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27... And Finally An Answer


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#1 Sera Bishop

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Posted 28 August 2009 - 10:36 PM

I turned 27 a month ago. I had a sleep study last night. Unofficially, the tech told me it's pretty likely I have narcolepsy, and he's the one who scores the tests. I am experiencing a torrent of emotion... relief (finally have an answer), frustration (with the people who've made me skeptical of my own motivations/laziness/abilities), proud all over again (that I graduated a year ago without proper treatment, though it near killed me!). Emotional, as can be expected. I take Provigil, but not regularly -- I just can't afford it. I also take Effexor for depression that I've experienced since about 13 (very controlled at this point). Just looking to find people that have been here before... I know I'll survive and find a way to manage... but I'm still so emotionally exhausted from it all....

#2 Toph4er

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Posted 29 August 2009 - 12:12 AM

Well Sera, I don't know that I can really help you, but as a college student now myself, it is inspiring to hear that you were able to make it, especially as I am now choosing to forgo my meds. Hopefully the diagnosis, if it is confirmed, will help you out, you never completely escape the stigma, but it does let you cope a little better I think.

Chris"Toph4er"

#3 Irishhh

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Posted 29 August 2009 - 12:17 AM

I turned 27 a month ago. I had a sleep study last night. Unofficially, the tech told me it's pretty likely I have narcolepsy, and he's the one who scores the tests. I am experiencing a torrent of emotion... relief (finally have an answer), frustration (with the people who've made me skeptical of my own motivations/laziness/abilities), proud all over again (that I graduated a year ago without proper treatment, though it near killed me!). Emotional, as can be expected. I take Provigil, but not regularly -- I just can't afford it. I also take Effexor for depression that I've experienced since about 13 (very controlled at this point). Just looking to find people that have been here before... I know I'll survive and find a way to manage... but I'm still so emotionally exhausted from it all....



We all understand with no question how you are feeling! Of course, we all feel differently, but in the majority we are all relieved right along with you. Everyone gets frustrated beyond belief with this condition. Sometimes it is extremely hard to deal with and other times it seems to be a little more manageable. I am very happy to say that I'm excited that you have narcolepsy! No, not in the way that yay congratulations, but more like I'm glad you know. I'm 23 man, so i know how it is to be young and find out. I'm so glad that I did find out at such a young age. I feel so bad for some that I've met on here that didn't find out til much later in life. That would be horrible to try and go through life feeling like this for much longer and not knowing what is wrong. I was about to give up on life before I found out what was causing me to be such a mess. So anyway, I'm just trying to say that we're all here for you whenever you need to vent or if you're having a good day.

I take Zoloft for the depression, but did you also know that antidepressants also suppress REM? I can't imagine how I could possibly dream any more than I already do, but that's what they say. Plus it helps with sleep paralysis if you get that sort of thing. and I don't mean just Zoloft, but antidepressants. and I can't afford Provigil either really, so I just take ritalin which sucks! It doesn't last long at all most days, but then again there are good days and bad days where on the good days it works even better. I still haven't figured out how to work this illness.

and yay for graduation! We're proud of you! and Welcome.

BTW, my dog is panting and has bad breath! ahhhh!

#4 Sera Bishop

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Posted 30 August 2009 - 04:40 AM

Chris and Irishhh --

Thanks so much for your responses! Fortunately yet unfortunately, I've actually dealt with this process before, and I know it will be much more manageable the second time around. When I was 19 I got a different, initially 'tragic' diagnosis --- and was a part of the support groups/boards for 4+ years. I've learned I do have decent coping skills and a great support system... but I know for certain I'm going to go through the stages of grief like anyone would getting this diagnosis - even though for years I've been trying to figure out WHAT IS GOING ON.

I take Effexor XR for depression. I think my Narcolepsy went undiagnosed because of that - people attributed it to the depression. I knew it was something more because I've not BEEN depressed and still seem to be getting progressively more and more exhausted.

My psychiatrist gave me Provigil a good 2 years ago to help me get through my days in college. I cried for a week it was such a miracle, and dropped out of a class I'd been struggling in because it just wasn't fair to not have a good start to the class. Looking back, I'd also go around telling people - they prescribe that for people with Narcolepsy!!! (DOH!) Little did I know....

I am lucky enough to not have ANY other symptoms besides EDS. I don't even really have cloudy concentration abilities - and I never fell asleep in class. I rarely fall asleep during movies at home (though it's more likely if I'm laying down), or even while reading books. I don't have any hallucinations, nor any symptoms of cataplexy. I'm just persistent enough to know I don't deserve to live my life this sleepy without knowing WHAT is going on.

What I'm currently preoccupied with is... healing and forgiving myself. I know people looked at me as lazy and/or unmotivated... and I am sad to say I started to believe it myself a bit. If ever there was that laziness - it was due to being FED UP. But at the same time I just KNEW that WASNT it. I feel a lot of people owe me an apology for that, and although I don't expect it - I'm making it known (to myself at least) that I feel that way.

I did get assistance from a fabulous counseling center at my school - and was registered as a student with a disability. Part of me felt like I was cheating, because besides anxiety, I didn't know WHAT the disability was. I will be contacting them again to THANK them for helping me cope withan unknown disorder and successfully graduate (even if just barely).

I also plan on emailing 2 of my professors that I had a difficult time passing classes with - and give them an update. They were great professors, and supported me to the best of their ability, but I sensed they perceived that I just wasn't going to make the 'cut' and that they too thought there was laziness involved somewhere. The professor student relationship was often strained with frustration on both sides. I think they'd be interested to know what was actually fueling my disability and maybe, as my aunt said, they too need a WAKE-UP call (hardy har har).

I can be rather long winded... thank you both so much for responses... I look forward to sharing information and supporting as well as receiving support. I'm sure it will be a bumpy ride for a while. (It's 4:30 am!!!)

sera :)

#5 Toph4er

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Posted 30 August 2009 - 07:39 AM

Haha, I think you ripped off my story, right down to how N affects you! But seriously, I know exactly where you are and how you feel. I guess that makes it a bit hard for me to elaborate because not much is different...other than I am not taking meds anymore and doing alright.