cataplexy

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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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Fluoxetine

Resource article

Fluoxetine is used primarily for the treatment of cataplexy

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Venlafaxine

Resource article

Venlafaxine is used primarily for the treatment of cataplexy.

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Other antidepressants

Resource article

In the event that If the first choice antidepressants for cataplexy are unsuitable, there are alternatives

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What happens when you don’t provide us with the medicine we need

Blog post
20 April 2017

Following a decision on Tuesday NOT to approve the use of sodium oxybate for an adult with severe narcolepsy & cataplexy due to both benefit & cost issues, we drove to Devon to attend a Treatment Decision Review Panel at Exeter Town Hall.

I would like you all of you with narcolepsy out there, including your friends and family to share this picture because it shows the impact of the decision taken for the individual.

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