Calling all new users
Posted 02 May 2014 - 12:53 PM
Or, maybe he is reacting to something at home......again, just kidding
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.
Posted 03 May 2014 - 03:59 PM
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.
Posted 29 May 2014 - 01:58 PM
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.
Posted 29 May 2014 - 08:21 PM
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.
Posted 02 June 2014 - 08:34 AM
Hope to make some friends, and if anything, learn a bit about such a rare thing.
Posted 02 June 2014 - 09:02 AM
Posted 02 June 2014 - 07:03 PM
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
Posted 02 June 2014 - 07:58 PM
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.
Posted 08 June 2014 - 02:30 PM
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.
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.
Posted 10 June 2014 - 07:37 PM
Posted 10 June 2014 - 08:11 PM
Congratulations- so glad you finally have your answer. I hope you start getting some relief.
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!
Posted 19 August 2014 - 03:32 PM
I am SleepyMarie (Marie was already taken ), but please call me Marie. I was diagnosed with narcolepsy without cataplexy in December 2004, and I also have restless legs syndrome (RLS), I wake myself up grinding my teeth (that was an interesting sleep study finding), and I have migraines periodically (e.g., none for two months and then 3 in a week). I made it through grad school without being diagnosed, and I have a wonderful neurologist so things have been pretty well "under control" for most of the last 10 years. Anyway, I am happy to be here among people who understand Right now I am trying to work on more natural ways to manage my symptoms and improve my quality of life, including exercising and perhaps a "natural sunlight" lamp for the winter and rainy days. Nice to meet everyone