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#NarcolepsyStories: Lee Martin

Blog post
6 October 2020

Sleep is as vital as drinking water and people who sleep well simply cannot grasp just how devastating a sleep disorder like narcolepsy can be.

I've had narcolepsy for as long as I can remember. But I went undiagnosed for almost two decades. Then, in my 20s, I had a cataplexy attack for the first time, my muscles suddenly giving way during sex. This was one of the most frightening experiences of my life because I remained conscious but had no idea what was going on and thought I must be dying.

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#NarcolepsyStories: Nikita Tyler

Blog post
2 October 2020

I had turned 13 and over the summer holidays, I began sleeping in until the afternoon and taking naps for the rest of the day. I put it down to feeling a bit depressed because my best friend at the time had moved away. My mum put it down to me being a lazy teenager. By the time I went back to school in September, the urge to sleep was becoming more frequent and more intense. I remember my eyes starting to sting in a religious studies lesson and I just wanted to shut them. At home, after school, I’d sit down and be asleep at exactly the same moment.

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#NarcolepsyStories: Heather Murphy

Blog post
9 October 2020

One day I was a child who could get up at 6am and stay awake until late in the evening. The next I just couldn’t stay awake. About a year on, I experienced cataplexy quite suddenly. It was not gradual like the tiredness. I would collapse whenever I laughed or even just with the joy of seeing friends.

If a child came to you with seizure-like symptoms wouldn’t you take them a little more seriously?

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#NarcolepsyStories: Nicole Hirst

Blog post
22 September 2020

I was so young when I began to develop narcolepsy and cataplexy – just five – that I don’t remember much apart from the teachers telling me off for sleeping in class. At a meeting about my sleep, a teacher told my mum that I had slept through so much that I would not amount to much academically. I had some friends, but I couldn’t go to their houses as they were scared of having me over. I became a recluse. I cried a lot. I hated my narcolepsy. 

I wanted to show the teachers that they were wrong to write me off.

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#NarcolepsyStories: Megan Wall

Blog post
15 September 2020

Nobody knew what was happening to me. I started to experience an array of symptoms such as excessive daytime sleepiness, frequent loss of muscle control in my legs, arms and neck as well as slurred speech. I visited hospitals all over the country seeing different specialists, including a thyroid specialist, an ME specialist and several sleep disorder specialists, with myasthenia gravis even being investigated. Eventually, eighteen months after the onset of symptoms, I was diagnosed with narcolepsy and cataplexy at the severe end of the spectrum.

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