214 replies to this topic

[Lovemyhusband]

Hello everyone I noticed we have lots of new users but I didn't get a chance to meet you all.

If you have a moment introduce yourself. I'll go first.

My name is Clara, I am a PWON married to a wonderful PWN. Andre (finally) was dx'd in January 2008. It was about time, someone besides the two of us, noticed it wasn't depression. We have two wonderful children and have been together for an amazing 18 years.

OK now its your turn. I'm all ears/eyes

[Ronda]

Hi. I'm Ronda, and I was just diagnosed 3 months ago. I am relieved to have a diagnosis and some good suggestions and medications to help me cope. I had no idea it was Narcolepsy because I don't fall asleep while I'm in meetings or talking to someone. I laughed at first, thinking it was a joke. I thought of N as hocus pocus and way out there, but lucky me, I now understand that there are all types of symptoms and not everyone has the same ones. Wierd. I'm still adjusting.

[sleepysleepy]

My name is Julie and I was recently diagnosed with N (Jan 2008). I feel like I have similar symptoms to Rhonda. So I just have to deal with the EDS and the lovely habit of night time bingeing!!! Actually I hate that part the most! :x It's been quite the adjustment and for the most part people just don't understand, especially my family. I'm only 23 and I fear it will get worse.

[Lovemyhusband]

Hello Ronda and Julie it's nice to have you join us.

Julie--Just live in the moment, don't worry about your symptoms getting worse since there is plenty of time for that later in life.

Family can be the hardest to get to understand about N. They all think they know you and put the "your just overworking yourself" or "your lazy" tag on you and don't really want to understand the condition. I have found that not letting their hogwash non-medical opinions get to me helps both me and Andre.

BTW Andre is a big night time binger. I was hiding all the candy but recently ran out of hiding spaces. The kids are now in on the game of "lets keep the junk from daddy" game.

[greatbig47]

I'm Stu...
And when it comes to the art of Narcolepsy, I'm a ninja!
I'm a a sleeping, Black belt master!

Okay, okay...
I'm not REALLY all that, but I work towards it everyday, probably like you too. We learn together, right?

It would mean a lot to me if you read this post on my blog... :!: :!: :!:

Thanks!

-Stu

[Lovemyhusband]

Hello Lisa

I'm glad you took the time to say hello. I try to check in everyday as well. I hope to chat with you soon. Did you choose a wedding date yet? I got married almost 13 years ago and it was such a blast. More of a big party after a boring church visit .

[gladtoknow]

Hi. I'm Debbie and I'm 41. I was dx N w/o C in Nov 2007 after 20+ yrs of not knowing what was wrong w/me. I'm a single mom to a beautiful 8 yo (soon to be 9) and we will in western NY.

[Lovemyhusband]

Lisa, Sounds like a good plan. Keep us posted. I loved planning my wedding. I think I have the record for ticking off the most people because I am not a traditional kind of person :shock: . It was lots of fun though .

Hello Debbie, I'm glad you stopped in a posted. I have an 11 yr son on the edge of 12 and 5yr in three weeks 6 yr daughter. I have the upmost respect for single moms, I don't think I could handle it on my own. We live in NY , about 20 mins from Albany.

Talk with you all again soon

[sleepyavon]

Hi, my name is Rachel, and I am a PWN, but I also live with the pain of fibromyalgia and RA. I am 27 now, but my body feels so worn down all the time, like I am in my 60's at least. We just lost our house, so live has been really difficult. I am so happy to have a place online for all of us to gather and talk, free of judgemental persons who know nothing about narcolepsy. If you like you can check out my Myspace and YOu Tube Pages, just look up my username on both of them... discuscatcher.

I wish for life to get easier, enjoyable, if possible. I want to move without pain. Often, the sleep attacks I get throughout the day are wonderful escapes, but when the pain is too much, I keep waking up. I love Xyrem, it lets me sleep!

Well, it is so nice to meet everyone, and I hope one day, none of us will ever have to worry about making ends meet.
Love, Rachel

[Toph4er]

Hey, I'm Chris, aka Topher, and I was dx'd 3 years ago (?) at the age of 16 after a few seizures, double-vision, a bad doctor, and then not being able to stay awake...y'all know the deal right? (Hopefully minus all 4 counts ) A little over two years ago I founded a support group online to help others and as well as myself, of course. As much as narcolepsy sucks, I am always one to look on the bright side of narcolepsy, for everything it has taken away, it seems to have given more back . Currently I'm pulling my hair out (though not as much as my mom) looking at colleges...the choice is so hard!

And sleepyavon (discuscatcher) weren't you on my site at some point? We miss you!

Chris"Toph4er"

[Lovemyhusband]

Hello Rachel and Chris. Welcome aboard.
I hope you both come back and check in once in a while.

[Toph4er]

I'll be here a bit since Stu asked me to help out . I love being able to reach out and help others, nothing makes me happier.

Chris"Toph4er"

[kogeliz]

Hiii,

I'm Liz. 27 year old female from Boston (moved here from Tampa Bay)
I was finally diagnosed when I was 23 after a lifetime of sleeping constantly, weak muscles, slurring, some (usually) non-frightening hallucinations.

I have always worked full-time and have horrible attendence and punctuality... which is not very fun.

My medications are currently Provigil and Xyrem.

I try to have a sense of humor about my narcolepsy... and also don't mind explaining to people because otherwise, people would just assume it's what they see in the media and not understand it correctly.

Annnnnd........ well, that's about all.

Nice to meet everyone!

[Julie A]

Hi everyone.
My name is also Julie. My N goes back as far as I can remember with first CAT attack at 6 years old. Definitive diagnosis at 13, then again at 16. I decided to go off my medication at 16 due to the fact that all that was available 10 years ago was major stimulants. I HATED THEM! Now, at 25, my N has gotten so bad that I stopped working and driving 2 months ago. I began seeing a Neuro again last week. I will begin treatment next week.
My husband has always been very understanding as he was the one who drove me to my 2nd sleep study at 16. He made my CAT attacks in public less embarrassing and keeps track of the kids while I nap. It has been 6 years since my last CAT attack. But my EDS is unbearable. My life has been ruled by this for too many years.
I am curious and excited to see what life is like while being treated. Provigil and Xyrem is the plan.
I am so excited!

[Cryopathic]

Hi People,
Im Tony, Im From The The UK.
Im 14.
I was diagnosed at age 6.
Pleased to meet everyone here.
I was at the last NN Conference in April.
I recomend you go to the next one.
Amazing.

[ltanyaperry]

Hello my name is Tanya. I was just diagnosed with N about 6 mos ago. I have been misdiagnosed for over 10-15 years. I'm glad that there is a place to go to and everyone knows at least one thing you are going through. No one that I know understands what I am going through. I look forward to talking to everyone!

[Shooze]

Hi...I'm Ann.

I had my first symptoms at age 8 - that was in 1969 before there were diagnostic tools or specific medications. I was mis-diagnosed as "hyper-active" which is the modern day ADD. I went another 29 years until diagnosis and treatment. I'm now 46...maybe the old lady in the group!

I have EDS, HH, Automatic Behavior but have never had sleep paralysis that I recall. Minimal Cataplexy if any at all...my doc says I have it, I'm not sure. It's in my face which I can't see . I also get weak in the knees when laughing allot, but I know people who also get this way who don't have N. June bugs make my legs weak. I ask that all warm-blooded friends or anyone else for that matter to KILL a June Bug if you see one. I will be forever indebted. And Mr. Tony...no tricks with June Bugs if I see you at future conferences. 14 year old boys are prone to paying little games on old ladies. Besides, the next conference is in the fall...long past the life span of a useless June Bug.

I also have REM Behavior Disorder - this is the sleep disorder where a person hits their bed partner or flails around the room, knocking things over. I'm well medicated so haven't had any "incidents" in over 7 years. I used to be a walking human bruise.

Enough for now. Thanks to all who have introduced themselves.

[Lovemyhusband]

Hello Everyone, I am sorry that I didn't greet you all as you posted. I was out of town for a much needed getaway . I was very excited that you all took the time to share.