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🙃

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, 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 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.

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 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

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!