In December last year after realising that waking up tired every day and waking up anywhere from 3-7x a night every night for probably 8-10 years wasn't normal, I got referred for a sleep study.
I had a home sleep study that diagnosed Central Sleep Apnea with average AHI of 35+/hour. After trying an auto adjusting CPAP machine for a couple of nights and literally being woken up every 2 mins, the specialist referred me for an in hospital study. The hospital study concluded the same results as the home study.
My questions and issues are as follows:
1) I've had at least 4 appointments with the specialist since December that last about 5 mins where there's no discussion around investigating possible causes of the central sleep apnea, with the exception of having had an MRI to ensure I didn't have a brain tumour, which thankfully I didn't. Quick research shows there are multiple causes for central sleep apnea. Is it common not to just focus on treatment of CSA without investigating the possible root cause of it?
2) With the new machine I've been trialling the past week, it is set to fixed pressure, which starts at 4cm/hour and over 30 mins ramps up to 8cm/hr based on hospital recommendations, I do eventually get off to sleep, but only last about 2-3 hours at the most then wake up and my nose is sore and my heart is thumping out of my chest as I try to keep up with the machine. My AHI count is still 16/hour. I end up after 2-3 hours of using the machine just turning it off and going without the rest of the night. This is not helped by the fact I had a broken nose as a kid and can't even comfortably where sunglasses - despite corrective surgery 20+ years ago). At best I might have to try other masks but im not convinced CPAP is going to work for me.
3) I've heard from quite a few people with obstructive sleep apnea that they've never been able to have a good night sleep with a CPAP machine and I don't imagine i'll ever get close to having an 8 hour uninterrupted sleep with one, no matter how they configure it. Credit to anybody who can get a proper sleep with these things. Based on others experience, what are my likely alternative treatment options? I've read there are a couple of drugs that can be prescribed - cetazolamide (Diamox) or theophylline (Theo-24, Theochron) and possibly others. Anybody been prescribed these and do they work and what side effects do you get? I'm also wondering if an oxygen tank might be the go, as I seemed to sleep the best with this in hospital.
Any advice from other CSA sufferers based on own experience would be appreciated.
Thanks
Apneabloke