Brew: You’re watching the latest Netflix comedy special with some friends.
It’s hilarious, as usual.
Everyone is busting a gut, but one of your friends, who always
seems to have an excuse not to come, doesn’t seem to be enjoying it.
He’s painfully holding in a laugh.
Before you can turn your attention back to the screen however,
you hear a loud THUD, and see your friend slumped on the floor.
He’s not laughing.
Someone starts dialing 911, but suddenly
they’re back up, telling everyone it’s fine.
You reluctantly go back to the show, but as the
comedian cracks another joke, your friend drops again.
He's paralyzed, from head to toe.
What in the world just happened?
Let’s find out!
Let’s get into it!
These experiences are more common than you’d initially believe.
Let’s look at a few more stories before we dig deeper into this mystery.
For Sheffield resident Tracy Herring, the
latest big budget comedy is no laughing matter.
Temporarily paralyzed, toppling over every time she emits a hearty
laugh, she’s banned herself from hearing anything funny, even
going so far as to avoid comedic movies for the past 12 years.
In her words “laughter causes my neck to weaken … I lose
control of my limbs and become paralyzed on my left side …
it usually only lasts for a few seconds but it is frightening.”
Her condition even affects her personal relationships as well.
In fact, when she met her boyfriend in the winter of
2014, he believed that she had drinking problems after
watching her nearly topple over after seemingly nothing.
Not just that, but Herring also isn’t able
to work full-time due to her condition.
The sudden attacks started when she was 32.
She was at a friend’s house for a party, drinking red
wine while chuckling when “Suddenly my arm went funny.
I couldn't control it.
I was throwing my drink around … My arm was flipping about.
I was mortified.” At first it was just her arm that
went numb, but then it spread to her neck and legs.
She even collapsed in the street on one occasion.
“Luckily I've been with my parents when it's
happened … But I've banged my head hard.
It's terrifying to think what could happen if I was on my own.”
But Ms. Herring isn’t the only one.
Henry Nicholls, author of the book “Sleepyhead: The Neuroscience of a Good
Night’s Rest”, speaks about his own experiences with these strange attacks.
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Brew: Nicholls’ first attack came in 1994, after a not so
clever remark from his mischievous friend Zaid, concerning
a weather presenter’s big teeth, he let out a little
horse-like guffaw, and experienced his first attack.
He writes, “The thrill turned quickly to fathomless dread.
I panicked and tried to call out, but I could not move my lips, and no
sound came, leaving the distress to echo in silence inside my head.”
Oh that sounds awful.
After Nicholls finished his degree in zoology, he travelled
to the Kalahari desert to study meerkat behaviour.
There, he learned that surprise could also trigger his attacks.
Though, he learned the hard way.
A Cape cobra slithered out of an abandoned meerkat den
metres away from Nicholls, sat up and flared its neck.
Nicholls jumped back, but his knees were weakened by his fit and he fell.
Lucky for Nicholls, he wasn’t totally numb, and managed to
crawl backwards out of the range of the cobra’s venomous bite.
If Nicholls hears a joke alone, he may chuckle, but
remain upright, but if he hears the same joke crack up
one of his friends, it’ll trigger a full blown episode.
Nicholls also found that anger triggers his attacks.
He writes that whenever his two sons argue
about something silly, he steps in to mediate.
They never listen, and his frustration rises, his muscles
grow numb and he finds himself losing consciousness.
He says “losing my body posture seems like reasonable
comeuppance for losing control of my children and my
temper” but “on the upside, it always stops them bickering”.
It’s alienating to not be able to appreciate everything your loved ones
can, but what exactly causes Herring and Nicholls’ fits of muscle loss?
And why is it whenever they have strong emotions?
Herring and Nicholls suffered from a condition called cataplexy, however
it usually expresses as a secondary condition caused by Narcolepsy!
Some of you may already be familiar with
narcolepsy from movies or even the TikTok!
One in particular, from one called chronicallychill420
—which is a reference, I think— tries to raise awareness
of narcolepsy, and how it affects those who experience it.
chronicallychill420: Oh no.
Brew: Narcolepsy is a neurological disorder
that impacts one’s sleep-wake cycle.
The main symptoms are unwilling bouts of sleep at
random intervals, and excessive daytime sleepiness.
A person with narcolepsy can fall asleep even if you’re in the
middle of a conversation, or an activity, like doing stand-up comedy.
I only know 25 letters of the alphabet.
I don’t know Y—
There are other symptoms though.
Some narcoleptics may experience strange, dream-esque hallucinations,
and sleep paralysis, which is the total paralysis of an
individual right before falling asleep, or right after waking up.
If you’re interested in more info about sleep paralysis, and
overall sleep health, check out our playlist on our channel!
But there is another symptom, Cataplexy!
Defined as the sudden loss of muscle tone while a person is awake, as
we saw earlier, it’s often triggered by sudden, or strong emotions.
Episodes can be as little as an eyelid drooping, or
as severe as a total collapse where an individual will
be unable to move, speak, or keep their eyes open.
The frequency of attacks vary greatly.
Some people only experience one episode a lifetime,
while others could experience many episodes a day.
In 10% of cases of narcolepsy, cataplexy is the first
symptom which can often be misdiagnosed as seizure disorders.
There are two kinds of narcolepsy, Type 1, Narcolepsy
with Cataplexy, and Type 2, Narcolepsy without Cataplexy.
The difference is as simple as it sounds.
Interestingly enough, 30% of Cataplectic attacks are
actually related to other disorders, like genetic disorders,
Niemann-Pick Type C Disease, Prader-Willi Syndrome, and Angelman
Syndrome, as well as a side effect of certain medications.
Symptoms of narcolepsy typically appear between the ages
of 7 to 25, but can start at any time before age 55.
The reasons why haven’t been clarified, however one of the
main reasons for late diagnosis is either misattribution
early in life, or comorbid diseases appearing later.
According to the National Institute of Neurological Disorders and Stroke,
anywhere between 135,000 and 200,000 people in the US have narcolepsy.
However, since many cases are misdiagnosed as a
seizure disorder, these numbers could be higher.
People with narcolepsy generally enter REM sleep very quickly
when they choose to go to sleep, but the muscle weakness
that accompanies REM sleep can occur during wakefulness in
people with Type 1 Narcolepsy, which explains the collapsing.
The causes of cataplexy are still being researched but thus
far we’ve found that people with cataplexy generally have lower
levels of neurons that produce a hormone called orexin in the
hypothalamus, which promote wakefulness and inhibit REM sleep.
Thus far, scientists have 3 basic theories as to the cause of narcolepsy.
First, it could be caused by autoimmune disorders attacking the cells
that produce orexin; second, it could be triggered by one’s genetic
history, since 10% of people with type 1 Narcolepsy have family members
with similar symptoms; and third, tumors and head trauma can damage
brain tissue and therefore impede the cells that produce orexin.
So then how are narcolepsy and cataplexy diagnosed?
If you’ve been having trouble with your sleep cycle, your
doctor may ask you to keep a sleep journal, where you can
note your sleep times, and any symptoms over a 2 week period.
Interestingly enough, none of the main symptoms are
exclusive to narcolepsy, so a thorough exam is necessary.
There are two main tests that can identify neurological
conditions that could appear like narcolepsy.
The first is a Polysomnogram, or PSG test.
Which is a recording of your brain, muscle,
breathing, and eye activity overnight.
People with narcolepsy generally enter REM sleep within 15 minutes
of going to sleep, so a PSG can show specialists if your symptoms
are connected to narcolepsy, or something else like sleep apnea.
The second test is called a Multiple sleep latency test, or MSLT, which
tests daytime sleepiness by recording how quickly a person falls asleep.
The day after doing a PSG, specialists will ask the patient
to take 5 short naps on 2 hour intervals throughout the day
in a sleep clinic while recording brain waves and other data.
If you fall asleep in less than 8 minutes on average across
all the naps, that informs doctors that you do have excessive
daytime sleepiness, which is a major symptom of narcolepsy.
If you enter REM sleep within 15 minutes in a PSG test,
and for at least 2 of the five naps for the MSLT, doctors
will consider that an abnormality due to narcolepsy.
When it comes to testing for cataplexy specifically,
doctors will usually interview patients and their families.
Occasionally, they’ll perform tests like
EEGs—Electroencephalograms, and ECGs—Electrocardiograms,
fancy tests to monitor your brain and heart activity.
Typically, narcolepsy and cataplexy are
treated by treating the underlying cause.
This can be through a course of medications, or through physical therapy.
For example, if one’s narcolepsy began after a traumatic brain
injury, then treating the injury would be the best course of action.
Henry Nicholls underwent tests to see if doctors could watch his
brain activity in the midst of one of his cataplectic episodes.
A team of nurses attached electrodes to his head and
body so they could record data from one of his attacks.
Nicholls’ friend Zaid used props to make him laugh.
He writes that “His piece de resistance was a photograph.
He held it up with its back to me, tantalisingly
out of reach, ramping up the anticipation.”
The photo was of Nicholls, Zaid, and two of their friends in
middle school, dressed to the nines and looking very uncomfortable.
Nicholls said that it wasn’t that funny, “but the combination
of anticipation, surprise, and irreverent only slightly
funny humour was easily sufficient to trigger a full-on
slump”, and with that, Nicholls was out and the data was in!
In the next 3 hours, Nicholls managed to trigger 13
attacks, giving medical staff a lot to work with.
One thing they noticed was how the amygdala kept lighting up.
A separate study from Switzerland found when a
non-narcoleptic sees something funny, the hypothalamus
lights up, and the amygdala shows a moderate response.
However, when a narcoleptic sees something funny, the
hypothalamus stays quiet, and the amygdala goes NUTS.
We still don’t know why this is the way it is, but it’s
steps like these that carry us forward toward a better
understanding of ourselves, and the world around us.
There are ways, though, for a person with cataplexy to fight their attacks.
Nicholls, in his book, describes a man, Massimo, who was able to
fight his cataplexy with the help of Son Goku, of Dragonball Z fame.
Massimo describes how he thought he had telekinetic powers as a child,
and by “training” his superpower he gained control of his cataplexy.
By trying to move objects with his mind, he
triggered episodes until he could do it on demand.
After that, he practised how to stop them.
He began by closing his eyes and forcing air into his
tube, a narrow link between the back of the throat and
the inner ear, before rolling his eyes back in his head.
He’d then feel an episode coming, but through practice,
learned how to roll himself back from the brink.
So one day, while watching Dragon Ball Z with a friend, he watched
as Goku, hero to earth and one of the last few Saiyans, attained
Super Saiyan 3 against Majin Buu and the evil warlock Bibidi.
And if you were there, I mean, you know it was incredible.
And just the kind of thing that would trigger one of his attacks.
He says that “for a boy of my age, it was a super-exciting transformation”
“And this, is to go even further beyond!” exclaims Goku as he
makes the transition from Super Saiyan 2 to 3, screaming for
minutes on end as his power destroys the landscape around him.
God I miss my childhood.
The energy was high, but still Massimo remained conscious!
His friend turned to him, asking “Look Massi, look!
Goku’s transforming, don’t you care?”
But of course, Massimo did care, as we all did on that
fateful day, and the only reason he wasn’t out cold was
that he’d finally found a way to control his cataplexy.
When it comes to living with narcolepsy, it can be very difficult
to maintain relationships, both in one’s personal life, and at work.
Julie Flygare, founder of Project Sleep, a non-profit dedicated
to raising awareness for sleep disorders and sleep health, even
as she worked for an employer who was aware, and accepting of
her narcolepsy, found herself fighting with fear and self-guilt.
Flygare used stimulants and sugary candy to stay awake, and to inhibit
her appetite, since eating was a huge sleepiness trigger for her.
Sometimes she would get foggy in meetings
and desperately fight to stay awake.
In the worst times, she would sneak out of her office to nap in her car.
Eventually, she would park her car in spaces where
she couldn’t be seen to take naps throughout the week.
Even in a workplace accepting of narcolepsy and in
spite of the legal protections in place for workplace
accommodations, it can still be nerve wracking to ask for them.
In Flygare’s words, “Ultimately, I was afraid to start
what I perceived to be a “difficult conversation”.
We’re conditioned to think that if we’re not being
productive 24/7 we must be lazy, or unmotivated.
This feeling is even more present in the world of work, where
toxic “grind” culture wants us to think that burnout is normal.
It’s not, and if we let our kindness and compassion drive us,
not just for others but for ourselves as well, we can make
the workplace, and the world, a little easier for everyone.
So, if you see someone taking a nap in the breakroom at work, don’t be a
NARC-olepsy, and make sure everyone is getting the care that they need.