Frustration: aerophagia & pillow rainout

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JustTia
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Frustration: aerophagia & pillow rainout

Post by JustTia » Mon Jul 28, 2014 3:27 pm

Let me start by saying, I've looked at pretty much all of the solutions, so don't think that I'm just lazily posting this without searching first. I think more than anything I just need to make a frustration vent.

I've had my cpap for a little over a month now. My AHI is phenomenal. Averages around .4, and is NEVER >1. So, I'm supposed to be sleeping well, right?

Wrong. Aerophagia started in the first week of having my cpap. At that time I was using a FFM (Mirage Quattro) and on straight cpap with pressure at 12. When I talked to my doc about this, she thought it would be helpful to switch to apap. So I did, with 5-15 range. That seemed to help, in fact, in that it was *reduced*, though I still have painful gas in my belly to some degree every day. It still wakes me from sleep with a distended stomach and painful bloating/belching once every few days. Despite taking gas-x I still have quite a lot that works it's way through and ends up causing a ton of referred pain in my chest/shoulder area until it works all the way through. I'm not sure how else to fix this. I sleep on my side, with my top leg bent, causing me to twist a bit at the waist and putting pressure on my belly. As I settle into bed and get my head and mask adjusted against the pillow, I make sure that my chin is straight out. I previously was dipping my chin down, until I read that can worsen aerophagia (and it seemed to be so), so I started keeping it up more. Only that doesn't help, either. Getting super annoyed. And while my husband is a sweet guy who doesn't really seem to be bothered by gas (I mean, after 10 years and all we've been through, what's a few farts?) *I* dislike walking around farting all the time. And in 3 weeks I'm going to be going back to school and really would rather not be sitting there either farting or painfully holding it in while in a room full of college kids.

Also, I'm dealing with rainout in my pillows. And THAT is a very new thing, only been going on for about 10 days or so now. Last night it was so bad that it woke me up. Several times. Water dripping into my nostrils. Gross. To try to combat this, about 5 days ago I drafted a template and made an insulated cozy for the barrel. I never get rainout in the hose. Only in the pillows. so, it was suggested that a cozy might help. I thought that it had, it seemed to for a couple of days, but then the rainout is back with a vengeance. It seems to be worse when it's raining/threatening rain. Last night I had the humidifier OFF, and had the worst rainout yet. It was also pouring rain outside all night. I guess I'm just really, really at a loss for what to do about that. I've tried turning up the humidity (though I can't stand it over about 2, it's like swamp air) and I've tried turning down the humidity, even tried turning off the humidity. The only variable that seems to affect it at all is the ambient humidity in the room, which I can't really control except by getting a dehumidifier, I guess.

I'm not going to quit using it, because my blood pressure at least is so much better. So I know something is working right. But the rest of it is driving me up the wall. And I'm still SO tired because I wake up multiple times each night. I don't wake up refreshed or energetic or any of those things yet. I know that I've read here that some people don't start feeling the boost in energy and really feeling better for 6 months or so, so I'm trying to be patient. But I'm not sure if I'll ever get to the point of sleeping for 7 straight hours without waking up several times. I know that I *wasn't* sleeping well before because I had untreated OSA, but I sure was dead to the world from the time my head hit the pillow until the alarm went off. It might have been false rest, but the rest that I'm getting now doesn't seem any better.

I still wake up with sore front teeth on top and bottom every morning, too, that goes away within a couple of hours. I have an appointment with the dentist to look into getting some kind of bite guard or something because I suspect I'm grinding my teeth in my sleep. This is also something new since starting cpap therapy. I would occasionally snap my teeth and bite my tongue, waking myself up, which the doc said was likely due to OSA, but I never woke up with sore teeth and my dental checkups have always been fine. That, at least, seems to have a fix that everyone agrees will work. The other two things are what are really getting me down.

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Pugsy
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Re: Frustration: aerophagia & pillow rainout

Post by Pugsy » Mon Jul 28, 2014 3:40 pm

What is your bedroom air temperature?
Do you have the Climateline heated heated hose? If not...get it and use it. If you are using it, at what temp?
Condensation in the mask only ( with humidifier off) is from moisture in the exhaled breath condensing when the bedroom air temperature cools the air in the mask. The nasal pillows cool easily and there's not much room for the drops of water so we end up getting a cold shower or snorting the water.

If the barrel cozy isn't enough to prevent it then you have to either warm the air going into the nasal pillows with the heated hose or warm the general bedroom air temp so the chance of cooling is decreased....or maybe add another barrel cozy or a thicker cozy.
It's simple physics really...keep the air in the pillow warm enough so it doesn't release the moisture (no matter where it comes from) when it tries to cool down. Warmer air will hold more moisture than cooler air does.
Even though there is no condensation in the long hose sometimes using a hose cozy will still help with the rain out at the mask level because it helps keep the air going into the nasal pillow warmer. Some people even use a hose cozy on the short hose from the long hose to the nasal pillows.
We used to use hose cozies a lot more frequently than we do now because now we have the heated hoses.

So either warm up the bedroom air temp or warm up the air in the nasal pillow.

For the aerophagia....are you using EPR and if so at what setting?

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JustTia
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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Mon Jul 28, 2014 3:44 pm

Pugsy wrote:What is your bedroom air temperature?
Do you have the Climateline heated heated hose? If not...get it and use it. If you are using it, at what temp?
Condensation in the mask only ( with humidifier off) is from moisture in the exhaled breath condensing when the bedroom air temperature cools the air in the mask. The nasal pillows cool easily and there's not much room for the drops of water so we end up getting a cold shower or snorting the water.

If the barrel cozy isn't enough to prevent it then you have to either warm the air going into the nasal pillows with the heated hose or warm the general bedroom air temp so the chance of cooling is decreased....or maybe add another barrel cozy or a thicker cozy.
It's simple physics really...keep the air in the pillow warm enough so it doesn't release the moisture (no matter where it comes from) when it tries to cool down. Warmer air will hold more moisture than cooler air does.
Even though there is no condensation in the long hose sometimes using a hose cozy will still help with the rain out at the mask level because it helps keep the air going into the nasal pillow warmer. Some people even use a hose cozy on the short hose from the long hose to the nasal pillows.
We used to use hose cozies a lot more frequently than we do now because now we have the heated hoses.

So either warm up the bedroom air temp or warm up the air in the nasal pillow.

For the aerophagia....are you using EPR and if so at what setting?
I don't have a hose cozy, no. I could make one. Does insurance usually pay for an upgrade to the heated climate line, or is that something I have to do out of pocket?

I have no idea about EPR. Truth be told, I am not sure yet what that particular setting does.

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JustTia
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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Mon Jul 28, 2014 3:47 pm

I just checked the machine, and EPR says "full time" and EPR level "off".

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Pugsy
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Re: Frustration: aerophagia & pillow rainout

Post by Pugsy » Mon Jul 28, 2014 4:00 pm

Using EPR ...exhale pressure relief...will drop the pressure during exhale which might help your aerophagia issues.
Each setting on EPR is equal to 1 cm....so a setting of 3 will drop the pressure on exhale 3 cm....example...with pressure of 10 on inhale then on exhale it would drop to 7 cm. It can't ever drop below 4 cm though because that is as low as the machine can go so if using 6 cm...with a setting of 3...it still only drops to 4.
It's the first thing we normally suggest to people who are having aerophagia issues. Sometimes it makes a big difference, sometimes it doesn't but it is sure worth a try and since EPR is considered a patient comfort feature it is something that the patient can usually change on their own without DMEs and doctors getting all upset.

Heated hoses are covered by insurance...even Medicare has a HCPCS billing code for a heated hose. Ask your DME for one and see what they say. It would help with the rain out issues a lot. Hose cozies help but they add weight to the hose which drags on the mask and that can be annoying. I did 3 winters with rain out and hose cozies and barrel cozies but the heated hose for the last 2 winters....ahhhh....so much easier and it was nice to not have the added weight pulling on the mask.

If your DME doesn't want to give you a heated hose now because they say insurance won't pay for it...which is a lie but sometimes they just don't want to help....check out EBay as sometimes really good deals can be found on the ClimateLine hoses there.
If money is really tight and DME won't help and let insurance pay....I have a donated ClimateLine you can have providing it doesn't have any holes in it and still works...I haven't checked it out but could do that...just let me know.

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JustTia
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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Mon Jul 28, 2014 4:06 pm

Pugsy wrote:Using EPR ...exhale pressure relief...will drop the pressure during exhale which might help your aerophagia issues.
Each setting on EPR is equal to 1 cm....so a setting of 3 will drop the pressure on exhale 3 cm....example...with pressure of 10 on inhale then on exhale it would drop to 7 cm. It can't ever drop below 4 cm though because that is as low as the machine can go so if using 6 cm...with a setting of 3...it still only drops to 4.
It's the first thing we normally suggest to people who are having aerophagia issues. Sometimes it makes a big difference, sometimes it doesn't but it is sure worth a try and since EPR is considered a patient comfort feature it is something that the patient can usually change on their own without DMEs and doctors getting all upset.

Heated hoses are covered by insurance...even Medicare has a HCPCS billing code for a heated hose. Ask your DME for one and see what they say. It would help with the rain out issues a lot. Hose cozies help but they add weight to the hose which drags on the mask and that can be annoying. I did 3 winters with rain out and hose cozies and barrel cozies but the heated hose for the last 2 winters....ahhhh....so much easier and it was nice to not have the added weight pulling on the mask.

If your DME doesn't want to give you a heated hose now because they say insurance won't pay for it...which is a lie but sometimes they just don't want to help....check out EBay as sometimes really good deals can be found on the ClimateLine hoses there.
If money is really tight and DME won't help and let insurance pay....I have a donated ClimateLine you can have providing it doesn't have any holes in it and still works...I haven't checked it out but could do that...just let me know.
Thank you so much for the offer! I'm going to call the DME and see if it will go through. I've reached my max OOP for the year, so if I can get it through insurance I'd really like to, since it will be free. And maybe you can hang onto your donated one for someone who maybe doesn't have insurance or something.

I'll also change the EPR setting tonight and see if that helps. Thanks!

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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Tue Jul 29, 2014 9:26 am

Update about last night - turned the humidifer back on, set to 1.5, which is my preferred setting comfort-wise. No rainout last night, but that's not all that unusual. It seems to come and go with weather changes. Go figure. I am ordering a climate line. Waiting to see if insurance is going to kick it back or not since it hasn't been long since I got regular hoses. I hope the upgrade gets approved.

I set the EPR at 3 last night, and seemed to sleep just fine. Didn't wake up with much bloat/belching. Again, that isn't all that unusual either as it gets better and worse. I don't know if it's my changed positions during the night or what that triggers aerophagia. But so far, so good. If I go a week without any problems, I'll probably consider that a problem solved.

I also took the advice to rinse my sinuses before bed. That was an interesting experience, lol. I seem a little clearer, and actually daytime breathing even today is clearer/easier. I have never thought of myself as an allergy sufferer or a stuffy-nosed person typically, but I can tell a difference. Wonders never cease.

Thanks for all of your suggestions yesterday. I was feeling really down about all this. Resigned that I had to use it, but also resigned to just never sleeping well again. Maybe it will get better and I can finally sleep comfortably all night.

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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Tue Jul 29, 2014 9:55 am

Oh, and I forgot to mention that my AHI last night, while using the EPR at 3, was .3 this morning. Which pretty much average for me since starting cpap. So, that's good.

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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Tue Jul 29, 2014 3:13 pm

Oh. My. Gosh. I just have to say how much I love Edgepark. I've been using them for a year for my diabetic supplies without a single hiccup along the way. Not one, ever. I'm sure that's unusual for any DME customer to say, and I'm sure that Edgepark has customers who are not happy. It's just the way it goes. But OMG! I switched from Apria to Edgepark for my cpap supplies. Between my insurer (United Health Care) and Edgepark, I'm a happy girl.

Let me tell you how this went - Apria just sent me new hoses and filters not long ago, and it also hasn't been 6 months since I got my last mask. I expected flack for ordering a new FFM (I found out I should wear a small in the mirage quattro, so I ordered it just to have a FFM backup). And, well, insurance just paid for a pair of cheap poses a couple of weeks ago.

So, I logged into Edgepark's site yesterday. I added a Mirage Quattro in small to my cart. Added a climate line hose to my cart. Checked out. Got notification that the mask requires a prescription, so they would need to get that from my doc (who is on file). Just now I got notification that my order had shipped. Climate line, mask, both. Fast service, no charges (I've met my max OOP), no hassle.

So, if any of you would rather order online but are sad to pay out of pocket, see if Edgepark takes your insurance. I'm really, really happy.

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Re: Frustration: aerophagia & pillow rainout

Post by englandsf » Tue Jul 29, 2014 3:28 pm

The rain out seems very odd in July, do you cool your room a lot?

I also found a nasal rinse at night can cause water to lodge in my sinuses and wake me up when it "moves". Maybe try earlier in the day or a few hours before bed? My main rinse is at first light when I also use my nasal spray (Veramyst). My second is mid afternoon or so...

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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Tue Jul 29, 2014 3:35 pm

englandsf wrote:The rain out seems very odd in July, do you cool your room a lot?

I also found a nasal rinse at night can cause water to lodge in my sinuses and wake me up when it "moves". Maybe try earlier in the day or a few hours before bed? My main rinse is at first light when I also use my nasal spray (Veramyst). My second is mid afternoon or so...
The rainout started before the rinsing (first time last night for that). Rainout's been happening for a little over a week. It still never happens in the hose. Only inside the pillows. Sometimes only a drop, which doesn't bother me. Other times so much that it drips into my nostrils and wakes me up. And then other times, when there's nary a drop of liquid anywhere. It seems to not be affected by the humidity level on the machine one iota. The heaviest water happened when I actually had the humidifier turned off. Bizarre. The only constant that I'm seeing is that it tends to happen when it's raining outside (or about to). No joke. Very weird.

Room temp is about 74 F. We have a window unit a/c, and that window is closest to my side of the bed, so I don't know if it's cooler than that. So the room isn't super cold or warm.

I did my nasal rinse last night about an hour and a half before bed. I figure I'll do it after dinner tonight.

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Re: Frustration: aerophagia & pillow rainout

Post by englandsf » Tue Jul 29, 2014 3:38 pm

Very odd. Where the heck is that water coming from?

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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Tue Jul 29, 2014 4:12 pm

From what I understand, it's from my own exhalation. I must be well-hydrated, lol.

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Re: Frustration: aerophagia & pillow rainout

Post by palerider » Tue Jul 29, 2014 5:34 pm

JustTia wrote:From what I understand, it's from my own exhalation. I must be well-hydrated, lol.
a tiny little thunderstorm in front of your nose?

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Re: Frustration: aerophagia & pillow rainout

Post by JustTia » Tue Jul 29, 2014 7:14 pm

Maybe so!

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