Cataplexy… by Leon Lukassen

I have posted two stories so far in the Dutch Narcolepsy Group. One about sleep paralysis and one about dreams / nightmares. And apparently people like it. So here’s my 3rd attempt.

A very important symptom of narcolepsy I have not exposed yet is cataplexy.
Cataplexy, according to the books “abrupt temporary loss of muscle control during strong emotions.”
From my point of view, that should change to “abrupt temporary loss of muscle control during unexpected emotions”
Because I can be very emotional without me getting cataplexy.
As long as the tension builds up slowly so that I can continue to control my emotions.
But for example, when I’m in the supermarket, and completely unexpectedly run into an old friend while I was just hesitating whether I should buy white or brown bread …
Then suddenly a lot of different feelings pile on in me and I feel my knees nodding or my speech will blur. Like I speak with double tongue and my face has idiotic tendencies.

My mother once said: “Don’t get so nervous!”
She obviously saw my face not fully participating while having a discussion of no meaning whatsoever.
So my experience with cataplexy is certainly not that I will fall if someone screams “BOO” behind my back.

I think I’ve suffered from this since the age of 18.
And so I taught myself to especially not to be too emotional.
But that has resulted in the view of my surroundings that I am “indifferent”.
Emotions are everywhere and if you do not show much difference because you suppress the things from within then you are seen as much different and so literally indifferent.

Fortunately, there are people who know me. I cherish them dearly!

3 thoughts on “Cataplexy… by Leon Lukassen

  • 20 October 2016 at 18:25

    I really appreciate your adding unexpected. I find if I prepare myself I can handle strong emotion. I have to do a combination of breathing and meditating and send self-hypnosis, ( I even managed to get through my best friend’s daughter’s funeral). However if the strong emotion, for me it is fear or anger, comes unexpectedly the cataplexy is unavoidable. For me it starts in my face neck and I can usually start to apply my system of quotes self care to keep it from getting worse but not always.
    I am unable to swallow and it interferes with eating. I also use the homeopathic nicotineium and find that that helps.
    I’ve been taking Xyrem for about 12 years.
    When I was first diagnosed I was in status catalepsis. I’ve come a long way.

    • 24 December 2016 at 21:07

      Hi Anne.
      A little late response but did you join our Facebook group yet?
      I bet people can learn from your years of experience 😉

  • 22 April 2017 at 05:46

    I love that you added ‘unexpected’ to describe the emotions in the definition for cataplexy.


Leave a Reply to Jennifer Davey Cancel reply

Your email address will not be published. Required fields are marked *