no longer using my sleep machine

Hello friends,

well, I know this is bad, but I have given up on using my apnea machine. I HATE it! But I can feel that because of not using it, I'm waking up every hour, wide awake, yet feeling weird. does that make sense? II suffer from severe sleep apnea, the Dr. said it's the worst he's really ever seen, yet i am refusing to use my machine, because of the way it makes me feel, it wakes me up just as much as me sleeping without it wakes me up. I don't know what to do. Is it dangerous for me to not be using my machine? What do you all think?

Hi!

Yes, it's actually very dangerous for you to stop using it. I had the EXACT same issues you're having so I'll share my experience in case it helps!

I was convinced I was waking up just as often with it on as I was without it, and at least without the CPAP I was comfortable :) So I told my doctor, "thanks but no thanks". He sent me back to the sleep doctor for a sleep study with my CPAP machine (my first study was done without a mask, just monitoring my normal sleep, and it was done in my home).

After the second sleep study, this time done in the clinic, I said "see? I can't sleep with it on!" The tech looked at me funny and said "you slept pretty well!" I just shook my head and said that their machines must not work well. When I went back in to see the sleep expert he had me sit down and review both sleep studies with him, first the one without the CPAP then the one with it. It was NIGHT AND DAY different! Without the CPAP I was dropping into sleep for just a few seconds then popping awake to breath. I was doing this allllll nigggggh long. I was aware of barely sleeping due to all the wires and junk on me, but and I know I zoned out, but I had no idea I was actually SLEEPING and I wasn't waking up because I was uncomfortable, I was waking up when my blood oxygen levels dropped too low.

Then we looked at my results wearing that freaking mask! I said, "I didn't sleep at all during the test." The doctor said, "Actually, you were in stage one sleep within fifteen minutes." WHAT??? no way, I was aware of the room, the blinking lights the sounds etc... so I push back and he pulls up video of me sleeping, and sure enough I'm in bed, restless (EEG shows I'm awake) then I quiet down and I drop into sleep on the EEG! He sat there forever going through my wake cycles with me where I fussed with the mask and tossed and turned, but mostly slept in stage one or two and a few times stages three and four. But what REALLY made an impression, was the part of the readout showing my blood oxygen levels. without the mask, I was dropping way down into cell death zones. Basically without my CPAP on, I'm starving my body of oxygen hundreds or thousands of times each night. When this happens it causes the most damage to the brain, kidneys, heart, and liver.

The take away is that It FEELS like you aren't sleeping with the stupid mask on, but you are actually getting MUCH more sleep with it on that you think you are. Even more importantly, the frustrating night in the lab with my CPAP, my blood oxygen levels NEVER DROPPED. NOT ONCE.

So please talk to your doctor(s), look at your results and I bet if you just gut it out, once you KNOW you're getting more and better sleep with the mask on regardless of how it seems, you're eventually get used to it and sleep fine.

I don't know about you, but I need every single brain cell I have!

Thank you for your reply, I am exactly the same with my sleep levels where I stop breathing very few seconds while i sleep, but when have that damn mask on, I just swear I'm not getting any rest. I end up finally getting up 2-3 hours later and rip it off just to get some sleep. But lately, I'm waking up every hour, then, I sleep half of the day. I guess I should do the right thing and try that mask again. Maybe I'm just wearing it wrong. Thanks for your concern.

Give yourself a timeline - wear it every single night for two weeks then after that if you don't feel like it's helping go back to the sleep doctor :)

Maybe you just need a different mask or head harness. It took me 3 different types of masks before I was comfortable. I ended using the nose pillows. It's 2 soft rubbery/ flexible thingies. Here's a link if you want to check it what looks like https://www.cpap.com/productpage/resmed-mirage-swift-lt-repl acement-pillow-sleeve.html?gclid=COfU8oT8i9MCFU9WDQodEyIOdw . My dr. did tell me I would have better results with nose mask or full face mask but I hated it so he agreed to let me use this. I have had great results!

I wish you the best of luck! It is very dangerous not to use it and it could lead to stroke. Every time you have an episode of not breathing you're depriving your brain of oxygen!

I have a CPAP. Just get used to it. Persevere. It's the only way. Make sure it's adjusted right and it's not the leaking air that is waking you up. You will feel better than you have ever felt if you just persevere and be determined to use it. I know this as a fac****ch some TV or read a book to unwind while you fall asleep. There should also be an adjustment on there that "ramps" up the pressure so that it doesn't start full blast. That helped me when I started. Now, it's second nature. I would never again sleep without it.

yes it is dangerous to not use your CPAP machine. Go talk to someone at the sleep doctor's office or cpap supplier and voice your concerns.