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

Does anyone have the experience of the Cpap/Apap making it harder to breathe? I wake up at times with my breathing feeling constricted or obstructed. I know it’s not my imagination because I check the o2 and that is also low. It feels better when I take the mask off. I also have GERD which the Cpap aggravates and wonder if that is irritating my airways.

Jump to this post

Hi @kudzu, I have had issues when I first started using my CPAP when it felt harder to breathe and it woke me up. For me I think it had something to do with the pressure being too high and I was able to restart the CPAP so that it went into ramp up mode where the pressure is lower.

It always feels better when I take the CPAP mask off. I'm guessing you like yours about as much as I like mine. I tolerate it because I know it reduces the amount of events I have at night. Have you discussed your symptoms with your sleep medicine doctor or care team? Maybe they can adjust the machine or offer some suggestions.

REPLY
@johnbishop

Hi @kudzu, I have had issues when I first started using my CPAP when it felt harder to breathe and it woke me up. For me I think it had something to do with the pressure being too high and I was able to restart the CPAP so that it went into ramp up mode where the pressure is lower.

It always feels better when I take the CPAP mask off. I'm guessing you like yours about as much as I like mine. I tolerate it because I know it reduces the amount of events I have at night. Have you discussed your symptoms with your sleep medicine doctor or care team? Maybe they can adjust the machine or offer some suggestions.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
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