bother trying PaP again after aerophagia failures w/ LPR?

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johnspartan
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bother trying PaP again after aerophagia failures w/ LPR?

Post by johnspartan » Mon Aug 31, 2020 12:51 pm

Hello CpapTalkers. I'm not sure this is the right forum to ask about this but I am nearly out of options and feel like I have spoken to nearly everybody. I guess next stop may be surgery if I can think straight enough to figure that out. Please excuse the length of my history.

My sleep doctor wants me to try to give some kind of Pap another go because sleep disturbances are killing me. (My words, not his). Notes from my last sleep study about 3 months ago:

"3. SLEEP-RELATED BREATHING:
The patient's results were consistent with mild obstructive sleep apnea (OSA). This was in the form of apneic
and hypopneic episodes, as well as respiratory-effort-related arousals (RERAs). This resulted in an Apnea
Hypopnea Index (AHI) of 5.4 episodes per hour. Mild OSA is defined by the American Academy of Sleep
Medicine (AASM) by an AHI between 5-15 events per hour. The Respiratory Disturbance Index (RDI), which
includes RERAs as well as apneas and hypopneas, was 7.4. The patient's oxygen saturation nadir was 86%.
Esophageal manometry (Pes) was utilized to detect more subtle sleep-disordered breathing events. The
patient's baseline Pes was -4 cm H2O with a maximum Pes pull of - 12 cm H2O. Pes measures the difference
between inspiratory and expiratory intrathoracic pressure. Greater negative pressures indicate increased
respiratory effort to compensate for upper airway insufficiency during sleep.

I first started having the disturbances in 2008 with onset of silent reflux, right after a flu episode. Literally had a cold/flu thing, when it was gone, had massive stomach bloating which has never abated. The true LPR symptoms besides the bloating (throat clearing/excessive mucus) didn't begin until 2016.

Previously tried various Pap machines about 7 years ago, when I didn't feel nearly this bad, with various masks, hoses, pressures, but gave up after several months due to severe aerophagia. I don't think I will have much better luck this time but people tell me that while the principle is the same, perhaps improvements in tech and the provider will be better able to help me this time around. Since then I have survived for periods of time either by fluke, or sleep medications. Currently not on any sleep med regularly because the only one that works well is a benzo and seems to lose efficacy after only one night.

I already knew going into the first Pap trial I had IBS (which seems controlled) and the 24/7 bloated stomach, but had to try. It appears I now also have autoimmune gastritis as confirmed by biopsy. There are no known treatments for that. I've tried pretty much every lifestyle & holistic treatment you can think of to help with stomach bloat (when I could still do them, tai chi, yoga, massage, acupuncture), no drugs have done anything to help in any quantity with that or the silent reflux. Seen many docs, including Dr. Jamie Koufman, followed her drug regimen for 8 months - no effect. Modifying my diet has kept me alive, but not really improved, even being ultra vigilant about it. Tried other popular diets as well, and incorporating some of their mechanics has helped but I'm still slowly petering out.

Been tested many many times for h.pylori (nothing), SIbo. Nothing. Nearly every probiotic in every quantity has had no positive effect. Been to Mayo Clinic and recently began consulting Cleveland Clinic. Had gallbladder removed in 2013 - no effect.

Had the Stretta procedure in 2017, no effect. At this point it seems I'm only left with the anti-reflux surgeries, but the data always seems to be mixed on surgery and LPR. I know there's the Nissen, which tends to help people with regular GERD more, like the other procedures, and there's a half-Nissen, and the Linx, which I've also heard mixed things about. Docs in various corners say "the bloating will eventually resolve if you fix the reflux" and other docs say "the bloating will get severely worse if you do a Nissen" (which I can't even imagine at this point).

I am nearly at my wits end. Sleep has been getting progressively worse as the silent reflux symptoms have increased to affect all night sleep, not just the early morning hours when it would happen before. Depending which doc you talk to, they will tell you its chicken-or-the-egg - did the sleep apnea begin and cause the LPR, or vice versa? They don't know; I'm sure they are both just snowballing each other at this point, but personally I think the reflux came first, and nobody really knows how to fix it if the problem is truly vagus nerve damage as Dr. Koufman said.

Thanks for any input you may have, and I hope you are all doing much better than I feel.

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Pugsy
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by Pugsy » Mon Aug 31, 2020 1:56 pm

Has anyone mentioned UARS Upper Airway Resistance Syndrome?

When you tried various machines 7 years ago do you know or remember if you ever tried a bipap/bilevel machine?

https://www.atsjournals.org/doi/full/10 ... .2.9901026

I can't figure out if negative 4 to negative 12 qualifies for UARS or not. They don't make it easy to figure out and my eyes have glazed over reading various research documents.

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johnspartan
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by johnspartan » Tue Sep 01, 2020 9:50 am

Thanks for your reply. Yes, a few people have mentioned UARS. Still, it's been an ongoing fight and the silent reflux keeps getting worse, so that may need taking care of first.

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Miss Emerita
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by Miss Emerita » Tue Sep 01, 2020 2:52 pm

What a constellation of GI problems -- and you've been to leading diagnostic/treatment centers without a clear picture of what to do. I'm so sorry.

A couple of quick questions:

Have you had an upper GI endoscopy to confirm silent reflux? My doctor was convinced I had it and finally ordered an endoscopy. Completely normal esophagus, zero evidence of reflux.

Has a doctor suggested that the autoimmune gastritis may be affecting your ability to take up B12, with resulting liability to anemia? See this, for example:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5065578/

And for what it's worth, in another NIH funded paper, I spotted this: "In the study by Soykan et al,[12] 46.7% of AG patients present abdominal symptoms, mainly characterized by abdominal bloating and pain, with a minor part complained of upper symptoms such as nausea and belching." So it is possible the autoimmune gastritis plays a role in your experience of bloating. Of course, you'd want to talk with your doctor about this, rather than just read the results of a random person's googling!

Do you have the opportunity to trial a bi-level machine, as mentioned by Pugsy? Ultimately you're not going to know unless you try whether you'd get positive results for the sleep disordered breathing that would outweigh negative results for aerophagia. It'd sure be nice if you could just give it a try for a month or two.
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Julie
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by Julie » Tue Sep 01, 2020 3:53 pm

So many people get aerophagia either when raising min. pressure a bit, or if they're already at a higher one. And so often the fix is simply to lower the pressure by 1-2 cms, usually not enough to jeopardize therapy otherwise... have you tried that?

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zonker
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by zonker » Tue Sep 01, 2020 5:16 pm

johnspartan wrote:
Tue Sep 01, 2020 9:50 am
Thanks for your reply. Yes, a few people have mentioned UARS. Still, it's been an ongoing fight and the silent reflux keeps getting worse, so that may need taking care of first.
welcome to the zoo!

you answer one of pugsy's questions. but you missed this-

"When you tried various machines 7 years ago do you know or remember if you ever tried a bipap/bilevel machine?"
people say i'm self absorbed.
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johnspartan
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by johnspartan » Tue Sep 01, 2020 7:29 pm

Thank you all for your input. : )
you answer one of pugsy's questions. but you missed this-

"When you tried various machines 7 years ago do you know or remember if you ever tried a bipap/bilevel machine?"
Yes, indeed I did. I was on cpap first, then bipap of some kind, then apap (auto?pap). They adjusted pressures several times, which all seemed to result in the same effect. I am far worse now sleep wise and LPR-wise than I was back then, though. : /
"Have you had an upper GI endoscopy to confirm silent reflux? My doctor was convinced I had it and finally ordered an endoscopy. Completely normal esophagus, zero evidence of reflux.

Has a doctor suggested that the autoimmune gastritis may be affecting your ability to take up B12, with resulting liability to anemia?
I seem to get serum b12 up no problem with oral supplements. Getting ferritin to raise works if I take enough oral iron, though supplements I can handle are few. Prevailing theory is that this is due to my Hashimoto's (have had it for ages, well managed), and IBS/gut absorption.

I have had several EGD's in the last 10 years. They seem to keep showing slowly worsening irritated esophagus but no Barrett's yet, and irritated stomach that indicates AIG based on biopsy and anti-parietal cell antibodies, but no other markers yet. One of the EGD's was done by Dr. Jamie Koufman, who is sort of considered one of the world experts on (and supposedly coined the term) "silent reflux / LPR". She has spent the bulk of her career trying to prove to people that LPR is even a thing.

I have also had a number of ph studies that show refluxing, including the Bravo, ResTech, and Dr. Koufman's preferred double ph probe, which shows the reflux events seem to be the worst at night when i am sleeping the most poorly (usually towards 2am+).

I think I also forgot to mention I tried dental appliances. The most expensive one (had to be $1200?), the SUAD, did seem like it was helping and I adapted quickly, but it also started very quickly to mess with my jaw so I had to stop unless I wanted to live with a huge underbite. Most recently I started looking into

https://aomtinfo.org/myofunctional-therapy/

but it's a big time commitment and there are only a few clinical studies, I think, showing that it can improve AHI in mild-to-moderate apnea candidates.

Hence, looking at Pap treatments again.

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Julie
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by Julie » Tue Sep 01, 2020 8:13 pm

Good luck with it, but remember it's not going to cure basic anatomy. :(

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Miss Emerita
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by Miss Emerita » Wed Sep 02, 2020 9:32 am

Johnspartan, I'm glad you're getting good follow-up on the medical front, though sorry nothing can just fix the problems. I do hope you get a chance to trial a bi-level machine, so you can weigh the pros and cons.

I would especially recommend the ResMed VAuto Aircurve. If you try it, I know there are plenty of people here who would be happy to try to help you find optimal settings, especially if you could use the Oscar software.

If you can't get an Aircurve trial via your doctor + insurance, you might consider getting a prescription and then self-funding a lightly used machine. They come available from time to time at Second Wind CPAP, EBay, or Craig's List. Forum member LSAT also sometimes has one to offer for sale. (That's how I got mine.) You could send him a pm.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by Okie bipap » Wed Sep 02, 2020 9:52 am

Another possible source of a lightly used machine is Facebook marketplace. I found my back up machine on marketplace.

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asm44
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by asm44 » Sun Apr 03, 2022 7:29 am

Did you ever progress on this problem?

I too have LPR for nearly a decade. I've done two 24 hour ph-studies of my throat, showing severe reflux in my sleep. I have mild reflux throughout the day which eating has 0 impact on. Really, the big problems only occur when I'm sleeping. I think the inflammation from the reflux in my sleep may be causing the mild daytime reflux, but this all started without a sore throat every morning before my symptoms progressed.

I tried APAP which I cannot tolerate at all. It actually made it worse -- I'd wake up choking which I had never experienced before. My CPAP data showed inspiration restriction. Sleep study showed 0 apneas, except if I'm on my back, as well as an RDI of 8.2 in my REM sleep. Official diagnosis of UARS.

I realize that biLevel/ASV may be able to help me, but it is simply impossible for me to get one. It was a struggle to get the APAP.

For now, I sleep with a MAD. Actually, the 2nd pH study I did, I slept the first half of the night with the MAD and the 2nd half without it, and I had far less reflux in the first half. I've also noticed that I'm dreaming more and when I wake up with the MAD I feel very sleepy and can go back to sleep, whereas without the MAD I wake up somewhat startled and wide awake. I'm getting a custom MAD made now, and possibly orthodontics to move my jaw forward over time, the dentist who is making the MAD said my airways (did a tomography) are plenty big, and my jaw is wide, but both the upper and lower jaws are not forward enough. I also have TMJ and deterioration in the joint.

I'm glad I found your post because I have not read anyone else that experiences this problem the way I do. I have also been considering a stretta, but seems like a 50-50 chance it does anything and I'm still hesitant to blast the valve with RF energy.

Endoscopy showed zero damage to esophagus, moderate inflammation of throat, slightly opened LES, no hiatal hernia, mild gastritis.

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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by zonker » Sun Apr 03, 2022 11:12 am

asm44 wrote:
Sun Apr 03, 2022 7:29 am
Did you ever progress on this problem?
welcome to the zoo!

unfortunately johnspartan hasn't been here since sept 2020.

but maybe someone has some experience that can help you.

good luck!
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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by johnspartan » Sat May 27, 2023 2:20 pm

well this seems timely. Still nothing good to report, and worse than the last time I posted. Since then, obtained a Resmed Aircurve 10 vauto. But I have hardly used it because of stubborn congestion. May have a 2nd turbinate reduction (had one back in 2013, but it seems to have grown back, according to my ENT). Right now if I use some serious nasal spray, I can breathe through my nose enough for most of the night.

Meanwhile, my sleep doc set the initial pressure pretty low, and I have not altered it. Eg in the settings

mode: S
IPAP 8.0
EPAP 4.0
Easy-Breathe: On

They did this to see if I could sleep through the night avoiding aerophagia - even if my numbers weren't much improved - then later, slowly increase the pressure to try improving the numbers.

The mask is nasal pillows, which are very comfortable. However, my first couple of attempts, no aerophagia - but instead I slowly seem to get symptoms of hyperventilation?? That is, tingling and numbness in the extremities. It's weird because I don't feel like I'm breathing quickly at all. Just my regular breathing pattern. The very first time I tried it, I took a sleep med that knocked me out, but I bolted up at 1am with extremities super tingling. There's no signs of central apneas in that last study I posted above. Would they even would cause that? I have not had another sleep study or titration since I last appeared here on the forum, but will be contacting my sleep doc again asap to ask about this. A couple times after that, I didn't feel like I fell asleep, but after an hour or so of lying there, slowly started feeling the tingling creeping in. Breathing was about the same, far as I could tell.

Now, a couple times in my past, I've had GAD or anxiety, but that just sorta turns on like somebody slowly opening a faucet, and then it stays on say, 80% fight-or-flight, and I can't shut it off. Not on any meds for that now, haven't been for years. And when that happens, heart rate is usually much faster than normal as well. But I don't have a history of single-trigger panic attacks, and far as I know, it is very rare to have an anxiety attack where your heart rate slows down. Sure, I could have vaso-vagal response, but when that happens, I know from experience that I just get sweaty and faint. This just seems odd.

All this being said, ulg. I feel hideous. Focusing is meh. I still strongly feel like the LPR and the massive stomach bloating are really the root cause here, but nobody's got any new ideas in that camp. I also have autoimmune gastritis now, which has no cure and no treatment. For the AIG, I am taking frequent B12 injections.

Also been feeling progressively weaker overall, not sure what that is about. I've consulted neurologists, done EMG's, seen multiple rheumatologists. Blood sugar fortunately still normal. The prevailing theories are:

a) long term sleep deprivation is known to mimic neurologic disorders, so I must fix the sleep to fix this other crap
b) I could be getting a rheum disease, like UCTD (undifferentiated connective tissue disease). I sorta call it the IBS of rheumatoid diseases. While none of the bloodwork has been positive for that, doc says you can have seronegative (no blood markers) UCTD. And in that case, a diagnosis of exclusion.
Treatment: take these drugs. If you can tolerate the side effects, they might make you feel better. Or they might do nothing.
c) some other neuro condition that is less bad than an MS or something else, that you can't measure with EMG/nerve conduction, but might be a small fiber neuropathy (need biopsy).
Treatment: take these drugs...

Am still working on trying to boost low ferritin, which can cause sleep disturbances, and is likely compounded by the autoimmune gastritis... if you don't have enough b12, you won't process iron properly. Just had bloodwork done again, we'll see how that is. Never had an iron infusion, but most docs won't give you one unless your ferritin is near zero.

Alrighty, there's my news. Hope y'all are doing ok.

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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by Callen » Sun May 28, 2023 12:09 am

johnspartan wrote:
Sat May 27, 2023 2:20 pm
Am still working on trying to boost low ferritin, which can cause sleep disturbances, and is likely compounded by the autoimmune gastritis... if you don't have enough b12, you won't process iron properly. Just had bloodwork done again, we'll see how that is. Never had an iron infusion, but most docs won't give you one unless your ferritin is near zero.
Fix this. The bioavailability of PO iron vs. IV iron is nuts. I would do everything you can to get IV infusions: Beg, Lie, Borrow, Cheat, Steal. I'm being hyperbolic, but I feel it's certainly worth a shot. Also, I recommend a full iron panel if you haven't already. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7567229/

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Re: bother trying PaP again after aerophagia failures w/ LPR?

Post by johnspartan » Sun May 28, 2023 8:06 pm

Callen wrote:
Sun May 28, 2023 12:09 am
johnspartan wrote:
Sat May 27, 2023 2:20 pm
Am still working on trying to boost low ferritin, which can cause sleep disturbances, and is likely compounded by the autoimmune gastritis... if you don't have enough b12, you won't process iron properly. Just had bloodwork done again, we'll see how that is. Never had an iron infusion, but most docs won't give you one unless your ferritin is near zero.
Fix this. The bioavailability of PO iron vs. IV iron is nuts. I would do everything you can to get IV infusions: Beg, Lie, Borrow, Cheat, Steal. I'm being hyperbolic, but I feel it's certainly worth a shot. Also, I recommend a full iron panel if you haven't already. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7567229/
Thanks Callen, I'm working on it. My iron panel loooks ok - except for the ferritin. My understanding is that even the average hematologist (I've seen 3 in the past) won't do infusions with the info I typically get from the panel.

IRON, SERUM 84 REF 59-158 UG/DL
UNSATURATED IBC 229 REF 112-347 UG/DL
CALC TOTAL IBC 313 250-450 UG/DL 05/26/2023 01:52 am
CALC % IRON SAT 27 20-50 % 05/26/2023 01:52 a