CPAPtalk.com

Then there are a lot of fools out there!

lars4life wrote:If one is having serious health problems and symptoms
and is diagnosed with sleep apnea, they' would be a fool and would not be making a very intelligent decision
to pass off CPAP.

The problem is that for MANY of us, our OSA was diagnosed BEFORE we developed ANY health problems and ANY symptoms. I know that's hard for some folks to believe around here. But I'm one of those folks:

I regularly rated my sleep as "ok" or "average" pre-CPAP as long as my on again off again insomnia was under control, which it was 80% of the time. Usually woke up feeling "somewhat rested" or "a bit rested" although "refreshed" is not a word that I would have used on a regular basis.

I had no daytime sleepiness until AFTER starting CPAP, which seriously, profoundly, and negatively affected my sleep cycles even more than my moderate OSA did.

I had no health problems at all UNTIL the OSA diagnosis---not a one: Weight is at the low end of "normal" for my height; heart is good; BP excellent at 110/65 consistently---until I started CPAP when it bounced up to the neighborhood of 125/80, which is at the border of normal/high normal; blood sugar normal; cholesteral normal; never needed to go pee at night; went through menopause more or less at a normal age (50--52) with a minimum of symptoms and no medications or supplements needed. Only on-going medical issues at the time of my diagnosis? Migraine headaches and vertigo (which have NOT stopped with CPAP) and minor pain in my joints which had been attributed to very minor arthritis which has vanished with CPAP.

And for a person with this kind of background, the OSA diagnosis and decision to make the necessary commitment to making CPAP work is NOT an automatic no-brainer: The CPAP doesn't "fix" our symptoms and make us feel better because we don't have symptoms. The CPAP can and often does (temporarily) seriously damage our quality of life by destroying our conscious perception of the quality of our sleep (as opposed to the objective quality measured by the PSG). And I personally think that asymptomatic OSA sufferers may also be more likely to have lower AHIs---more in the moderate and mild range than in the severe range.

So I can see why the major finding that the rather recent study cited by DrowsyDancer at http://chestjournal.chestpubs.org/conte ... .full.html, which is : "A high baseline AHI was the only significant independent predictor of better CPAP compliance." is a plausible one.

As someone who suffered through a serious, substantial, and extended decrease in my quality of life as soon as I started CPAP therapy, I can understand how easy it would be to give up: Prior to starting CPAP I was a functioning adult with no serious health problems. Within a month of starting CPAP, I was snarling regularly at my husband; semi-functional at best at work---reasonably competent most days in my teaching, but much less so in terms of grading my students' work or doing my share of committee work; I resigned from several commitees at work; and I became (and still am) frightened of falling asleep a the wheel---which had never been an issue before CPAP. I still have not regained my full cognitive functioning that went AWOL some time in the first two months of therapy. So even today, there are many parts of my brain that continue to ask: Is CPAP really worth it for me? Is it really doing me any good at all given the severe sleep deprivation I've been living with since September 23? And will I ever be able to sleep from 11:30 PM to 7:30 AM without waking up a half dozen times and feeling wiped out the next morning? The intentional sleep deprivation as part of my insomnia therapy is taking a real toll on my body right now. But if I had not decided to wage war on the insomnia with professional help, I'd still be the mess I was last fall and probably even more sleep deprived due to maladjusting to the CPAP.

I've stuck with therapy mainly because I'm stubborn. And I have a healthy respect for the science behind the belief that my OSA will eventually damage my body if left untreated. And I have a full data machine so I know that xPAP does indeed eliminate most of my respiratory events each night. And I have a loving, supportive husband and an excellent PA. But even with all these resources to pull on, I've wanted to and sorely been tempted to just return the machine to the DME and say, "maybe later when I've got some symptoms of OSA when I don't sleep with the machine..."

So please don't assume that every one who abandons CPAP is an unintelligent fool. Misguided perhaps. And mistaken perhaps. But some of those folks who abandon therapy abandon it after trying to make it work under the most trying of circumstances and they NEVER, EVER feel as good with CPAP as they did before starting CPAP therapy the whole time they're trying to make CPAP work. Before criticizing them or calling them fools, try walking in their shoes for several months. And ask yourself: How long would YOU continue to try to make CPAP work if instead of making you feel at least marginally better, it made you feel 100 times worse with no end in site? And was affecting your job performance? And your relationship with your family?

CPAP compliance is a real problem: But saying those who can't or won't do it are foolish and unintelligent blames the patients instead of the lousy medical system that leaves too many of us fighting with DMEs (to secure a decent machine) and being "treated" by doctors we never get to speak to with staff who ignore our complaints of aerophagia, insomnia, continued (or renewed) symptoms with the bland "just give it more time and try a little harder."