Looking for fellow narcoleptics to share experiences with

Hello! I’m 25 and have been diagnosed with narcolepsy for going on four years, though they wanted to test me for it sooner but I didn’t think it was feasible to get off my antidepressants at that time. I won’t say it’s never a struggle now but I would say things are much better than when I was in college and first diagnosed. Down to chat!

hi ! i’m marie and i’m (almost) 21 i was diagnosed my sophomore year of high school. I also have insomnia and adhd which like anya means my meds for narcolepsy are limited. I get it it’s hard

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.

Hi I’m 22 on March 24! I also don’t know anyone with narcolepsy I think one of the hardest things for me is when I get considered lazy for being tired.. alot of times I wake up and I feel like I never slept the night before.. do you guys feel like this too? When I try to talk about it with other people who don’t have narcolepsy they kind of scratch their head in confusion? I was diagnosed when I was 16? 18? I would sleep for hours when I came home from school ate dinner and went right back to bed until the next morning.. that’s when it was really bad - before I was on my meds. I think the biggest peice of advice I could give would be to tell your sleep doctor everything/ build a great relationship with them. My doctor has been really helpful in getting me on the right medication and actually listens to my concerns 💕 I’ve tried alot of different meds to get me to one that I somewhat like.. don’t give up! If anyone wants to chat feel free to shoot me a message? I just downloaded this app today so I’m not really sure how it works.. but I would love to make some new friends who understand what it’s like to have narcolepsy! 😅

Hi H! I’m Anya, I’m 22, and also don’t personally know anyone else with narcolepsy. I was diagnosed last year, but I have been struggling with symptoms since my early teens. I think the hardest thing about narcolepsy is how limited treatment options are because of my conflicting conditions🙃