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.

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 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.

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).

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.

(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).

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! :)

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.)

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

Wait, what? How does that even work? That sounds fascinating.

Also, are you Minbari?

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,

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.

It seems that the APAPs should be able to be bought without a prescription, and besides inertia I'm not sure why it is.

https://news.ycombinator.com/item?id=2030433

Sounds like messing with the settings helped you. Of that you'd discourage other people from trying it.