(lively instrumental music) - Today on behind the mystery
we're talking about narcolepsy.
A condition that affects around 1 in 2,000 people in the US.
- It's often an underdiagnosed or misdiagnosed disorder.
And for one woman it was quite the journey.
(mysterious instrumental music) - [Narrator] Narcolepsy can
be described as struggling to stay awake or nodding
off at inappropriate times.
It can affect a person's ability to work, attend school
and build personal relationships.
Christine has been living with her condition for over
25 years.
- My symptoms started around age 12.
When I was in junior high.
I was falling asleep all day in class.
The other kids were mean, they thought it was a joke.
They would always just slam books next to my ears and
watch me just like jump out of my sleep.
School called for a parent conference.
I was failing in school and to be able to graduate
I had to take night classes.
It affected my social life.
We'd have sleepover parties and like
I would fall asleep right away.
I was doing my homework on the floor and I'd fallen
asleep in my book.
My dad's like, Christine, Christine, wake up!
He was trying to wake me up and he thought something
was wrong with me 'cause he couldn't wake me up and
he got scared.
I started to like wake up out of this deep sleep and
he was like okay, something's just, like, not right.
- [Narrator] Dr. Raj is a Pulmonary Critical
Care Sleep Specialist and has dedicated his career to
helping patients with narcolepsy.
- When I wanna explain narcolepsy, I define
it as a chronic neurological condition.
Where there's a disconnect about day and night.
When we talk about the onset of symptoms it happens
younger in life.
It doesn't care about gender.
So males and females are both equal.
One in 2,000 people in the United States may have
narcolepsy and I gotta say that number is underdiagnosed.
Because of the lack in delay and because it mimics many
other diseases.
It takes almost 10 years, sometimes,
to make the correct diagnosis.
A patient has to, even up to, six doctors
before they get the correct diagnosis.
- [Narrator] There are five symptoms of narcolepsy,
you don't need to have all five symptoms to be diagnosed.
- When I think about the symptoms of narcolepsy, I kinda
put 'um into the big five.
Number one, it's always gonna be excessive daytime sleepiness.
This is the most debilitating.
People during the day, are failing asleep
from irresistible attacks of sleepiness.
Cataplexy, it's when you lose muscle tone.
It could be weakness of the legs, buckling of the knees,
it could be only in the face, it could be drooping of your
eyes, slurring of your speech.
Poor sleep at night, the have multiple awakenings and
arousal's making the daytime twice as hard.
Sleep Paralysis, there's a disconnect between the brain
and the body.
You're awake but your body is still stuck in REM sleep
and you can't move.
Hypnagogic and Hypnopompic hallucinations, your body puts
your mind in this hyper aroused state and sometimes you
see something out of the corner of your eye.
You may see a shadow out there.
It could be scary.
You're not gonna have all five symptoms at the same time.
They could appear at different times in life.
- [Narrator] Along with excessive daytime sleepiness,
Christine also experienced Cataplexy.
- I loosed muscle tension in my neck.
Sometimes my knees will buckle.
If I laugh my face will droop.
Around my family, their really hilarious.
They just make jokes all the time and I'd be like afraid
to hang out with them or be around the family.
Because 'um I lose,
my muscle tension in my neck, so I'd be embarrassed.
- And how scared can you possibly be where
you're just laughing and all of a sudden you can't stand,
your arms not working, your visions getting blurry.
You can't even get the words out.
Christine was telling me very emotional stories.
Where no one knew what this Cataplexy was.
- My nephews and my sister's side of the family,
they really didn't understand because they lived far away.
They just thought that I wanted to be by myself, they
didn't miss spending time with my family.
- Around 50% of patients who have narcolepsy have probably
been undiagnosed.
The symptoms of narcolepsy mimic so many other diseases.
Things like depression, things like anxiety, ADD, ADHD,
so they see many doctors.
There is a resource out there called MoreThanTired.com.
It's a great place where if you think you suffer from
narcolepsy or know someone who has it.
They have a screening questionnaire so it tells you
hey maybe I should go see a physician and on that note
there is a physician finder to find out whose
close to you whose actually familiar with this disorder.
- I went to my family physician and got evaluated.
They did the blood work and it came out clear.
And they didn't understand so then
they referred me out to a neurologist.
And then, schedule the sleep study
because she was unclear of what was going on.
- How do we diagnose people with narcolepsy?
The test we do is number one.
We get an over-night sleep study.
We call that a polysomnography.
We have EEG's attached to your brain,
we're getting your heart rate, we have your movements.
Then you'll pursue what's called a MSLT, that stands for
Multiple Sleep Latency Test, it's kind of a napping study.
So based upon the criteria on how fast you fall asleep,
and how many times you go into REM sleep.
With the right history and physical we can
make a diagnosis.
- So 25 years ago, being diagnosed meant
a week long study.
My parents were very supportive.
They went with me to the hospital and I stayed there
by myself, and was kinda scared.
It's a big white room, with a clear glass mirror and
they hook ya up to electrodes.
My emotions were just confused, didn't know what was going on.
Just waiting for results.
We went back to the Neurologist and they sat down and
finally diagnosed me with narcolepsy.
- [Narrator] Relief can come with finally being diagnosed.
Which is why it's important to be aware of your symptoms and
speak to a sleep specialist if you suspect you have narcolepsy.
- When I talk to my patients with narcolepsy whether it's
before the diagnosis or after.
I wanna give them the confidence that there is a diagnosis,
people out there do suffer.
- So after being diagnosed I felt more positive.
Hung out with family a lot more often.
And not feel ashamed.
A year ago, I got referred to Dr. Raj.
You can open up to Dr. Raj, like a book.
Since there's no cure, for narcolepsy,
Dr. Raj has been really patient.
- When I think of Christine, it reminds me that every
treatment is individualized, every patient with narcolepsy
is unique.
There are certain things that patients need and one
treatment plan doesn't fit everyone.
- Doing the research helped me find some people that have
narcolepsy that understood my symptoms.
Understood what I was going through.
Because they were going through the same thing.
Be your own advocate, don't give up!
- If you think you have any of these symptoms discussed,
visit MoreThanTired.com to take the symptoms screener
and find a Sleep Specialist near you.
- You can also visit our website TheBalancingAct.com.
- We'll be right back.