Accessing the clinician menu on most machines is accomplished by a quick Google search. I've adjusted my pressure several times to bring down AHI, or to reduce some side-effects of higher pressures as my weight comes down. Most machines report AHI in the main menu. My point is this... the article's premise is on target, but the situation isn't as dire as characterized.
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…
Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
91–100 of 261 posts
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#92Accessing the clinician menu on most machines is accomplished by a quick Google search. I've adjusted my pressure several times to bring down AHI, or to reduce some side-effects of higher pressures as my weight comes down. Most machines report AHI in the main menu. My point is this... the article's premise is on target, but the situation isn't as dire as characterized.
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…
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#93Earlier quoted context omitted.
> I can't afford to do another sleep study (American Healthcare rocks!). That's the invisible hand of the free market taking care of you!
Almost nothing about the American healthcare system has anything to do with a free markets. From medical schools, to opening a new hospital, to pricing, to forced insurance, healthcare tied to employment, companies or government pay for almost all of it, FDA drug approval process, etc. Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all.
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.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#94One way around this is to get a bed that has something like a zero gravity mode. Sleep a bit upright and your airway won't collapse in on itself. 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.
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).
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#95I have to adjust my own pressure as well, since I can't afford to do another sleep study (American Healthcare rocks!). 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.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#96Earlier quoted context omitted.
Just to be clear, sleep apnea causes organ damage. I had oxygen levels dipping to 71% in my sleep study. It was enough to dramatically affect my cognitive abilities and took months of CPAP therapy to recover from. I'm 43, relatively fit, and don't have a history of snoring. If you have excessive daytime sleepiness, confusion, and difficulty thinking, get checked ASAP. Fortunately you can reverse the damage: https://a…
> If you have excessive daytime sleepiness, confusion, and difficulty thinking 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.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#97My 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.
If you ask a surgeon if your problem should be solved by a surgery in their specialty, you are more likely to get a "yes" than you should. There is definitely a confirmation bias there, tending to see patients for which surgery is necessary instead of a fair sample of those afflicted.
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.
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#98Messing 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…
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#99I 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…
Does it bother you at all while sleeping?
Re: Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
#100I 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…
Does it bother you at all while sleeping?
(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.