I'm 19, soon to be 20 in few months. When i was about 17, and just happened to be taking an anti-deppresent (Welbutrin XL 300mg) for ADHD type issues. I was going to high school & had been playing high level year-round volleyball for years. I had practice everyday, and know I had early signs of narcolespy, with minimal cataplexy and with just one nap everyday after school i was fine. It never seemed to affect my atheletic ability. I was easily able 2 hand dunk at a modest 6'2. I was/am still more athletic then a vast majority of people in all seriousness, which is wierd because you would think all the issues with narcolepsy would work against that. But about 10 months ago (which is about a year after I had the first small signs of tiredness and small head cataplexy)..I was playing on a club team, and at that time my symptoms were worse, with being a little more tired then before and I'd consider a little more facial cataplexy. But even though It didn't seem to affect my athletic ability, but I did notice, that i had a TINY bit of body weakness before being warmed up. when I was warmed up, i was like I had NO symptoms at all. But in game situations, occasionally serving (even after being all warmed up) when it was a close game and everyone was watching i had a slight slight body weakness, but it was one that was just there ya know.. like It was just a buzz weakness feeling, like i still felt as strong an stuff, and i doubt it affected me at all if it did, maybe like 0.3%.. yada yada yada.. anyways those were clearly signs of narcolepsy and about a year or more after the first signs of dozing off in class, 1 deep nap after school to feel good and rested & slight cataplexy in the head. But I play now occasionally for fun along with some working out, and it does not seem have an effect on my athetistim, I feel a longer nap or two are needed though to get that much energy now. But after like playing 2 hours or vball or working out, like an hour later i feel so much more exhausted an often dose of on the couch watching TV or listening to music at my computer. Also cataplexy is alot more powerfull after im taking it easy after working out.. but oddly little to absoultely none while working out. And not while driving although, i do feel alot more tired then normal. But I havn't practiced everyday like i used to though, so i wonder if i would be able handle that now with just more naps needed.. This pretty much all i have on atheletic type stuff. Long story short, cataplexy can be very minimal to sometimes not there when i'm all warmed up and this is without medeicine. I just think i possibly get exhausted easier now though. I also wonder if staying in shape and doing that kind of stuff is good to keep an active lifestyle.
Okay so my cataplexy which is some headbuzzing, visions bluring, and slight sluring and some possible body dropping usually occurs when I tell someone something something kind of important and they are really into the conversation, and like when they say "Woah seriously man!?" I get the signs those signs of cataplexy. And also from really funny jokes are conversations (not always, but usually) And aswell as unexpected suprises from someone or a show.. I get texts sometimes from a girl or two i know to come and hangout obiousssssly, they mean to hook up, and alot of the time i don't have energy like i did before especially when not taking naps anymore... i want to be comfortable in performing with a strong sex drive all the time like i used to. Now It takes longer to build up my sex drive, compared to when i was 17 with not as many issues taking Welbutrin. It seems to get going better after i workout alot and get my blood flowing, but for the most part i think its social anxiety type worry now that you feel you dont have as much energy anymore. It could possibly be, that i dont get out much like i used to. I need to get over this whole staying home all the time avoiding stuff thing, need to get back to my social self like i used to be before this all started to really bother me. I miss my social life. But i also enjoy to mix/dj alot and when I drop like a song that people really enjoy.. that emotion of making people happy can give me a quick cataplexy buzz snap, but not always. The severity depends on each one, depending on how well rested I am and stuff. But usually when i'm in a really intriuging conversation its the worst. And It can be really bad after sex, i can be lieing there, fine and exhausted after .. and just be laying there and a few minutes later my i feel my eyes really heavy and just intense cataplexy feelings and when i stand up and try to fight it my eyes are extremely dropped and i have to keep opening my eyes because they litterally just about automatically shut after i open them up. And at this time i leave pretty quickly because i dont want her to see all the wierd twitching and sluring and stuff. But after i walk around a bit it seems to go away. but I litterally feel if i stayed laying there i'd fall asleep in 30 seconds. And rarely but its happened before i've had the hynopgogic hallucinations with just my eyes close to where i could open my eyes and be fully alert of everything thats going on. but i decide not to cause im so scared. the last time i had it awhile ago, it was scary, there were purple clouds going around my room and i pretty much saw myself int he room, doing something or talking to someone, when i absoultely knew i was lying there in my bad and was full alert. I was scared, so i just told my self, its okay, your fine, just keep your eyes shut, dont fight it and you will be knocked out-asleep very soon. But anyways I feel like some cataplexy from siuations that normal i never get it from even the slightest bit, happen slightly when i am not well rested or tired. Now I have just started taking (Nuvigil 150mg) and it keeps me up from 9a - 12a if i wanted. And although nuvigil keeps me up, i yawn often when i'm not doing anything producutive. and feel a littlebit groggy, but hey!.. i'm not taking 2-3 naps like i used before taking nuvigil. It hasn't happened for weeks since i started taking nuvigil, but when i first started taking it i wasnt used to not taking like 2 nesscary naps. so one of the days, to where, i was really tired, even on nuvigil because of barely any sleep the nightt before, no naps that day, not having as much to drink as i should, and not eating much, waking up early & hooking up the night before (obviously.. all bad situations to put yourself in, being a narcoleptic) but i was exhausted out of mine with a bad headache, and was talking to my dad about how i missed the my brother because he moved out and that triggered it to start, and i was feeling alot of drooping, sluring and buzzing, and i said something again, and then stood up walked away and then it hit after I heard my dad say something and i slowly feel to the floor for the first time ever. and my dad came over and said are you alright and about 3 seconds later i felt good enough to stand up. But havn't anything like that at all recently, and have been taking nuvigil and avoiding naps altogther. But because I'm avoiding naps i feel like its a bit more cataplexy then it was weeks ago before taking nuvigil, all tho i was taking like 3 naps a day almost because i dont much during the day right now. And also without nuvigil i can go a full pyscial labor work day like 9-5, lifting stuff and doing that kind of work, its just I get a moment that day to where im moving stuff or whatever and I all of a sudden feel loopy for a few mins and a more sluggish and a tiny bit out of it. but when i'm stimulated from working like that without nuvigil. I do a napless day but in exchange i will get a few sluggish episodes, and if im sitting down after like in the car (passenger) i will dose off many times and wake back up on the way back home.. so it seems when i get oppurtunites where im sitting down not doing much, tv, passenger, just sitting.. etc i will dose off. and when i fight doseing off is when i get all really cataplectic.
Lots of ranting!! I'm so sorry! but, im a badd typist and and jotting all the ideas i can think of!
And when i say cataplexy for me its the kind to where i might close my eyes for a second, but i've never been knocked out from it. my eyes close for a second maybe, take a deep breath, and it slowly goes away. But anyways, i'm am probablly going to go back on welbutrin on top of this nuvigil in a few weeks, because i told the doctor i think that I had cataplexy a year ago, its just it was covered up by the welbutrin (anti-depressent) i happened to be taking at the time. So i'm hoping nuvigil will keep me during the day like it has been, i'll be more tired to where i'll sleep a little better. and I'll still have cataplexy issues especially because i'm not napping anymore, but i hope thats what welbutrin can fix for the most part. that's what i liked about welbutrin is, it was barely noticable when you didn't take it, compared to other medecines that you clearly feel like a diffrent person. I took ritalin, stratera, concerate, addarel all when I was little and had terrible expriences for them, so i would never want to go back on a personality changing med like some of those again. my mom said when i was 5-12 taking all that diffrent stuff that on some of it i was forced fed and drooled like a zombie.. on like rittalin.. and i remember stratera i think made me sleep all tthe time even if i was laying on the floor in the living room in them middle of the day., she always thought the doctor gave me wayyyy to high mg's when i was a kid. my dad always told the doctor that i was a terrbible, troublesome wild kid, when in reality i got a detention for talking here and there, not wreckless crazy stuff like he made it sound. so it that case the doctor gave me strong *BEEP* that he THOUGHT would help my 'case' so i wonder if trying high doses of all that stuff at a young age, and being to little and probablly underwieght for alot of the mg did anything to my brain createing this narcolespy for me. even though I was taking all that ADHD, anti-depressant medicine at age 5-13.. i don't know how narcolespy could surface when i was 17 and not right after that stuff. because when I was 13-18 i was taking welbutrin. and like i said before had no problem with this medecine. but i just wish i knew how this all started. because we all are suffering from it and it sucks, some worse then others.
I really want to get out more and do things like i used and be really social and outgoing again. I want to go to parties again(obviously not try all nighters) but be able to talk to people confortably and flirt confrtablly, i feel like when i do it now i get sluring and stuff. I slowly lost my group of friends because I started being less social because of my ocassionall cataplexy uncomrtableness. I havn't been on any anti-cataplexy type medecine at all so i hope since i have a mild case of cataplexy (frequency wise) and (severity wise) and i hope that welbutrin can work for me to where it can demmenish alot the cataplexy, because i feel that with the little bit of headbuzzing and i had while taking welbutrin about a year ago, is totally manageable, i would be fine with suffering from from a little bit of buzzing slight weakness feeling compared to slouching sluring, double vision and eyes shuttering now. So i hope this works for me.! Because i want a an active, social life,relationship, athletiical, muscial, still fun and independent life! if welbutrin doesnt work like i hope it to, i'm hoping something else i try will, without changing my persoanlity!! I am starting a job at lowes doing manual labor in a week, on nuvigil!! also planing on moving out of my dads house and down to florida in about 4-6 months. been saving! i need to find the correct MED comboination and the correct sleep habits to where i can be very indepent and still social again. I can't even tell you how much i miss beening on the comfortable side of flirting with girls with MINIMAL totally manageable cataplexy. I want a relationship!
So I'm on nuvigil 150mg i can possibly feel groggy but it keeps me up for the most, part. only if im really really tired i'll dose off for a second. Hopeing to add welbutrin xl 300mg and that will minimize that cataplexy by like 70 percent and i'd be so so so happy.
NUVIGIL 150mg - drymouth all the time even after drinking tons of water. ocasionally uneasiness. but works
I am wondering if an active lifestyle like working out stuff more would be good for my condition, cause i felt good when i was in really good shape from volleyball. Also if i should really get my self back out there of this social rut to where i try to avoid social stuff that i used to do all the time. if i should try multiple meds till something works?
Possible Causes from Narc & Cata that really annoy me: Sleeping and waking up feeling like its been hours and hours and its only been 30 mins, vivid scary dreams, hypnogic hallucinations, some drooping & sluring in some converations, being tired, muscle cramps ocassioanlly, double vision.. I dont like or want to have to avoidin siutations, have to not drink alchol (or can i still ocassionally) havingto take meds, always being sad that I cant do things that other people could, wondering why me!? and that this for life, explaining to people what it is. etc etc.
I hope with a correct combo or meds & habbits I can become a very athletic/volleyball player again, be able to go to parties and socialize very comfortably, be able to drink ocassionally a bit again. be able to flirt and get my confidence up again with girls again so i can have a relationship! and just become a indepdent person.
I am a lucky dude to not have severe conditons like some of you brave brave people do, and especially lucky to not have something really bad like cancer!
So I am hoping that my mild condition can be controlled!!
Thank you so so so so so so much for taking your time, i know i know.. terrible typing. but i just spent 4 hours and spoke everything on my mind, to try and help you all understand the situation! You don't realize how worried I am about everything!
any questions, comments, tips, advice, your own situation, or anything like that please!!!!!!!!!!!!! just ask and let me no!
my email is austeenob@aol.com , if you want to send a long response to there instead that fine with me
thank you so very much, i'm new here, so hi everyone. glad i'm surrounded by people with similar narcolepsy issues!
thanks again!!!
