Why Sleep Apnea Patients Rely On a Lone, DRM-Breaking CPAP Machine Hacker (vice.com) 154
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.
The minute printer makers DRMed ink (Score:5, Insightful)
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
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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
Finally, after half a comment section of random flaming, a relevant comment. Bravo.
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Care to elaborate ?
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OT, but a friend brought me a bunch of CPAP machines from a tech junkyard. They're pretty nice little air supply devices for forced air cooling in my lab...quiet and powerful, and not all that hard to reprogram for that use.
AND... buy Chinese (Score:1)
Visit alibaba and pick up an up to date advanced CPAP machine for the cost of your copay from these shit companies.
Re: AND... buy Chinese (Score:2)
In order to fix medicine you want to eliminate all standards and oversight? That's cute. While we are at it let's fix aviation by eliminating the FAA and all licensing requirements.
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The invisible hand of the market will fix it; if too many planes crash, customers will switch to competing airlines. It seems to be working for Malaysia Airlines.
Re: AND... buy Chinese (Score:4, Insightful)
There is no need to eliminate the FDA, because specifying and managing the testing of compounds is a vital function that would have to be introduced anyway. Instead, I would strip it of its power to keep products off the market. This is the power so often abused by well-connected corporations. Preventing generic anaphylactic shock inhalers that are available on the world market from competing with Mylan is a prime example.
Let doctors and medical payers keep using "approved by the FDA" as a gold standard while at the same time having the option of importing and using a products that has passed similar regulatory regimes in other major nations when it becomes general knowledge that the fix is in.
The FDA should also be required to show its work in full when it renders an opinion. This is information that doctors and payees may need when evaluating the quality of its recommendations.
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... "approved by the FDA" as a gold standard ...
That standard being those with a lot of gold get to determine the standards. The FDA is largely a scam to protect legal drug dealers.
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Disclosure if the decisonmaking process would show us when this kind of thing is happening, and having the FDA be advisory only would allow us to buy elsewhere when it does.
Comment removed (Score:5, Funny)
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Sorry to hear that you and reality aren't on speaking terms.
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You left out child pornographers and I didn't see any references to either Judaism or Islam, so please keep working on your material. BTW, this is merely intended as constructive criticism; I wouldn't have said anything at all, unless I liked your work.
CPAP Lock-in (Score:3, Informative)
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.
Re: CPAP Lock-in (Score:1)
You car likely has the same feature, lots of data about you that "belongs" to the manufacturer.
Re: CPAP Lock-in (Score:4, Insightful)
The particular aggregious thing about this is that these machines get FDA licensure as 'medical devices', and the US Congress, which empowers the FDA and all forms of US copyright protection by the weight of the laws they pass such as the DCMA allowing crap like DRM, has also passed laws making it a punishable crime (HIPPA) to withhold a patient's medical information from them whenever they request it. They can, at most, charge a nominal fee for the copying of the information to give to you, such as a $5 or $10 cost of burning a CD with your MRI images, etc. I wish someone with some time on their hands and some kahonas on them would sue the living shit out of the manufactures of these devices for violating the law. It's pretty pissy to hold data for a piece of property that someone owns from them, like auto data for the car in your own driveway, bad. But holding back data that affects their health? After they pay ridiculously marked-up prices for these little pumps and hoses? They need to go to 'get fucked-in-the-ass-every-night Federal prison' for a few years. Fucking pieces of shit. That's not a capitalism or socialism thing. That's just dickwads being low life scum.
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Re taking your data with you: How portable is this data anyway? Is it realistic to take data from one device and use it (perhaps with custom-programmed transformations) to directly control another device in a way that does not invalidate its certification and clinical testing results? I'm fairly ignorant on these issues so may be talking out of my ass.
The main settings are air pressure levels measured in centimeters of water that can be displaced. Common CPAP (continuous) and APAP (automatic) machines have a range from 4 - 20 cm H2O. Those standard settings can be moved.
Each vendor uses their own algorithms to detect & correct apnea events. There are usually some other comfort settings such as humidity & hose heating that are vendor-specific too
It is realistic to take the settings from one brand to another but it is generally recommended to stay
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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 are totally wrong!
Almost all except some travel CPAP machines have SD cards. When you use Sleepyhead to access the SD card, the forst thing it does is make a backup copy of that data on your machine, Even if the card is erased, you still have your data,
Disclaimer: I am a CPAP user and have used SleepyHead software.
I use CPAP... (Score:5, Informative)
...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.
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...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.
It's not relied upon in the same way that a pacemaker is. However, if the CPAP is logging medical data generated by the user, and the user cannot access that data purely because of artificial means that benefits anybody other than the patient, and Sleepyhead helps to give those patients access to their data, then yes, I would argue that it's "relied upon". Either Sleepyhead is relied upon to get the data, the company's software which end users can't access is relied upon for that same data, or the data the
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and the user cannot access that data purely because of artificial means that benefits anybody other than the patient,
It takes me a half an hour to walk into the local medical device supplier and get a printout that the government will accept. It once took a day because I had changed suppliers and they had to get the account control away from the old company.
Free. This costs them money.
Either Sleepyhead is relied upon to get the data,
I would be fascinated to hear from the people who try to send in "Sleepyhead" reports for their commercial driver's or pilot's licenses, and if the US government agencies involved accept third-party open-source software decoding the data.
or the data the CPAP collects cannot be read at all, defeating the purpose of the CPAP.
I
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Your doctor relies on the data to make sure it's working properly, or at least he should. If the company ever goes under, gets bought out, or decides to stop supporting the model, you'll be glad you can still read the data. It's also useful to people without insurance. They don't have doctors to review the info and look over it themselves.
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It sounds like you need to ramp up more quickly, so you don't feel you're running out of air when it first starts up. Or your minimum pressure is set too low and needs to be higher - it would depend on whether you're having the starving sensation just at first and it gets better, or if it never gets right, the second instance is probably it. If you reported these sensations/symptoms to your Doc, he should have adjusted the pressure on you a few times.
Also have you tried the nose-only masks? I use one cal
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I tried a dreamwear, but I sleep on my side and that squishes one of the supply tubes closed, and I could hear the air rushing through them.
My mask of choice, really the only one I've found I like, was the Puritan-Bennett Breeze (I use the pillow version, but they had mask ones as well), but they stopped making them a year or so ago. Fortunately, I would buy a new one once or twice a year and have a few old ones that are still functional, but I would really like to find an alternative that works as well at
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That's too bad about the pinching. I know exactly what you mean, but fortunately I use a hospital type bed to keep my legs elevated, and due to that I sleep in a "Z" formation and am forced onto my back. Before the good bed, I also used to sleep on my side.
The one feature of the Dreamwear mask I like is that top-of-the-head hose positioning, it makes for less things to turn when you move your head around and seems to be the most comfortable.
It's too bad you can't reinforce the side tubes on the mask, maybe
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if they were stiff, they'd be uncomfortable. That's what I like about the Breeze - the supply tube runs over the top of the head over a metal/plastic frame, and just has velcro straps around the side of the head to keep it in place. I suspect it's not so popular because most people sleep on their back and in that case, the head would be resting on the back of the frame and it's not so comfortable that way.
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A CPAPTalk forum member here. Although the forum is owned bu CPAP.com supplier, they are very hands-off and it is lightly moderated.
Assuming you have an APAP (automatically adjusting) machine. your starting pressure may be too low. That is true for most people but I seem to rest better if my starting pressure is at a low of 5. Headache can be a sign of unresolved apnea issues. Many of us find the ResMed P10 nasal pillow mask unobtrusive & quiet if you can breathe through your nose. Even though I have s
Re:I use CPAP... (Score:4, Informative)
I'm also a data nerd, and I figured out how to get into the config menus, etc. on mine. I was able to turn on user info screens that were turned off by default so I get the previous night's data on my sleep, but for a weekly/monthly summary and chart I have to go do my doctor.
The model I have has a cell phone in it! The older ones wrote data to an SD card, and you'd have to bring that in with you when you went to the doctor every 3 months or so for evaluation, but the cellular models download the data after every night's sleep so the doc can see problems, etc. right away.
The other issue is insurance. They will only pay for it if it is providing a positive medical benefit to you, so the data uploaded to the doctors is also used as proof the item is being used and that it is indeed effective.
I'm hoping I can use the software but without the machine snitching on me or failing to report the data to my doctor. I will have to surf the forums there to make sure that won't happen to me if I decide to try using the software.
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I have the same model as you. Mine relies on the Cell data connection exclusively, but mine as yours does have the SD card slot, it's just empty on mine.
My thoughts are twofold, one is if I stick an SD card in the slot can I copy prior data to it, or does it need to be in at the time of use to receive the required data? And, two, if it dumps the data via cell then hopefully it's still available for copying to the SD card as well.
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The data in Sleepyhead is much more thorough than what my machine or my machine's mobile app shows me. You can use this info to have much better insight into the efficacy of your treatment and allows you to fine-tuning your machine.
The only thing (Score:1)
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.
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But it's not theirs. It's yours. You rent it for a year and you own it after that. Or your insurance pays outright for it when you get it, depending on the type of insurance you have. But it is definitely yours, not theirs.
Re: The only thing (Score:2)
The hell I donâ(TM)t own it. I paid good money for my device. My insurance is crap, so I had to pay for everything- the at home testing, the device, masks, hoses. I own it, and I can do what I want with it, including decrypting the data so I can use it myself. They can go fork themselves.
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And they should even be allowed to sell the device, so that it becomes someone else's in exchange for money.
Sleepyhead (Score:5, Insightful)
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.
Differences from Dreammapper? (Score:2)
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?
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I also have the app, which doesn't say anything, really, gives you a couple numbers and that's it.
this software shows you everything there is to see in the much more detailed stats from the machine
Re:Differences from Dreammapper? (Score:5, Interesting)
I prescribe CPAPs for a living as a licensed medical provider, and I also use a DreamStation as a CPAP user. Well, used. Once. And promptly decided it was so limited and user-focused as to be useless.
The consumer view of the CPAP data is limited, trivial, and summary only. It doesn't show 1/10th of the things that I get from the proprietary software, that actually shows me *when* and *where* things are happening. For example, I can look, per night, at when the pressures on an AutoCPAP (yes, "AutoCPAP" sounds like an oxymoron. It's actually not) go up or down, and how the respiratory events changed on that basis. If a patient usually takes off his or her mask when the AutoCPAP pressure goes above 10 cm H2O, that tells me something very different than if they keep the mask on at that pressure, but that the pressure changes don't seem to be reducing apnea events,
I get the rationale: patients, given unlimited access to medical data, might be inclined to fiddle with settings based on it, which then complicates the actual treatment. But the fact is it's trivial to find out how to change the pressure settings on any ?PAP machine (CPAP, BiPAP, etc.) by either fiddling or Googling, so there's really no prevention of patient meddling, just *informed* patient meddling.
Oh, and I can't even give my patients their own data. I can give them summary printouts, and do on a regular basis, but that's not the raw data, suitable for further manipulation, it's a PDF that's pretty to print and look at, that has all the appropriate, reasonable, and customary summaries and common methods of displaying the data... but has no interface for someone else to go in and slice and dice it differently.
Of all the problems in the sleep medicine world, I think the biggest is patient ignorance ("it's just snoring") and underscreening. Data obscurity isn't in the top 5, in my book, but I still understand the right to obtain one's own data.
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One of the reasons you hold this view is that you're looking at sleep medicine through the narrowest possible end of the telescope. Apnea has the thinnest etiology of all major sleep problems. The dimensionality is low enough that it almost becomes possible (even preferable)
Access to medical records (Score:3)
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.
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Access to one’s own records will empower patients who do take care of themselves. That large numbers of people will default to having decisions all done for them is beside the point.
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Stories like this are why I’m so unsympathetic toward MDs who can’t be bothered to embrace technologies like electronic medical records. Sure, the early interfaces are generic and poorly differentiated by user (anesthesiologists need to interact with an EMR differently than do nephrologists, for example). But only if medical professionals care about simplifying their jobs in the long run by taking the trouble to learn new nsystems now, ad at the same time be proactive about keeping management in
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You went to the wrong provider for your test. You didn't know it at the time you had the test performed, only after, when you wanted to get the images. I argued with my cardiologist and my vascular surgeon to get the images and results for my tests - ultrasounds and CT scans. Finally, I realized my error and went to a lab / test facility where I can get the images for the tests on CD / DVD. Usually, I take the CD / DVD to the doctors office to see if they want a copy. After a CT scan several months ago
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Lots of information should be available to individuals. But information is money, and nobody gives away money for free.
APAP (Score:1)
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 sea
Underinvested doctors? (Score:2)
After all, the physicians don't have a responsibility to provide patients with
From TFA: (Score:5, Insightful)
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.”
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... except the earth shook when she walked over ...
... and it shook so much that a bag of rice toppled over in China.
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Do please pay attention when you read so you can hurl accurate insults.
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What? There are CPAP machines specifically made for women.
https://www.resmed.com/us/en/c... [resmed.com]
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What? There are CPAP machines specifically made for women.
I realize that page is nothing but a sales advertisement, but beyond the sales pitch that device doesn't seem to do anything different from all the others.
Scroll down to the "Functional Features" comparison.
Out of 15 things listed, there is only 1 (one) single checkbox that the device called "AirSense 10 AutoSet for Her" has which the normal device "AirSense 10 AutoSet" does not have.
That one feature is called "AutoSet for Her"
Note just above, both have "AutoSet"
Now scroll back up to the one paragraph secti
Re:From TFA: (Score:5, Informative)
It remains less common in women, and far less successfully diagnosed for them. There is a good NIH study on the issue at https://www.ncbi.nlm.nih.gov/p... [nih.gov] .
Lern 2 reed gud! (Score:3)
And then, YOU, opened your mouth. *shakes head*
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Yeah, we get it, I say sky, you say ground. Go on, say it...
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You know who needs to worry about my weight?
Obama-care is a thing. Your medical issues are every taxpayer's business.
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Re:Sleep apnea? Lose some weight (Score:5, Insightful)
I've had a narrow naropharyngeal cavity my whole life. Great for holding your breath underwater, but terrible for breathing while laying down.
Re:Sleep apnea? Lose some weight (Score:5, Informative)
Re:Sleep apnea? Lose some weight (Score:4, Interesting)
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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.
Re: Sleep apnea? Lose some weight (Score:1)
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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.
Latin, mother fucker, do you speak it ? (Score:4, Informative)
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.
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There is no such thing as a perfect septum
It may surprise you that medical definitions do not include the word "perfect".
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If it effected 80% of the population...
Wow, I guess I have some pretty major misunderstands of the reproductive system.
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You also, apparently, get zero fucks.
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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
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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
Re:Sleep apnea? Lose some weight (Score:5, Informative)
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.