BrainsNeedSleep

Hi, Tenaciousbt -- I have tried all kinds of pillows, from expensive down, to down-and-feather combos, to polyfiberfill of different densities, to a special CPAP pillow with side cutouts, etc (which was miserable for me). I settled happily on a foam rubber pillow, medium-soft, that is thick/high enough to support my head with my spine pretty straight, and since I sleep with a full-face mask and have to sleep on my side, I just sleep with my face toward the edge of the pillow. My head's weight is fully supported, and the curve-off of the end of the pillow causes little pressure on the mask, and I sleep much, much better. I have heard some people love buckwheat-hull, as a poster says above, or even flax-seed pillows, and some make their own pillows, but a regular foam-rubber one works so well for me I actually travel with my own pillow now. I would start with assessing how the person sleeps and what their doctor recommends about positional changes, and then experiment from there.

I have complex sleep apnea. Leaks below the machine threshold for "large leak" notification are still significant to my treatment. Managing any and all leaks thus is important to my care and makes a noticeable difference to my daily functioning. Since others may also be similarly misdiagnosed as I was, maybe we should pay more attention to leaks and not shrug them off if they're not "bothersome."

A folding solar panel and a marine deep cycle battery can help, if the weather cooperates. I have a red Honda generator that I can just plug my machine into and that works well, too. Run the generator outside, of course! Always good to have more than one source of power.

I love to read from other patients who persist in trying to figure out their own care, while at the same time despair at the state of sleep care for so many. Keep advocating for yourself! And have you tried the SleepyHead software created by JediMark? It's available online, and also check out SleepImage -- "cardiopulmonary coupling" and you can see, and your physicians can see, a lot more data than will be available from your CPAP. Good luck!

So one good strategy for all patients leaving the overnight sleep test is to have written down the name and size of the mask found effective? And that should go to the DME. And the DME should provide that mask. Some seem to carry only a few selected masks, but they (IMLE) do seem to carry some of the "most popular". I have also had better luck with ResMed masks - the AirFit FFM in particular seems to shift least when I am on my side, and I have a hard face to fit. The CPAP pillow you see in the catalogs was miserably uncomfortable and did not prevent shifting at all. Experiences may vary...

Hmmmm...sounds interesting! Numbers under 1 = good!

Before I had to return to a FF mask for unrelated reasons, I also used the Swift FX nasal pillows and LOVED them -- no issues with soreness at all, ever. Respironics also has a new nasal-kind-of mask where it doesn't actually go up into the nostrils and it seems to be pretty cool -- though, alas, at the moment I cannot use it. I am hoping to adapt my stuff to work with it one of these days. I wonder if those satin pillowcases that women use to keep their hairstyles from getting messed up (at least my elderly aunts did) would be helpful in reducing mask slippage, especially with nasal pillows.

You wrote: "My sleep study scores were 5 episodes per hour during light sleep and 12 during REM sleep. I was really only prescribed the machine because my oxygen drops to 81%." *This is the stuff that drives me nuts. * YES you needed the machine because of the O2 desaturations down to 81%, but you ALSO NEEDED IT because of the numbers! It is NOT only the number of apneas/hypopneas that causes trouble, and the desaturations they can cause in some but not all people, but ALSO the *sleep fragmentation! * ANYthing that rouses you out of the normal sleep "architecture", that cycle of light/deeper/deep sleep we do, can become a problem if it happens frequently enough for long enough. I don't know who suggested you really only needed the machine because of the desaturations. The AHI numbers are a moving target, the machines and the scoring are variable, and you need to protect your sleep regardless of the numbers. If they tell you AHI of 5 is normal -- here's a pound of salt for you. IF they tell you under AHI of 15 is acceptable -- here's a ton of salt for you, and in my own imperfect but long-experienced opinion, get yourself a second opinion. It's YOUR brain, it's YOUR life, and a lot of what I am learning about AHI and guidelines etc is politics. By the way, I loved the suggestion of trying to keep tongue on the roof of the mouth -- I will have to try that one, now, too. And Dan's suggestions about the humidifier etc were (of course) great, and I only ever wake up with such dryness and/or sinus headache when I have, despite my best efforts, slept on my back with my mouth open OR if the humidifier ran out of water. Good luck!

Wow, Dan, I didn't know that about the machines and I have been for a while using the same one!
For what it's worth, that C-Flex option is GREAT for those of us with claustrophobia --

weird, I wrote a reply to you but it seems to have disappeared along with a reply by someone else.
The short answer should be, we don't know what else is going on with you that could account for this. Additional info: if you have had the condition for a long time, then there is a period of time (varies by who tells you) where your body is trying to make up sleep, and your sleep architecture can change so you wind up having your regular get-up time be in the middle of deep sleep, which is miserable and can make you cranky and groggy. If you don't notice improvement, get back to your doc and don't take a non-answer for an answer. Are you having mask leaks, and so aren't getting full benefit from therapy? All kinds of things could be going on.