ASV & fails- would side sleeping help?

[rosevader1]

Thanks for the info. I ordered one from Amazon today and hopefully will be able to try it out Monday night (hurray for Prime shipping). I'll also be calling the doc again. I'm sure they'll be thrilled!

[Pugsy]

The link I gave was to the one that the forum member has been offering. He's a really nice guy and continually trying to improve his product. This one will come with more than enough hulls and you will very likely need to remove some but he provides a plastic bag to store the hulls in. His original buckwheat hull pillow that I got back in 2009 didn't have the foam in it nor did it come with nearly as many hulls but it had enough for me to do my experiment to see if it would help me stay or my side even back then.

I hope it helps you sort out your sleeping position issues comfortably. I know I love the pillow just for how it helps with my arthritic neck issues along with letting me make a little nest for my mask when I am on my side.

I am hoping that if you can stay on your side more that you will need less pressure to deal with the obstructive stuff and maybe these recent settings will be enough to get the job done since we know that using more pressure makes the gi issues worse. There's a good chance it might help...I know some people who need a lot less pressure when they are on their side than they need when they are on their back....I sure hope you are one of those people.

Worth trying for sure.

[rosevader1]

The pillow arrived Sunday. I tried to see if there was any effect on AHI from enforced side sleeping.
Here is the result from a typical night with latest settings with no enforced side sleeping:


Here is a night with the same settings with the pillow forcing me to side sleep:


So, maybe somewhat better, but still not great. I have a follow up with sleep doc next Tuesday. Frankly I have no idea what to try next.
Having AHI with double digits with an occasional dip down to 8 just isn't what I would expect from a therapy I use 6 hours every night, with 0 major leaks. Maybe a higher pressure would clean up the OA, but my gut can't handle it (I have Crohns and gastritis). Any thoughts? Anyone else have this kind of problem? Thanks.

[rosevader1]

Another question I have is if the machine is not really helping me get better results than I had with no machine, what's the point of using it? My at home sleep study was AHI 21, with less events when I was side sleeping, so what exactly is the machine doing for me anyway?

[Julie]

I would talk to a pulmonologist, maybe a 'sleep' neurologist (not an ENT surgeon - yet, anyhow) to see if they can come up with anything because your story is pretty unusual and if you still haven't found answers, someone needs to think creatively.

[PEF]

Hi, I hesitate to make suggestions here because I am not experienced. But that said, I did have a lot of painful stomach air when I first started. I can say 2 things about my experience with that. First is that it tends to resolve itself over time with no changes. The second is that I agree with raisedfist that a nasal pillow mask or plain nasal mask with mouth tape might help. I still start taping again whenever I raise pressure and get stomach air and leaks. The mouth taping really helps while I am trying to adjust to even tiny amounts of increased pressure. Maybe you could try adding mouth tape. I know that it really bothers some people, but not others. And if that is too uncomfortable for you, a soft cervical collar, which I use on occasion, will also help to keep you from swallowing air through your mouth.

[rosevader1]

Thanks for responding. A couple of questions. What kind of pressures are you using? Did you switch from a ffm to a nasal one and that helped your aerophagia? My pressures are fairly high, and I am using a ffm. Even at these pressures I have aerophagia ( what I would consider discomfort: belching, gas pains etc), and use my machIne anyway. At higher pressures my aerophagia was not discomfort, it was pain ( 1 night it was a 9 on a 10 pain scale, up to birth pains in pain level). This is all discouraging to say the least.

[PEF]

I probably should have mentioned that I am using fairly low pressures in the 6 to 8 range. Right now, I obviously need higher pressure because on my Sleepyhead pressure graphs, you can see it constantly pressed against the upper pressure. I have to raise pressure very slowly because I am so sensitive to it. Small leaks tend to wake me up often. I started with a FFM because I tend to be a mouth breather, but had terrible issues with aerophagia, waking up from the noise, dry mouth and lips, etc. So I went to a nasal pillows mask with tape or soft cervical collar (tape for me is more comfortable) and was able to make that work pretty well. They say that it is hard to use a nasal mask with high pressure, but there seem to be quite a few on the forum with high pressure that have done it.

Sorry to hear that your aerophagia is so painful. Mine was not as bad, but did resolve over time. The tape really helped with it. I know how discouraging this can be, but most of us can find success by just working at it. We are all so different.

[Pugsy]

I am sorry that the side sleeping didn't lower your pressure needs. It's possible that you are like me and the pressure increases are need for REM stage sleep events and there's not much we can do about those.

But here's a different idea to try. I know you think you need a full face mask because of mouth breathing but maybe consider trying a nasal pillow mask because sometimes less pressure can be used with a nasal mask than what is needed with a full face mask. Can't guarantee it but maybe worth trying. Sometimes people need 2 to 3 cm less when they use a nasal pillow mask than what they need with a full face mask.
You may or may not do enough mouth breathing to seriously impact the therapy itself and just cross that bridge if/when you come to it.
Even if you did have a little bit of mouth breathing leak it might be worth it to compromise a bit if it eliminated the aerophagia issues.

[rosevader1]

Well, the sleep doc has taken back the bipap ASV and regards it as a fail since he can't increase pressures without my suffering from horrible, painful aerophagia. He recommended a dentist who specializes in oral appliances for sleep apnea. I'll see what he has to say. Right now, I'm depending on enforced side sleeping (between 2 weighted pillows) to at least minimize the OAs. Without the air pressure from the CPAP the sleep doc believes that most of the CAs will not occur.

[brucelegs]

Get one that you can add or remove the hulls to make it more to your liking.
Some out there don't have a way to alter the amount of hulls.
I used the previous incarnation of this pillow (see link) when I was doing my testing and it only had the hulls and not the foam.
I am currently using this pillow which is essentially a new and improved version of my orginal.
https://www.amazon.com/CPAPfit-Pillow-- ... fit+pillow

I have often thought that if I was using one long term that I might go for a longer version but since I abandoned my side sleeping because the pressure needs didn't change. How long of one will you need? I don't know because I don't know your height or size or wants or needs. I am not quite 5 ft tall if that helps you out any.

It didn't change my AHI but then my OSA was particularly worse when I was on my back (but it is for many people) because it was worse in REM sleep. If REM hadn't been a culprit I might have worried more about staying on my side since I actually prefer it anyway.

I wish this was back in stock I need a new one

[Pugsy]

Get one that you can add or remove the hulls to make it more to your liking.
Some out there don't have a way to alter the amount of hulls.
I used the previous incarnation of this pillow (see link) when I was doing my testing and it only had the hulls and not the foam.
I am currently using this pillow which is essentially a new and improved version of my orginal.
https://www.amazon.com/CPAPfit-Pillow-- ... fit+pillow

I have often thought that if I was using one long term that I might go for a longer version but since I abandoned my side sleeping because the pressure needs didn't change. How long of one will you need? I don't know because I don't know your height or size or wants or needs. I am not quite 5 ft tall if that helps you out any.

It didn't change my AHI but then my OSA was particularly worse when I was on my back (but it is for many people) because it was worse in REM sleep. If REM hadn't been a culprit I might have worried more about staying on my side since I actually prefer it anyway.

I wish this was back in stock I need a new one

He may not be selling on Amazon right now but the pillow is still available from original manufacturer.

https://pur-sleep.com/products/cpap-pillow

[brucelegs]

Thank you so much. I saw it was unavailable on Amazon and thought I was out of luck!