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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

#141

Post by goshx »

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 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.

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

#142

Post by elbows »

khendron wrote: post #104
WJW wrote: post #73

Earlier quoted context omitted.

Does it bother you at all while sleeping?

I'm more concerned if it bothers your sleeping partner.

My partner uses a CPAP machine (possibly not a "modern" one... it's 3-4 years old I believe). It's tolerable, but not great.

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.

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

#143

Post by zackmorris »

werdnapk wrote: post #26

My wife (oral surgeon) says the only real solution to sleep apnea is surgery. CPAP machines to her and bunk. I believe she moves the jaw forward to help open up the airway. Whatever works I guess.

I'm going through this now, luckily without the surgery. I was self-diagnosing on webmd and thought I had fibromyalgia! After much research, and a sleep study, I found myself in the situation your wife describes.

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.

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

#144

Post by oostevo »

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.

That does not match my experience (but n=1 and all).

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.

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

#145

Post by JoshTriplett »

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.

You're ultimately in control of the situation. If you explicitly tell them that under no circumstances do you want to take a drug to induce sleep, they're not going to force you to. You could just call it off if you can't sleep.

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.

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

#146

Post by Karunamon »

patrickg_zill wrote: post #71
snuxoll wrote: post #65

Earlier quoted context omitted.

I know I suffer from sleep apnea (poor sleep quality, relatives have noticed me stop breathing for brief periods while asleep, loud snoring) but I literally cannot bring myself to get a sleep study done because I know it's not going to be cheap, and to top it off I don't even know how expensive it's going to be in the first place. It's not like I can't afford to pay either, I do have some money stashed in my HSA but…

(I am not a doctor, etc.) 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.

I did this - after finding out what a sleep study and a new machine would cost, I just picked up a set from Craigslist, and the difference is like night and day. Described the symptoms to a psychologist and was basically told that yeah, it’s sleep apnea, but they can’t write the prescription until the study is done.

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.

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

#147

Post by Karunamon »

ryan-allen wrote: post #128
blang wrote: post #57

Earlier quoted context omitted.

And at the risk of being down voted, weight loss: https://www.health.harvard.edu/blog/weight-loss-breathing-de...

In my case, my OSA is most likely due to being overweight. 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.

Worse, the constant exhaustion makes your mental state absolutely horrible. Not just in the obvious stuff like being more scatterbrained, but in lack of motivation and, I dare say, depression.

Wouldn’t wish it on my worst enemy.

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

#149

Post by tomcam »

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.

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.

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

#150

Post by gwbas1c »

Somewhat related:

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.

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