CPAPtalk.com

Pretty much SG's list to reduce the temptation to give up and to get around the intensely frustrating and depressing times that ended with decent information (gained here and other forums), better masks (recommendation, support and training from this forum), and of course, better sleep.

Over the past eight months I have been intentionally off CPAP for 12 nights. One night after a weird, and as yet unexplained, chest pain thing and the rest for being in places that had no electricity. The others because I was unwilling, at my own choice and peril, to give up backpack trips with my kids this summer, or a rebuild trip to Biloxi last Feb. More knowledge (gained later) and a more portable (daytime charging was available) machine would have eliminated the nights off in MS. A truely portable unit would be with me in the wilderness... unless, as my kids have joked for years, mysnoring actually keeps bears and other critters away.

Chris

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JUST DO IT , I AM 99.9% COMPLIANT AND I AM SO BAD AT FOLLOWING THROUGH WITH ANYTHING. THE RIGHT MASK WAS THE KEY FOR ME , AND BEING ABLE TO STAY AWAKE AFTER NOON!!!
KEEP TRYING IT'S WORTH IT

Another thing would be for health care providers/supporters to ask precise, specific and leading questions when doing follow-up.

David followed this up with an excellent list of questions health care providers could ask people on XPAP at each appt. And I'll second his suggestion of a referral to cpaptalk.com-along with suggesting parameters for people to adjust their own XPAP's. They should be promoting self management based on how a person feels-not just giving people a set RX. The perception that the health care provider knows me and remembers what my medications & treatments are-and asks about them with specific question-goes a long way.

I think its important for docs, dme's, sleep techs to know that everyone is different. I know there are those who can learn they need xpap and settle right down and use it faithfully, even for naps. I have a friend like that, I marvel at him, and he marvels at me who was so claustrophobic I couldn't even lay down in my own bed because I started getting panic attacks after a week of struggle with the mask.

And I am totally in agreement with those who say that comfort and the right mask is top priority in making this sleepstyle work. So allow people choices, and let them go with their gut in trying different interfaces. My best mask happens to be one that most people have given pretty bad reviews. Go figure

I also agree with those who brought up that this forum and others like it are key to learning about xpap, machines, interfaces, tips and tweaks etc.
No doc or tech or dme has the time to answer all the questions, but by searching the forums and asking questions we here can find the answers to all the little and big things that come up as we adjust. The forums were the reason I could continue the struggle, and ask questions, and try masks, and be encouraged that others had felt the panic and still found a way to make it work for them.

Cathy

Since the docs in our town don't return phone calls and I had to wait a month for the sleep doc, I talked to our Vet about my study results. He said that if I was desaturating below 85% O2 (I was at 68%), I was headed for an enlarged heart and possibly other nasty things. That's all the incentive I needed to work hard at making the therapy work.

I can tell you that neither the sleep doc nor the DME person gave me any information on the consequences of no therapy. All these folks seem to want to do is collect my money and move on to the next victim.

Guess I have been lucky... CPAP wise.... I have been complaint since start.

Althoguh, the first few nights were kind of like hell.