A question of semantics: Why does the patient fail CPAP?

Haven't read the intervening posts, so someone else may have already mentioned this...

Because the medical profession has done a supremely excellent job of institutionalizing The Blame The Other Party Cop Out. The stealth hostility that pervades so many this industry's practitioners and practices is breathtaking in its sheer audacity to circumvent balanced accountability.

Jade,

Thanks for letting me know I'm not alone in how I feel.

When you write: "Because the medical profession has done a supremely excellent job of institutionalizing The Blame The Other Party Cop Out." is sounds as if you are channeling my hubby when I talk to him about how I feel about this issue.

SleepingUgly wrote:

robysue wrote: No---the advice literally was: "Since you failed BiPAP and say the insomnia is your main problem, just stop using the BiPAP, and see if that fixes the insomnia. You don't desat too bad and you have no heart conditions, so sleeping without xPAP likely won't do you any harm at least for now." (If that were true, then why was the doc so insistent in September that I had NO choice except CPAP and that I had to start CPAP NOW NOW NOW ...

That's a good question to ask the sleep doc. Have you been back to see him and get his opinion on all this? As far as what the PA said, this gets back to the recurring question of whether you need to be on this at all.

The sleep doc's office has NEVER allowed me the choice of meeting with anyone except for the PA after that initial consult. So, no, I have NOT seen the doc again.

Have you scheduled a second opinion from another sleep doc? What if you really don't need to be on it? Wouldn't that be good information to have in order to make an educated choice about what to do?

Hubby was kind enough to deal with both the insurance company and setting up a second opinion from another sleep doc that he vaguely knew in a previous job and who comes highly recommended by one of hubby's friends who still works in IT support for the local hospital hubby was at at the same time the doc was there. The manager and RT at my great DME have also heard good things about the new doc. But the appointment is not for another 2 weeks. And I feel as though I'm in limbo right now.

And I'm not sure that her suggestion that you stop using BiPap and see if that fixes the insomnia is an unreasonable one, although you might want that second opinion first.

I know it *sounds* crazy, but in spite of ALL I've gone through I do NOT want to simply "give up" on BiPAP. Physically the body is ALMOST adjusted---in the sense that I can sleep (once I get to sleep) most of the night and that SOME MORNINGS there are HINTS of that elusive way I want to feel when I wake up in the morning. And those HINTS are better than how I felt on my average pre-CPAP morning during the last two or three years pre-CPAP. And there were many MORE of those mornings with hints of what could be back in February when I was not taking any migraine meds between the end of the Lamictral trial and the start of the Depakote trial. And heck, the first two or three weeks on Depakote even went well. Things started spiraling downhill (in terms of How do you feel?) just as my spring allergies kicked in big time. A coincidence? I have no idea---but then I didn't get to talk to the PA about how the spring allergies might affect the apnea. And now that I've been off the depakote for two solid weeks, the number and severity of the headaches (both migraine and others) has increased quite a bit and the vertigo is returning on an intermittent basis.

Moreover, at this point the insomnia has a life of it's own---BiPAP discomforts have NOT been a major issue in the sleep logs since the middle of February when the pressure was lowered after the last titration study. That is except for chapped lips. So I seriously doubt dropping the BiPAP will fix the insomnia, which in the last six weeks has begun to morph again: Instead of waking up 4--6 times a night (in a six hour sleep period), I'm again not getting sleepy enough at bedtime to go to bed and successfully fall asleep within 15 or 20 minutes---even though bedtime is at 1:30AM, I'm drinking no caffeine after 10AM, I'm pretty consistently getting myself out of bed between 7:25 and 7:35 even after nights where I don't get to bed until close to 2:30AM, and I'm not consciously taking any naps. Micro naps, however ARE an issue on some days---particularly in the two or three hours that follow supper if hubby and I decide to watch TV.

Moreover, I think (in a not entirely comforting way) that my body has indeed grown dependent on the BiPAP in the sense that my body (and perhaps my unconscious mind) appreciate not having the apneas: When I do fall asleep in a micro nap in front of the TV (in spite of myself) or in any of a number of other places where micro naps seem to occur on my worst days, I will jerk myself awake with the knowledge I was starting to snore or with the feeling that something "funny" was going on with my breathing. Not a comfortable feeling---and NOT one I had back when my OSA was still undiagnosed.

And these experiences with jerking awake from the micro naps feeling like I couldn't breathe properly have literally created a fear in me of even TRYING to sleep without the BiPAP at night---I am terrified now that if I tried sleeping without a BiPAP I would indeed develop all the symptoms so many have said they had prior to diagnosis that I never had: Dreams of drowing. Dreams of suffocating. Waking up feeling like I'm being suffocated. Repeatedly waking up drenched in sweat (instead of the once or twice a month that it happened pre-CPAP and continues to happen with CPAP). Suddenly finding myself waking up needing to go to the bathroom multiple times a night. Not to mention going back to enduring the pain in my hands and feet. And potentially adding OSA headaches as yet another headache type to my already potent and almost daily mixture of migraine, tension, TMJ, and sinus headaches.

And so for now, I feel caught between a rock and a hard place trapped between the need to manage the daily headache pain and the nightly insomnia with Kaa as a constant torn in my side that simply makes everything so much more difficult because nothing about sleep is spontaneous any more.

Take heart... When you die, it just means that you have failed at life...

HoseCrusher wrote:Take heart... When you die, it just means that you have failed at life...

Not my definition of "failed at life" at all. To fail at life is to make both yourself and those around you miserable. And it does not require dying to do it.

Let's see now, from the doctors perspective when you "failed" CPAP did you make them and yourself miserable...?

For the record, I totally agree that the medical community needs to come up with a better way to indicate that CPAP doesn't work for some people. Your example of drug intolerance is perfect.

Sleep medicine has come a long way over the past 30 or so years, but it still has a long way to go. Including using proper terms when reviewing progress (or a lack of progress) in treatment.

robysue wrote:

HoseCrusher wrote:Take heart... When you die, it just means that you have failed at life...

Not my definition of "failed at life" at all. To fail at life is to make both yourself and those around you miserable. And it does not require dying to do it.

If you were making those around you miserable, your death would likely make them happy (or, at least, less miserable...) So, dying would be failing at failing at life!