SEVERE Aerophagia - new user again

Long story short, I was diagnosed in 2012 with severe OSA (AHI 60) and was prescribed a pressure of 15 and was never able to handle that high of a pressure. I successfully used CPAP for almost 2 years until the aerophagia set in. (I had lost a significant amount of weight so I assume that was the issue) At the time I was also in a new relationship so fighting with this was not high on my priority list at the time. Slowly over the last few years my OSA symptoms have come back (headaches, tired, sore throat, depression etc) I was unsuccessful at getting CPAP to work again by playing with the pressure on my own (bad, bad aerophagia with severe pain lasting for hours), so I went for another sleep study. This time my OSA was 47. I was prescribed an Auto Bi-Pap (Respironics Dream Station) at the bottom pressure is set at 8 and the top at 20 (while I await my titration).

The first two days on the bi-pap were good and I was really happy with the dreamwear nasal mask. The 90% inhale pressure showed 15 the first night and 16 the second night. The 90% exhale pressure was around 10. AHI was 6.1 both nights. Last night, I thought I was going to die, I'm not even sure how to explain how scary it was. I woke up after about 2 hours on the machine with pain and bloating, this quickly turned into severe cramps. Without getting into the gross details...I spent a long time in the washroom in agony throwing up nothing (not even air coming out). I was shaking, and sweat was dripping down my face the cramps were so bad...I remember waking up on the bathroom floor about 2 hours later and crawling into bed. I was terrified that my stomach or intestines were being damaged the pain was so bad.

I called my doctor this morning and they told me to try one more night with a full face mask so I'm going to give it a shot tonight. I'm going for my titration on Tuesday. Does anyone have experience with this bad of aerophagia and been able to overcome? I want so bad for my therapy to work so I can get my life back but I can't deal with this Is there any hope?

PS I don't ever get heartburn or anything so I don't think GERD is an issue.

Yes, there is hope but it's going to take some time and work to find a workable compromise between the pressures you need to control the OSA and not trigger the aerophagia issues.
Having the machine open to be able to go to the higher limits is going to leave the door wide open for the aerophagia issues to run rampant.

The bilevel (BiPap) machine offers the greatest chance of coming to a workable compromise but will take some experimentation with the pressure settings to get it dialed in.

The titration sleep study will likely help with dialing in for the therapeutic pressure needs in terms of OSA control but it may not be ideal for figuring out where the line might be for triggering aerophagia issues. Sometimes there's a fine line between where aerophagia raises it's ugly head and where it stays more manageable.

Without seeing your reports from your 2 nights on the BiPap there's no way of really having much of an idea where to start.
The 90% numbers don't really tell us all that much because of the definition of 90% numbers which is "at or below" that pressure. We don't know how much lower the "or below" part of the definition might be.

If it were me and I was having similar severe aerophagia issues I would start with very modest settings and see if lower settings offered aerophaghia relief and then see how it does for the OSA control.
Also when evaluating AHI it is real important to know the event category breakdown of that AHI.
Is it primarily clear airway/central or obstructive in nature (OA/hyponeas)?
You need to be using the software available to know exactly what is happening along with when it is happening.
https://sleep.tnet.com/equipment

If it were me I would start with these settings and work from there.
Auto bilevel mode.
Min EPAP ....8
Max IPAP....14
PS Min 2 and PS max of 4
Primary goal at first is find a pressure that doesn't tear the belly up so much...and then see if more pressure is needed in some form for better OSA control.

If you AHI is primarily Clear airway/central....we don't treat it with more pressure anyway.
So that's why we need to know what that AHI is made up of.

I would keep my mouth somewhat open to let some trapped air go out from my stomach to the atmosphere, even if this mouth leak affects somewhat the CPAP’s proper treatment.

Thank you for your reply, knowing there is hope helps My AHI is all OSA - I had no Centrals during my study. I will try to get the software up and running tonight.

Thanks!

If you spend much time awake or semi awake wearing the mask and using the machine it wouldn't be impossible for some of that AHI to be "central" flags that really aren't centrals. That's why we look at what the AHI is made up of and when the flagging occurs.
Meaning sometimes the AHI is elevated by "awake/semi awake" event flags that make us think that the pressure isn't sufficient but it really is. I don't know that is what might be going on in your case but we need to try to figure out what the machine is doing and why...then try to find a suitable compromise.

I have seen some really high AHI numbers scaring the daylights out of someone and it was all awake breathing getting flagged by mistake.
Again...don't know that is what is going on in your case but needs to be ruled out before we start worrying about increasing the pressures since increasing the pressure causes you such a significant problem.

These machines can't tell if you are awake or asleep. They just measure air flow and sometimes awake/semi awake breathing irregularities can cause what first might appear to be sub optimal therapy and in reality it's just awake breathing confusing the machine.
If you have large clusters of events right near a known awake time there's a real good chance they aren't real but they can make the AHI look scary.

We have a forum member here (RobySue) who has severe aerophagia issues and she ended up having to use a really tight bilevel range to deal with her OSA and still keep the aerophagia issues under control. It can be done but takes some work figuring out what is needed and what can be allowed to slip past the defenses.
Example...should it be determined that pressure settings of say 8 min EPAP and 12 max IPAP gives you an AHI of 6 (primarily obstructive)...but to increase it any more causes bad aerophagia then we compromise because 6 is still better than 30 something per hour without cpap.
Gotta start with knowing for sure what we are fighting though...and that's where the software comes in to help with figuring out what that AHI is made up of.
If your AHI is 6....but half of it is clear airway/centrals from maybe awake breathing...then maybe we can reduce the pressures a bit and not sacrifice OSA therapy too much.

We start with trying to find a pressure that doesn't cause the belly issues...and go from there....either up or down depending on how the belly responds and what the OSA therapy shows. We ignore the clear airway/centrals unless they are present in large numbers during times we know we are asleep.

Wanted to give a quick update - I did end up in the Emergency Room following my nightmare night with some medical issues resulting from the vomiting - no need for details but I did do some damage and am still paying the price...

My sleep specialist sent me for a titration to see if they could discover a solution to my issues with swallowing air and even during the study I had issues. I was called in to see the doctor the following afternoon and he said that he has never, in 20 years seen someone with the issues I'm having.

The plan going forward now is as follows. (I'm trying to trust the doctor but I'm leery of the plan)

1. Stop bi-pap

2. He's prescribed Gabapentin to me for sleep (and I was surprised when I picked up the prescription to be told it is for nerve pain and not primarily for sleep). I'm supposed to take 300mg per night for a week and then increase to 600mg after a week and can go as high as 900mg. The goal is to see if sleeping through the night will help me feel more rested during the day. Of course my issue is that this is not addressing the OSA at all and may make it worse.

3. Once I find a level of Gabapentin that helps me feel more rested - restart CPAP again at 6cmH20 and then try to slowly increase the pressure to a tolerable level.

4. I need to do an at home test with an oximeter in 4 weeks (with the plan that I'll be back on CPAP by then) to see what my levels are like (currently drops to about 83%).

So...not sure I agree with this approach but at the same time, the air swallowing is something I can't live with either.

thanks for all of your support

SleepyCanuk wrote:Wanted to give a quick update - I did end up in the Emergency Room following my nightmare night with some medical issues resulting from the vomiting - no need for details but I did do some damage and am still paying the price...

My sleep specialist sent me for a titration to see if they could discover a solution to my issues with swallowing air and even during the study I had issues. I was called in to see the doctor the following afternoon and he said that he has never, in 20 years seen someone with the issues I'm having.

The plan going forward now is as follows. (I'm trying to trust the doctor but I'm leery of the plan)

1. Stop bi-pap

2. He's prescribed Gabapentin to me for sleep (and I was surprised when I picked up the prescription to be told it is for nerve pain and not primarily for sleep). I'm supposed to take 300mg per night for a week and then increase to 600mg after a week and can go as high as 900mg. The goal is to see if sleeping through the night will help me feel more rested during the day. Of course my issue is that this is not addressing the OSA at all and may make it worse.

3. Once I find a level of Gabapentin that helps me feel more rested - restart CPAP again at 6cmH20 and then try to slowly increase the pressure to a tolerable level.

4. I need to do an at home test with an oximeter in 4 weeks (with the plan that I'll be back on CPAP by then) to see what my levels are like (currently drops to about 83%).

So...not sure I agree with this approach but at the same time, the air swallowing is something I can't live with either.

thanks for all of your support

What don't you agree with and why? What would you rather do?

It's a workable plan.
When you go back on the bipap and start at 6 cm...make sure the machine can't go very high...don't leave it wide open or else it will likely cause more aerophagia issues.
Start with a low small range and evaluate the results with the software that is available.
Maybe you won't need as much as originally thought.

Thanks for updating...I was worried about you since I hadn't heard from you.

The Gabapentin is sometimes used for sleep issues and the usual dosage is like you were prescribed...start a bit lower and then increase.
It isn't a medication that is known to seriously impact the airway tissues in terms of making them more floppy or making OSA worse...at least not like some other medications tend to do (like muscle relaxers or opiods).

I guess I'm leery because of the medication...I don't really like the idea of taking a daily medication, but I'll give things a go and see. So far the single pill manages to get me loopy but doesn't keep me asleep for the night.

Pugsy, the doctor wants me to go onto CPAP again, not bi-pap. I've had to return my auto bipap machine and will just used my Cpap machine when I try to go back on.

thanks again for your support, it is so appreciated

SleepyCanuk wrote:Pugsy, the doctor wants me to go onto CPAP again, not bi-pap. I've had to return my auto bipap machine and will just used my Cpap machine when I try to go back on.

Bummer. I don't know why doctor's do this. A person can adjust the settings to make it function like an apap and it already has cpap mode available. Did insurance already okay it or was it just a trial experiment?. I can't understand why doctors are so dead set against using bilevel.
Especially with someone who has a history like you do. The difference between inhale and exhale can be a potential deal breaker in the war against aerophagia so it is beyond my comprehension as to why doctors won't at least keep that option on the back burner.

I don't remember which cpap machine you have but same advice about restricting the maximum still applies if using auto adjusting mode. Start modest and work up as needed (easy to spot the need on the software reports) depending on what the AHI shows and how your belly feels.

I understand about not wanting to take anymore pills than is REALLY needed but it's worth trying and you can always discuss cutting back or eliminating the medication at a later date....doesn't necessarily mean that you will be on them forever.

lol actually, I still have the prescription for the bi-pap. maybe I should just fill it and use it on cpap mode for now. It will give me the option of bi-pap and auto for the future...

I might just do that...

I'll keep you posted on my progress.

I don't have aerophagia but after 6 yrs of straight CPAP I tried APAP for 1 week before resetting the new machine to CPAP. I do take gabapentin 3 times a day for neuropathy which was erroneously diagnosed as carpel tunnel syndrome, I would wake up at night with numbness equally in both hands. Gab has many uses the most common is nerve damage due to diabetes. It is near impossible to self diagnose with out good software. You will be surprised of what is happening.