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#241 Hank

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Posted 02 May 2014 - 12:53 PM

If you were not a good mom, your son would not have a diagnosis, he would be sinking in school, and you wouldn't be here learning and helping others.

Or, maybe he is reacting to something at home......again, just kidding

#242 kontxesi

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Posted 03 May 2014 - 03:18 PM

My name is Victoria. I was just diagnosed with narcolepsy on Wednesday. I'm going to turn 26 next month, and my symptoms started when I was 12-13, as best as I can tell. They started treating me for depression when I was 13, and I had my first sleep study around that time.... But they were just looking for sleep apnea, so nothing ever came of it. I had another test two years ago, but again nothing.

 

Anyway. I went from really excited to FINALLY have a diagnosis, to crying about what my life could have been if this was caught and treated correctly from the get-go, to feeling somewhat ambivalent today. My doctor started me on meds right away and they do seem to be working, so here's hoping I can get my life on track.



#243 Hank

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Posted 03 May 2014 - 03:59 PM

I get it - completely. I bounced around the 7 stages of grief and eventually landed on acceptance. Don't resist what you are feeling- but don't cave into it either. Just know that things will be alright.

I was not diagnosed until age 45. I get regret. But I have also enjoyed my life and will continue to. Any of us could have been hit by a bus years ago. What we have experienced makes us who we are. You will use this experience to help yourself and help others- in time. Just take good care of yourself physically, emotionally and spiritually.

#244 ColleesiMotherofSloths

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Posted 29 May 2014 - 01:58 PM

Hi, I'm Colleen, 21...I was diagnosed December 2012 when I was 19 in my sophomore year of college. I love sloths, they're my spirit animal! I'm in school for game design and development. My symptoms are getting worse so I came here to talk to people who understand...no one in my life really understands...you know? :( I want to learn how to cope with this better. I feel kinda lost.

#245 jaybird

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Posted 29 May 2014 - 02:11 PM

Aloha, Colleen and everyone else. This is my first post on this forum too. I looked for another sub-forum for new members or introductions or whatever but, couldn't find one. So, Hello. I'm Jay. Undiagnosed. Untreated. And getting worse.

 

Until about 6 months ago I didn't know that Narcolepsy with Cataplexy existed. Now, I'm feeling both relieved and overwhelmed at the same time. I understand.



#246 ColleesiMotherofSloths

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Posted 29 May 2014 - 08:21 PM

Hi, Jay. I've been there and I know how you feel...you should schedule a sleep study as soon as you can. My life was hell before diagnosis.

#247 rayraybaybay

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Posted 30 May 2014 - 12:29 PM

Welcome Jay and Colleesi! I hope you guys find support, knowledge, hope, and friendship here- I know I did.



#248 Kriqit

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Posted 02 June 2014 - 08:34 AM

Well, my name is James, but you can call me Kriqit (pronounced Cricket). I have no definitive diagnoses other than a neurologists hunch and my symptoms matching. I joined because I can relate to almost everything here, and how being tired is possible for a 22 year old. Sleep specialist appointment coming, though.

Hope to make some friends, and if anything, learn a bit about such a rare thing.

#249 ColleesiMotherofSloths

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Posted 02 June 2014 - 09:02 AM

Hi, James! I haven't been here long but it looks like you came to the right place...let us know how your sleep appointment goes!

#250 emmmyb

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Posted 02 June 2014 - 07:03 PM

Hi guys! I'm Emily. I was diagnosed about 4 months ago with N w/o C. It only took one MSLT for my doc to confirm the diagnosis (average 3 minutes 5 seconds even had accompanying hallucinations).

I'm 20 years old, trying to balance college work (I'm an aspiring scientist) with all of my N symptoms! That's why I'm here; learning to cope. And hoping to make some internet friends who understand what I'm going through :)

#251 Hank

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Posted 02 June 2014 - 07:58 PM

So glad you got a dx so quickly. Take good care of yourself

#252 rayraybaybay

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Posted 05 June 2014 - 11:25 AM

Welcome James and Emily!

 

Best of luck with all of your health concerns, and keep posting.

 

The more this community grows, the more support and knowledge we'll all have to benefit from.   :)



#253 tlhart83

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Posted 08 June 2014 - 02:30 PM

Hi'dy.

 

I'm Tiffany. Diagnosed in Sept 2013 N w/o C based on the sleep latency, I had one SOREM, and the history of hh and sp. After the diagnosis and reading about n, I did find a lot of explanation for the strange things in my life and am relieved that there is an explanation that isn't paranormal and whenever those symptoms turn up I can say to myself chill out it's just the N.

 

I feel really silly or like a hypochondriac  when reading some of the posts because I'm like OMG ME TOO, meee toooo.



#254 purpley

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Posted 08 June 2014 - 03:03 PM

Hi'dy ho! Welcome!

#255 everythingthatshimmers

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Posted 08 June 2014 - 03:15 PM

Hi Tiffany, our situations sound very similar. I was diagnosed in April after an MSLT I didn't realize I was going to be having (I thought I was having the PSG only--office sent me the wrong paperwork, you can imagine my surprise when I realized I was being tested for narcolepsy, much less being told I had it.) It's been a very confusing time. My sleep latency was around five minutes (most were 2-3 with one outlier) and one SOREM as well. I also have HH and occasional SP. So anyway, welcome. I think you will find these boards helpful, I certainly have.



#256 katehawkett86

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Posted 10 June 2014 - 07:37 PM

Hi all im Kate - diagnosed 2 weeks ago with N w/o C after 2 psgs and an MSLT in which i had 3 SOREMS and an 8.5 minute sleep onset average. Still waiting for meds to be approved but feeling better about it all :)

#257 Hank

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Posted 10 June 2014 - 08:11 PM

Congratulations- so glad you finally have your answer. I hope you start getting some relief.



#258 Lindseyleeee

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Posted 17 June 2014 - 02:25 AM

Hi! My name is Lindsey Lee, but I go by just Lindsey, too. I was finally diagnosed with N and C in April, just before my 19th birthday. It was amazing to finally have real words to go along with what I was feeling! I just finished my first year of college, and I am on my summer break, so I've recently been on Zyrem, almost 3 weeks now. I take 20 mg of Adderall xr and either 75 mg or 150 mg of Nuvigil, depending on how busy the day is. I also take 5 mg of Adderall ir, 3 times a day. I'm up to 3.00 2x a night of Zyrem. I live in Alabama with a whole bunch of family and an amazing group of best friends and my boyfriend. I'm so happy to be a part of the Narcolepsy Network!