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Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

371 points by runesoerensen 8y ago

acd 8y ago
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. "
techbio 8y ago
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?
- rhizome 8y ago
  For some values of "normal," yes.
- Tomte 8y ago
  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 8y ago
    I believe these were introduced under the DMCA in '98?
    - hathawsh 8y ago
      Yes. https://www.law.cornell.edu/uscode/text/17/1201 https://www.law.cornell.edu/uscode/text/17/1201
Aloha 8y ago
I think the risk of death is probably overstated, as these people have often gone decades without a CPAP, and lived just fine.
- ars 8y ago
  That's not entirely true. If you mess up you can end up rebreathing your own air in the tube. It has small holes that are supposed to allow fresh air to mix in even if the machine is not providing any. But they are small. If you are a normal sleeper you would normally wake up and remove the mask if you feel suffocated. (For example a power outage.) If you are with someone who uses such a machine you can test it - unplug the machine, and see how long it takes them to do something (wake up, or remove the mask in their sleep).
  - rootusrootus 8y ago
    In my experience, if the power goes out you wake up immediately due to the change in respiratory effort, way, way before you'd suffocate. Even if you could, which would be hard given that you can breathe through the mask when the machine is off.
    - rrauenza 8y ago
      Also, many masks are nose only for those who sleep with their mouth closed (or learn to.)
  - jpmattia 8y ago
    > unplug the machine, The only machine I've had experience with (a parent) had an alarm for power loss. Is that somehow not standard/a requirement? Edit: As I think about it, there was an associated oxygen machine, and that was the device with an alarm for power loss. Nevertheless, it seems like an audible alarm on a CPAP would be a really good idea.
    - dumbfounder 8y ago
      Nope. My machine is plugged in where my bed hits the wall, every now and then the bed moves a little in the night and unplugs the machine and I wake up because I am having trouble breathing. But my guess is that this is only a serious hazard for people with very serious health problem, or the elderly. If you are one of those, don't F around.
Apocryphon 8y ago
Great look into an altruistic device hacking subculture, but the real story is how badly underserved this medical community is by healthcare providers.
- bredren 8y ago
  There is a fun sci-fi on topic published last year: Autonomous by Annalee Newitz.
wccrawford 8y ago
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 8y ago
  Would these efforts even exist if patients didn’t feel frustrated at the establishment professionals?
- cjbprime 8y ago
  It's free, open source software. I really don't think they're trying to sell you anything.
- chc 8y ago
  You want them to present a solution to a problem without implying that the problem exists? That seems like an unrealistic thing to ask for.
- lfnoise 8y ago
  In my experience, sleep apnea treatment in the US is a racket. The sleep center tried to maximize the number of office visits they could bill before prescribing treatment and the insurance tried to delay approvals and minimize the cost and quality of equipment they would provide. Meanwhile, patient suffers. After 5 months of repeated visits, when another 6 weeks was tacked on, I went out on my own and got the best machine.
- deleted 8y ago
  [deleted]
- ceautery 8y ago
  "take some profit from your pocket" is needlessly severe, but the sentiment that doctors are juggling too many patients resonates with me. "Doctors don't have time anywhere in the world" probably isn't accurate, but my doctor certainly never had enough time to listen to me, which caused me years of needless pain because of a simple misdiagnosis. I was frustrated enough with engaging with medical professionals that I instead just adopted a healthier lifestyle. My last regular checkup was in '09, and I next visited a doctor in 2013 when I pulled a muscle in my chest, and wanted to make sure I wasn't having a heart attack. Obviously my anecdote isn't proof that this is a systematic problem, but the fact that I see comments like this "in the wild" at least triggers my confirmation bias :)
rrggrr 8y ago
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 8y ago
  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.
  - rhcom2 8y ago
    Was that the pressure too high for you to exhale or too low to overcome the apnea?
    - jgrowl 8y ago
      It was just that I'd wake up and feel like I was struggling to move air in. The machine was working as intended as far as I know. It was still registering that air was getting through so it was not adjusting the pressure. I just have allergies and even though I'm on Montelukast, I still have to crank up the pressure just to feel comfortable. I'm not sure now that you mention it, maybe it should have been increasing the pressure.
  - DenisM 8y ago
    Get a newer machine, an S10. Steal money if you have to. These are much better, not just the menu but the pressure logic.
    - 8y ago
camelCaseOfBeer 8y ago
Oh, look at that, another patient let down by the American medical system, forced to advocate and find the treatment they needed for themselves. Go figure quality of treatment is set aside for business incentives when healthcare is turned into a business. I wouldn't be so cynical if I hadn't been turned away with shrugs by three specialists and told, "well you can just take pictures of her now" Regarding a rapidly growing bright red tumor, a hemageoma, on my daughter's eyelid. My daughter would've potentially been blinded and branded a pariah if I didn't research treatments using my university's medical db. Literally one week of a topical beta blocking ointment with no adverse side effects and the tumor vanished. The thought of all the children wearing unsightly tumors on their faces, some even going blind, all because their pediatrician can't bother to read a journal makes me sick.
diob 8y ago
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.
- jimison 8y ago
  > I can't afford to do another sleep study (American Healthcare rocks!). That's the invisible hand of the free market taking care of you!
  - njarboe 8y ago
    Almost nothing about the American healthcare system has anything to do with a free markets. From medical schools, to opening a new hospital, to pricing, to forced insurance, healthcare tied to employment, companies or government pay for almost all of it, FDA drug approval process, etc. Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all.
    - jimison 8y ago
      Touche. Perhaps the rhetoric of free-market-can-solve-everything Libertarians, the get-the-government-out-of-my-health-care Republicans, and the healthcare-is-a-human-right Democrats are all co-opted by America's crony capitalism and we get... this.
    - mullingitover 8y ago
      > Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all. The free market is simply incompatible with health care. Imagine a world where, any time you have a life-threatening health problem, you can expect to transfer everything you own to the hospital, since they have perfect leverage over you.
      - 8y ago
werdnapk 8y ago
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.
- TylerE 8y ago
  They are very much not bunk. They don't work for everyone. For people (like me) that they work for, the benefit is large, and immediately obvious.
- iancmceachern 8y ago
  Doesn't weight loss help many patients improve?
  - werdnapk 8y ago
    Generally yes, because the throat is less constricted when you're not overweight.
  - jgrowl 8y ago
    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.
  - dreamcompiler 8y ago
    OSA can be caused by many factors. Weight is only one. I'm skinny and I'd be dead without CPAP.
  - 0xcde4c3db 8y ago
    It usually helps, but as with most obesity-linked conditions it's not suitable on its own as a first-line treatment. The effect is small compared to CPAP, and sufficient weight loss to see that effect takes months, whereas CPAP starts working literally overnight (DME/insurance shenanigans notwithstanding). Also, chronic sleep disruption is associated with a cluster of symptoms (impaired insulin sensitivity, lethargy, increased hunger) that make it very difficult to lose weight in a normal/healthy way. Many patients find that they lose 10-20 pounds after starting CPAP with no conscious change in their lifestyle.
bryan11 8y ago
What other device hacking subcultures exist for medical devices?
- cjbprime 8y ago
  Diabetes! The first marriage of a continuous glucose monitor to an insulin pump was by an open source community called Nightscout.
- mikequinlan 8y ago
  Open Artificial Pancreas System (OpenAPS) for Type 1 Diabetes. https://openaps.org/ https://openaps.org/
- sambroner 8y ago
  Lots in diabetes care.
- iancmceachern 8y ago
  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
- davio 8y ago
  First one I heard about was using sound amplifiers for hunting instead of hearing aids from an audiologist.
crimsonalucard 8y ago
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.
- Diederich 8y ago
  My understanding is that sleeping on one's side (rather than back) can make a big difference too.
- blang 8y ago
  And at the risk of being down voted, weight loss: https://www.health.harvard.edu/blog/weight-loss-breathing-devices-still-best-for-treating-obstructive-sleep-apnea-201310026713 https://www.health.harvard.edu/blog/weight-loss-breathing-de...
  - en 8y ago
    The risk of sleep apnea increases with age, as well as the morphology (small neck, ...) or neurological problem: https://www.atsjournals.org/doi/full/10.1513/pats.200709-155MG https://www.atsjournals.org/doi/full/10.1513/pats.200709-155... Obesity sleep apnea ≠ Age and morphology sleep apnea, the first can be cured by weight loss, the second is a lifelong "disease" (except surgery that does not last).
  - ryan-allen 8y ago
    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 8y ago
      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.
Diederich 8y ago
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 8y ago
  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.
- spelunker 8y ago
  Agreed. I have a ResMed that uploads the data daily over the cell network and then can view the data in a smartphone app. Like the article mentions it's not terribly detailed but it does show me data like my AHI, and how it has dropped dramatically since using the device. Good enough for me.
surds 8y ago
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 8y ago
  Does it bother you at all while sleeping?
  - johnchristopher 8y ago
    CPAP user here. It's a matter of adjusting to the treatment and setting up the gear correctly. Both can take time. It's worth it.
  - IOT_Apprentice 8y ago
    Not once you find the right mask and get used to the constant pressure. It is truly life changing in terms of energy level and your own health. I switched from a full face mask, which leaked air to nasal pillows (resmed P10) and I am happy.
    - ohnoesjmr 8y ago
      I really struggle with this 5 years in... I open my mouth when I sleep, probably because of adenoids (had them removed twice, keep growing back), so I can't use nose pillows/masks, and the full face mask leaks badly as my bottom jaw is smaller than usual when compared to the top one. I though about chin straps, but my damn head is too big for most of them...
  - ergothus 8y ago
teekert 8y ago
Under the GDPR, isn't this data owned by the patient?
rjurney 8y ago
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.
- walshemj 8y ago
  Having done home dialysis id be very wary of changing the firmware settings on a CPD machine let alone a HD one - but that is a lot more invasive.
- IshKebab 8y ago
  > After another sleep study where they tried many different settings, Sounds like messing with the settings helped you. Of that you'd discourage other people from trying it.
  - abjorn 8y ago
    Professionals tried different settings, that's the key difference.
- tptacek 8y ago
  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).
  - 8y ago
HillaryBriss 8y ago
> “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 8y ago
  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!
- outworlder 8y ago
  Ear damage may occur. Death though? I'm skeptical.
goshx 8y ago
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 8y ago
  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 8y ago
    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?
    - Chris_Chambers 8y ago
      Really? I couldn’t even buy the mask or tube online without a prescription.
gwbas1c 8y ago
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.
naveen99 8y ago
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.
dfischer 8y ago
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.
- geor9 8y ago
  Only on NH will "poor" be phrased "in startup grind mode".
- Hydraulix989 8y ago
  It's pretty hard to do a startup with sleep apnea (I know from personal experience). Take care of your health first.
zw123456 8y ago
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 8y ago
  > 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?
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  - zw123456 8y ago
    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.
- 8y ago
jparishy 8y ago
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.
Tharkun 8y ago
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?
peterburkimsher 8y ago
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.
agumonkey 8y ago
These guys deserve social recognition.

371 points by runesoerensen 8y ago

acd 8y ago

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. "

techbio 8y ago

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?

rhizome 8y ago
For some values of "normal," yes.
Tomte 8y ago
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 8y ago
  I believe these were introduced under the DMCA in '98?
  - hathawsh 8y ago
    Yes. https://www.law.cornell.edu/uscode/text/17/1201 https://www.law.cornell.edu/uscode/text/17/1201

Aloha 8y ago

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

ars 8y ago
That's not entirely true. If you mess up you can end up rebreathing your own air in the tube. It has small holes that are supposed to allow fresh air to mix in even if the machine is not providing any. But they are small. If you are a normal sleeper you would normally wake up and remove the mask if you feel suffocated. (For example a power outage.) If you are with someone who uses such a machine you can test it - unplug the machine, and see how long it takes them to do something (wake up, or remove the mask in their sleep).
- rootusrootus 8y ago
  In my experience, if the power goes out you wake up immediately due to the change in respiratory effort, way, way before you'd suffocate. Even if you could, which would be hard given that you can breathe through the mask when the machine is off.
  - rrauenza 8y ago
    Also, many masks are nose only for those who sleep with their mouth closed (or learn to.)
- jpmattia 8y ago
  > unplug the machine, The only machine I've had experience with (a parent) had an alarm for power loss. Is that somehow not standard/a requirement? Edit: As I think about it, there was an associated oxygen machine, and that was the device with an alarm for power loss. Nevertheless, it seems like an audible alarm on a CPAP would be a really good idea.
  - dumbfounder 8y ago
    Nope. My machine is plugged in where my bed hits the wall, every now and then the bed moves a little in the night and unplugs the machine and I wake up because I am having trouble breathing. But my guess is that this is only a serious hazard for people with very serious health problem, or the elderly. If you are one of those, don't F around.

Apocryphon 8y ago

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

bredren 8y ago
There is a fun sci-fi on topic published last year: Autonomous by Annalee Newitz.

wccrawford 8y ago

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 8y ago
Would these efforts even exist if patients didn’t feel frustrated at the establishment professionals?
cjbprime 8y ago
It's free, open source software. I really don't think they're trying to sell you anything.
chc 8y ago
You want them to present a solution to a problem without implying that the problem exists? That seems like an unrealistic thing to ask for.
lfnoise 8y ago
In my experience, sleep apnea treatment in the US is a racket. The sleep center tried to maximize the number of office visits they could bill before prescribing treatment and the insurance tried to delay approvals and minimize the cost and quality of equipment they would provide. Meanwhile, patient suffers. After 5 months of repeated visits, when another 6 weeks was tacked on, I went out on my own and got the best machine.
deleted 8y ago
[deleted]
ceautery 8y ago
"take some profit from your pocket" is needlessly severe, but the sentiment that doctors are juggling too many patients resonates with me. "Doctors don't have time anywhere in the world" probably isn't accurate, but my doctor certainly never had enough time to listen to me, which caused me years of needless pain because of a simple misdiagnosis. I was frustrated enough with engaging with medical professionals that I instead just adopted a healthier lifestyle. My last regular checkup was in '09, and I next visited a doctor in 2013 when I pulled a muscle in my chest, and wanted to make sure I wasn't having a heart attack. Obviously my anecdote isn't proof that this is a systematic problem, but the fact that I see comments like this "in the wild" at least triggers my confirmation bias :)

rrggrr 8y ago

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 8y ago
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.
- rhcom2 8y ago
  Was that the pressure too high for you to exhale or too low to overcome the apnea?
  - jgrowl 8y ago
    It was just that I'd wake up and feel like I was struggling to move air in. The machine was working as intended as far as I know. It was still registering that air was getting through so it was not adjusting the pressure. I just have allergies and even though I'm on Montelukast, I still have to crank up the pressure just to feel comfortable. I'm not sure now that you mention it, maybe it should have been increasing the pressure.
- DenisM 8y ago
  Get a newer machine, an S10. Steal money if you have to. These are much better, not just the menu but the pressure logic.
  - 8y ago

camelCaseOfBeer 8y ago

Oh, look at that, another patient let down by the American medical system, forced to advocate and find the treatment they needed for themselves. Go figure quality of treatment is set aside for business incentives when healthcare is turned into a business. I wouldn't be so cynical if I hadn't been turned away with shrugs by three specialists and told, "well you can just take pictures of her now" Regarding a rapidly growing bright red tumor, a hemageoma, on my daughter's eyelid. My daughter would've potentially been blinded and branded a pariah if I didn't research treatments using my university's medical db. Literally one week of a topical beta blocking ointment with no adverse side effects and the tumor vanished. The thought of all the children wearing unsightly tumors on their faces, some even going blind, all because their pediatrician can't bother to read a journal makes me sick.

diob 8y ago

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.

jimison 8y ago
> I can't afford to do another sleep study (American Healthcare rocks!). That's the invisible hand of the free market taking care of you!
- njarboe 8y ago
  Almost nothing about the American healthcare system has anything to do with a free markets. From medical schools, to opening a new hospital, to pricing, to forced insurance, healthcare tied to employment, companies or government pay for almost all of it, FDA drug approval process, etc. Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all.
  - jimison 8y ago
    Touche. Perhaps the rhetoric of free-market-can-solve-everything Libertarians, the get-the-government-out-of-my-health-care Republicans, and the healthcare-is-a-human-right Democrats are all co-opted by America's crony capitalism and we get... this.
  - mullingitover 8y ago
    > Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all. The free market is simply incompatible with health care. Imagine a world where, any time you have a life-threatening health problem, you can expect to transfer everything you own to the hospital, since they have perfect leverage over you.
    - 8y ago

werdnapk 8y ago

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.

TylerE 8y ago
They are very much not bunk. They don't work for everyone. For people (like me) that they work for, the benefit is large, and immediately obvious.
iancmceachern 8y ago
Doesn't weight loss help many patients improve?
- werdnapk 8y ago
  Generally yes, because the throat is less constricted when you're not overweight.
- jgrowl 8y ago
  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.
- dreamcompiler 8y ago
  OSA can be caused by many factors. Weight is only one. I'm skinny and I'd be dead without CPAP.
- 0xcde4c3db 8y ago
  It usually helps, but as with most obesity-linked conditions it's not suitable on its own as a first-line treatment. The effect is small compared to CPAP, and sufficient weight loss to see that effect takes months, whereas CPAP starts working literally overnight (DME/insurance shenanigans notwithstanding). Also, chronic sleep disruption is associated with a cluster of symptoms (impaired insulin sensitivity, lethargy, increased hunger) that make it very difficult to lose weight in a normal/healthy way. Many patients find that they lose 10-20 pounds after starting CPAP with no conscious change in their lifestyle.

bryan11 8y ago

What other device hacking subcultures exist for medical devices?

cjbprime 8y ago
Diabetes! The first marriage of a continuous glucose monitor to an insulin pump was by an open source community called Nightscout.
mikequinlan 8y ago
Open Artificial Pancreas System (OpenAPS) for Type 1 Diabetes. https://openaps.org/ https://openaps.org/
sambroner 8y ago
Lots in diabetes care.
iancmceachern 8y ago
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
davio 8y ago
First one I heard about was using sound amplifiers for hunting instead of hearing aids from an audiologist.

crimsonalucard 8y ago

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.

Diederich 8y ago
My understanding is that sleeping on one's side (rather than back) can make a big difference too.
blang 8y ago
And at the risk of being down voted, weight loss: https://www.health.harvard.edu/blog/weight-loss-breathing-devices-still-best-for-treating-obstructive-sleep-apnea-201310026713 https://www.health.harvard.edu/blog/weight-loss-breathing-de...
- en 8y ago
  The risk of sleep apnea increases with age, as well as the morphology (small neck, ...) or neurological problem: https://www.atsjournals.org/doi/full/10.1513/pats.200709-155MG https://www.atsjournals.org/doi/full/10.1513/pats.200709-155... Obesity sleep apnea ≠ Age and morphology sleep apnea, the first can be cured by weight loss, the second is a lifelong "disease" (except surgery that does not last).
- ryan-allen 8y ago
  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 8y ago
    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.

Diederich 8y ago

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 8y ago
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.
spelunker 8y ago
Agreed. I have a ResMed that uploads the data daily over the cell network and then can view the data in a smartphone app. Like the article mentions it's not terribly detailed but it does show me data like my AHI, and how it has dropped dramatically since using the device. Good enough for me.

surds 8y ago

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 8y ago
Does it bother you at all while sleeping?
- johnchristopher 8y ago
  CPAP user here. It's a matter of adjusting to the treatment and setting up the gear correctly. Both can take time. It's worth it.
- IOT_Apprentice 8y ago
  Not once you find the right mask and get used to the constant pressure. It is truly life changing in terms of energy level and your own health. I switched from a full face mask, which leaked air to nasal pillows (resmed P10) and I am happy.
  - ohnoesjmr 8y ago
    I really struggle with this 5 years in... I open my mouth when I sleep, probably because of adenoids (had them removed twice, keep growing back), so I can't use nose pillows/masks, and the full face mask leaks badly as my bottom jaw is smaller than usual when compared to the top one. I though about chin straps, but my damn head is too big for most of them...
- ergothus 8y ago

teekert 8y ago

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

rjurney 8y ago

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.

walshemj 8y ago
Having done home dialysis id be very wary of changing the firmware settings on a CPD machine let alone a HD one - but that is a lot more invasive.
IshKebab 8y ago
> After another sleep study where they tried many different settings, Sounds like messing with the settings helped you. Of that you'd discourage other people from trying it.
- abjorn 8y ago
  Professionals tried different settings, that's the key difference.
tptacek 8y ago
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).
- 8y ago

HillaryBriss 8y ago

> “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 8y ago
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!
outworlder 8y ago
Ear damage may occur. Death though? I'm skeptical.

goshx 8y ago

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 8y ago
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 8y ago
  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?
  - Chris_Chambers 8y ago
    Really? I couldn’t even buy the mask or tube online without a prescription.

gwbas1c 8y ago

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.

naveen99 8y ago

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.

dfischer 8y ago

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.

geor9 8y ago
Only on NH will "poor" be phrased "in startup grind mode".
Hydraulix989 8y ago
It's pretty hard to do a startup with sleep apnea (I know from personal experience). Take care of your health first.

zw123456 8y ago

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 8y ago
> 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?
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- zw123456 8y ago
  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.
8y ago

jparishy 8y ago

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.

Tharkun 8y ago

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?

peterburkimsher 8y ago

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.

agumonkey 8y ago

These guys deserve social recognition.