i was about 11 or 12 when i first noticed i had cataplexy. I hid it well for many years until i was 18 when i was collapsing rather than just drooping. I was on a ride at Alton Towers and i collapsed due to the excitment. i just thought it was part of the thrill at the time but looking back it was def cataplexy. I watched that programme as well and its good that someone so young is diagnosed so qucikly at least he wont go through life wondering whats wrong with him.

Had it all since I was 14.

What was the show called? It seems like most of us (on this site) got it in our early teens at the youngest but now it looks like kids are getting it at a much younger age. Wonder why?

I remember my first SP at 12, first noticed EDS at 19, and mild cat at 45.

i had a fairly rapid onset of eds at 37 c a few months later x

Always had EDS and HH among other things-- parents always told me I was lazy. Started noticing C at 17-- doctors all told me it was in my head but finally got my dx of N/C at 23.

Sons cat started around 16 .There were other signs before then.

i was a very hyper child. i was the fastest runner in the neighborhood. then i turned 14 and started taking naps after school. at 17 i was always freezing and sleeping. i was a neglected child.

I was around 35 years before I had any symptoms at all. Prior to that was energetic, very happy, enjoyed life. Thank god my kids were aged 8 and 10 at that time, coz I could not have coped with littleys.

I'm new to this group and wanted to say Hi.

I started falling asleep at school at 13 and cat followed almost immediately...hid the cat from family untill I was 15. At this point I was asleep more than I was awake and had cat attacks whenever I gigggled. I got diagnosed within months. That was 20 years ago. I was on meds until I had my eldest child 15 years ago. I'm not sure why but my narcalepsy eased of and became manageable with naps. Its only since having my youngest child 4 year ago that its got worse again... I cant explain why but my consultant advised that narcolepsy does get better for some during pregnancy. I have changed my life style and started taking meds again just to keep me awake during the day.

Early 20s...as best as i can remember...seems I might have fallen asleep in class in college or even high school a few times...but I thing that was just a few times and due to staying up too late! I have known my husband since I was 15 and he seems to think that 23ish is about right.

thank u all 4 replying , i just wondered how old people were when they first got it, i was looking on a web site from the UCB (they make xyrem) and i read that people with narcolepsy after about a decade or 2 they do get cataplexy , my aim is to find out if this is true or not , and if so , then what to expect , i have done alot of research on narcolepsy and ive read that syptoms do get worse , but that would mean more stimulants to keep u awake , this cant be any good for your heart , because im on dex , and my heart beats faster than usual , does anyone else have this problem

My son's sleep doc told him something like that 90% of people with N get Cs...That seemed awfully high to me. Now Xyrem does have a vested interest in there being a high incident of C...so I wonder, do they count the mild Cs that some of us discribe as Cs? I had only one real couldn't-use-leg C nine years ago. Does tha mean that I am N with C or N without C? My doc says some N never gets Cs, some every day, some only a few times a year, others only once or twice in their lives. I also fear developing Cs...but I figure since I am on Xyrem anyway...it should act as a preventative.

in retrospect, i've had narcolepsy since my very early 20s. i didn't figure out that i had any sort of condition until just last year at the age of 34. i experienced a 10-15 seconds memory loss due to EDS. at that point, i thought i may have had a brain tumor. after researching online, i figured out it was narcolepsy. i'm not sure how long the cataplexy has been going on...at least 8 years or so. before now, however, i always chalked it up to nervousness. additionally, i lived a very party oriented lifestyle throughout my mid to late 20s and always just figured i was so tired because i had been out so late the previous night.

if i still worked in the business world, i bet i would still be oblivious and coping without a huge problem. being a teacher has really stretched my patience, however. without regular naps, my cataplexy gets very bad and is triggered almost constantly after 1:00pm. plus, the emotional reaction to the antics of my students will often set it off. in a corporate environment when i was getting relatively frequent short naps and was rarely surprised by anything, i could go days without a cataplexy attack. now, i experience 5-10 everyday. weird stuff....

It started my freshman year of high school, when I was about 14. Every year it seemed to get worse. My senior year of high school I took a psychology class and the teacher had touched on narcolepsy. After that I was sitting in the library with a girl from my psych class and I fell asleep. When I woke up she told me that I had dozed off mid sentence. After that she joked that I had narcolepsy, I went home and told my mom. We started to look into it but it wasn't until the December after I graduated, I had a really bad car accident when I feel asleep behind the wheel, that we went for the sleep tests and found out for sure it was narcolepsy.