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Fill in the blank: My most frustrating narcolepsy symptom is _____.

From excessive daytime sleepiness to vivid dreams, what is your most frustrating symptom of narcolepsy? Share in the comments below!

  1. Falling asleep and not knowing it

    1. That really must be frustrating given that you have no control over it. Do you have much support? Wishing you the best. - Lori (Team Member)

  2. Sleeping

    1. Hi . You are clearly not alone. Have you found any medications or strategies that help? Best wishes. - Lori (Team Member)

  3. As an ex semi-professional athlete, who had to give up competing because of cataplexy. I have to say Cataplexy by far.
    I also feel for all of you who's dreams and reality meld because our dreams are so realistic. Realizing conversations you thought you'd had with people where actually dreams. Then trying to explain that to them in real life... UGHHH


    1. Took 4 years, but I have finally adapted to every sport I used to do before.
      While I will likely never compete (skiing) at the world level again, I did one competition this year. I made it all the way to the finish and stopped before collapsing via cataplexy in the finish. (Contentment is a trigger emotion for me). Holding it off till the finish was the goal and it worked!!!
      I still ski at the same level I did before. Just not in competition, competitions are especially triggering (heightened emotions). Overall, I might even ski better now...

      Also yes, I found new passions. I would have never, calmed down enough to become a comedy writer. If not for a literal sleep disorder.

    2. How awesome that you managed to turn a chronic illness into a catalyst for success. I am glad you are still able to safely pursue your passions. It must take a lot of control to hold off on those emotions until the finish. Do you ever incorporate your narcolepsy into your comedy? It would seem that comedy would be a great way to handle the stress of it while also raising awareness. - Lori (Team Member)

  4. Excessive daytime sleepiness is my worse enemy...ugh...the struggle is real

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