Tell us about your symptoms and treatment experience. Take our survey here.

caret icon Back to all discussions

Cataplexy war scars

I'm curious to know if anyone else is keeping track of all the cataplexy/accident related scars?

It might sound weird but I started a sort of "album" of pictures of all the ways that cataplexy has hurt me....for example last week i dropped the iron on my leg...huge burn! 🙁

  1. When Siri first was released, think it was the iPhone 4 or 5, my Mother had gotten the new phone and we tried asking Siri some questions.
    I asked, "what is Cataplexy?"
    Siri responded with something about, "Hu Hong Mongolian Grill is located at" ...
    I ended up on the floor moments later, the side of my face was pressing hard against the floor for some moments (maybe 10 seconds), I wear glasses so the frame was really pressing into the side of my eye.
    Got up and laughed it off.
    The following morning, after playing the hour of adult pick up ice hockey, in the locker room a fellow player asked, "where'd you get the black eye?"
    I looked at him with a wtf are you talking about, said something like, "huh, black eye?"
    Then I proceeded to the restroom mirror to see what he was asking about, sure enough my eye was surrounded by black and blue (not serious, but it was colored more than the regular dark circles under my eyes).
    Not even sure I tried to explain how I got it to the guy who asked, but sure enough I got a black eye from Siri causing me severe Cataplexy; back in whatever ~2010.
    =\

    1. What a story, ! I might of simply said it was Siri's fault and let him mull over that for a bit. 😀 - Lori (Team Member)

  2. I should not come on here while I am tired. I accidentally deleted my previous comment because my sleepy brain told me I replied to the wrong thing. I wanted to delete my reply, not my original comment. There is no undo button for that and now my curious mind is beyond disappointed that I didn't get to read the other reply to my comment yet.


    My original comment was that I had recently gotten my first cataplexy injury, from grass of all things. A cut about an inch long on my knee. I did take a photo at the time but wasn't sure why. This cut is now a small scar.

    1. Hi , no worries, here's the original reply from our Health Leader, Iris: "I always take a photo! I think it helps to document the visible ways in which narcolepsy has affected me. It's strangely comforting...sounds weird right? lol. At least you know it's not just you! Take care, Iris xxx"

  3. I started keeping a journal of attacks on Facebook but now I don't have Facebook. It's one thing that I do miss.
    Facebook causes me to become depressed and that trigger's my sleep.

    1. Hey! Yes unfortunately social media can be both a blessing and a curse but if it's triggering you then I would definitely suggest avoiding it. Have you thought about maybe starting a small blog of your attacks? Depending on whether or not you like writing or if it's just images/videos...you could try a blog, IG page, Tiktok, youtube...etc?

  4. Burnt tea on my chest every day for months when my family was going through trauma. Kerly

    1. Oh my gosh! That's so horrible Kerly! Sorry to hear that hun!!

Please read our rules before posting.