cataplexy because it leaves me wondering what it will be like in another 18 years. Unfortunately, for now, I have no way of knowing.

I would love to know if other people’s experiences over the years have been similar, or if what I’ve experienced is somewhat uncommon.

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