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#261 Cstarr2

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Posted 23 September 2014 - 02:49 PM

My name is Courtney. I am from NOLA but am currently living in Baton Rouge with my fiancé. I was fairly recently diagnosed with N within the past year. I wrote about it on a different post/forum. I haven't been very active on here but recently have had trouble adjusting to living with N and have found myself wishing I had someone to talk to/relate with about it so I found myself back here =)

#262 BeBe24

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Posted 01 October 2014 - 04:08 PM

Hello! My name is Caroline and I'm 22. I just received my N diagnosis today and I also have cataplexy. I've been lurking in these forums for a while and it's been a great help to me in understanding what's going on with me. Was taking Adderall for ADHD, but that didn't help with the symptoms after a while and I ended up getting referred by my Psychiatrist to get tested for N.

 

With the diagnosis, I hope my quality of life won't be significantly lessened and I'm still holding onto the hope that I'll wake up one morning without N. I know it seems ridiculous to hope that, but I can't help it and I guess I'm still in the pre-acceptance stage...



#263 Kriqit

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Posted 02 October 2014 - 02:20 AM

Welcome Caroline! I know the feeling. What gets me through the tough days is reminding myself how far I'd already gotten with the last 8 years of symptoms. I didn't know what it was then, but now that I do, I've got doctors and knowledge to get me even more out of life. I hope we can help you gather up some answers and push along toward a better day. :)

#264 alyj

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Posted 24 October 2014 - 08:40 PM

My name is Aly, I've had Narcolepsy with Cataplexy since I was 10 years old but got the diagnosis when I was 18. Over the years I had to deal with being yelled at for falling asleep when it was out of my control and people constantly saying 'well if you got more sleep then you wouldn't be tired during the day'. My Cataplexy is triggered by fear/being startled, being upset, and laughing. 



#265 Ferret

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Posted 24 October 2014 - 10:15 PM

Welcome Aly!...short for Allison? That's my granddaughter's name and I've always called her alleycat. She will be 16 in January.

You must be a very strong young lady to be dealing with all this and you're just 20 now. I really hope that you're doing well and striving towards achieving your dreams. My cataplexy is triggered by exactly the same things but laughing is number one for me....I really hope that it's #1 for you too.



#266 xNiks

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Posted 26 October 2014 - 08:06 PM

My nme's Nicole--or Niks--and I've been struggling with narcolepsy with cataplexy since I was 9 or 10. I just got diagnosed this year at 20. I'm trying to get by the best I can, but between the medical bills and trying to go to school, well. A little support sounded nice. I got tired of having no one to take to about Narcolepsy! So here I am!

#267 Hank

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Posted 27 October 2014 - 11:51 AM

Welcome to the club

#268 Spotty

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Posted Yesterday, 09:47 AM

Hi, I'm Spotty and I'm from Northern Ireland.  I've been suffering from what was an unknown condition for about five years now until last week when I was given an outline diagnosis of narcolepsy.  I'm now waiting to go into hospital for a full diagnosis.  I have no doubts however.  I've got 15 symptoms matching up to the outline.  To be honest I've had a helluva time with it, mostly because I suffer with other conditions too and there was some dispute over what was causing what for some time.  My doctor was able to identify a scary, extremely low, vitamin D3 cvount in May of this year and I've been medicated for that ever since but although it's taken me away from death's door aqnd I feel a little stronger it's done nothing for my sleep pattern or the hot flushes I get. 

 

I'm a disabled veteran (army) and have real physical problems to contend with as well as the mental issues which come with PTSD and as you know that affects everyone differently.  So by and large I haven't had such a great time this last five years or so. 

 

It's nice to be able to come onto a site where there are other suffers.  What I'm hoping to get here is perhaps a few helpful pointers, apart from the obvious, regarding getting to sleep.  I've got all the leaflets and am still trying to enforce a regime but it's impossible when I die for 12-15 hours every couple of days. 

 

Anyway - nice to be here and I hope to meet some really great people.  :)



#269 Hank

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Posted Today, 04:57 PM

I hope you get your answers. Much of my family is in Ireland- near Abbeyfeale, Limerick.

Do you have symptoms of Cataplexy? Don't say no until you have given it thought.

You will be relieved when you have this all sorted.