BrainsNeedSleep

I found it sort of counterintuitive that my mask instructions say that OVERtightening the mask straps was likely to lead to MORE leaking... now with the use of EERS treatment and having to patch the normal vented mask's vent holes with Mack's silicone Putty (the vent holes have been moved further down the hose assembly, I still have them!) I have two different leak-abatement issues to address, but my sleep is getting better, and my numbers, such as they are, are waaaay down. But one leak and poof -- there goes the night... !

And definitely doing something that helps the hose move unimpeded whilst you move around in your sleep will help a lot. I have a headboard with a concave top edge, and the hose slides nicely along it just fine.

I have one of those jigsaw-puzzle-piece-looking "CPAP pillows" but found it was not comfortable -- though reading the commentor's remarks below about taking some stuffing out of a different pillow makes me think I could try that for a fix on the PAP pillow... I do what Dan does, and position myself toward the edge of the pillow. Also I use a latex pillow that gives better support for my neck, and it has a bit of a curve away at the ends, which helps. I have learned to sleep with an arm or hand tucked under a pillow here or there to help get "just the right" balance of comfort and mask-not-leaking. It takes a little trial and error, which can be hard to put up with when you're already tired, but I hope you persist until you find what works well enough for you most of the time!

Given that I read conflicting information about the sensitivity of some of the fitness-tracking devices and whether they are or are not validated, I'd like to see some serious investigation of them. Most people I know, other than the digitally-embedded, try plenty of new apps and eventually use only a few of them. I have a sleep tracker on my iPhone and no longer use it, now that I have learned a few things more about what actually is wrong with my sleep, and that while it says it is validated, the developers flat out refuse to provide proof of that. "Trust me," says the spider to the fly. No, thanks. I'd like to see more evidence.

Have you downloaded SleepyHead software (sourceforge.net) and looked at your own data? If so, what sort of events is your particular machine flagging? I understand each manufacturer 'scores' events differently, but SleepyHead will show you how regular/irregular your breathing is, when you have the most problems, and from there you can begin to figure out perhaps some things to do -- or at least have the print outs to go to your "sleep specialist" and push for better treatment . Of course, this is all presuming that the exhaustion is a result of the poor sleep, though Dan does make a good point that it --exhaustion -- can be caused by other things. Miracles, I think, happen to those who persist. I encourage you to do the same!

Personally, I think people should be allowed to have access to the clinicians's set-up menus and be able to make minor adjustments to their pressures -- IF they are well-enough informed and have discussed it with their docs. I know the code for the machine I currently use and have set my own -- and have also NOT done it with a different machine, because I realized I was not thinking all that clearly at the time, and shouldn't be mucking about with the pressures. It is easy enough to go online and find out what the "secret" codes are...usually, at least on the older Respironics, just a combo of two buttons being pushed for a certain amount of time until a certain sound occurs... but seriously, it is easy to think we know more than we do about this. I keep thinking I know, then I find out how much I don't...repeat cycle... So do be care-full.

PS -- humidification -- I found that at highest level, set by the DME, the humidity was too much and was contributing to events! Once I figured that out, I lowered the amount of humidity and my events calmed noticeably.

Yabadaba -- you have my sympathies! Yikes! Yeah, this is a bit more of a chore to get sorted out than it should be, but hang in there -- and if you listen to enough others you will begin to find the patterns in the information and be able to make your own decisions from there. One of the things I would suggest is reading online reviews of the various masks that are written by other users. Based on the details some reviewers will helpfully provide you might be able to determine which ones you think might work best for you, and try them. You can, for instance, go to cpap.com and read reviews of machines, masks, etc there -- I have found them helpful. I think one of the most important things, and it's hard, is to maintain as much patience as possible -- I know, I hear you laughing -- with the lunacy that can be health care these days. Your medical equipment provider needs to offer you several mask types, with you LYING DOWN in the position you normally sleep in, WITH THE AIR BLOWING at your pressure. They have machines in their offices, be sure to politely ask them to put it on with the mask! I have taken to assuming of course they will, and with some prompting, it has worked. I currently find the ResMed AirFit full face mask the most comfortable one, and i most nights am able to keep leaks to a minimum, extremely important for my treatment of complex apnea. I hated the machine and mask for years. Now, knowing it is helping me recover, finally, I have a much friendlier relationship with them! But it has taken years. You are lucky -- you get to start here! Persist, persist, persist, and come back for encouragement.

I don't remember the surveys on health conditions asking us about PTSD, and in asking around informally I am finding that a number of people I know with the diagnosis also have sleep apnea -- especially complex apnea. What do other folks think?

Sigh..."sleep hygiene" reminds me of high school...but I do 15 minutes of back decompression exercise during which time I meditate...stretch my leg muscles...put a couple of hot water bottles in the bed to keep my legs from cramping up (addressing low vitamin D has helped that greatly)...reading in bed for about 15-20 minutes (nothing too good, like one of the Game of Thrones novels, which kept me up way too late!)...and keeping lights low and NOTHING really mentally or physically stimulating for a about 1.5 before bedtime...and getting up at the same time every day (my doc was stern about this and I think he's great so I listen to him)...has helped enormously. The lightbox in the morning has me in better sync, too, a huge help. I'm sleeping better now than I have in decades.