
Why Sleep Apnea Patients Rely on a CPAP Machine Hacker - runesoerensen
https://motherboard.vice.com/en_us/article/xwjd4w/im-possibly-alive-because-it-exists-why-sleep-apnea-patients-rely-on-a-cpap-machine-hacker
======
goshx
I was using a CPAP machine that I couldn't see the data nor extract it to use
with SleppyHead. It was awful because the appointments with the doctor were 6
months apart and they were basically about a lot of leak detected by the
machine and let's try to adjust it and see in 6 months if it was fixed.

Awful.

Almost 3 years later I requested another sleep study because I was done with
no progress. The study found out that what I really needed was a BiPAP machine
and a MUCH higher pressure.

Now the insurance replaced my old machine by a Philips-Respironics
DreamStation Auto BiPAP, which comes with an app (DreamMapper) that you can
sync every morning using bluetooth and it shows the usage time, % of mask leak
detected, and detailed AHI information like: Total clear airway apneas, total
obstructive apneas and total hypopneas.

This is really all I needed to monitor it myself and adjust whatever I need
without having to wait 6 freaking months.

I have a friend that didn't want to go through the study and ended up ordering
the same machine as I have. He's been adjusting his settings based on the app.
He's very happy with the results and probably would have similar results if he
had done the sleep study.

~~~
bhc
How do people obtain regulated medical devices like CPAP without a
prescription? I assume a sleep study is required to get a prescription from a
doctor.

~~~
jchw
I think there's a loophole in that you can buy CPAP machines without a
prescription from second-hand sellers. Last I checked it looked pretty
inexpensive, too. So, really, you don't need a prescription to try one if you
really wanted to.

There's probably some safety concerns, but I've become cynical about a lot of
it. Doctors of course want everyone to go to the doctor first, but is it
really that dangerous to use a CPAP machine if you didn't need one?

~~~
carlmr
>There's probably some safety concerns

Apparently dry nose and skin irritation. I wouldn't worry too much about it.
But if you can get a doctor's appointment you might get an insurance to pay
for your experiment.

[https://shop.edensleep.co.nz/how-does-cpap-
work/#](https://shop.edensleep.co.nz/how-does-cpap-work/#)

------
rjurney
Messing with your own PAP settings can be a bad idea. I have complex apnea - a
little bit of obstructive apnea (small pie hole), a little bit of central
apnea (brain messages to breathe don't get through). I had an Auto BiPAP
machine, which is like an intelligent ventilator that varies settings to
determine the best one. A sleep study plus home monitoring indicated that the
machine made my apnea worse!

After another sleep study where they tried many different settings, it was
found that static CPAP, the simplest form of PAP therapy, was most effective
in addressing my apnea. This was highly unexpected.

My point is that only a sleep technician or a sleep medicine doctor could have
figured the right settings out. Beware of fucking with your own settings! I
did it multiple times and it hurt my sleep instead of improving it. Pulse
oximetry is not good enough to tune your own settings.

~~~
tptacek
Central apnea is the scary story people tell on the forums about why not to
just get an APAP and skip the sleep study.

(I'm sort of suspicious that I have some kind of apnea since my wife says she
thinks I do, but there is just no way I'm doing a sleep study, so this is a
topic of some minor fascination for me).

~~~
outworlder
> but there is just no way I'm doing a sleep study

Dude. If you even have the _suspicion_ of having sleep apnea, please get
yourself tested. I do not care what your reasons are. There is no way your
reasons are more important than the increased risk of stroke and heart attack,
among other chronic conditions. If you do have sleep apnea, your brain (and in
fact, the whole body) is getting chronically deprived of oxygen, with all the
ill effects this causes.

Do the sleep study. Nowadays you can do it at home with a small device, in the
comfort of your own bed. No medication is involved.

If you do not find indications of sleep apnea, congratulations. But this is
not something you can usually figure out on your own, unless it is very
severe. The cognitive decline is gradual, any chronic effects take a long time
to get noticed.

When you start using a *PAP machine, only then you figure out, as the brain
fog is suddenly lifted and you realize how much you have been handicapped.

~~~
tptacek
_When you start using a_ PAP machine, only then you figure out, as the brain
fog is suddenly lifted and you realize how much you have been handicapped.*

See, again, I am sold on the "you will be an atomic superman" argument! Give
me the damn machine! :)

~~~
outworlder
On the cpap subreddit, they frequently mention the 'superman phase'. As with
most things, you'll adapt and that will become your new 'normal'. But for a
time the contrast is striking.

------
rrggrr
Accessing the clinician menu on most machines is accomplished by a quick
Google search. I've adjusted my pressure several times to bring down AHI, or
to reduce some side-effects of higher pressures as my weight comes down. Most
machines report AHI in the main menu. My point is this... the article's
premise is on target, but the situation isn't as dire as characterized.

~~~
jgrowl
This was my personal experience as well. I use a ResMed machine and I remember
when I first got it that the instructions warned that only technicians could
make setting adjustments. After a few nights of waking up feeling like I
couldn't move air through my nose, I just looked up how to do it. It only
consisted of holding down two buttons at the same time. Very straight forward.
I haven't tried accessing the internal data, but I've been content enough with
the breakdown that they provide each night.

~~~
DenisM
Get a newer machine, an S10. Steal money if you have to. These are much
better, not just the menu but the pressure logic.

~~~
rootusrootus
FWIW, there is no such thing as an S10. The last of the S-series (by name at
least) was the S9. The current model you want is the AirSense 10 or AirCurve
10 if you want a BiPAP.

Anyways ... I have an AirSense 10 and I have to say ... I have no idea what
the S9 was like, but the current model still fucks up my levels when I wake up
in the middle of the night. Not sure how my breathing is different when I'm
awake, but it inevitably causes the damn machine to detect an obstruction and
it will push the pressure all the way to the maximum.

A pretty common complaint, but they have not released a fix AFAIK.

------
Apocryphon
Great look into an altruistic device hacking subculture, but the real story is
how badly underserved this medical community is by healthcare providers.

~~~
bredren
There is a fun sci-fi on topic published last year: Autonomous by Annalee
Newitz.

------
surds
I did read an article early this year where an individual died on a camping
trip as he was not carrying his CPAP. So, yes, it does vary for each
individual but sleep apnea can be deadly.

Also, I cannot recommend enough anyone showing any symptoms of sleep apnea to
get it checked out. I started using CPAP just over 2 years ago now and it has
been a life changing experience, even though the study suggested only a 'Mild
case of Sleep Apnea'. I don't think the years of damage is completely
recovered yet, but day to day difference when using the CPAP while sleeping is
quite amazing.

Hadn't ever thought I would say 'So that's what it feels like to be fresh and
energetic through the day!' but I did. :)

~~~
WJW
Does it bother you at all while sleeping?

~~~
khendron
I'm more concerned if it bothers your sleeping partner.

~~~
elbows
My partner uses a CPAP machine (possibly not a "modern" one... it's 3-4 years
old I believe). It's tolerable, but not great.

Cuddling is not really possible once the machine is on. It makes some noise
which I've mostly adjusted to, but sometimes it gets significantly louder for
a while, waking me up or keeping me awake unless I put earplugs in.
Occasionally it blows air on me (not sure if the mask is leaking or what), and
I have to rearrange blankets to block it before I can get back to sleep.

~~~
colomon
Every mask I've ever used automatically vented air by design. (Which yes, is
really awful WRT cuddling.)

------
peterburkimsher
I wrote the Mac/Linux driver for the Fisher & Paykel Healthcare Icon CPAP
device. The principle of operation is very simple: just blowing air into your
face while you're sleeping.

The trouble is, it's not pleasant to wake up with air blowing at you. So they
have an algorithm to detect when you're sleeping peacefully or about to wake
up, based on your breathing pattern. It turns off the pump when you're waking
up.

The CPAP plugs in with USB-serial, but the connector is buried deep inside the
device so it needs a special adaptor just to reach the pins. The protocol is
obfuscated and checksummed, but not encrypted.

I'm looking for a job now, so if anybody would like someone with experience in
this area, please reach out.

------
diob
I have to adjust my own pressure as well, since I can't afford to do another
sleep study (American Healthcare rocks!).

The biggest difference in my sleep came from when I purchased a machine that
auto adjusts based on what you need, so no one could lock me out from getting
the best healthcare possible.

~~~
snuxoll
I know I suffer from sleep apnea (poor sleep quality, relatives have noticed
me stop breathing for brief periods while asleep, loud snoring) but I
literally cannot bring myself to get a sleep study done because I know it's
not going to be cheap, and to top it off I don't even know how expensive it's
going to be in the first place.

It's not like I _can 't_ afford to pay either, I do have some money stashed in
my HSA but when I'm trying to get to a point where I have a full years
deductible in it to cover a true emergency it's a bit of a gut punch to
suddenly take $X00-$1X00 out to wear a device and then have a technician
analyze the data from it.

All of this is why my first step right now is to keep losing weight, because I
know weighing 230lbs as a 5'10" male isn't helping me at all either.

~~~
auntienomen
You don't need to do a full sleep study. Standard procedure these days is to
prescribe an at-home sleep apnea test. A sleep health company will send you a
little monitoring device by mail. You wear it while sleeping during the night.
It measures your pulse, blood oxygen levels, breathing patterns, etc, and
transmits your data back to the medical provider. After about a week, they
send you and your doctor the results.

Then your doctor will prescribe auto-cpap therapy. Hopefully health insurance
defers some of the cost, but in any case it shouldn't be ruinous for someone
with an HSA. You can get a Phillips Dreamstation off Amazon for $620.

Please go get tested.

~~~
beef234
Or if your family has definitely seen apnea events, just get an apap off
Craigslist and a new mask and give it a test run.

Edit- Sorry didn't see this exact comment below, so I concur

------
acd
EU GDPR rights give you the right to

1 obtain access to the personal data held about you; 2.receive your personal
data in a machine-readable format and send it to another controller (‘data
portability’);

[https://en.wikipedia.org/wiki/Data_portability](https://en.wikipedia.org/wiki/Data_portability)

"Nevertheless, circumstances may exist when such a reproduction of the code
and translation of its form are indispensable to obtain the necessary
information to achieve the interoperability of an independently created
program with other programs. "

------
HillaryBriss
> _“If things go wrong, they may end up dead in their bed. "_

They make it sound kind of risky, but ... does anyone have a way to quantify
the risks here?

I mean, is adjusting your own CPAP machine as dangerous as say, driving a car
across country, or drowning on a trip to the beach, etc?

~~~
beef234
From what I've read, if you raise slowly (like 1cmh2o per day maximum) you'll
notice an increase in Central events and a higher AHI or obvious aerophagia if
you get too high. I haven't read a single case of exploding lung though even
at 20cmh2o. This is not medical advice though!

------
teekert
Under the GDPR, isn't this data owned by the patient?

------
Diederich
In the past, the CPAP machines my wife and I used needed to be programmed in
various ways, and they had separate data cards as described. The ones we got a
couple of months ago are completely dynamic, they aren't pre-configured in any
meaningful way.

Also, they send their collected data up to 'the cloud' over a cellular
network, where we can view the data, in some detail, with our web browser, as
authenticated by a code printed on each machine.

Seems like a good way to go.

~~~
dreamcompiler
I keep my CPAP in airplane mode because I have no idea how they protect the
data or the protocols used to adjust the settings remotely. Based on what I
know about every other IoT device, the manufacturer almost certainly knows
nothing about computer security.

This annoys my doctor because it means she has to read the SD card rather than
pulling my data out of the air, but I explained to her that I knew as much
about computer security as she did about respiratory medicine, and if she knew
what I knew she'd be horrified.

------
gwbas1c
Somewhat related:

I had major surgery for sleep apnea a few years ago. It was completely worth
it. I don't sleep with a CPAP any more.

I do wish I could get a very light CPAP without a prescription for when I have
congestion from allergies or a very bad cold. When I had my CPAP, it used to
power through the congestion so well that I sometimes strapped it on in the
middle of the day just to relieve cold symptoms.

------
Tharkun
While we're on the subject of CPAP: is anything known about the consequences
of long term usage? Won't the constant positive pressure eventually result in
reduced muscle tone around the airways, or maybe weakening of the diaphragm or
something?

------
jparishy
While this thread is on the front page, I wanted to chime and say I had a good
experience with the folks at [https://www.rpmhst.com](https://www.rpmhst.com)

They do home sleep testing and will write a prescription for a PAP machine.
The discount of buying one through them is also pretty good. I got a ResMed
AirSense 10 and it's been very helpful and I'm grateful that I didn't have to
go through an in-clinic sleep test and could just pay for this out of pocket
with a fixed price. Not associated with them, just a fan. I found them through
the r/SleepApnea subreddit which is a good place to discuss this sort of
thing.

------
wccrawford
Why is it so hard for people to write posts like this without all the bias.
Saying things like, “Everybody is trying to get you in and out the door, and
take some profit from your pocket.” and "He agreed that most sleep apnea
patients around the world are underserved: “Doctors don’t listen and don’t
have time anywhere in the world.”" just makes the whole thing feel like a
snake oil salesman at work.

Saying it without the snide remarks is a much more powerful message, to me.

~~~
Apocryphon
Would these efforts even exist if patients didn’t feel frustrated at the
establishment professionals?

------
crimsonalucard
One way around this is to get a bed that has something like a zero gravity
mode. Sleep a bit upright and your airway won't collapse in on itself.

I don't need CPAPS yet, but if a CPAP alone isn't working for you, you can try
this combined with CPAP or just using the bed itself.

~~~
blang
And at the risk of being down voted, weight loss:
[https://www.health.harvard.edu/blog/weight-loss-breathing-
de...](https://www.health.harvard.edu/blog/weight-loss-breathing-devices-
still-best-for-treating-obstructive-sleep-apnea-201310026713)

~~~
ryan-allen
In my case, my OSA is most likely due to being overweight.

Having effective CPAP treatment alongside active weight loss measures would
work wonders. It's no fun trying to diet and exercise while being completely
exhausted day in and day out due to poor sleep.

~~~
Karunamon
Worse, the constant exhaustion makes your mental state absolutely horrible.
Not just in the obvious stuff like being more scatterbrained, but in lack of
motivation and, I dare say, depression.

Wouldn’t wish it on my worst enemy.

~~~
ryan-allen
Yep, I most likely had it for 5 years without realising it. I had no idea why
I was so tired.

Every day, getting to work on time was a huge mission, slogging through the
day trying to get stuff done jacked up of caffeine.

Then the nights, despite being exhausted I was unable to fall asleep, my
experience was that I was lying awake in bed for hours but actually I was
falling asleep many times per minute and choking myself back awake. The only
easy way to get to sleep was to have a few drinks which naturally made my
apnea worse, not to mention the negative effects of alcohol.

Once I realised I was doing it, I learned to sense when I had choked back
awake. I did everything I could to get a CPAP Machine ASAP (it was expensive
and not covered by health insurance in Australia).

2 weeks of using it every night I felt like a new person. My compliance using
the device is nearly 100% over the last year (as reported by the device) and
it's been so great.

I fall asleep in about 5 minutes these days.

The reason why I didn't realise I had this condition was because I had been
single for about 6 years and slept on my own. It wasn't until I started dating
that my (now fiancee) said 'you snore and choke all night'.

So, as a PSA, anyone overweight and long time single that is always tired, get
a sleep study!

------
dfischer
Is there any cheap way to get a CPAP evaluation and device? I’m in startup
grind mode and just don’t have the extra funds right now but I’m curious if
this is why I feel lethargic all the time.

~~~
Hydraulix989
It's pretty hard to do a startup with sleep apnea (I know from personal
experience). Take care of your health first.

------
bryan11
What other device hacking subcultures exist for medical devices?

~~~
iancmceachern
There is OpenAPS, the Open Artificial Pancreas. They are connecting
commercially available insulin pumps and glucose monitors with open source
software to auto regulate blood sugar in folks with diabetes.
[https://openaps.org](https://openaps.org).

There are also folks making implants, LED lights and rfid tags and such.
[https://en.m.wikipedia.org/wiki/Grindhouse_Wetware](https://en.m.wikipedia.org/wiki/Grindhouse_Wetware)

------
naveen99
A couple of signs of sleep apnea: grinding teeth and not dreaming. I couldn’t
tolerate cpap. sleeping on my tummy or atleast on my side helped a lot.

------
techbio
This is the first time I've heard of the "Librarian of Congress" weighing in
on DRM. Is this a normal thing that I've somehow missed?

~~~
Tomte
Yes. As the article says, copyright law has a provision whereby the Librarian
of Congress can create exemptions.

Pretty smart actually, Congress not trying to enumerate all small details
itself.

(section 1201(a)(1) of title 17, USC)

~~~
cbhl
I believe these were introduced under the DMCA in '98?

~~~
hathawsh
Yes.
[https://www.law.cornell.edu/uscode/text/17/1201](https://www.law.cornell.edu/uscode/text/17/1201)

------
agumonkey
These guys deserve social recognition.

------
zw123456
Why do people need CPAP machines, why can't you simply sleep on your side?
Most primates instinctively know how to sleep in the best positions
([https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119282/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119282/))
humans insist on sleeping on their backs which other primates instinctively
know is dangerous.

~~~
outworlder
> Why do people need CPAP machines, why can't you simply sleep on your side?

Because they have issues which require CPAP machines.

If I sleep on my side, the apnea situation improves slightly, but it does not
go away at all. Do you think that people would prefer to deal with a bulky and
unconfortable machine, as well as doctor appointments, if they could simply
sleep on their sides?

~~~
zw123456
I think CPAP users are getting scammed, just sleep on your side, all primates
instinctively know to do that. Humans are the only primate that insists on
sleeping on their back. Obviously if you throw up will asleep on your back you
will die. 100% of people who go to a CPAP clinic get diagnosed with sleep
apnea, just statistically this is obviously a scam.

These sleep clinics make money off you if they can diagnose you with a
disorder that requires you to purchase a $2000 machine to "keep you alive". Of
course, everyone who walks through the door needs what they have to sell.

------
Aloha
I think the risk of death is probably overstated, as these people have often
gone decades without a CPAP, and lived just fine.

~~~
saint_fiasco
Maybe a badly configured CPAP machine is worse than nothing at all?

The article says the data they collect include something called "mask leak
rates". That means the machine has an airtight mask and could in principle
suffocate you if it malfunctions.

~~~
reaperducer
_That means the machine has an airtight mask and could in principle suffocate
you if it malfunctions._

Ummm... no. If the CPAP machine fails, you'll just start sucking air in the
holes that are normally used to expel your exhalations. (When you exhale, the
air goes out through these vents, not back into the machine.)

It's significantly less airflow, and will cause you to wake up, but it's not
going to suffocate you.

~~~
saint_fiasco
But isn't the point of sleep apnea that the lack of air does not wake you up?

~~~
Rooster61
Only until your brain reaches a threshold where it says "OOOOK, we definitely
need to start breathing now. Time to wake up". When you reach that threshold,
you wake up on a very low, subconscious level that disrupts your sleep
pattern, which in combination with the lower level of oxygen, is what causes
the damage to your system.

The difference with a malfunctioning machine is that you still cant get air
even after that threshold has been hit (or at least it's very difficult to do
so). At that point, your brain kicks you totally out of a sleep state and you
awake completely.

------
werdnapk
My wife (oral surgeon) says the only real solution to sleep apnea is surgery.
CPAP machines to her and bunk. I believe she moves the jaw forward to help
open up the airway.

Whatever works I guess.

~~~
iancmceachern
Doesn't weight loss help many patients improve?

~~~
jgrowl
For those that are overweight yes, but not everyone that has sleep apnea is
overweight (like me). The apneas are caused by different things in different
people and I believe any surgical solution would likewise depend on the
person.

