
Wake No More – The exhausting world of the hypersomniac - interkats
https://medium.com/matter/wake-no-more-8bbd49528b9
======
meepmorp
It's kind of remarkable how little we know about the most basic functions of
our bodies.

It's also interesting how much stigma there is attached to a disorder like
this, because of how it presents. Obviously, if a person can't wake up,
they're lazy or malingering, or their diet is off, or something. As much as
anything, the social aspects around the disease make the identification and
treatment very difficult.

~~~
Groxx
This was practically my brother and me for a couple years. Eventually it got
labelled "chronic fatigue" (one of the biggest umbrella terms ever). I have no
idea if it's at all the same thing, but I can absolutely attest to fighting
the same stigmas.

We went through a couple doctors who were convinced we were faking everything
because the standard (and plenty of non-standard) tests didn't show anything
they learned in school. We had fights with the school system (eventually
switching to homeschooling (which is far from stigma-free itself)). There was
plenty of family stress, as you can imagine. It's infuriating and depressing
and ludicrously hard to find anyone who's willing to work with you.

At least we have the internet now, so the crazies can find each other.
Obviously a double-edged sword, but otherwise things like this never get
noticed.

~~~
raelshark
Seems like the experience is pretty similar with a lot of these disorders. I
have an autonomic nervous system problem that overlaps significantly with
"chronic fatigue," and I've seen a lot of patients go through similar "why
can't you just..?" discussions with family and friends. I've also had similar
experiences to what you describe with your school situation, but also with
employers. It's a special kind of stressful when your livelihood is on the
line and your employer won't take your issues seriously, and you have to
struggle to medically validate your circumstances when you can't find a doctor
who understands it either.

For most people with poorly understood issues like these, getting an actual
diagnosis is like an emotional and social breakthrough - complete validation
that something's really wrong.

~~~
kolinko
I recently found a book that's all about these kind of diseases ("invisible
chronic diseases") - it has whole chapters dedicated do dealing with the
problems you described.

[http://www.amazon.com/Sick-Tired-Feeling-Invisible-
Chronic/d...](http://www.amazon.com/Sick-Tired-Feeling-Invisible-
Chronic/dp/0393320650)

------
derefr
Huh.

The reason Flumazenil is used in treating benzo addiction is that benzos, in
hyper-stimulating the GABA receptors, _downregulate_ them—which leads to what
is commonly referred to as "Benzodiazepine withdrawal syndrome", but really
just means "not enough GABA-mediated activity."

Flumazenil, then, in suppressing GABA, _upregulates_ production of the
receptors for it—and therefore makes the benzo-withdrawal symptoms go away.
But it does it by making the symptoms, for a short time, _worse_.

Now think about what these people are doing by using Flumazenil to treat their
high-GABA hypersomnia, and apply it to the body's quick re-regulation of GABA
receptor activity mentioned above.

It would seem that, pharmacologically speaking, by taking this drug, they're
actually making their problem _worse_ in the long term. If an initial
anesthetization caused their GABA up-regulation, they're only making it worse
by up-regulating GABA receptor production. Rather, it would seem that what
they _should_ be taking is, in fact... benzodiazapenes! (As long as this would
not, in fact, lead to benzo-overdose-associated respiratory depression more
easily than it does for regular people, I mean.)

~~~
fragmede
It's unfortunate that the article ends the down quote "Hang on. Well, like,
what next?" after the test results indicated a with 3x normal levels of GABA.

Well, what next? If your GABA is high, then the science begins.

As you mentioned, there's a whole family of benzos to try that all do slightly
different things.
[http://en.wikipedia.org/wiki/Benzodiazepine#Common_types](http://en.wikipedia.org/wiki/Benzodiazepine#Common_types)

Outside of the benzo family, there're a few others.

How about chlorophenibut, which is a GABA receptor agonist?

How about straight GHB, which is naturally produced by your body, but is a
precursor to GABA in the brain. (Theory being if there is more GHB your body
will notice and then stop producing GABA.)

~~~
Flow
I take Gabapentin against neck pain. Is Gabapentin connected to hypersomnia or
something else too?

I'm feeling a bit worried now.

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binxbolling
Thank you for posting—this shed light on my own bouts with hypersomnia in my
early twenties. In my case, brought on by Major Depressive Disorder. A normal
night's sleep for me was 12-14 hours, and on three occasions I slept 24-26
hours uninterrupted. I cannot begin to describe how disorienting it is to wake
up a full day after you went to bed. For me, the hypersomnia melted away when
my MDD was under control, and it's heartbreaking that some of these folks in
the article can't find relief as "easily."

------
abrak
__" Sometimes he fought the constant pull of sleep, forcing himself to
socialize when his mind was in a fog. But by denying his problem, he sometimes
put himself — and others — in dangerous situations. One day he was cruising
toward the mountains at 100 miles an hour on Red Bull, his large, cherry-
colored motorcycle. One moment he was staring at the lush, green foothills
ahead; next thing he knew, an older woman on a bike slowed down in front of
him to make a U-turn. He tried his best to stop, but couldn’t, crashing into
the back of her bike. They were both thrown to the ground. She was injured
badly, bones visible on her shins and hands. Lloyd had only a few cuts and
bruises, but he was rattled. How had that happened? he wondered. Did I zone
out?" __What an asshole.

~~~
anigbrowl
I had a similar reaction, but it's very hard to know whether this tells us
more about the subject or the writer. The way it's written, it makes him sound
more worried about is own situation than the person he nearly killed riding at
100mph, but the writer or the editor might have decided that the details of
how the accident was handled were too much of a digression from the main
story. It's always a problem with heavily narratized journalism, which is more
emotionally engaging but at the price of treating subsidiary characters in the
story as mere props in the protagonist's story of medical-self-discovery.

~~~
ars
> than the person he nearly killed

An injury like that to an elderly person in a non-advanced country probably
was fatal. Maybe not right away, but falls are one of the largest killers of
the elderly, not from the fall, but from the after effects.

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thraxil
A bit off topic, but the characterization of narcolepsy in the article is a
bit off (my ex had narcolepsy):

"Narcolepsy is characterized by sudden bouts of sleep, and caused by a lack of
a brain hormone called hypocretin. Lloyd longed for this kind of clear
explanation for his combination of ambiguous symptoms. But he knew he didn’t
have narcolepsy. Sleep didn’t hit his brain like a bolt of lightning; it was
more like a slow, thick fog."

That's really only describing cataplexy, which is one symptom of narcolepsy,
and one that not even everyone with narcolepsy experiences (only about 70%).
That's the flashy one that people associate with narcolepsy where the person
appears to just fall asleep out of nowhere, often as a reaction to emotional
excitement (fright, happiness, etc. Every once in a while I'd make my ex laugh
so hard that she'd have a cataplectic attack). Even cataplexy really isn't
"falling asleep". It's more of a sudden muscle paralysis. They remain fully
conscious, but collapse and can't physically function for a while.

The main symptom of narcolepsy that takes its toll on day to day life is
"excessive daytime sleepiness" (that's the technical term), which is basically
just feeling tired and sluggish pretty much all the time, sleeping a lot but
never feeling rested. Pretty much the same symptom that IH and sleep apnea
patients have.

The difference is that with narcolepsy, the immediate cause of those symptoms
appears to be poor sleep (which in turn is caused by something deeper and less
well understood). Narcoleptics basically don't get deep sleep cycles like the
rest of us; they go straight to REM and miss out on slow wave sleep. If you
fix that, the symptoms go away. One of current drugs for narcolepsy is sodium
oxybate (tradename Xyrem), which is basically GHB, a heavy sedative. That
sounds pretty counter intuitive based on the symptoms (give sedatives to
someone who's too tired all the time?), but makes sense when you think about
it letting them get proper deep sleep.

Anyway, I'm not questioning the diagnosis in the article (I'm sure the doctors
did the usual sleep latency tests and ruled out narcolepsy), but I just wanted
to clear up a bit. If anyone's reading the article and has similar symptoms,
go talk to a sleep doctor.

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elchief
The part about it possibly being caused by anaesthesia was kinda glossed over,
no?

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edem
Do you have a TL;DR version?

~~~
edem
I don't know what your problem is...

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underwater
> They slept too much, but even in the hours that they were awake, their
> brains weren’t clear. They used terms like “sleep drunk” and “brain fog,”
> and talked about how hard it could be to stay focused and alert.

Is that feeling really rare? I have that feeling every morning. Thankfully
caffeine clears it up for me. But if I skip my coffee it lasts for hours.

~~~
Sir_Substance
Their implication is that it never goes away. I'm inclined to take their word
for it.

~~~
brainfog
As someone who's been diagnosed with hypersomnia after several doctor's visits
and sleep studies: that's correct. The fog very rarely goes away.

There's the occasional good day that comes once every few weeks/months to
remind you of just how bad things are, but otherwise it's just constant fog.

Similarly to depression, things like a good diet, regular exercise, a regular
sleep schedule, a bright light as an alarm clock all help improve things
somewhat. Ritalin also helps if your heart can handle it.

------
SeanDav
OT: I usually avoid links to articles on medium.com as past experience has
lead me to believe they were generally all headline with very little
substance. This article was excellent and sucked me in. Almost wired.com
quality. It ends a bit abruptly but that probably reflects the current state
of the research. Looks like I might have to reconsider my bias against
medium.com.

