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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

#201

Post by Tomte »

tptacek wrote: post #167
tomcam wrote: post #166

Earlier quoted context omitted.

> 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…

> involves me sleeping mostly upright these days

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

Also, are you Minbari?

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

#202

Post by goshx »

bhc wrote: post #193
goshx wrote: post #141

I was using a CPAP machine that I couldn't see the data nor extract it to use with SleppyHead. It was awful because the appointments with the doctor were 6 months apart and they were basically about a lot of leak detected by the machine and let's try to adjust it and see in 6 months if it was fixed. Awful. Almost 3 years later I requested another sleep study because I was done with no progress. The study found out th…

How do people obtain regulated medical devices like CPAP without a prescription? I assume a sleep study is required to get a prescription from a doctor.

My friend bought his on Amazon.

Edit: removed link.

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

#203

Post by auntienomen »

tptacek wrote: post #167
tomcam wrote: post #166

Earlier quoted context omitted.

> 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…

You can just buy the damned APAP. The gear I use can be had off Amazon for about $700. A Respironics Dreamstation, and a Resmed Swift FX nasal pillow with headgear and quick connect hose. Probably cheaper if insurance covers it, but you don't actually need it.

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.

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

#204

Post by webnrrd2k »

ridgeguy wrote: post #164
nulagrithom wrote: post #126

Earlier quoted context omitted.

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 fo…

It's really not a big deal to use tap water, I did for years until I lost enough weight that my sleep apnea went away.

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.

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

#205

Post by car »

goshx wrote: post #202
bhc wrote: post #193

Earlier quoted context omitted.

How do people obtain regulated medical devices like CPAP without a prescription? I assume a sleep study is required to get a prescription from a doctor.

My friend bought his on Amazon. Edit: removed link.

Your link contains an Amazon affiliate id.

Here the unadulterated URL: https://www.amazon.com/dp/B07K9H22M4

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

#206

Post by Chris_Chambers »

jchw wrote: post #194
bhc wrote: post #193

Earlier quoted context omitted.

How do people obtain regulated medical devices like CPAP without a prescription? I assume a sleep study is required to get a prescription from a doctor.

I think there's a loophole in that you can buy CPAP machines without a prescription from second-hand sellers. Last I checked it looked pretty inexpensive, too. So, really, you don't need a prescription to try one if you really wanted to. 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…

Really? I couldn’t even buy the mask or tube online without a prescription.

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

#207

Post by jachee »

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.

Echoing others' encouragement. My study was an easy at-home test which confirmed how bad my hypopnia was, mostly from the blood/oxygen ratio. Mine was going down into the 70s. It was so bad that immediately after that, they scheduled an inpatient test with the PAP machine.

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.

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

#208

Post by jgrowl »

rhcom2 wrote: post #91
jgrowl wrote: post #30

Earlier quoted context omitted.

This was my personal experience as well. I use a ResMed machine and I remember when I first got it that the instructions warned that only technicians could make setting adjustments. After a few nights of waking up feeling like I couldn't move air through my nose, I just looked up how to do it. It only consisted of holding down two buttons at the same time. Very straight forward. I haven't tried accessing the internal…

Was that the pressure too high for you to exhale or too low to overcome the apnea?

It was just that I'd wake up and feel like I was struggling to move air in. The machine was working as intended as far as I know. It was still registering that air was getting through so it was not adjusting the pressure. I just have allergies and even though I'm on Montelukast, I still have to crank up the pressure just to feel comfortable.

I'm not sure now that you mention it, maybe it should have been increasing the pressure.

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

#209

Post by goshx »

car wrote: post #205
goshx wrote: post #202

Earlier quoted context omitted.

My friend bought his on Amazon. Edit: removed link.

Your link contains an Amazon affiliate id. Here the unadulterated URL: https://www.amazon.com/dp/B07K9H22M4

“unadulterated”. I used the tools from Amazon itself to get the shortlink. I didn’t “adulterate” the URL.

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

#210

Post by jpfed »

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.

One problem with waiting is that as apnea worsens it can cause depression and sap your will. That's what happened to me. I knew I needed to get treatment, but that became totally disconnected from my will to start the process. My wife was the one who ended up calling the doctor to set things up.

Better to start the process early and as a side bonus not sacrifice so many brain cells to hypoxia.

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