Looking for fellow narcoleptics to share experiences with

Hey outcold, what I meant when I said “conflicting conditions” was that I also have a cardiovascular condition which makes stimulants too dangerous to consider, I also can’t take Xyrem because it triggered some of my psychological issues and irritated my liver for some reason. So I basically can’t take any of the meds currently available for narcolepsy because they make my other health issues worse.

Hi, I'm Wally, I'm 18 and I got diagnosed with Narcolepsy with Cataplexy at 15. We have incredibly bad healthcare where I live so it took several years of misdiagnosis' and "nothings wrong"s before we seeked help out of state. The diagnosis was pretty immediate after that, I'm told I have textbook narcolepsy and a few people ended up getting chewed out about it. I feel bad for not feeling super bad about that. The hardest thing I have with both my narcolepsy & the cataplexy is that I can't do things that I'd be able to otherwise, and would like to. I can't go on a camping trip with friends. I can't go long distances. I can go on flights, but they feel like the worst kind of awful. I feel groggy on them and like I'm 3x my weight. I can't drive all the time. It's hard trying to put it in perspective for new people, or people who don't see me on a full day basis. What do you means and whys are hard.

Hi, I’m Max. I’m 21 and got diagnosed with Type 1 Narcolepsy around the ages of 11-13. Before I started showing symptoms for narcolepsy I was severely oxygen deprived during childhood due to my tonsils being abnormally large and touching, so I was tired all the time. After I got them removed I was still experiencing excessive daytime sleepiness and started showing symptoms of cataplexy (which we also thought could be a reappearance of seizures I had as a child but weren’t), which lead to a sleep study and subsequent diagnosis. This was around the time of an H1N1 infection (which is what I believe triggered the autoimmune disease). Since then I’ve been on Adderall and Zoloft, (I’m off meds right now for personal reasons). I’ve known 1 other person irl with narcolepsy and have joined online support groups for young adults with disabilities/chronic illnesses which has helped immensely. Narcolepsy affects nearly every aspect of my life, and nearly a decade later I’m still learning things about it and recognizing things I’ve always experienced as symptoms. It has been and always will be a journey, I’m glad to meet other people (especially around my age) who have similar struggles.