Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
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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.
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?
Apparently dry nose and skin irritation. I wouldn't worry too much about it. But if you can get a doctor's appointment you might get an insurance to pay for your experiment.
Edit: removed link.
Here the unadulterated URL: https://www.amazon.com/dp/B07K9H22M4
It can be preferable to going through the "proper channels", since it can take many months to get the machine through the US medical system, and you need to get some goddamn SLEEP.
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.
Sounds like messing with the settings helped you. Of that you'd discourage other people from trying it.
(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).
If it were safe and easy I'd probably just buy the APAP and see if it made me feel better. I don't feel much urgency; I get about 6 hours a night on the regular and don't as a rule feel tired or cloudy during the day (but it's possible that with an APAP I would, relative to my current condition, feel like an atomic superman, which is what drives my fascination.)
Bit odd of an experience, but nothing that should concern you much.
In my case, the result of the sleep study where I didn't really sleep was, "hmm ... it looks like you might have insomnia." (No kidding). No drugs were offered -- or forced -- during the study.
I've taken a sleep study before; they're not that weird, just a pile of sensors and a bed. And I also know from multiple people that if you do have any form of apnea, addressing it can have a life-changing impact.
Given your sleep routine I promise the study would be pure hell. They are for me. But I need that APAP.
On the other hand, my wife tells me I snore and randomly stop breathing, so I have reason to believe there's something going on.
This is bad for her and worse for you. You have an apnea for sure. You’re losing brain cells unnecessarily. Luckily I know your posting history and you can obviously afford them. I can’t! But for your wife’s sake get a home sleep study.
I'm just saying: if I could just buy the damned APAP and try it out, I would do that first. Friends who've gotten sleep studies have uniformly described it as simply a hurdle to getting the actual RX for the machine, and that all the learning and diagnostics happened after they started with the machine.
Wait, what? How does that even work? That sounds fascinating.
Also, are you Minbari?
If you think you can breathe through your nose with your mouth closed, the nasal pillows are nicer. If not, get a mask. They're nice to have anyways, if colds clog your nose.
Fortunately, the masks/pillows aren't super expensive, so folks can experiment.
You should do it so your wife can sleep at night instead of hearing your snoring, even if you don't care about being healthy yourself. Sheesh...
There are many, many stubborn guys who refuse to try CPAP machines for years and years, and regret their lost years enormously afterwords. When you get to your sleep doctor, he can tell you what an archetype you are.
I think of sleep apnea as a bit like chronic high blood pressure: few or no perceptible symptoms until you become a dialysis or stroke patient.
Snoring is "fine". There is some resistance, but it's likely you can still breathe sufficiently. The problem is when snoring stops.
By the way, my first sleep study was crap and I couldn't sleep and no conclusions were drawn.
The second was at home and I had a cpap machine waiting for me one day after I returned the results.
> If I felt I had an urgent problem I'd just deal with the study
By the time it's urgent you are already deep into other issues, such as high blood pressure. And now you have more than one issue to deal with. This is like the biological version of tech debt.
Better to start the process early and as a side bonus not sacrifice so many brain cells to hypoxia.
They give you a little case of sensors to take home & show you how you should attach them before bed. Chiefly it's a finger pulse oximeter & something worn on the chest to measure sleep orientation, chest motion, and record snoring sounds. You sleep as normal, at home, and return the devices the next day for its readings to be interpreted.
So: your concern about being in an unfamiliar setting, or being offered drugs to sleep, may be outdated. OTOH, if you're not in general risk groups nor experiencing daytime tiredness, there may not be not much reason to dig further (unless your wife has noticed something else worrisome).
I've had two overnight lab sleep studies. During the first I registered less than 5 minutes of sleep. Nobody suggested giving me any drugs.
I was super skeptical of being able to sleep a) in a strange bed, b) with all those sensors on my head/chest, c) 4 hours earlier than usual, and d) on my back/side. (I was a hardcore stomach sleeper before.)
At the second study, they strapped me into the sensor harness, put on the mask, and turned out the lights. It took what felt like about 5 minutes to get used to the sensation, but then I was out. Like someone flipped a switch to "Sleep now." Eight hours went by like a flash.
I woke up the next morning super refreshed and feeling amazing. When they said it would be three days until I could get my machine, I was kind of sad.
Eight years later, I've still got the same machine, and it's still like hitting an off switch when I put it on. I only average about 4.5 hours' sleep during the week, but it's turbocharged. My AHI seldom crosses 2.0 and I can see exactly what I'm doing via SleepyHead.
Best decision I've made health-wise, except maybe kicking sugared soda.
Edit: it also let me drop my hypertension prescription to the minimum dose.
The full Monty study is pretty bad, with ECG wires all over your body and EEG electrodes all over your scalp. Nobody gets much sleep, but again, they only need a little data, and most people manage to fall asleep eventually,
It seems that the APAPs should be able to be bought without a prescription, and besides inertia I'm not sure why it is.
As others have already explained, you can now do an in-home study. Not nearly as good as when you're all wired up in the sleep center. But still good enough to get a general indication of how you are doing.
Okay, you still resist that, so ...
How about going to bed, for one night, with a small, inexpensive, device on your finger? Viz. a pulse oximeter. Surely you can handle that for one night???!!!
When you stop breathing, which you admit you do (at least according to your wife), the amount of oxygen in your blood drops. Perhaps to unsafe levels. This is very bad for you long term. Very bad.
So, just try the pulse oximeter. For a few nights. It's cheap and non-intrusive.
In anticipation of scaring yourself into getting a CPAP machine, buy an oximeter that's compatible with SleepyHead. Here's a disussion about that: http://www.apneaboard.com/forums/Thread-What-oximeter-works-...
(I'm not really that resistant to doing an in-home sleep study, for what it's worth.)
That I don't know. My guess is, probably not.
I do know that, when I had my in-clinic sleep study, the technician showed me how my blood oxygen levels were rising and falling. Rhythmically, corresponding to every breath I took.
If you see the oxygen desaturation for yourself, maybe that's what will convince you to at least do an in-home study.
I will never do another in-clinic study again. I fucking hated it, tons of straps and wires all over. I had a lot of trouble getting to sleep and staying asleep. So, as Bill Clinton might say: "I feel your pain". And they did give me a sleeping pill in the middle of the night to calm me down (another issue of yours). But that was over 10 years ago, I don't think that in-home studies were popular at that time.
For the sleep study, you need a chest band, a nasal cannula, and a pulse ox.
They need to know how much/how deeply you are breathing, and correlate that with your oximetry. The main thing they are looking for is central apnea, where your body stops trying to breathe. PAP doesn’t fix central apnea, because it’s not obstructive, and in fact it can CAUSE it, especially in people who have had obstructive apnea or pulmonary disease for a long time.
You almost certainly need to see a sleep doctor to get a prescription.
Dude. If you even have the suspicion of having sleep apnea, please get yourself tested. I do not care what your reasons are. There is no way your reasons are more important than the increased risk of stroke and heart attack, among other chronic conditions. If you do have sleep apnea, your brain (and in fact, the whole body) is getting chronically deprived of oxygen, with all the ill effects this causes.
Do the sleep study. Nowadays you can do it at home with a small device, in the comfort of your own bed. No medication is involved.
If you do not find indications of sleep apnea, congratulations. But this is not something you can usually figure out on your own, unless it is very severe. The cognitive decline is gradual, any chronic effects take a long time to get noticed.
When you start using a *PAP machine, only then you figure out, as the brain fog is suddenly lifted and you realize how much you have been handicapped.
See, again, I am sold on the "you will be an atomic superman" argument! Give me the damn machine! :)
Why? What about the process of adjusting the treatment and monitoring the results wouldn't have been possible to do at home?
I don't mean to discount the advice of experts. Certainly, an expert willing to dedicate sufficient time and attention to getting the treatment right for a particular patient is more likely to get optimal results than a patient modifying their own treatment. The problem the article focuses on, however is patients being unable to get sufficient time with experts.
My particular doctor shoots for an AHI around 10, which is still mild sleep apnea (5 is the threshold) and is still high enough to get you diagnosed and provided a CPAP in the first place.
So for 6 months my AHI hovered around 8 or 9, occasionally spiking to 12 (which made me really feel like crap).
My technician won't adjust without doctor's orders (and incidentally also told me I'd fry the entire machine in days if I used non-distilled water in the humidifier, which is just absurd.) The doctor books appointments months out, and is OK with my current results anyway.
So I tried bumping my pressure up by 1 and lowering the exhale comfort feature on my own. Tada! After a month my AHI averages 4, sometimes spiking to 6, and I feel much, much better.
My AHI during my sleep study was approx. 55-60 (It's been several years, forget the exact number).
With my machine my number is usually 1, most nights under 0.5.
(FWIW: Like you I found increasing the pressure a little and turning off all the 'comfort' features was the winning formula).
My humidifier has a heated metal plate in the bottom of the tank. Its temperature is set on a humidifier scale of 1-8, plate temperature increases from 1-8.
Evaporation of nondistilled water will leave mineral deposits behind. Deposits decrease thermal conductance between heated plate and water. This will reduce evaporation rate, reducing effective humidity for a given setting.
If the control loop is smarter than usual and includes humidity sensing, there's a potential for thermal runaway. Doubt this is an issue, it's probably a simple temperature loop. I don't think you'd "fry the entire machine in days".
There may be more bacterial growth potential with nondistilled water. Don't know.
Using distilled water is a little less convenient, but could avoid some issues.
1.) Fill the tank with regular cheap vinegar to get rid of the mineral deposits. Maybe there is a problem with some tanks, but mine were all plastic or stainless steel and vinegar didn't seem to have any affect on them.
2.) Usually the tanks hold enough water for two nights, maybe a little more, at the settings I used them at. Dumping out the water in the morning kept the mineral content from becoming concentrated due to evaporation, and kept the buildup down to more manageable levels. If I didn't dump the tank every morining then I have rapid mineral buildup. I know it sounds silly, but it took me an embarasing amout of time to figure this out.
Once I worked out those two things I had no trouble with using regular tap water in the humidifier.
This is true, but it will take weeks or months, depending on your water quality, and is easily cleaned if you know how.
I normally use distilled water, but if I'm traveling and don't have it handy, I'm not losing sleep over using tap water 1-2 nights.
That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control.
That lone idiot that pushes his treatment to eleven to see if it has any effect on his erection ruins it for the rest of us. And I guarantee you that for any user accessible feature on a medical device, there will be such an idiot, and that he or his family will sue. And that's the case against which medical manufacturers optimize against, in this instance, by abusing unrelated copyright regulations and denying life saving options to other patients.
>That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control.
I completely agree. I think there should just be laws governing this though. It needs to be an adult making the decision that is sufficiently smart to understand the risks. And then you sign something that absolves others if you take that personal risk and can't sue if it harms you.
I'm not sure now that you mention it, maybe it should have been increasing the pressure.
Anyways ... I have an AirSense 10 and I have to say ... I have no idea what the S9 was like, but the current model still fucks up my levels when I wake up in the middle of the night. Not sure how my breathing is different when I'm awake, but it inevitably causes the damn machine to detect an obstruction and it will push the pressure all the way to the maximum.
A pretty common complaint, but they have not released a fix AFAIK.
Which reminds me... it's time to lower it, again.
> Most modern CPAP machines create reams of data while they’re being used. They track things like average air pressure, AHI, average use per night, mask leak rates, “flow limitation index,” and other statistics about what the machine is doing and the patient’s sleep quality. Generally, the data is stored on an SD card, which a patient takes to their doctor once every six months (some new devices also transmit data wirelessly to an app; the data available on apps, patients told me, is rarely as thorough as what the machine is actually collecting.)
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. :)
(The responses are out there, but they are harder to find)
There are many "masks" available - from covering the face to a nose mask to a tube under the nose (like an oxygen, but with a much fatter tube, including running up the sides of the face to the 1-1.5 inch diameter tube that runs to the machine). I'm using that latter, and I've been struggling.
If I'm sitting the mask is comfortable and I can tune it out unless I speak or breath through my mouth (it tries to prevent that with airflow, which is uncomfortable but not painful).
BUT if I'm trying to sleep there is nothing to distract me and I'm very aware of the tubes. It's hard to relax and breathe effortlessly - I feel like I'm breathing very deliberately, which in turn keeps me awake. I sleep on my side, which doesn't work at all - I either squish the side "tubes" (they are flat silicone-ish) which cuts off air, or I hang off the side of the pillow enough to not put that much weight on it, but then the sound of air rushing through the tube alongside my ear is very audible.
I'm training myself to sleep on my back with pillows built into an armchair-like support, but it's slow going changing a lifetime habit. On my back, the only issue is the forced focus on breathing. Oh, and staying on my back of course.
I also still wake up at times with the feeling that I can't breathe, but the air is flowing. I don't think it's mental, because it continues ( I can feel the air blowing from other places, but it's not getting into my lungs until I adjust the nose piece, sometimes it takes several times. Other times I wake up to discover I've removed the mask in my sleep.
So basically, for the past 23 nights, I've been unable to fall asleep until I'm exhausted. My wife might as well be in a different bed - no snuggles as an option. I only get 5-6 hours of sleep before waking (usually due to that feeling of not breathing), at which point I'm rested enough to not be able to fall asleep with it on again.
It DOES make a difference - the english language doesn't have the words, but I end up feeling much more energetic, but still tired (because 5-6 hours of sleep that only starts when I'm exhausted). Many of the praises I was promised (unasked!) haven't manifested (at least not yet): no noticeable change in my hunger, focus, anxiety, depression, general health, or bedroom-focused activities...just more feeling of physical energy. After being tired for most of my adult life, the energy is a nice change, but I'm still tired and was really hoping for the effort to improve some of my issues to be reduced to what seems like normal-person levels.
Digging deeper in my research, I've found many of these symptoms are common and it can take several months to adjust everything. Some users report that it never really gets better, others report that it changed their life and they swear by it up and down.
My follow-up with the doctor is still 3 weeks away, and who knows what he'll say, but getting this far in the process has taken literal months (4 months now) mostly waiting for appointments, with some waiting for test results. The insurance was (and is) a complication (despite being told repeatedly by multiple parties involved that my insurance is very good) and honestly, if you can afford it, I'd recommend looking into the ~$2K for the machine+accessories out of pocket so you can skip some steps and focus on actually getting the machine. I'm sure the months of waiting to even get to use it did not help the let down I've felt in the results to date.
I need to have them properly set up so that I am not disturbed by it during the night. Sometimes they can slip off the mattress and dangle from the side of the bed and pull on the mask - a definite recipe for waking up. Being worried about sleeping on the tube and squishing it is also a worry that can break my sleep, as those things are so damn expensive.
Side note from my own experience - Quality of sleep is dramatically improved, but it is still exhausting to have a few consecutive nights of less than 7 hours of sleep.
7+ hours (for me) with CPAP is perfect for a nice, energetic day.
Not sure how your AHI is but I need to be under 3 (and no leaks) to feel "great". Some people can self titrate to 0, but I'm not one of those lucky ones. Best I've ever hit was 2.0, but it was like night and day from my usual 4-5.
Good luck!
I use a full face mask (Resmed thing). It has one hose connected to the center of the mask. I'm able to sleep on either side (side sleeper by preference). My pillow doesn't interact with the centrally-located hose.
Cuddling is not really possible once the machine is on. It makes some noise which I've mostly adjusted to, but sometimes it gets significantly louder for a while, waking me up or keeping me awake unless I put earplugs in. Occasionally it blows air on me (not sure if the mask is leaking or what), and I have to rearrange blankets to block it before I can get back to sleep.
She'll wake me up and make me wear it if I don't.
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.
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.
That's the invisible hand of the free market taking care of you!
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.
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.
Would you tell the people that needed epipens "well just have some paracetamol instead".
There are other examples, such as complex surgeries that would illustrate the point you're trying to make better.
In medicine, you tend to need very specific treatments. This means the set of potential suppliers is much lower, which essentially means the supply is restricted. If you won't sell me an epi-pen for less than 100 dollars, there aren't a lot of places I can turn to. Moreover it's not like open-heart surgery is going to work.
Besides, some procedures are just actually expensive. Open-heart surgery takes a lot of labor, organ transplants require intense logistics. Dialysis is a complex and repetitive procedure. The 'fair price' for these in the economic sense is still high. Way to high for most people's morality.
Should people really have to chose between death and the bankruptcy of their entire family? Because in a functioning free market, it is near essential that some people have demand for something they can't pay for. So if we turn dialysis, heart surgery, etc. into free markets, there are going to be people who need those treatments that cannot pay for them.
Isn't that exactly what happens now?
It's not like I can't afford to pay either, I do have some money stashed in my HSA but when I'm trying to get to a point where I have a full years deductible in it to cover a true emergency it's a bit of a gut punch to suddenly take $X00-$1X00 out to wear a device and then have a technician analyze the data from it.
All of this is why my first step right now is to keep losing weight, because I know weighing 230lbs as a 5'10" male isn't helping me at all either.
If you are a bit adventurous, go on Craigslist and buy a used one with a new mask for like $100. You probably are a Large mask size.
Figure out how to adjust it and try it for a few days. Keep a written record of how you feel. See if it helps. Starting at 6 of whatever the unit is will probably be a good starting point.
The only annoying bit is replacing the masks and headgear - they’re considered prescription medical devices, so you have to exploit a loophole in that they are only covered under the RX requirement when purchased as a set. So, I have to buy a mask on one order, and the headgear on another.
It’s a pain in the ass and I’m more than a little bit peeved that I have to beg for permission for this quality of life improvement.
Amazon won't sell you full mask sets, you have to buy the frame/cushion/headgear/tubing separately and put it together yourself. Usully at a very inflated markup.. recently had to pay $100 for a replacement frame after one of the headgear hooks snapped off of my F10.
Other CPAP companies online won't even talk to you without a prescription on file.
Then your doctor will prescribe auto-cpap therapy. Hopefully health insurance defers some of the cost, but in any case it shouldn't be ruinous for someone with an HSA. You can get a Phillips Dreamstation off Amazon for $620.
Please go get tested.
Edit- Sorry didn't see this exact comment below, so I concur
Weight gain is a symptom of untreated sleep apnea, so you should consider whether you're doing this in the right order.
https://www.secondwindcpap.com/
Or you can sell it if it doesn't help you.
If it's an auto-adjusting machine, then you don't need the sleep technician either. You can just start at a lower pressure and look at your data and then see if you need more.
The market can solve many of these. I've looked at CPAP machines. I've spent more on a guitar. You don't need your insurer or the government to clear your purchase of such a machine.
It's like ordering pet meds in the US. I know what flea med to purchase. I don't need a vet prescription. Sites I've visited in the US say I do, so I buy from Canada. Cat's are not dead.
I met a sleep study technician who, though convinced he actually has sleep apnea himself, said he could not afford a CPAP. Because he scrapes a living together by working as a temporary contractor for two different local sleep clinics, he does not have health insurance.
If anyone else is in the same boat, please check with your provider first. It may not be that expensive and in some cases there are even discounts – not because they care about you, but because treating the conditions that sleep apnea causes is so much more expensive.
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
"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. "
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?
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.
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.
Good enough for me.
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.
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.
Saying it without the snide remarks is a much more powerful message, to me.
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 :)
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.
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).
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.
Wouldn’t wish it on my worst enemy.
Every day, getting to work on time was a huge mission, slogging through the day trying to get stuff done jacked up of caffeine.
Then the nights, despite being exhausted I was unable to fall asleep, my experience was that I was lying awake in bed for hours but actually I was falling asleep many times per minute and choking myself back awake. The only easy way to get to sleep was to have a few drinks which naturally made my apnea worse, not to mention the negative effects of alcohol.
Once I realised I was doing it, I learned to sense when I had choked back awake. I did everything I could to get a CPAP Machine ASAP (it was expensive and not covered by health insurance in Australia).
2 weeks of using it every night I felt like a new person. My compliance using the device is nearly 100% over the last year (as reported by the device) and it's been so great.
I fall asleep in about 5 minutes these days.
The reason why I didn't realise I had this condition was because I had been single for about 6 years and slept on my own. It wasn't until I started dating that my (now fiancee) said 'you snore and choke all night'.
So, as a PSA, anyone overweight and long time single that is always tired, get a sleep study!
I had tried a CPAP machine previously and still felt that it wasn't working (although the data said otherwise, I just felt like I wasn't breathing properly).
If, while laying on your back, moving your jaw forward improves breathing significantly, this type of treatment might be a good alternative to a CPAP (costs are similar though).
There are also folks making implants, LED lights and rfid tags and such. https://en.m.wikipedia.org/wiki/Grindhouse_Wetware
Pretty smart actually, Congress not trying to enumerate all small details itself.
(section 1201(a)(1) of title 17, USC)
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?
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.
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).
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.
I am a little surprised to find that CPAP use is considered non-serious though. (Being halfway to a BiPAP? Holy moly.)
And with an AHI off the charts, I may very well die without one.
I discovered that my 2 year old UPS failed when the power went out and I got a mere 3 seconds of power to my computer. If it had been being used for what is effectively life support, I'd be dead.
That said I should get a UPS for my machine, I literally cannot sleep without it!
Oh for god's sake.
You are not going to die if the machine switches off, even with a full face mask. It is not hermetically sealed.
If you don't use a full face mask, but instead a nasal mask or pillows, this is what you'll do: you'll open your mouth and start breathing that way. Simple.
Epidemiologically speaking, sleep apnea is deadly, if untreated.
The article says the data they collect include something called "mask leak rates". That means the machine has an airtight mask and could in principle suffocate you if it malfunctions.
Ummm... no. If the CPAP machine fails, you'll just start sucking air in the holes that are normally used to expel your exhalations. (When you exhale, the air goes out through these vents, not back into the machine.)
It's significantly less airflow, and will cause you to wake up, but it's not going to suffocate you.
The difference with a malfunctioning machine is that you still cant get air even after that threshold has been hit (or at least it's very difficult to do so). At that point, your brain kicks you totally out of a sleep state and you awake completely.
If lack of air not making you wake up was the problem, patients would die long before seeing a doctor.
One of the most popular masks is the ResMed Airfit P10.[1] This is a "nasal pillows mask". It is airtight, but only on your nose.
If the mask malfunctions or your nose clogs up, then instead of suffocating, you can open your mouth to breathe.
A full-face mask can presumably malfunction, even though it has a "failsafe" feature to let you breathe.
[1] https://www.resmed.com/us/en/consumer/products/masks/airfit-...
It's also something I can't change through diet. I'm a very in shape individual. My anatomy just isn't right.
https://aasm.org/brain-damage-caused-by-severe-sleep-apnea-i...
Sleep apnea is not a joke. My dad has a pacemaker because of the stress placed on his heart from years of untreated apnea.
Ive always wondered and never found data: do you have an idea of how many people with these symptoms get prescribed mental disorder medicines from not knowing the real root cause? I can picture this stuff being misdiagnosed pretty hard by some practitioners.
I don't fit the standard profile for someone with sleep apnea, so they pushed anxiety meds pretty hard on me. Had to insist on a sleep apnea test.
I personally have a lot of the symptoms. I have extremely low attention span, awful memory, I wake up 5 times a night, weird dreams, can't focus at work, can't keep track of anything for more than a few minutes...
Talking to my doctor and going through my health history, he immediately ruled out sleep apnea and started suspecting ADHD and such. While it definitely could be that, for the first half of my life I was the opposite... extremely focused, top of my class, photographic long term memory, you name it. I need to convince someone to let me do a sleep study
Not to mention the loss of productivity due to not getting healthy sleep.
Whatever works I guess.
They don't work for everyone.
For people (like me) that they work for, the benefit is large, and immediately obvious.
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.
Nerve damage occurs in the vast majority of cases. The older you are, the worse the recovery from that seems to be.
CPAP machines may not work for everybody, but there is a significant set of people for whom they clearly do.
There are few treatments with better cost/effect ratios.
CPAP is life saving treatment for some. Sleep apnea surgeries have poor success rates https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480570/
He also suggested palate coblation, which seemed more reasonable. I chose to forgo both of those procedures and eventually ended up with a mandibular advancement device from a TMJ specialist, which has made a huge difference.
CPAP is by far the best solution for most obstructive sleep apnea patients.
Some dentists (like mine) offer a removable orthotic [0] that you wear during sleep which accomplishes the required jaw movement and improves sleep quality. It's an alternative to treatment with CPAP that doesn't require anything invasive like surgery.
I haven't undergone this particular treatment myself, but I know from wearing other styles of precisely designed orthotics (both removable and semi-permanent) that they can improve the quality of your breathing, and thus improve the quality of your sleep.
My narrow palate is due to sucking my thumb until I was 9 due to some mental trauma from home fires and moving a lot when I was a kid, changing schools etc. I had braces/headgear until I was 17 and was left with a jaw set too far back. 20 years of growth hormone from working out caused my jaw to grow back into my throat and narrow my airway.
After being dismissed this year by 2 orthodontists who also said I needed orthognathic (jaw) surgery, I began researching on my own and stumbled onto orthotropics and the A.L.F. appliance:
https://www.google.com/search?q=orthotropics&tbm=vid
https://www.google.com/search?q=alf+appliance&tbm=vid
Luckily I found a dentist locally who specializes in this. As an adult, it takes several times longer to move teeth and expand your upper jaw, but it is possible. I'm about 3 months into a 9-18 month treatment and have felt immediate relief. With breathe right strips, I'm back to feeling awake and happy again (I don't know if the strips are as safe as CPAP, especially over the long term though).
I'm also starting myofunctional and osteopathic therapy. It turns out that many problems in the body with posture and breathing start with the teeth/jaw/tongue. Computer geeks are at terribly high risk of these problems due to our sedentary lifestyle. I think Gen X finally reached middle age and is hitting long-predicted health issues like these.
Hope this helps someone.
And this is why she is an oral surgeon and not a sleep specialist.