Hey everyone!
I'm a longtime CPAP user, but it's been awhile since I posted here, largely because I've been doing pretty well with my apnea therapy.
I don't recall exactly how many years since I first started using a CPAP. I'm one of the odd cases where I never snored, so I didn't think apnea was an issue for me. It wasn't until I complained about extreme fatigue and a struggle at staying awake during the day. My first sleep study showed I had obstructive apnea and I was put on a single pressure brick of a CPAP machine. It didn't really help much, except to make me more aware that sleep apnea was a problem for me.
I spent several years on that first machine. My doctor at the time wasn't all that interested that I still wasn't particularly rested during the day. Or that I was having trouble finding a mask that actually fit my face, and with my CPAP blowing my mouth open and blowing out the seals on my mask. So I switched doctors and, after my next sleep study (followed by a titration study), they diagnosed that I also showed signs of central apnea, as well. They put me on a BiPAP machine, but in a way, that was worse because it showed I was lighting up apnea events all night and when it tried to force more pressure, all it would do is blow open my mouth and blast out the seal from my mask.
By that time, I'd joined this board and was desperately looking for info and help I wasn't finding from my doctor. The doctor is fine, but she's focused on the medical part of the issue and not, I realized, on the semantics of why things might not be working out for me.
I'd downloaded the software from here to track my BiPAP and was a bit shocked to find that in the hundred or more apnea events I was having at night, there were events that spanned long blocks of time where I wasn't breathing well, in some cases five or six minutes out of ten. I pointed this out to the doctor and they swapped me over to an ASV (Philips DreamStation). But I was surprised to find that I was having the same results even with the DreamStation.
After a lot of whining on the pages of the forum here, I realized that a lot of the obstructive part of my obstructive apnea wasn't simply due to a relax airway or palate closing off a bit. It was the phyiscal mechanics of my chin dropping as my mouth came open when I fell asleep...and of my head tipping forward to create more of an actual chokeout of my airway.
The CPAP/BiPAP/ASV response to obstructive is to blow more air, with higher and higher pressure, until the airway is forced open...but air pressure alone isn't strong enough to lift my head or close my jaw to take the pinch off my airway. Worse, when the PAP pressure gets high enough, against high enough a blockage, it'll follow the path of least resistance BACK out the mouth and nose, to the mask. So: mouth blown open, mask seals leaking badly. This is something the doctors and device designers simply don't know, don't want to know, or don't care to tell you about.
My solution, and my success, was from a suggestion I found here. Keep your effin' neck straight.
I pretty much sleep on my back all night, so if I use big, fluffy pillows, it'll give a head start (pardon the pun) to my head tipping forward and choking off my airway. But the REAL help came with wearing a soft cervical collar.
The cervical collar accomplishes two goals: neck straight and mouth closed. The "neck straight" is obvious. It's what a cervical collar is intended to do. I wear it loose enough to where the V in front fits under my chin and provides a kind of passive support to make sure my mouth stays closed. The mouth closed is pretty important, though. Combined with my full face mask, I don't have to struggle with trying to keep my lips sealed. It's automatic for me. I tried a variety of chin straps, but for me, with the shape of my head and jaw, all they do is force my jaw back, not closed. I've never had luck with a chin strap.
Since I started using the cervical collar, my AHI averages less than one...usually, just a tenth or two above zero. My last trip to the doc yesterday, my average AHI had been .1 The ony time it gets any higher is if I haven't worn the collar, simple as that. But only as long as I'm using my ASV because it heads off most of my clear airway events before they happen.
So...success.
Keep in mind that my success is very likely not going to be the same as anyone else's. The combination of my apnea, the physiological structure of my head and neck, my evolved comfort in being able to sleep on my back all night, work together with the simple solution of the cervical collar to be hugely successful for me. My doctor did NOT recommend a cervical collar and probably would never do so and to be honest, she's probably right. Coming from a medical professional, the various risks or side effects of wearing a collar probably outweigh the benefits for a lot of patients because it simply might not be the right thing for them.
My point, though, is that even with as much as the doctors know about sleep apnea, there's a LOT that happens in the real lives of real people that falls outside the clinical knowledge and practice. The medical community SHOULD be considering sleeping position and ways of keeping the neck straight so that PAP therapy can actually work...that they don't is a massive failing for them, in my opinion...one that leaves desperate people struggling to find solutions outside the care of their doctors. It's telling that on my last sleep study, they wouldn't let me wear my cervical collar and in doing so, couldn't actually evaluate me because I couldn't sleep long enough without intrusive events to be able to get into REM sleep. Wasted time and money, highlighting that gap between medicine and practicality.
Again...let me be completely clear here: I'm not recommending anything for anyone. My story, and the stories of everyone else here, are just for examples. If you're struggling, go to your doctor. Mention these examples and ask their opinions. And if you decide to follow the example someone has offered here, know that you're taking your own risks: come into it with your eyes wide open. None (or perhaps few) of us here are actual doctors. So be careful. And good luck.
