Need Some Help / 3 years of trying to adapt to CPAP

Hi all. I was diagnosed with mild sleep apnea (AHI 7.5 / RDI 11.2) 3 years ago. All of my events happen in REM sleep (REM AHI - 25.7). I have severe symptoms and have been battling for about 6 years now (lost job, had to move in with family). My main symptoms are insomnia, unrefreshing sleep (first thing I think about when I wake up is how tired I am and how I feel like I haven't slept in years), brain fog, fatigue, very poor concentration, always tired, and lately depression and poor mood due to years of sleep deprivation.

I was prescribed a CPAP machine about 3 years ago but was never able to fall asleep with it. Literally not one time. I have tried all the tips and tricks I have seen recommended. I have tried all mask types, adjusting pressures, special pillows, wearing it for 3 hrs before bed every night, wearing it all night long hoping to eventually drift off to sleep. After a couple months I bought a BiPAP thinking it would be easier to adjust to. And while I do like the lower EPAP it allows, I still haven't fallen asleep with it. Probably worth noting I need an IPAP of about 10.6, otherwise I feel like I'm suffocating.

I have 2 main issues. First is the machine makes my heart beat really hard when I wear it. It's not an anxiety thing. I am perfectly calm and relaxed. My HR doesn't speed up. It just beats really hard. It seems to be a physical reaction my body has to the PAP therapy. This makes it very hard to go to sleep. My body literally shakes a bit with every heartbeat. This continues for hours. As soon as I take the mask off my heartbeat goes back to normal in about 3 or 4 minutes.. My second problem is when I wear the machine my autonomic breathing never seems to take over. My mind is always focused on 'breathe in/breathe out'. As soon as I take off the mask, my brain relaxes, my autonomic nervous system takes over, and I drift off to sleep.

For 3 years I have been pulling my BiPAP out of the closet now and then telling myself I have to make it work or I'm going to die. But every time is the exact same. In the meantime I have also tried MAD, tongue retaining device, myofunctional exercises, diet changes etc. Nothing has helped. I saw two ENTs hoping surgery might be an option but they didn't seem to think so. Unfortunately I am now on Medicaid so getting another opinion from an ENT who specializes in sleep disorder breathing seems impossible. I really feel like getting PAP to work is my only option left but every time I try I just don't sleep and it's so frustrating. I have never seen anyone have this much trouble adjusting to it in my years of research. If I could get past the pounding heart issue that would be a big first step. Does anyone have any advice that could help me? I really hope so. Thanks so much

To help us help you, we need some information:
Brand name of machine (Typically Philips Resperonics or ResMed)
Model of Machine (usually written on the front--you have said alternately CPAP and BIPAP. Please confirm.
Type of mask (full face, nasal, nasal pillows, nasal cradle)?
Brand and name of mask. In the three years you've been trying, have you replaced the cushion or straps at all?

Tell us a little more about your heart pounding when you try your CPAP. Do you feel it, hear it, or both? If you just put the mask on but don't turn on the machine, do you still perceive the pounding, or is it only with the machine on? Does it pound steadily or only on inspiration or expiration? Do you feel or hear anything else at the same time? Are you struggling to exhale? What do you think the pounding means (do you feel like you're going to die from it?)?

In certain positions in bed, I can hear and feel my heart pounding. It has to do with the way my ear is positioned on the pillow and conducted noise through the pillow/mattress. It's my normal heart rhythm, I'm just more aware of it because of the conduction of sound in my quiet bedroom. The mask and hose may also be a conductor of sound. Could it possibly be that???

What exactly do you mean by this:

my autonomic breathing never seems to take over.

? I think you are saying you are hyper-aware of your breathing because of the machine. Have you tried anything like practicing with the machine and mask while reading or listening to music or watching TV to get your mind off of it? Have you tried any white noise to mask the breathing and heart sounds?

What have you tried to help yourself get used to the machine, besides putting the mask on and trying unsuccessfully to sleep?

Those answers will help us understand your situation a little better.