>>I'm here with a good friend of mine, Becky, who has narcolepsy and we're
going to talk to her a little bit more about it. So when were you first
diagnosed with narcolepsy? >>Probably it was the end of my freshman year of
high school and I was, had good sleep habits. Like I had younger siblings so I
still went to bed 9 o'clock at night, 10 o'clock at the latest. And I was still
so tired, like, I would come home from school and I would take a nap right
away. And I was playing soccer, so, sometimes I'd be at soccer practice and
then take a nap, wake up and go to my next soccer practice. And, I was also
falling asleep in a lot of my classes. We went and saw Finding Nemo and I fell
asleep in it, and I wasn't tired, it was the last day of school, I was super
excited to be summer break. And then I went and saw it a couple of weeks later
and fell asleep almost the same time in the movie again. For only like 10
minutes and then I woke up, so that's when I realized, why am I so tired? And
then I, my parents just kind of thought I was being a lazy teenager and then I
started to show the signs of cataplexy, where you lose muscle control during
strong emotions. So when I'd laugh, my mom started noticing my facial features,
they kind of like droop, because you just can't control them, and my neck
would, like, drop. And she started noticing that, so that's when we decided to
go to a doctor. So we went to a general practitioner that we'd never used
before, and we told him my symptoms, and he's like, have you done drugs? And
I'm like, no, I've never done anything. I had never even drank alcohol at all
yet. And he was like, so you've never done this, this, this, listed like ten
drugs, and I'm like, no, no, no, no, and he's like, then I don't know what you
have. So then we went to my pediatrician and we told him like, she's tired all
the time and she loses muscle control and he was like, I think you have
narcolepsy. And then I went to a pediatric neurologist.
>> By the way, she's like, you can't drive anymore. And I was like, right when I
got my permit, so I was really upset about that. And then I did the EEG and 24
hours sleep study at a center and lastly they did an MRI on my head and then I
got diagnosed with narcolepsy.
>> What is it like to live with narcolepsy? It's kind of just something that's
always in the back of my head, like and my parents, and my fiance, like
whenever I'm going to drive anywhere they're like make sure you're not too
tired. Every day is different, like sometimes I'll have to take a nap at 2
o'clock or sometimes I'll want to take a nap at work like at 10:30 in the
morning. And usually when I do take a nap I really only need to sleep for like
ten minutes and I'll feel refreshed. So I'll just literally lay my head down on
my desk and I'll fall asleep in like 20 seconds and I'll set a timer, and then
I'll wake back up. Luckily, at my job I have right now, I have my own office so
I'll just like close the door to my office and just lay down on my desk. But
it's something I always think about. Like, the other day I wanted to like rush
and go to the gym and then rush and meet my mom somewhere, and it was kind of
across town and I was like, can I drive? Like, should I lay down for 15 minutes
and take a nap? So I always have to think about that. When I was working at my
job before this I was like clocked out on a break and I went into like a back
room and I set my timer and I fell asleep in like a chair, like this. And my
boss came in and she suspended me for taking a nap at work. And I was like, so
upset. I was like, here's my timer, it was going to go off in like one minute.
>> And I was like I have narcolepsy which I wrote on the application and then the
next day I brought my note from my neurologist that said I have narcolepsy and
they like paid me for the hours that I missed and everything but I was very
upset when I got in trouble for taking a nap.
>> Is there anything you want to tell people about the disorder. I kind of want
people to know that there are a lot of different levels and like extemetires of
narcolepsy. Like a lot of people when I tell them I have narcolepsy they're
really surprised and then they bring up that one Deuce Bigalow movie where the
girl's like trying to bowl. And I guess some people can fall asleep like
mid-sentence but I can't, so it sometimes, it kind of annoys me that people are
like, oh, can you fall asleep right now? I'm like, no, I can't. If I try to
fall at any time I will but not while I'm doing something. It really bothers me
when people that, I guess don't know I have narcolepsy or forget I do Think
it's funny when I do fall asleep somewhere. And I guess another thing I want
people to know is a really odd symptom of narcolepsy is that it's really hard
to sleep at night. because I guess since you go into REM sleep so fast that I
never sleep for more than like three hours straight. I always will wake up So
I'd like get a good nights sleep but I would wake up at least like ten times a
night, and just be awake for like a minute and then I'll fall back asleep.