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Adjustments, Adjustments, Adjustments


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#1 narc2narc

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Posted 14 August 2011 - 10:27 PM

Hello,
My name is Andrew, I'm a recently diagnosed narcoleptic (age 20), however have been dealing with the symptoms since roughly 17/18. At the time when it started to get bad, i thought maybe it was just stress (bad breakup and starting college), anyhow i started abusing opiates, mainly oxycodone, pretty bad (hence the name narc2narc). This actually helped keep me going, of course until over a year went by and my life was in shambles. I lost my scholarship, my life savings, friends and anything else you can think of. Somehow i managed to clean up my act and stay in school while holding a job, and i started getting tired like i remembered before the drugs. Almost for a year, the doctor tried to tell me it was depression, giving me several ADs that didn't help me, i finally got a sleep study awhile back, and well here i am telling you this story. So basically, my nugivil does okay, but not that much so i understand i have to make big adjustments. I have to work, and always have while in school (full time student at West Virginia University). Any advice on finding an extra boost to focus on school and work? How to cope with the new depression thats come along with it? At first I was excited to know why and be able to be treated, however once I found out that the medicine wasn't going to act as a miracle and that i would have to deal with this the rest of my life, it made it worse. My college experience has been probably below average, i haven't really met a lot of people, and at my school (#6 party school), partying is where you usually meet people or in the dorms freshmen year, which i did not live in because i am a townie. I cant keep up with drinking all the time, not that i really desire too, it would be awesome to meet people around my age that were dealing with the same things, and could relate. Thanks for any feedback.

#2 Artsy-gal_90

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Posted 16 August 2011 - 12:40 PM

Hi Andrew,

I completely get it. My name's Shannon. I'm now a Jr. in college, age 20, and I was also recently diagnosed (just this past spring break actually) but I've been having symptoms since 17-18 and perhaps before (since I could've sworn I saw a ghost-dog hallucination when I was in 7th or 8th grade). Narcolepsy has completely, completely changed everything even down to my personality (which is more snippish and irritable now). My freshman year was dandy, I made friends, went off hiking and shopping all that good stuff, (albeit I was a little tired and would pass out random places but I worked around it). But then when summer came, I started...seeing/hearing/feeling things at night around the room, scary, "Ring girl" things. And no one... believed me except my mom (but even then it took hours of yelling/crying to get her to take me seriously). Around that time all the other symptoms like cataplaxy, micro sleep, depression/anger moodswings hit. I couldn't get seen by the sleep doctor for another year because the first doctor I saw wasn't familiar with narcolepsy and told me I was just "looking for a zebra in a herd of horses" (no wonder narcolepsy is hard to diagnose with people like that)...so I didn't have any "awake" help for a year. I kind of just did combinations of coffee with extra espresso shots, extra strength 5-hour energies, rockstar energy drinks, freezing ice showers,naps...etc to stay awake but lectures were and still are almost impossible to stay awake through.

Within a few months of Sophomore year, 3 of my best friends told me that they couldn't stand me anymore because I was too "negative" and couldn't go do anything (I was sleeping) and that they didn't believe I actually had narcolepsy, "I was just saying I did". When my professors didn't take me seriously either (and embarrassed me for falling asleep in their class) I decided to push for getting it OFFICIALLY diagnosed (I was pretty sure what it was after researching about cataplaxy...which I get whenever I laugh)... and I am so glad I did because now the symptoms are even worse/stronger.

Now that I am diagnosed and surrounded by friends who understand more of narcolepsy, things are much better than before, but now I have new problems. The main one being "loss of time perception" ... so 10 minutes goes by ..... but then someone comes and yells at me for taking an hour and a half doing something and I'm like.... O_o an hour + 1/2? how? (dumb microsleep) I turn 21 in 3ish months....and i definitely would like to try a drink (I already looked online and found the "saloon" and everything).... I would have to make sure I'm among friends that wouldn't steal/rape/kidnap/take pictures...etc when I suddenly face plant asleep -_- ..... ok stepping off rant soap box now. To sum it up, I think we are very much in the same boat. Do you think we could get hired out of college for narcolepsy studies? Insurance included? That'd be nice....

#3 narc2narc

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Posted 16 August 2011 - 05:31 PM

Artsygal,
Our stories are pretty similar, thats awesome, well not really, but you get me. As with my friends, they also got to a point where they were like, OK your not the same fun person anymore, you never want to do anything yet complain about not getting out there and having fun. For the longest time, i just ignored their calls (especially at night) because i knew they were calling to ask if i wanted to do something. I felt bad, but it was better than trying to explain for the 100th time why i don't feel like heading out tonight (at the time i didn't understand either), and making it seem as if i simply didn't want to hang out with them. Once my doctor finally decided to send me to a sleep center, i got lucky because some girl canceled, and I got to go to the test roughly 5 months after the decision was made, and then another 2 months to get the results and see a sleep doctor. I say lucky, because it could have been longer as it was for you. I drink mad caffeine, rockstar recovery is like water to me. I don't feel bad drinking so much of it because its non-carbonated, very low sugar and taste pretty good for a low carb drink. Probably not the best rationale, but oh well. As for class, I would be okay when i walk in, yet within 5 or 10 minutes i could not help but to shut my eyes no matter what, i tried so hard. Hopefully this upcoming semester (which starts next monday for me) will go better since i at least have a pill to take in the a.m. As for the insurance and narcolepsy studies, that would be pretty cool! But i have no clue. :unsure: