Cataplexy
What is your experience with cataplexy, do you have triggers? How do you explain it to others?
I felt like I was looking into a mirror reading your experiences you have with Cataplexy. I too have a sister and brother who are constant triggers to my cataplexy. I have had Cataplexy for over 30years along with Narcolepsy, and my cataplexy seems to have gotten worse as I get older, and unfortunately I no longer work as I was constantly having episodes, and it can become very tiresome, and my days became exhausted, I loved working and the people I worked with were totally understanding and I’m sure never really understood the whole cataplexy thing, no matter how many times I had to explain over the years. I now don’t mix socially a lot , if I do it’s with family and I tend to always without failure have an episode each time, and feel extremely over the whole Cataplexy thing! The triggers are all emotional, mainly laughing, and being very tired. I know when having an episode, and after explaining to whoever, what needs to be done when having an episode, I feel that everyone is staring at me and hallucinations kick in and I see things like a dream, I try to talk and my words are all slurred, and not understood, and I usually come out of it , maybe 10 - 30 mins , feeling a little tired but mostly not sure of what wAs real and what wasn’t.I get a few seconds notice that I’m going to have an episode, my face twitches, and I try to fight it, but it makes things worse. Cataplexy is a life changer, I was someone who laughed and joked all the time and loved to laugh , and over the 20 odd years, I have become very withdrawn with joking ect, even though medications help , I find that I try not to put myself in a situation that will give triggers , and that is extremely difficult, but you cope .
I too find myself being less and less social. I miss the old me but exhaustion and episodes have just not seem so important to go to put myself through all of that on a regular basis, like I use to.
I stopped explaining after my wife was in hospital and the nurse started telling jokes in the attempt to start a cataplexy attack. I just let people think what they want 🤣
So sorry to hear that. That was very unprofessional of the nurse to do that.
Cataplexy has been a dangerous symptom of Narcolepsy. I have had so many falls in public. One of the worse falls was when i was at the gym on the tredmill watching Friends. I got thrown back into the Cross trainer. I can rememmber the ladys face who was on the machine i got thrown into. My main triggers is laughter and exhuastion. Funny enough my youngest sister is also a trigger so less time i spend with her the better she very funny. I explain to other Caplaexy is a sudden loss of muscel control. I say it will look like a fit but please do not panic. If my head is not in danger just leave me and be quiet and i will come out of it faster. The more you talk and fuss the longer it takes me to come out of the attack.
