Narcolepsy, a chronic sleep disorder that causes overwhelming daytime drowsiness, sudden extreme muscle weakness, or hallucinations just before
falling asleep or waking up. The first descriptions of narcolepsy were reported in Germany
in the late 1800s. Shortly after, French physician, Jean-Baptiste Gelineau,
coined the term narcolepsy and recognized it as
a medical diagnosis. Today, narcolepsy affects
an estimated 1 in every 2,000 people. That's 200,000 Americans and
approximately 3 million worldwide, but it's estimated that
only 25% of people who have narcolepsy
have been diagnosed. My name is Anthony Padilla and today I'm going to be
sitting down with people living with narcolepsy
to learn the truth about this highly
misunderstood disorder. Do those with narcolepsy tend
to live their waking hours with little to no hindrance or does this disorder leave them
feeling paralyzed by the fear of what might happen if they're suddenly overwhelmed
with drowsiness or muscle weakness at
the worst possible moment? Hello, Lauren. Hi. -Nate.
-Hi. -Janise.
-Hi. Thank you so much for coming on here and teaching me about
the world of Narcolepsy. I'm excited to share it. What do you consider yourself,
someone with narcolepsy, someone who is way more tired
than they wish they were? Generally, a person with narcolepsy. People living with narcolepsy. Yes, but thankfully
I am on medication to keep me awake and productive, but it's also my excuse to
not have to stay at work in the office till 10 PM
because I need to drive home early. Smart. Can you explain what
narcolepsy entails? Narcolepsy is a rare sleep disorder. The body fails to regulate
its sleep-wake cycle. There are boundaries between sleep state and wakefulness state, but because a person
who has narcolepsy the boundaries are so blurred, the person cannot regulate
their own sleep-wake cycle. They sleep when they don't
want to fall asleep. For the average person,
it takes them about 90 minutes to get into REM and they're there
for about 15 minutes. For me, during a sleep study
that I took, I can get in there in five minutes and stay there
pretty much all night. I look like I'm dead asleep. My brain is actually super active,
so I wake up exhausted, even if it looks like I got
a solid eight hours of sleep. What type of narcolepsy do you have, specifically?
What symptoms do you have? I'm like a zombie all day, sort of disoriented, dizzy. I could fall asleep
while standing up. So you constantly feel like
you have just pulled all-nighters and ragers the previous nights? Yes, a lot of ragers. [laughter] Great, you got to have
that experience without -the fun.
-For me, I can sleep seven to eight hours a night, normal hours of sleep at night, and I still fall asleep in the daytime and then cycle repeats again and again and again. It's like I'm chronically
sleep-deprived. A lot of people don't really understand this symptom. It's called cataplexy. Cataplexy is the loss of muscle tone. During your REM sleep, your muscles are supposed
to be paralyzed. Your muscles are supposed to lose
muscle tone because it prevents you from
acting out your dreams. Flailing, fighting someone, punching the person that might be
sleeping next to you in bed. Cataplexy is almost always triggered by strong, positive emotions. So one minute you're laughing,
the next you can't control your arms? Yes. Cataplexy is not necessarily a full-body collapse. It can just be your hands feeling floppy or even
your eyelid drooping, your knees buckling, or it can be generalized. The full body collapse that
you usually see. I have narcolepsy without
cataplexy, so for me, it's just excessive
daytime sleepiness. When I'm not on my medication, I will fall asleep whenever,
wherever. Sometimes I'll be in that weird
sleep-wake state. It's happened to me in class and
even while driving sometimes where I'm completely aware of
everything going on, but my body is just not really there and I'm also hallucinating. That just suddenly happens
out of nowhere? One of my most vivid memories of it happening, I was in class and I remember
sitting there taking notes. I saw my professor writing things
on the whiteboard, but I also saw people coming
in and out of the doors and the things on the whiteboard moving.
I was just zoning out and I knew this is not right, but at the same time,
I couldn't move my body enough to stop it from happening until one of the guys sitting
next to me, he's like, "Are you good?" Can you recall the first time
you experienced what you now know to be narcolepsy? Elementary school. Teachers used to tell me, "Get up, Nate. You're not supposed
to be sleeping in this." Originally we thought, "Oh,
it was just me sleeping. Being really tired and stuff
I just need to be more physically active, but in reality, it was just literally me
not being able to stay awake. In middle school,
I also got strep throat a lot. I remember being sick
in bed sometimes and having that same kind of
hallucination. I was dreaming,
but I was also awake that my cousin was coming
into my room and just, I remember my mom
handing me a wet cloth, but it came at me in slow motion. I thought that was kind of weird, but
never really said anything about it. Can you recall any big moments
in your life that were clearly shaped by
having narcolepsy? By the age of I think I was 12 or 13. It got really bad. Every school year,
I would learn how to get around with it. Scheduling, when is the time
I can sleep? Scheduling, when is the time
I have to stay up to study? How'd you get through that? Oh, I actually dropped out of A levels. You almost would have to, if you didn't know
what was going on or you had no answers for
any of these issues that you were dealing with, right? They finally thought, let's just let her drop out of
A levels because I don't think there's
any way she can manage it I just didn't know what to do
at that point. Did you put a lot of blame
on yourself for not being able to keep up? I really did. I blamed myself.
I was like, why is this happening?
Why can't I control it? When I was first getting
my first official job, I'd get very tired, very easily. I had this one person what's called a snail. -That's a human name for snail.
-Yeas, snail [laughs] She got really mad at me
and being like, "You're not supposed to sleep,
stop sleeping on the job, get back to work." I honestly felt more mad about
myself and about the job. I really took it more personally
than I probably should. I thought to myself, I was like,
"Why am I like this? Why do I keep falling asleep? Why can't I just be like other people
stay awake do the job?" I very held myself very much
accountable for my actions Having to consider my drive. I went to school in Orange County
and I was interning up in LA. Every time I drove home,
I called my mom just so I can talk to her and have some stimulation while
I was driving to keep me awake. Was there a fear attached to that drive, thinking that at
any moment you could fall asleep and put your life and
other people's lives at risk? Yes, and I feel bad things,
but it did happen quickly with two experiences
but thankfully for both times I had friends
in the car while I was driving.
I just slowly, but like, I'd be in the far left lane and I'd hear the bumps underneath
my tire and they'd be like, "breakups." I'd get up and then usually I'd pull off and
they would finish up the drive. Probably times we were to
switch up the seat -a little bit.
-Yes, you're not driving anymore. Before we continue learning about
the world of narcolepsy. No, you cannot control sleep attack. Sometimes like microsleep, you don't even know you're in one
until you wake up like "What did I just do?" I'm so happy to announce that
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narcolepsy awareness and research to find a cure and shorten the gap between symptoms
and diagnosis for this disorder. If you want more information, or if you want to make
a donation of your own, which I would highly encourage, I'll go ahead and include
a link to Wake Up Narcolepsy in the description below as well. Now back to the world of narcolepsy. Before you were diagnosed
did you feel like there was something wrong with you? Yes. I knew there was
something different. The day I burned myself, that was the big moment like,
"Janise, you got to take it seriously." I wanted to cook noodles and
I lit the wrong stove. I didn't realize the handle
of another pot was over that stove. I grabbed the handle lift it up
and I was like, "Hey, what is this feeling in my hand." I just feel pain but at the same time
I just thought, "Wow, this is weird, it's stinging." I remember my mind feeling
really really foggy and disorientated at that time. You fell asleep while experiencing
getting burned. When I woke up to that
excruciating pain I was like, what just happened?
My sister came in, she felt the handle. She was like,
"It was hot how did not realize it." I was like, "Oh my gosh, I think something
is seriously wrong here." That was the turning point for you. That's where you knew
that you had to get a proper diagnosis for this. It was crazy for me because it was the same feeling I had when I almost crashed into cars
while driving. I did not put two and two together. I just thought that I'm terrible at paying
attention, or I'm just a bad driver. When were you diagnosed
with narcolepsy? 12, 13 right around the time that
I hit Middle School. I was diagnosed
my sophomore year of college. I did an overnight sleep study so
I stayed at this clinic overnight and then they made me take
five naps throughout the day while having electrodes and
everything, all over my head. That's when they discovered
that I get into REM very very quickly even during
the 15-minute nap. I would fall asleep and
at first I thought I can't force myself to take five
scheduled naps throughout the day but they put me in my room and
I'd pass out and I'd quickly go into REM sleep. Went to see the sleep doctor
after I got the results after my sleep study, and she told me, "You do have 40% to REM sleep." Normal people only have 23% REM sleep
in the overnight time. Then she told me about
this sleep study results. She was like, " Yes, these are
very definitive for narcolepsy and judging from your experiences of
muscle weakness it's probably narcolepsy
type one web cataplexy." I was like, "Yes, I'm not crazy." You finally had confirmation from a medical professional that it was not all in your mind. I was like, finally, for the first time it's not my fault. How did you feel knowing that
there was a word for what you had. I'm going to be honest
I didn't believe it. I really couldn't believe
it was a thing. I really was just tired. I didn't actually think
it was a condition. I knew at that moment, my life was definitely going
to improve because I'm finally going
to get treatment that actually works because I was misdiagnosed with
a lot of conditions, especially mental health conditions. Were they feeding you medications and such? Yes. I was misdiagnosed with
bipolar disorder and they treated me for it. Did you constantly have the hunch that you were being
misdiagnosed every time? Yes, I actually did. I knew something was wrong, the psychiatrist said something
that really damaged me for the next five years. He got this DSM, he opens to
the page conversion disorder. He handed it to me.
He was like, "Janise, I want you to read this conversion disorder
out loud." Conversion disorder is when
your psychological stress manifests itself in physical symptoms. He basically said that what
you're experiencing was like the placebo nocebo effect where you believe you have something, you believe
something's wrong with you so, therefore, it manifests itself in your body, as that negative thing. Basically your stress just taking it out on the body. Straight to my face, "Janise, I want you to believe you have
conversion disorder because I don't want you
to go doctor shopping and look for a diagnosis." He said it in front of my parents,
my aunt. I was like-- Waoh, that labeled you there
as someone who had no autonomy over their own life, basically. I was so angry.
I just left crying. I wanted proper
answers but nobody's believing me. Do you feel that
narcolepsy has an overall negative
stigma surrounding it? I was definitely a bit judgmental once I got
the diagnosis because I would fall asleep and
I love being productive. I'm a very type-A person. When I would have scheduled. Get home from school this time, I'm going to do this work and
have it all planned out. When I would be doing my homework and all of sudden I wake up and it's three hours later and
not much has gotten done, I would get really, really frustrated
with myself which did, in turn, lead to anxiety and
just extra stress. While other people
in your life didn't shame you or guilt you for not being as productive,
you were -in some way shaming yourself?
-Yes. People think you fall asleep randomly and you're just lazy. To say that people with narcolepsy
are lazy that's just not true, guys. I guess people underestimate
how powerful the sleep attacks are.
They think you can control it. When I say I feel so sleepy,
they just think I'm not sleeping well enough
and I just need to do exercise, I'll be fine.
I can manage to control it. No, you cannot control sleep attacks. Sometimes narcolepsy,
you don't even know you're in one until
you wake up like, "What did I just do?" How does your
day-to-day life differ from someone who may not have narcolepsy? I'm so sleepy I function like I'm drunk. Scientifically, being extremely tired is
very similar to being drunk. You experience that drunk feeling when you're not wanting
to feel those feelings frequently throughout
the day every day. Yes. The drunk sedated feeling.
Even if I force myself to stay awake, it's still pretty dangerous
especially when you're cooking or driving because
your reflexes are slow, you will not respond as
quickly as you would if you were fully alert.
You may miss cues or signals that could be like,
"Hey, dude, your life is in danger.
You can't pay attention." You cannot pay attention
because you're just so out of it.
You're like a drunk person. Are you able to control any of your symptoms or sleep attacks
or anything like that? Is there anything
that you do that -does help?
-I just mainly stay very active. I'll be doing hot push-ups off of the cash register. In the middle of your job, you'll just start working
out to stay awake? Yes. Just physically working out because I can't just feel like
throwing my hands everywhere. [?]
[crosstalk] People are going to be like,
"Wow, that dude really is in the fitness. That guy wants to get his pump on in
the middle of working at target. That guy is serious about health." My sleep specialist
has mentioned about diet. I've been experimenting with food lately with my diet. What foods are going
to make me sleepy, what foods are going
to keep me awake? I managed to do that for maybe four days. I love my carbs.
I'm not going to give them up. I'm just going to eat
whatever I want. I need my rice. I need my bread. I need my bananas. I'm Asian, there's no way I'm giving up my rice and I realize, yes,
I just like to up my medication but that's all I have to do. If there were a cure for narcolepsy and you wouldn't have to experience
the symptoms at all, would you take that cure so you can experience
what most people normal is? Definitely.
I would love to be a little test -for me for that.
-You want to be as productive as possible? Also, I told my sister. I'm like, "Ideally, you're still alive
when I go, donate my brain
to narcoleptic research." I don't know if I would,
to be honest. I just cannot think to myself, "Yes, that would be nice.
I would be able to gift up. Narcolepsy is now a part of me. It's a piece of what makes me human. I think that there is this idea,
this perception, of normal but in reality, none of us
really are completely normal. Honestly, if there really is a cure, maybe yes. You don't feel like narcolepsy has enriched your life in any way or
taught you lessons that -benefit you in the long-term?
-I actually feel, not grateful, but it really opened my eyes to the struggles of people with chronic illness. I think in a way, not only did that
make me more empathetic, more caring, accepting, sitting down,
listening to people without judgment, and all that stuff.
It made me less judgmental. Listen, ask questions,
take time to understand, put yourself in their shoes. Do you know if narcolepsy
is something that you're born with or something
that you develop? There is no one reason because
so many people are like, "Well, mine came on after
the flu and mine was this, or I have this gene variant." It's hard because
there is no one exact cause for narcolepsy that
they can't find a cure for it. That's where it's just symptom
management because somebody else could
have it but they could have it for a completely
different reason. Amanda wants to know
if your condition has ever put you in harm's way. I was about 11,
12 years old and I was riding dirt bikes
with my family. I was just riding around the track,
enjoying my ride, and the sun hit me in the eyes, and had really drowsy, like spacey out feeling. I was probably out for
like two or three seconds, in the middle of my drive. I come too, I noticed that I was just driving right off
the path off of a hill. Luckily,
it wasn't a very steep hill, but I ended up tumbling
down the hill, I landed on a tree branch and
the branch stabbed me in the back. One of your first
experiences realizing that this thing that you
had that you didn't have a name for yet
could be dangerous. Like I said, at the time,
I didn't even know it. I just legit thought that
I was just spacing out but now thinking on that, if I really used
to think about it, be like, "Oh, that probably
was my narcolepsy." How do you feel about
the way narcolepsy is portrayed on TV and in movies? I saw a scene. It's a comedy scene about a woman who was bowling and she was throwing
the bowl and she just fell asleep on the lane and
then she started snoring. I saw that, I shook my head.
I was like, "Look, it may not be
your intention but this is one of the reasons why people misunderstand narcolepsy to
the point that if they actually have narcolepsy, they're not going to think
they have it or look for it because of the misrepresentation." I feel like that is a comedy recipe but it also, in your instance,
it was damaging to you because you were misdiagnosed and
misdiagnosed because your only connection with narcolepsy
was through media mischaracterizing it. I saw media talking about
cataplexy in narcolepsy, and I thought, "Oh, full-body collapse."
That's cataplexy. That's the only form
of cataplexy that exists. Yes, I was really a bit disappointed. I wish somebody had talked more about these other forms of cataplexy, microsleep, all that stuff so that we can actually
understand this better. [music] If there's anyone watching who feels like they might
have narcolepsy, but is afraid to go down that path
of getting diagnosed because of the negative
stigma surrounding narcolepsy, is there anything that
you want to say to them? You'll probably
face doctors telling you, you're just being a hypochondriac, you're just exaggerating but let me tell you right here,
right now, your pain is real. You don't deserve to live like this, like feeling sleepy all the time to
the point you can't function. You deserve a better life
to function. That's why I emphasize you got to keep
fighting for yourself. You got to keep
advocating for yourself. Trust your instinct, know that
you are not just making it all up. Janise: I wanted to give up.
I cried because I thought, "Nobody's going to listen to me.
I don't know what to do anymore." I shared a room
with another patient, this lady. She barely knew me. We were in there for five days,
and yet she came to my bedside and she told me, "Janise, I know how you feel and you got to keep
fighting for yourself." She told me that at
the end of the day, it's going to be worth it. Don't give up on yourself. Because of what she said
and her stories, I was like,
"I'm going to get another opinion. I got to find somebody who can actually help me and
get me a proper diagnosis. I don't deserve to live like this." The only person that can advocate for you the way that you know
you deserve to be advocated for -is you.
-Yes. All right. You got five seconds
of shout-out or promote anything you want
directly in the camera. Go. Cheers to Anthony, Jason,
Randy, and Andrew. I made it to YouTube.
What up? Please donate and support
NODSS Australia and www.rarediseaseday.org. Follow and shop my small reusable
products company Rain Reusables. Janise: Please like and subscribe
to Anthony Padilla -and this--
-[laughs] That was great. Thank you so much, Lauren.
I feel like I understand the world of
narcolepsy just a little bit more. Oh, thank you.
It's exciting to get to do this. After spending the day with
these people living with narcolepsy, I've come to understand just how often this disorder is
misunderstood for what it truly is. It's important to remember that
everyone in life has a unique struggle
and we should always be accepting and
supportive because you never truly know what may be
occurring behind the scenes. See you later.
Bye guys. Press the like. [music] I'm glad I'm still awake. [laughter] I'm glad you stayed awake for this.
Thank you. That's an honor.
It's a huge honor. What would you have
done if you did fall asleep in the middle
of the interview? Trying to wake up.
[laughter] You probably would be like, David.
Hello. No, I'd be like,
"This is great content." -Great content.
-Keep your camera [crosstalk] Let's get it right here.
[laughter] There you go.
That's the thumbnail.
