Narcolepsy Support Group

Hey! I'm 17 and I've never meet anyone as young as me with narcolepsy! I also have other medical problems. I've tride almost every stimulant out there! Rittalin took away my appetite and I ended up losing 35 lbs. I was taking Addarol but that stopped working. I was taking about enough for five people my doc said but I was still sleeping all the time. Please respond to this. I think we have a lot in common and I would love to talk to you about how you're dealing with this and being in high school.

Hey I'd be happy to talk to you about this stuff. I've been on super high doses of basically everything. Concerta has helped a little, and Nuvigil helps the falling - asleep - while-talking part. So what would you like to know?

My insurance company won't approve provigil or nuvigil and we can't afford it. So I'm stuck on Dexedrine and it's not really doing much. I'm always sooo exshauted at school it's hard for me to function most of the time. I feel so bad because I never have any energy to go out with my boyfriend. We justend up laying on the couch and watching tv. Then of course I fall asleep. I feel bad because we can't go out and do anything. Is your relationship with your boyfriend like this?

Yup, we have a routine, saturday he works, on Sunday he comes over to my house, we lie in bed and watch movies or talk. Sometimes we fall asleep, but since he used to have sleep apnea, he understands completely. I don't have a reason to feel bad, and neither should you. On special occasions we might go out to dinner or something, but I think we're both happy with our routine you shouldn't ever feel guilty about being sick, and of he's upset then he needs to grow up a little. And my meds don't really work at all...

Well he's grounded a lot so we don't get to see each other much. He's in the national guard and leaves for trainning this summer for eight weeks and then about four months after he gets back he gets deployed to africa for a year. So what little time we do get to spend together I'm always exhausted. He says he doesn't care but I still feel so bad. About the meds, it's been giving me migraines everyday. They last until I go to bed. I've been spending all my time in the dark in my room. I don't really see my family much anymore. My mom is taking this pretty hard. Shesays she misses me and she wishes there was something she could do. I don't know how I'm gonna deal with this for the rest of my life.

Yea I know it's tough… but dwelling on it doesn't really help. And if he says he doesn't mind, than believe him, because if he really does care, than he's a loser. Its not about where you are, it's about being together, that's what me and Frankie learned. I don't know what I'm gonna do with my life… I used to want to be a marine animal trainer, but a person with fibromyalgia/narcolepsy can't do that. If I had the money, I'd go to medical school to be a diagnostician/doctor, but I've grown up with little money. A nurse has to be on there feet and awake for lots of hours, so that's out too. I guess there's still art therapy... But idk. My brother, who has a similar autoimmune disease to my fibro/ narco called POTS and he's now on disability. My mon doesn't get it, she thinks I can do whatever job I want, of I just "try". Bull. My dream jobs are all out. Oh well. Life goes on. I'll find something, and you will too.

I'm going to the University of Cincinnati in the fall for psychology. I want to be a psychologist. This is one thing that I will not let get taking away by my condition. This is my dream and my passion and I will make sure I do everything in my power to achieve it. Last night was horrible for me. I went out with a group of my friends for one of my friends birthday. I went to the bathroom and all of sudden I got this skull splitting headache. My friends came in and founde hunched in a ball sitting in the floor. They started freaking out and they went and got my boyfriend Chris. He's not the best when it comes to those situations. He gets really freaked out and scared because he can see howuch pain I'm in and as much as he wants to there is nothing he can do to make it go away. He was almost about to cry, and if you knew him you would never believe he would cry. It showed me how much he loves and cares about me. I don't know what I'm going to do without him when he leaves. He can only get letters about once every few weeks when he's at training. They want them to get used to what it will be like when they deploy, but when they do deploy we've been told we'llbe lucky if we hear from them twice a month.

Tbh I don't really know what to tell you about the deployment thing. But yea the skull splitting headache thing, I get them every day, all day. Around 7 or 8pm and 9 or 10 am, it turns really bad, and I ca t see. Also I have hypersensitive hearing. Last night was super windy and I literally flipped out (i go crazy when I can't sleep) I stormed outside and tore down the wind chimes because it felt like they were banging in my eat… when my boyfriend sees me in horrible pain, he gets the same way. He's a very tough guy, but a complete sweetheart on the inside. I can see the tears in his eyes when I'm in pain, I know he wants to help so bad, I t can be hard.

I used to get the headaches around 3pm, after school and they would last all day until I went to bed. Now I get them around 9-10am and they last all day until I got to bed. Nothing helps them. I've been suffering with depression for about a year and a half now. It started because of my other medical issues. I used to relief drink. I would do about one to two shots about two or three times a week. I was doing great during the beginning of the school year but now it's starting to come back again, well it never really went away. Being exaushted all the time just feeds into it. I don't know how I'm gonna get out of it this time.