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Narcolepsy in Focus: The Future of Sleep Research

Reviewed by Neha Pathak, MD on September 11, 2020

By Lois E. Krahn, MD, as told to Sarah Ludwig Rausch

I've been doing narcolepsy work for 25 years, and there has never been a time with as much activity on as many different fronts. For people who live with this disease, it’s incredibly exciting. I see this every day.

Sleep is challenging to understand because of its very nature. A person isn’t fully aware of their environment or their behavior when they’re asleep, so their ability to monitor themselves and describe what they're doing is limited. People with narcolepsy find themselves switching from wake to sleep and sleep to wake. They’re aware of what happens when they're awake, but when they‘re asleep, they aren't able to describe what they're thinking about or what they're experiencing.

So we have to rely on data questions, sleep studies, and other sources of information to understand the issues. Unlike other fields of medicine, such as psychiatry, where we rely on a patient to tell us what's going on, we need other sources to complement what the person with narcolepsy can tell us. I find it beneficial to be able to talk to family members or close friends who have observed people when they’re asleep and can tell us what happened. We also rely on other lab testing.

Notable Developments

This has been a time of incredible activity in the treatment of narcolepsy. For a long period, we had a set of medications we would use to help people. Then in 2019, the FDA approved two new medications.

One was brand-new and had never been used anywhere. It’s called solriamfetol (Sunosi). The other has been used for some time in Europe and was approved for use in the United States. That one is called pitolisant (Wakix). They also approved older medicine called sodium oxybate (Xyrem) for use in children.

Plus there are studies underway to develop even more. A new form of oxybate salts (Xywav) that doesn't contain as much sodium was approved in 2020. There’s another form of sodium oxybate being tested that’s a once-a-night dose. Right now, you have to take it twice a night.

Getting Clarity on Causes

I think we have a better understanding of the causes of narcolepsy, too. For many people, it results from an autoimmune process -- the immune system attacks brain cells that produce a peptide, or compound, called hypocretin or orexin. There's an exciting research program looking at medicines that boost the activity of hypocretin/orexin in the brain. Those studies are only beginning, but they represent a brand-new possible treatment that may get to the underlying issues that people with narcolepsy have.

Another interesting development was quite recent. In the United States, there wasn't a way to measure hypocretin/orexin levels unless it was in a research lab. Now there’s a commercial laboratory, which happens to be affiliated with my institution, Mayo Medical Lab, that can measure hypocretin/orexin on spinal fluid samples that are sent to them. It used to take a long time to get results, but now it's something much more readily available to doctors, and therefore to people with narcolepsy.

How an Inventor Helped His Exhausted Daughter“Two thousand years ago, Tibetan monks were using singing bowls, which have a very interesting effect on the brain in a natural way, to encourage meditation and a calming effect,” says Michael Larson, PhD. He invented a headband that plays binaural tones to help his daughter manage her narcolepsy. 313

[MUSIC PLAYING]

DR. MICHAEL LARSON: I think

creativity is at the very heart

of what it means to be human,

and we are most in touch

with our humanity

when we are creating.

My middle child, Jessica, she

was a very high achiever,

first chair flutist

in the local youth symphony,

played the piano beautifully,

all A's in school.

All of that suddenly changed

when it became clear that her

sleep during the day

was getting uncontrollable

for her.

I'm Dr. Michael Larson.

And I'm a professor by day,

and an inventor by day

and night.

And my daughter has narcolepsy.



[MUSIC PLAYING]



When my daughter finally got

a diagnosis of narcolepsy,

and I had never heard

of the disease before.

So I began to learn all I could

about sleep,

and how to help people get

better sleep.

Jessica does deal

with excessive daytime

sleepiness from the body's lack

of regulating sleep cycles

properly.

She also has cataplexy, which

is a sudden loss of muscle tone.

Hence typically, someone will

crumble to the ground.

The narcolepsy did lead

to Jessica not having

sufficient deep sleep

during the night.

She would wake up feeling

like she pulled an all nighter,

like she got hit by a train.



JESSICA: I was exhausted, not

sleeping well.

For a while, I didn't know if I

was going to be able to go

to college the way I had planned

originally.

There are just a lot of things

that I had kind of started

to wonder if I had needed

to give up on.



- It's heart wrenching to watch

someone that you love,

like my daughter,

deal with something

as debilitating as narcolepsy.

I earned my PhD from MIT

in mechanical engineering,

and really had my eyes opened

to the idea that if solutions

don't already exist, then go

ahead and create one.



[BINAURAL TONE]



People have been using what we

call binaural tones

for a long time.

2000 years ago, Tibetan monks

were using singing bowls, which

have a very interesting effect

on the brain in a natural way

to encourage meditation

and calming effect.

I have optimized that for sleep

using actual brainwave

measurements in real time

to adjust these tones

in a customized way.



Our group at the University

has put patients in MRI machine,

and looked at the brain

with these tones.

I have a lot of science

to show us

that the special tones really

do help people sleep.

The Sleep Shepherd

is a comfortable headband

that people wear while they're

sleeping.

And it has

some built-in speakers that play

binaural tones.

And in the front

of the headband, a brain wave

sensor, which is constantly

monitoring that brain activity

during the night

will adjust these tones when it

detects that someone is coming

out of sleep to help them get

back to deep sleep.

So the product is designed

both to help people go to sleep,

but also to help people stay

asleep.



[MUSIC PLAYING]



I received emails, phone calls

from all kinds of people

in all walks of life dealing

with sleep issues that include

narcolepsy.

I am clear that the Sleep

Shepherd is not a magic solution

or cure for the condition.

I find that I am able to share

important things

from my own research,

but mostly from dealing

with Jessica

and watching how she deals

with narcolepsy in her own life.



JESSICA: It is amazing.

It has-- honestly it has changed

my life.

I went from barely functioning

and being really sick

all the time,

and I'm about to graduate

from college now.

So it has made

a huge difference.



DR. MICHAEL LARSON: I get

my greatest motivation

from thinking about how I can

help people live better lives.

I can't tell you what

a great feeling that is for me

as a dad,

to know that I've done something

to help my daughter.



[MUSIC PLAYING]

Michael Larson, PhD, and daughter Jessica./delivery/aws/4c/89/4c896b31-371b-4794-8e63-63d4b3e49478/091e9c5e820567d8_narcolepsy-advocate_,4500k,2500k,1000k,750k,400k,.mp411/10/2020 12:00:0018001200photo of woman sleeping/webmd/consumer_assets/site_images/article_thumbnails/video/narcolepsy_advocate_perspective_video/1800x1200_narcolepsy_advocate_perspective_video.jpg091e9c5e820567d8

Better Treatments, Faster Diagnosis

My experience with other diseases is the more treatment options that exist, the more people are encouraged that maybe there's something out there that can help. Rather than just getting by and struggling and maybe not paying much attention to their problems, they’re more likely to seek out help. A lot of people have narcolepsy and never get diagnosed and, therefore, never get treated.

My own personal hope is that more people with narcolepsy and their families will say, “You know, something doesn't seem quite right. Let's see if we can figure out if it's a problem and if there's a treatment for it,” rather than just live with it. Living with it may not be ideal, because if a person falls asleep while driving, that puts them and others at risk. Or they may not do well in school, or they may be having difficulty being an effective employee or parent.

As far as where the research is heading, I think that we're going to have more tools to treat people. Then we may determine that there are different subtypes of narcolepsy. Right now we know about two types: People who have a condition called cataplexy and those that don’t have cataplexy. I personally think there are probably other characteristics that will predict a person’s response to one treatment or another.

And then, as we create more treatments, we may be better able to help more people get relief from their symptoms. I hope we can somehow identify people at risk and come up with ways to intervene soon after onset. Their disease could be less severe because they won’t go as long without treatment.

WebMD Feature

Sources

SOURCE:

Lois E. Krahn, MD, consultant, Division of Adult Psychiatry, Department of Psychiatry & Psychology, Mayo Clinic, Phoenix, AZ.

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