CPAPtalk.com

A quick word about using EPR to make your machine function like a bilevel machine.

EPR is Resmed's exhale relief. It's a 1 cm per setting reduction during exhale that makes the bilevel situation.
Bilevel is nothing more than 2 distinct pressures...one for inhale and one for exhale.
Example...pressure setting of 7 like I use...with EPR at the setting of 1 I would have inhale at 7 cm and exhale at 6 cm...setting of 2 would be 7 inhale and exhale at 5 and the setting of 3 would give me 7 inhale and exhale at 4 cm which is as low as the machine will go.
With the AutoSet machines...the most reduction we can get is the 3 cm...with a real bilevel machine we can go with 4 or 5 or 6 reduction or difference between inhale and exhale.

How does this help with aerophagia? Not sure exactly the mechanics but not so much constant pressure pushing on that LES (Lower Esophageal Sphincter) is probably a big factor. It's more comfortable for a lot of people and more comfort often leads to better sleep in general with less arousals which can also cause more air swallowing. So a bunch of stuff sort of intertwined.

We can make use of EPR to get your machine to function like a bilevel functions somewhat. The timing of the reduction is so similar that for all practical purposes it feels about the same. I have tested EPR at 3 and used a bilevel with PS at 3 (pressure support it is called but it's nothing more than the difference between inhale and exhale) and they pretty much feel the same. Very, very minor difference in the timing and I had to really strain to notice the tiny difference.
For this reason using EPR to get some sort of bilevel function is often called a poor man's bilevel. It's not perfect since it is limited to 3 cm max difference but it is better than nothing and is often enough to help reduce the unwanted aerophagia symptoms.

Bigtonguehypopnea wrote: ↑

Thu Jul 12, 2018 6:53 pm

the main problem I'm focused on is how to get the cpap to stop blowing air into my stomach.

Total Arousals: 299
Arousal Index: 46

AHI
4.9

Tough problem.
In your spread sheet data I see that the pressure went up over the years and striking is the max pressure of 24 in 2017 even so the setting is 20. This I cannot explain, maybe someone else can.

Pressure increase can increase aerophagia. Would be nice to see some sleapyhead screen shots with the pressure profile. Reducing the Max Pressure to 15 or 12 maybe worth trying.

I tried a couple of things to reduce my aerophagia. I tried a large non elastic leather belt right over the belly, not too tight, so you can belly breathe normally. This actually worked to some extent except that I move to much and the belt moves too. I tried a corset, which did not work at all, too elastic even when tight. Sleeping with the head at a different angle did not work for me. The best was to reduce the max pressure and finding a compromise.

As to the bigger picture it is not going to be easy... hang in, trust some gut feelings, one step ... and good luck

zoocrewphoto wrote: ↑

Fri Jul 13, 2018 1:05 am

Acid reflux. I still have some during the day, but the night time events were horrible before cpap. I would wake up choking, gagging, often to the point of vomiting. I didn't learn until I started cpap that sometimes it is the result of sleep apnea. Basically, as your throat closes, and you gasp for air, you create a vacuum that eventually brings up the acid. I have never had a choking, gagging episode while using cpap.

This is interesting !!! I never thought to use my sleep apnea talent to have acid reflux

Pugsy wrote: ↑

Fri Jul 13, 2018 9:30 am

Your meds have some side effect potentially that could also be a factor. How much of a factor or even if a factor is unknown but the potential is there. Especially the Wellbutrin....google "SSRIs and sleep".

I'm pretty positive that Wellbutrin isn't an SSRI. I have not done well on SSRIs.

Pugsy wrote: ↑

Fri Jul 13, 2018 9:30 am

See if you can get me one good detailed report off the machine that last week you used it 7 months ago.

Here is a detailed report from the last day I used the machine:
Below is an image that shows something very interesting. Something changed dramatically a month before I stopped using it. I looked at the long term view going back to Aug 2016, and this kind of pattern had never happened before. Pressure went way up, and interestingly the machine started keeping new lines of data that it never registered before. This change seems like THE big clue, since I had used the CPAP successfully for 9 years and then struggled and gave up the last month I used it. I do have some old medical records that show that I complained about air in my stomach in July of 2017, so I know that problem had begun before Nov 2017. But it became unbearable then.

IRREGULAR SLEEP SCHEDULE: When I keep a sleep journal, I see that by far the biggest challenge in keeping a regular sleep schedule is gastro-intestinal pain that I can't sleep through. And of course, an irregular sleep schedule is no good.

My heart goes out to you with all the problems you are juggling. At another time, I experienced many of your concerns, so I can relate.

I was wondering .... you don't mention taking a PPI (proton pump inhibitor) like Pantoloc. It is a once a day pill taken 40 minutes before your 1st meal. But it seems to me that with all your gastro-intestinal pain, that is something that should be looked at.

Have you had an upper GI endoscopy done?

Depending on what the gastroenterologist sees, there may be solutions to your pain. It seems wrong and unnecessary that you should be having so much pain. It sucks the fun out of life.

esel wrote: ↑

Fri Jul 13, 2018 10:01 am

In your spread sheet data I see that the pressure went up over the years and striking is the max pressure of 24 in 2017 even so the setting is 20. This I cannot explain, maybe someone else can.

Very observant! I'm honored by your attention to my details. That is strange, isn't it. I double checked the data and it is not a typo.

Cpapian wrote: ↑

Fri Jul 13, 2018 11:51 am

My heart goes out to you with all the problems you are juggling. At another time, I experienced many of your concerns, so I can relate.

I was wondering .... you don't mention taking a PPI (proton pump inhibitor) like Pantoloc. It is a once a day pill taken 40 minutes before your 1st meal. But it seems to me that with all your gastro-intestinal pain, that is something that should be looked at.

Have you had an upper GI endoscopy done?

Depending on what the gastroenterologist sees, there may be solutions to your pain. It seems wrong and unnecessary that you should be having so much pain. It sucks the fun out of life.

Thank you very much.

MY REFLUX

I have had an upper GI endoscopy, in 2012. They found a hiatal hernia and some general inflammation.

I take pantoprizole, which is a PPI. I don't remember being instructed to take it before meals. I just take with my other morning pills, AFTER I eat, because some of them must be taken with food. I'm pretty abysmal at taking meds on a regular schedule. I guess I'd better get better at it! I will try taking it 40 minutes before my first meal. Thanks for the tip.

I also take Famotindine at a dose higher than over the counter. One doc told me to take it before dinner and so far I've only remembered to take it with my other bed-time pills. I guess I have some serious focusing to do if I want to get better. Luckily, I have no other responsibilities, so I can do this. (That was a positive affirmation. I can do this!)

My last GI doc said we could still double the doses of both of these meds. I'm afraid of that, but I'm more afraid of dying of esophageal bleeding like my housemate did. I've had this going on a LONG TIME, mistaking it for mental health issues. I was actually diagnosed with reflux a few times over the years but refused the medication, because I was raised anti-western medicine and thought I would just change my diet and stop over-eating. Easier said than done. So I kind of screwed myself over. I'm still afraid of upping my meds because it seems to be getting worse with time (aka, the longer I'm on the meds). I'm caught between the mainstream view (too much acid is the cause) and the natural-health view (too little acid is the cause, which is counter-intuitive but makes more sense to me). But so far in my life, every time I've finally acquiesced to western medicine, I've been better off. This is primarily because I'm not up to doing the labor-intensive natural ways, much to my mother's chagrin. So I'm torn.

COMPETING REFLUX PHILOSOPHIES

Right now I'm working with two reflux relief books. One is by an ENT. It's called "Dropping Acid". She says that when the contents of the stomach come back up, the digestive enzyme Pepsin comes with it. It attaches to the walls of the esophagus. It is activated by acid, whether it is from another reflux episode, or acid from food you eat. It will stay there for a while, so you might feel better but then eat an orange and have it burn right away. She recommends a strict diet of low acidic foods. I'm going to do that for a while, to heal my esophagus.

The other book I'm working with takes an opposite, but equally valid view. It's by a nutritionist. He's more focused on what happens lower down in the digestive tract. He's in the school of thought that says that when you don't have enough stomach acid, you don't digest your food well. It ferments and causes expanding gasses in your stomach, which push stomach contents through the sphincter back into the esophagus. He recommends lots of acidic foods like properly fermented foods. He also goes against mainstream ideas about reflux by recommending lots of fat, but only in the form of grass fed animal products, bone broths, and raw milk. He also advocates sprouted grains to reduce their natural digestive enzyme inhibitors. This paradigm is based on the work of Weston Price and popularized by Sally Fallon in "Nourishing Traditions". My attachment to this philosophy comes from seeing my Mom save herself from very serious digestive problems. She was a vegetarian for 25 years, and therefore ate a lot of grain without knowing about soaking and sprouting it to remove digestive enzyme inhibitors. She also ate very low fat, which causes all sorts of problems. All the studies on fat seem to be based on conventionally raised and pasteurized animal products. This nutrition philosophy is held by my extended family, and by many former raw vegan gurus. (I feel great on a raw vegan diet, but those who do it long term often convert to the "High Quality Traditional Real Foods" diet.

Wellbutrin has a known side effect of causing people to have trouble sleeping.
In that regard is what I meant in terms of the SSRI thing.
Mainly seems to be the trouble staying asleep so even if not classified as SSRI or SSNI or whatever...the side effect of messing with sleep is a known issue. Now it may or may not be part of your particular issue but sleep lab techs cringe when Wellbutrin is mentioned.
Just tossing that out as a potential factor...not saying it is for sure but it could be a factor. Even if it was for a factor I doubt it is the only factor.

I have first hand experience with Wellbutrin...it does cause fragmented sleep from sleep maintenance insomnia arousals. For some people a significant issue...for others maybe not so much.

It would be nice if we knew what changed to cause the higher pressure needs because higher pressures go hand in hand with the level of problem the aerophagia can cause. No way to really know though..it is interesting to see some sort of obvious change though.

On that last report...EPR was off...so no EPR at all.
The highest the machine went to was just short of 15 but the bulk of the night was below 12ish.
Flow limitation graph is fairly active or busy for lack of a better term...it's probably the driving force behind the pressure changes.
Here's what a non active boring FL graph looks like.


but I have seen FL graphs much worse than yours.

FLs are part of what the auto adjusting algorithm will try to prevent with more pressure. Sometimes the more pressure causes more problems than the FLs are causing.

If it were me I would consider several options and then decide on what to try...adding in EPR obviously the first thing I would do..and set it to 3. I would probably keep the minimum at 5 or 6 or maybe even 7 since the AHI is low and set the max to maybe around 14...see what happens. Maybe with more minimum the pressure won't need to go so high...and maybe with adding in exhale relief when it does go up maybe not so high and not so long.

I like to keep the number of changes I make to a minimum whenever possible because it gives a person a better chance to evaluate whatever changes were made. If we make a lot of changes then we don't know which change gave us what result.

So in this situation...EPR being added in is the first major change and I would probably keep the minimum at 5 and maybe limit the max more aggressively just as a precaution. Just because a machine wants to go higher to kill FLs doesn't mean that it's a critical need that the machine go higher to kill FLs.
I tend to start off ultra conservatively and work up as needed..
you can decide what you want to do but if it were me and I was having the aerophagia issues and a report like you are showing...the FLs would go on the back burner for now.

Minimum of 5
EPR at 3 full time
Max of 12

The idea is to first get decent sleep and keep the aerophagia monster away at the same time.

Pugsy wrote: ↑

Fri Jul 13, 2018 1:14 pm

Wellbutrin has a known side effect of causing people to have trouble sleeping.
In that regard is what I meant in terms of the SSRI thing.
Mainly seems to be the trouble staying asleep so even if not classified as SSRI or SSNI or whatever...the side effect of messing with sleep is a known issue. Now it may or may not be part of your particular issue but sleep lab techs cringe when Wellbutrin is mentioned.
Just tossing that out as a potential factor...not saying it is for sure but it could be a factor.

Wow, that's a bummer. But good to know.

Pugsy wrote: ↑

Fri Jul 13, 2018 1:14 pm

It would be nice if we knew what changed to cause the higher pressure needs because higher pressures go hand in hand with the level of problem the aerophagia can cause. No way to really know though..it is interesting to see some sort of obvious change though.

I do remember at some point letting my husband use my apap for a night, and then noticing that from that night on the pressure seemed a lot higher. I don't remember when this was or if I ever decided that I had resolved it. Can the machine "learn" and anticipate different pressure needs?

Pugsy wrote: ↑

Fri Jul 13, 2018 1:14 pm

Minimum of 5
EPR at 3 full time
Max of 12

Thanks for all your suggestions! I will try them.
Thanks also for the links you found for me about aerophagia. I read them all and learned a lot. I never really thought of it as "swallowing air". I thought the air was just pushing through the sphincter. If we swallow air, it makes sense that we should not spend a lot of time half-awake with the mask on. This is a good reason to follow recommendations to consolidate sleep into fewer, higher quality hours. Also, any kind of oral appliance or cough drop would make you swallow more.

I probably won't try to get back on the cpap immediately. My reflux is so over-the-top right now, I dare not. But I will focus on getting that under control, and improving my sleep schedule as a way of improving the efficacy of the cpap. In the mean time, I'll look over the manual and change the settings as you recommend. Thank you so much for your time!

BTH re your reflux there are GERD forums online (not anywhere as good as this forum) but they have their moments. .... that is where I heard about the 40 minutes before eating. According to the doctor/author the drug needs to be in the intestines to do its job at full throttle. I will try and find the document later.

The too much acid/not enough acid is like a teater totter. A solution given to me was digestive enzymes before each meal. This avoids the acid question altogether and did help a lot. Before taking them, I had difficulty sleeping hours after eating due to undigested food, which of course contributed to my insomnia.

Last year, I tapered off my PPI and replaced it with Zantac. It didn't work, but strangely when I went back on the PPI it was way more effective. But that was the same time I was starting XPAP. So I don't know what was responsible for the improvement. Now, I feel effectively treated. Which is really nice. Before, I could hardly eat anything and I was loosing the ability to eat certain foods frequently, old standbys that I depended on.

Another thing you might try is probiotics. Good ones are expensive, but sometimes they do help, particularly since you are not physically active right now.

My GI doctor gave me a list of things to avoid or do. Let me know if you would like it.

Bigtonguehypopnea wrote: ↑

Fri Jul 13, 2018 1:45 pm

Can the machine "learn" and anticipate different pressure needs?

Nope...it has a really short memory...turn it off and it doesn't remember a thing from even 5 seconds before.

Oh...that 24 reported max pressure number when we know your machine can only go to 20. I have seen that on occasion with other machines. Makes no logical sense and we don't know why it happens. I suspect a data point glitch of some sort but we never could figure out a potential cause and effect and it doesn't happen often enough to be able to establish any sort of pattern to look for a reason. So I don't doubt that it was reported as such...I just can't explain why it got reported that way when the machine can't go that high. These machines aren't perfect and they never were really designed for up close under the microscope evaluations. They were designed to help establish general trends and patterns over many, many nights of therapy. Sometimes we expect more from the machines than they were ever designed to deliver. Little oddities would simply be ignored when looking at trends and patterns.

Good luck to you. I don't know if the changes proposed will help with the aerophagia issues or not and I don't know how much of your poor sleep quality is related to the aerophagia itself. So much we don't know but it's worth trying something new to see if it helps or not. I also don't know just how important those flow limitations are in terms of your sleep quality. They are important enough to be a factor in the auto adjusting algorithm and important enough that these machines will document them...so they are important but just how much they might relate to sleep quality or arousals...we don't know.
Heck, for all we know maybe they were related to some sort of allergy like issue that happened back then.
The machine doesn't know if nasal mucosa related or lower farther down the airway related. If nasal congestion related more pressure can't usually fix nasal congestion like that no matter how much it might want to try but the more pressure it might want to use can sure feed the aerophagia monster.

Cpapian wrote: ↑

Fri Jul 13, 2018 2:04 pm

My GI doctor gave me a list of things to avoid or do. Let me know if you would like it.

That would be great. I haven't found a GI doc with whom I communicate well. It's good to hear that you got better.

Pugsy wrote: ↑

Fri Jul 13, 2018 2:13 pm

The machine doesn't know if nasal mucosa related or lower farther down the airway related. If nasal congestion related more pressure can't usually fix nasal congestion like that no matter how much it might want to try but the more pressure it might want to use can sure feed the aerophagia monster.

I'm glad you brought this up. The cpap seems to cause my nasal congestion. When I take the time to notice, I'm always a little congested. Not enough that the ENT was worried about it. There is a thread on here that I've lost now where a doctor talks about how taking clariton at night, doing nasal irrigation, and sleeping in "the swastika position" (or "Falcon Position") were so effective that he got off the CPAP. I'm going to try that.

Bigtonguehypopnea wrote: ↑

Fri Jul 13, 2018 2:35 pm

Cpapian wrote: ↑

Fri Jul 13, 2018 2:04 pm

My GI doctor gave me a list of things to avoid or do. Let me know if you would like it.

That would be great. I haven't found a GI doc with whom I communicate well. It's good to hear that you got better.

It's not a long list and you probably know all this. She did say, the more you do, the better. I never tilted the bed. I was afraid it might weaken the furniture and come crashing down one night. Some of these raise more questions. Like spicy food ..... cayenne pepper, I get that, but cinnamon is a spicy, so is it bad? I don't know. No orange juice ..... are oranges okay or not. When I looked on the internet for low acid foods I couldn't find any consistency.

GERD lifestyle changes

No
Chocolate
Caffeine
Smoking
Spicy food
Acidic food (citrus juices, tomatoes)
Peppermint
Decreased fat (fried food, oils, high fat milk products)

Eating guidelines
Eat smaller meals but more frequently (up to 5x /day)
Do not eat before bed or lie down after eating
Loose weight

Other
Elevate head of bed about 6 inches (tilt whole bed, not just raising your head with pillows)

I found cutting up food really small and chewing a lot helped me also. And a lot of vegetables. We probably eat at least three servings of vegetables at dinner now. And walking helps a lot, if you can manage any. Walking helps digestion and bloating. When you have a good day, try walking around the home a bit, not to much to overtire yourself. Just a bit if you can.

O! Ya. Avoiding restaurants is another biggy for me. Fast food or otherwise. We do go out, but I try to limit it and space it out.

For my PPI, one time I was given a generic and it didn't seem effective. Often the generic providers don't have good quality controls. If you find the name brand out of your reach, maybe get a recommendation for a better generic provider. Check and see what country your pills are manufactured in. See if someone manufacturers in a different country.

Another common reason for bloating and gas could be lactose intolerance. I don't know much about it.

Cpapian wrote: ↑

Fri Jul 13, 2018 4:08 pm

It's not a long list and you probably know all this.

There was some new stuff in there! Plus it's good to be reminded when you're highly motivated. Thank you so much.

Bigtonguehypopnea wrote: ↑

Fri Jul 13, 2018 4:14 pm

Cpapian wrote: ↑

Fri Jul 13, 2018 4:08 pm

It's not a long list and you probably know all this.

There was some new stuff in there! Plus it's good to be reminded when you're highly motivated. Thank you so much.

you mentioned taking time of of cpap to take care of something else. all to the well and good, but when you get back on it and try the changes mentioned here, could you report back here on this thread?

it'll make it easier for the people helping you to keep track of things.

good luck!