CPAP Intolerance

Posted by Bax @tbaxter33, Feb 20, 2018

Over the years, I have had two separate sleep studies. Both were absolutely horrible experiences. I have insomnia anyway — since childhood — so that equipment simply made it horrible. I was freaking out. I think about 4:30 AM on the last one, they broght me some ambien, so I may have dosed a little bit between 5:00 and 5:30 AM, at which time they annoucned the study was over. Both studies said "severe sleep apnea". Of course, I don't know how they could diagnose that on about 30 minutes of sleep. Anyway, on both occasions I tried hard to use a CPAP for weeks. Those were about the worse 4 months or so of my life. Conclusion: If you want me to sleep any, I do not use the machine. If you want me to use the machine, I will get far, far less sleep than using it. I just cannot imagine how anyone can tolerate them? I have tried various masks including the little nose pillows. I find a comfortable spot and I feel air blowing in my eyes, which causes me so much anxiety. I was shamed — terribly shamed — by providers when I would tell them that I just cannot do it. Every single proivder now asks me about it and feel like they need to read me the riot act about what may happen if I don't use it. Nobody understands the situation — nor do they try. Yes, I am extremely tired many days, but less tired than trying the machine and getting so worked up about it every night. And, they wanted me to take it when I travel ?!?! Nope, not going to happen. Ever. My memories of wearing the mask — "I cannot wait to get this thing off so I can get a little bit of sleep". Frustrated as can be here.

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@kudzu

Hi John;
I’ve had issues for the past year with the apap. Things were going well for awhile then for some reason went awry after I moved to Tennessee. Naturally I worry that the breathing difficulty is a symptom of restrictive lung disease, which it may not be.
Yes, I too have fewer events but if the machine wakes me up maybe it doesn’t matter.
I know how to adjust the settings so maybe I’ll do some experimenting.
I’ve been referred to a sleep dr/pulmonologist here, but can’t see him until August.
I hate to say it, but most progress I’ve made is due to my own tinkering and what I’ve read on cpaptalk.com or YouTube.
I did turn the pressure up after one nurse practitioner suggested it and that helped for awhile but not the last few nights.
I could try turning it down and see what happens.

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Mine was set to run from 8 to 18 and it was always at 18 when it woke me up. When I press the ramp button it drops the pressure to 4 and works up to 8 and up as needed. I ended up learning how to tweak the settings myself also and set the high end for 12 which was where I was getting my best numbers earlier.

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