Here's how my story goes:
I awoke at 4 am last December 20th and was gasping for air with a 130 pulse rate. I had to get up and sit in a chair for several minutes before it calmed down. Even then, when I tried to lie back down to sleep, I couldn't seem to get enough air to feel comfortable. I suspect anxiety was kicking in to make things worse. The following weeks showed that this problem wasn't going to go away even though I tried everything I could think of that might be causing it. I finally broke down and went to a local express care doctor. They referred me to a pulmanologist.
It took over 6 months of suffering while going to 3 different medical professionals and taking many expensive tests to only find that I had early stage emphysema. I already knew that but I insisted that there was some other reason I wasn't able to sleep properly so finally, at my insistence, the pulmanologist suggested a sleep study. I told him I would not be able to sleep in a lab setting and asked if there was any way I could get a home version of the sleep test. He said, "None that I know of that are certified." I accepted that and let him set me up with the local sleep lab.
Sure enough, I didn't sleep any at all during the 7 hours of the sleep test. Even so, when I went for the followup and results to be interpreted by the pulmanologist (he's sleep certified) , he said I didn't fit the Medicare criteria for apnea coverage. According to his interpretation, I had slept for over 4 hours and my AHI level was only 1.9, well below the >5 threshold that Medicare has established as the minimum for coverage.
When I heard that, I immediately told him that I didn't agree with the test results since I knew I hadn't slept at all and didn't see how anyone could get any useful data from the session. I also told him I didn't give a hoot about the Medicare criteria but that I was pretty sure I had sleep apnea. My evidence of this was several sleep sound recordings that I had made using a sensitive digital audio recorder suspended above my bed and close to my head. Those recordings demonstrated that I was struggling for breath on short intervals and sometimes went as long as 70 seconds without breathing, which ended up with a loud gasp and a repetition of the cycle within the next 5 minutes or so. He said that wasn't useful since it isn't a recognized method or facility but he would be willing to write me a prescription for a CPAP machine although it would state that it was to be paid for by me and not billed to Medicare.
I agreed out of desperation and found a local source for gently used CPAP equipment and bought a ResMed S9 Elite with humidifier, hose and a new gasket for the Quattro Mirage FFM frame (all for $500). The mask frame I was able to get for free from my brother. That was a little high but I was desperate and it was time to do something without regard to money.
After 3 days of self titration I could see it was going to take quite a while to arrive at a point where this machine would help me. That's when I stumbled across this wonderful site and read the many posts from others who had succeeded with their own self directed therapy. One thing stuck out more than all else, the value of an Automatically regulating machine. I suspected that from the outset since I had already made a deal when I bought the S9 Elite that would allow me to trade it back in for full value against a S9 AutoSet.
I made that exchange (paid $150 boot, too high again) and my therapy has been smooth sailing ever since. My first day on the S9 AutoSet gave me an AHI of 1.5. WOW! My current readings are: DATE 9/14/2014 PRESSURE 9.4 ~ 10.7 AHI .4 OBSTRUCTIVE .0 EPR 3 SLEEP DURATION 7:14
That's a far cry from the 8.5 AHI I initially got with the S9 Elite! I can only wonder what my AHI index was without a CPAP machine. It certainly wasn't 1.9 as I would be led to believe via the flawed sleep study!
The only change I have made to the S9 AutoSet was to change the default 4 ~ 20 wc pressure setting to 8 ~ 16 wc. That was more for comfort than to reduce the AHI index.
This stuff was well worth paying for and beats trying to convince the medical community that their sleep lab test isn't all that adequate for some folks. I may yet request another sleep test and even contact Medicare to see it they have any home test companies that they accept. I'll probably not be using the same pulmanologist this time around since he didn't seem to be too interested in advocating for me or checking to see if there is actually a home sleep test that is Medicare approved.
In the meantime, I'm a happy camper and feeling better than I have in years. I wish I had known about sleep apnea years ago since I think I have had it for a long time without knowing it. My older brother was diagnosed with sleep apnea and has been using a CPAP machine for 12 years. It was partially at his insistence that I started this quest. He has been a great help to me in my journey of acceptance of this rig and I'm thankful for all he does to help guide me. I'm also thankful for the free mask frame he gave me. I could have nearly have gotten a new machine for the price I paid for this one but I needed it STAT! It only has 100 hours on it so should last for a while.
To this site and all the past threads that were a great resource for me to draw from and get help without even having to ask.
ps. It's my opinion that these CPAP machines are only glorified fans and since they pump more air than you can ever breathe and have a safety valve that lets you breathe normally if/when the fan fails, I don't see how you can hurt yourself too much by doing your own adjusting, if you so desire. Using the resources on this site and a little common sense will put you down the road much faster than waiting on the typical DME clinician for guidance.