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Why Sleep Apnea Patients Rely On a Lone, DRM-Breaking CPAP Machine Hacker (vice.com)
Jason Koebler writes: "SleepyHead" is a free, open-source, and definitely not FDA-approved piece of software for sleep apnea patients that is the product of thousands of hours of hacking and development by a lone Australian developer named Mark Watkins, who has helped thousands of sleep apnea patients take back control of their treatment from overburdened and underinvested doctors. The software gives patients access to the sleep data that is already being generated by their CPAP machines but generally remains inaccessible, hidden by DRM and proprietary data formats that can only be read by authorized users (doctors) on proprietary pieces of software that patients often can't buy or download. SleepyHead and community-run forums like CPAPtalk.com and ApneaBoard.com have allowed patients to circumvent medical device manufacturers, who would prefer that the software not exist at all. Medical device manufacturers fought in 2015 to prevent an exemption to the Digital Millennium Copyright Act to legalize hacking by patients who wanted to access their own data, but an exemption was granted, legalizing SleepyHead and software like it.
Christy Lynn was tired all the time, and, after months of trying to diagnose the problem, one of her doctors thought they’d figured out why.
“I didn’t fit any of the descriptions for sleep apnea,” she told me on a phone call. “I’m a woman, I wasn’t overweight. No one would have thought to test me, except I was seeing a doctor who had a similar medical history.”
Prediction for end of Universe #42: Fencepost error in Quantum_bogosort.cpp
or garage door openers their remote codes, the system should have switched to needing an exception to having to prove that it was legitimately copyright material.
But as I said elsewhere, I'll take "Evidence the USA is an Oligarchy" for $500
Fuck that, I'm lazy, motherfucker.
You know who needs to worry about my weight? Me, and whomever I'm fucking. If you're not one of those two, piss off.
Comment removed based on user account deletion
Visit alibaba and pick up an up to date advanced CPAP machine for the cost of your copay from these shit companies.
I've had a narrow naropharyngeal cavity my whole life. Great for holding your breath underwater, but terrible for breathing while laying down.
Or... you're an idiot who doesn't know anything about it? I'm 6' 3" and I weigh under 92kg. I constantly sleep with my mouth open because my nose is so badly blocked (most likely a deviated septum, which affects ~80% of the population) Sleep Apnea isn't always weight related and often has the same symptoms as ADHD.
I had a deviated septum. Spent most of my nights trying to transfer breathing between left and right nostrils. My wife finally convinced me to do the surgery. It wasn't pleasant, but it was life changing! I had never breathed through both nostrils at the same time before. For the last 20 years years now I still am so thankful for that surgery. DMJC, I encourage you to get it done.
I've snored like a train ever since I was a teenager, and I was about 150lbs at 5'10".
The data from each CPAP manufacturer is locked-in to their ecosystem. Often the only way for users access their data is upload it to the manufacturer's system. This means that if you change manufacturer, then you can't take your old data with you. Even worse, sometimes the manufacturer also lock-in the user to their agent where the user needs to visit the agent to get a detailed report to provide to the sleep physician.
You break all the laws of physics and you seriously think there wouldn't be a price?
...and I've used Sleepyhead. I certainly appreciate it, but nobody "relies" on it - all the machine settings are available on the unit and Sleepyhead basically just displays info. It's very cool.
So for data nerds like me I like to dig into it, but the fact that I slept 7 hours 3 minutes last night with 4 wakeups vs 6 hours 52 minutes the night before with 6 wakeups really isn't critical information in any way.
And let's be honest: as much as I'm a tech-head, me "using the data" to fuck around with the settings on my machine is about as likely to kill me as NOT 'using the data" to fuck around with the settings on the machine.
-Styopa
God, I wish someone would do something similar for hearing aids. If only a diet of burgers and pizza caused hearing loss, maybe people could stop getting bent over by hearing aid makers and audiologists. Disclaimer: I know that being obese isn't the only cause of sleep apnea, but it sure is the reason for a lot of people.
the manufacturer should be able to protect with DRM is an audit log.
In court, it may be very handy to know that someone was operating the medical device with modifications not created, authorized, tested, or approved by the manufacturer (or the FDA, for that matter).
Otherwise, it's their f***ing device; they should be able to do whatever they want with it.
OP alluded to that individual as being a "Fatty Fatty McFat". The chosen quote stands as direct contradiction to OP's worthless drivel. Nothing more needed to be said...
And then, YOU, opened your mouth. *shakes head*
Sleepyhead software is great. It allows you to view the medical data your CPAP machine tracks, but is not normally accessible to you, the patient. Did you get that? It's your medical records, they belong to you, but you are not normally allowed access to them. You need that information to track your progress and make informed decisions about your care. Without this software, if you want to view the data, you must request it from your doctor's office and they typically charge you a fee for copying it. Fuck that.
My view is that the patient is responsible for their own health and doctors should only act in an advisory capacity to make recommendations for improved health. Software like this gives you back control and that's why I think it is so important.
most likely a deviated septum, which affects ~80% of the population
If it effected 80% of the population, it would be a normal septum and the people without issues would have the deviated septum.
This seems like a gross hyper-diagnosis similar to how everyone is diagnosed with attention deficit disorder now.
1) Relax the standard until everyone has it.
2) Sell treatments to all 8 billion people.
"His name was James Damore."
Yeah, because weight is why I have a Class IV soft palate that seals my airway when I lie down. Weight is why I have central apnoea, when my brain just forgets to breathe.
Oh wait it's got nothing at all to do with either of those things, you no-talent arse clown
Do I hear a squeaky mouse trying to annoy the cat that is not interested? Your bad attempts at humor can not even cut the cheese in the mouse trap. Guess you get to live another day. For some People, a serious medical problem exists, blame it on the family tree. Medical Definition of deviated septum. : deviation of the nasal septum from its normal position that results from a developmental abnormality or trauma and may be asymptomatic or cause nasal obstruction and predispose to sinusitis and nosebleed. Deviated Septum Medical Definition | Merriam-Webster Medical ...
I've got a Philips Respironics DreamStation, and use their Dreammapper app.
Other than being able to save the data, what's the difference between Sleepyhead and Dreammapper?
General Relativity: Space-time tells matter where to go; Matter tells space-time what shape to be.
If it effected 80% of the population, it would be a normal septum
Normal would be straight and in alignment.
and the people without issues would have the deviated septum.
I have a deviated septum (discovered due to a completely unrelated problem for which I was getting a CT scan). I have no issues relating to sleep apena or breathing.
It is most definitely possible for a large portion of a population to have a medical condition that is completely irrelevant to their lives. As usual it's the really severe issues that actually present some symptoms or require some treatment.
If it effected 80% of the population, it would be a normal septum and the people without issues would have the deviated septum.
In this context, it's the original word meaning. It's not meant as in "their nasal septum is different from normal population", it simply means "their nasal septum isn't straight but is curved".
It's indeed extremely frequent in the population.
But whether it impacts health is an entire different problem.
A non straight wall in your nose doesn't automatically causes apnea, it merely increases the risk.
There are no 80% of over population with apnea.
"Sufficiently advanced satire is indistinguishable from reality." - [Tips: 1DrYakQDKCQ6y52z6QbnkxHXAocMZJE61o ]
Penis
penis
You need to be locked in the mental hospital
Or... you're an idiot who doesn't know anything about it? I'm 6' 3" and I weigh under 92kg. I constantly sleep with my mouth open because my nose is so badly blocked (most likely a deviated septum, which affects ~80% of the population) Sleep Apnea isn't always weight related and often has the same symptoms as ADHD.
If you're going to try and educate people on this, try not to include ridiculous exaggerations.
Let's clarify your "~80%" statement. No one has an absolute perfect septum. Because of that, the majority of people do have some deviation, but deviations extreme enough to affect breathing and cause sleep apnea are much lower. As in one to six percent of the adult population.
If 80% of the population were actually affected, you would see sleep apnea machines sold with every bed frame and mattress, and Mark Watkins would probably be a billionaire.
Sorry to intercept this discussion. I just want to give you ideas on how other jurisdictions handle this. Specifically the EU with the GDPR. There is a provision where the person, if he changes "providers" he can request from the old "provider"/data processor to send his personal data on file to the new one. Medical data are clearly personal data. Also there is another core provision where you have the right to request from the data processor to answer you what personal data of you he has on file. And if he doesn't answer he faces big fines. And of course all these rights are also actionable.
Access to one's own medical records in full should be a basic right for us all. In line with this, all treatment machine records should be accessible by the patient. That most patients have no ability to make use of all this information is true but beside the point. That's what we hire medical experts to do.
You lead such a sad life child. If you need a hug... go back to the mirror.
Wait, you forget how to breathe, but somehow Iâ(TM)m the clown? Lol
A lot of the problems people run into are that the needed pressure isn't the same every day - you get stuffy, clear up, allergies, no allergies, swelling, no swelling and so on. Just rolling over can change your needed pressure. Having the same sort of issues where it wouldn't work correctly I switched to APAP about 10 years ago and have never looked back. It uses that software and auto-adjusts your pressure on the fly so you never have to mess with anything. I used to have to change pressure almost seasonally, but in the last decade I haven't had to touch anything.
The reason most doctors give you a CPAP (one set pressure) vs an APAP (has a range of pressures that will change based on those same metrics (hypopneas, etc) is that a CPAP is cheaper ($300 or so). A CPAP is in theory better if you NEVER need a new pressure, ever (e.g. it doesn't have to test for leaks, hypopnea, etc) but that rarely seems to be the case.
You will also find with CPAP it is nearly impossible to lose weight because if you lose (or gain) weight the pressure is now wrong and suddenly you can't sleep anymore - and then it can take up to 6 months to get your pressure changed. I went to APAP and now if I lose weight, it just auto adjusts.
Maybe not for everyone but something to look into...
If 80% of the population have reduced lung capacity from smoking or having suffered pneumonia/bronchitis, you wouldn't call that reduced lung capacity "normal" would you?
Even if your lifestyle puts you at certain risks there is no reason why you shouldn't do everything within your power to mitigate them even if if means hacking your CPAP machine to break DRM.
I'm not overweight but I've been monitoring my sleep as best as I can and it's not good. I might benefit from one of these....maybe...I plan to consult a doctor.
Some people like to eat too much and exercise too little, while others drink too much and others jump out of airplanes.
I'm certainly not going to criticize the people who go sky-diving for wearing a freakin' parachute.
Personally, I wouldn't even want to get into the kinds of planes many of those skydivers jump out of, but they enjoy it so more power to them. Most of them survive.
Sleep apnea is a genetic disorder that can generally begin to show symptoms in a person
when they are in their teens. It's a very, very recent diagnosis in medicine and it's still not fully
understood what the true cause is, or the "best" treatment besides air pressure (that is until
recently, throat surgery was performed to "scar" the soft tissue thinking that that prevent the
obstruction from occurring).
It's easy to identify now that there's better awareness; does your teen snore and generally acts
"teen like" (lazy / tired)? Wake up groggy with a headache? Yup, they most likely are suffering
from sleep apnea.
The snoring is not sleep apnea, but the brain's way of waking the person to start breathing again.
The apnea is the "quiet" time before the snoring. It's cyclic all through the night. What happens is
the person wakes just enough to start breathing, then falls asleep again. This prevents the person
from actually getting the necessary deep sleep which is why the tiredness throughout the day. For
a young person, with lots of energy to spare, the daytime effects are hard to pick out. I suspect
there's a large population of young adults who are suffering from this because their youth mask
the true symptoms (unless a sleep study is performed). They're "fine" after a cup of coffee, etc.
So, it's not a weight / obese problem at all. And it's more serious than just being tired, organ stress
from low blood oxygen, stroke are possible risks of untreated sleep apnea.
Also, this DRM stuff has gotten completely out-of-hand.
CAP === 'averred'
I hope you are not a doctor (but you could be).
However While Obesity can be a factor in sleep apnea, it isn't the only one. They are some very Obese people without it, and some skinny people with it.
Now Obesity is a more complex issue to treat then just Eat Less, exercise more Calories in is less then calories out...
If you try to starve yourself, your body will burn less calories, as well you will have less energy in exercising. If you just going crazy with exercising, you can injure your self then put yourself in a condition where you cannot exercise for an extended period of time. Also as you start exercising more, you will need to eat more, if you don't then you put yourself in the starvation mode.
Diet fads are always changing, and it is difficult to find the good ones vs the fad of the week.
Now if Sleep Apnea is a complication related to obesity. a CPAP machine which helps them get a good night sleep, is the first phase to help them loose weight. Having a full night sleep gives them more energy during the day. To Exercise and also exhaustion from lack of sleep will tend to make you want to eat more because it is your body saying I need more energy! So a good night sleep and feeling more refreshed means you don't need to eat as much during the day.
We have all made poor life choices in the past. And there is always something better we should be doing. But we can't start judging people from every bad choice they made, and punishing them further beyond the natural consequences of such actions.
If something is so important that you feel the need to post it on the internet... It probably isn't that important.
I certainly agree that the physicians are overburdened, but I don't agree with the accusation of "underinvested". They are not there to be data shepherds, their job is to get the patient set up and hopefully doing better with CPAP. The physicians have a limited amount of time - often dictated by the insurance industry - to work with patients and carving out time for them to handle machine data is pretty nearly a non-starter.
After all, the physicians don't have a responsibility to provide patients with raw EKG data, why would be be expected to make raw CPAP data available? Now, the fact that the manufacturer makes it so difficult for the patients to get to is another issue, but blaming it on the physicians themselves doesn't make a lot of sense here.
Damn_registrars has no butt-hole. Damn_registrars has no use for a butt-hole.
I've had sleep apnea all my life. My weight fluctuates, my sleep apnea doesn't. The one thing that makes it really bad is alcohol. Severe apnea + alcohol + not using a CPAP will take years off your life by starving the heart for oxygen at night. Many people end up with congestive heart failure.
I've nearly eliminated my drinking, I use a CPAP and I exercise. Guess what? I still have sleep apnea.
Troll your uninformed medical opinion somewhere else, you worthless fat shaming prick.
I've been trying to gather courage to get the surgery for the last 30 year ! I just can't stand breathing through my mouth (it gets dry and uncomfortable in seconds) so I sleep with something pushing my nose to a side or the other, to free one nostril (basically I sleep on my belly with the nose pushing against my hand or the mattress). I know I should get it done, but I've had surgery for a broken nose 30 years ago and the wake up stage and later 'emptying' was so unpleasant that I just don't want to do it again.
Non-Linux Penguins ?
Roads are being built.
You know who needs to worry about my weight?
Obama-care is a thing. Your medical issues are every taxpayer's business.
Have gnu, will travel.
If it effected 80% of the population...
Wow, I guess I have some pretty major misunderstands of the reproductive system.
She's 62 years old from TFA.
Everyone in sleep medicine should know that for post-menopausal women the prevalence of sleep apnea begins to approach men's prevalence.
In reality (IMHO), there are very few people who escape any sleep-disordered breathing at an advanced age.
The Hypnolaus Population Prevalence study revealed this truth. The average AHI (# of breathing events per hour of sleep) in 40-65 year old age group is higher than the cutoff for mild sleep apnea.
And this is not predominantly a weight issue, average BMI (body mass index) in that study (switzerland) was 25.6. The US population is probably about BMI of 29 for that same age group.
BMI ranges
Under weight 30
Are you fucking kidding me.
If this story was about the cops or the military needing more money you'd be in here modding it up. Talking about let the cops do their jobs, give em anything they want.
Fuck you asshole.
I had a friend who got drunk one night, forgot to wear his cpap mask, and he died in his sleep because of it.
Doctors said alcohol and sleep apnea mixed with not wearing a mask caused his heart to stop.
The article concentrates on US copyright law.
Mark Watkins lives in Australia and hos lead translator is in the Netherlands.
The last time I checked, the FDA and US Copyright office had no jurisdiction in those countries.
"Now if Sleep Apnea is a complication related to obesity. a CPAP machine which helps them get a good night sleep, is the first phase to help them loose weight. Having a full night sleep gives them more energy during the day. To Exercise and also exhaustion from lack of sleep will tend to make you want to eat more because it is your body saying I need more energy! So a good night sleep and feeling more refreshed means you don't need to eat as much during the day."
This so much. I was just recently diagnosed with sleep apnea, and of course I am overweight with a BMI of 35. Before diagnosis I was always tired, no energy, headaches etc. It took a month of therapy before I realized I actually had energy again. I 'wanted' to work out. I finally had energy throughout the day and I wasn't wanting to fall asleep a couple of hours of waking. I literally feel 5 years younger. The weight is starting to come off. I'm eating better. I'm exercising all the time now. CPAP has changed my life. Now if could only get off shift work I would feel like a million bucks.
You also, apparently, get zero fucks.
Not as long as a third of my copay goes to paying for your fucking diabetes treatment.
https://www.google.com/search?q=la+didgerdou+apnea&ie=utf-8&oe=utf-8&client=firefox-b-1
There is some weak evidence (few studies) that playing a didgeridoo improves sleep apnea. The mechanism creating the benefit is increase muscle tone from blowing into resistance, creating less 'floppy' tissue in the airway. In other words, exercise improving muscle tone.
I would rate this is "unproven, worthy of more research."
I've had sleep apnea for some years. When I took up playing the shakuhachi in recent years, I stopped waking up gasping for air. That used to happen a few nights a year. Oh, one report like this is meaningless.
I suggested this to one of my friends, who laughed and said he couldn't imagine bringing home a didgeridoo and playing it in front of his conservative Jewish Wife. (Simple fact; that is a close quote, she (as he is) is Jewish, and a wife (he's a husband), and the world would be better if there were more people like her, Jewish or not. Do not read anything else into it.).
So, he suffers.
There is an alternative, called a Zbox which is much shorter, I have no idea if any sound is generated, and no idea if it works:
https://laoutback.com/products/zbox-therapy-for-sleep-apnea-and-snoring.
An interesting question: does the principle of blowing into resistance works with any musical wind instrument, or, say, balloons?