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Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

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Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#161

Post by TylerE »

nulagrithom wrote: post #126
rjurney wrote: post #80

Messing with your own PAP settings can be a bad idea. I have complex apnea - a little bit of obstructive apnea (small pie hole), a little bit of central apnea (brain messages to breathe don't get through). I had an Auto BiPAP machine, which is like an intelligent ventilator that varies settings to determine the best one. A sleep study plus home monitoring indicated that the machine made my apnea worse! After another…

Counter-anecdote: 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…

Wow, that's insane.

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).

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#162

Post by all_blue_chucks »

the_clarence wrote: post #106
surds wrote: post #68

I did read an article early this year where an individual died on a camping trip as he was not carrying his CPAP. So, yes, it does vary for each individual but sleep apnea can be deadly. Also, I cannot recommend enough anyone showing any symptoms of sleep apnea to get it checked out. I started using CPAP just over 2 years ago now and it has been a life changing experience, even though the study suggested only a 'Mild…

What were your symptoms and what kind of difference do you feel now?

The primary symptoms are snoring and fatigue.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#163

Post by gojomo »

tptacek wrote: post #137
mabbo wrote: post #132

Earlier quoted context omitted.

I did my sleep study when I was 24. There were no drugs involved. It's just a bunch of sensors taped to you while you sleep with a camera watching you. Bit odd of an experience, but nothing that should concern you much.

My understanding is that if you're not going to fall asleep in the setting of the sleep study, they'll Ambien you out.

Nowadays I believe an at-home "study" is more common, cheap, easy, and non-disruptive.

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).

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#164

Post by ridgeguy »

nulagrithom wrote: post #126
rjurney wrote: post #80

Messing with your own PAP settings can be a bad idea. I have complex apnea - a little bit of obstructive apnea (small pie hole), a little bit of central apnea (brain messages to breathe don't get through). I had an Auto BiPAP machine, which is like an intelligent ventilator that varies settings to determine the best one. A sleep study plus home monitoring indicated that the machine made my apnea worse! After another…

Counter-anecdote: 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…

CPAP with humidifier user here. About nondistilled water:

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.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#165

Post by ridgeguy »

tptacek wrote: post #137
mabbo wrote: post #132

Earlier quoted context omitted.

I did my sleep study when I was 24. There were no drugs involved. It's just a bunch of sensors taped to you while you sleep with a camera watching you. Bit odd of an experience, but nothing that should concern you much.

My understanding is that if you're not going to fall asleep in the setting of the sleep study, they'll Ambien you out.

This might be a function of the particular lab. Yours is the first suggestion I've heard of that possibility.

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.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#166

Post by tomcam »

tptacek wrote: post #151
tomcam wrote: post #149

Earlier quoted context omitted.

Have gone through 3 sleep studies. No drugs were offered and I never got to sleep. You would be fully within your rights to decline any such offer and they wouldn’t give a shit anyway. Given your sleep routine I promise the study would be pure hell. They are for me. But I need that APAP.

See! You get it! If I felt I had an urgent problem I'd just deal with the study, but "feeling tired during the day" is very, very low on my list of complaints. I sort of feel like I get away with murder, biologically; I go to sleep at 1AM and get up at 7AM and do just fine. 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.

> my wife tells me I snore and randomly stop breathing

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.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#167

Post by tptacek »

tomcam wrote: post #166
tptacek wrote: post #151

Earlier quoted context omitted.

See! You get it! If I felt I had an urgent problem I'd just deal with the study, but "feeling tired during the day" is very, very low on my list of complaints. I sort of feel like I get away with murder, biologically; I go to sleep at 1AM and get up at 7AM and do just fine. 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.

> my wife tells me I snore and randomly stop breathing 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 probably will sometime in 2019 (for totally unrelated reasons having to do with insomniaphobia, I have a pretty odd sleeping arrangement that involves me sleeping mostly upright these days which I'm told has mitigated this problem).

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.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#168

Post by PhantomGremlin »

tptacek wrote: post #108
rjurney wrote: post #80

Messing with your own PAP settings can be a bad idea. I have complex apnea - a little bit of obstructive apnea (small pie hole), a little bit of central apnea (brain messages to breathe don't get through). I had an Auto BiPAP machine, which is like an intelligent ventilator that varies settings to determine the best one. A sleep study plus home monitoring indicated that the machine made my apnea worse! After another…

Central apnea is the scary story people tell on the forums about why not to just get an APAP and skip the sleep study. (I'm sort of suspicious that I have some kind of apnea since my wife says she thinks I do, but there is just no way I'm doing a sleep study, so this is a topic of some minor fascination for me).

there is just no way I'm doing a sleep study

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-...

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#169

Post by ridgeguy »

tptacek wrote: post #151
tomcam wrote: post #149

Earlier quoted context omitted.

Have gone through 3 sleep studies. No drugs were offered and I never got to sleep. You would be fully within your rights to decline any such offer and they wouldn’t give a shit anyway. Given your sleep routine I promise the study would be pure hell. They are for me. But I need that APAP.

See! You get it! If I felt I had an urgent problem I'd just deal with the study, but "feeling tired during the day" is very, very low on my list of complaints. I sort of feel like I get away with murder, biologically; I go to sleep at 1AM and get up at 7AM and do just fine. 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.

I'm the greater insomniac in my household, so I was the one to note my wife's snoring and breathing cessations. She felt fine in the morning. A sleep study showed her PO2 levels dipping as low as 76. She's a CPAP user now.

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.

Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker

#170

Post by tptacek »

PhantomGremlin wrote: post #168
tptacek wrote: post #108

Earlier quoted context omitted.

Central apnea is the scary story people tell on the forums about why not to just get an APAP and skip the sleep study. (I'm sort of suspicious that I have some kind of apnea since my wife says she thinks I do, but there is just no way I'm doing a sleep study, so this is a topic of some minor fascination for me).

there is just no way I'm doing a sleep study 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 handl…

Could I take results from a pulse ox to a random urgent care clinic doctor and get an RX for an APAP? I would totally do that. I'm actually totally fine with paying out of pocket.

(I'm not really that resistant to doing an in-home sleep study, for what it's worth.)

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