New here! Just wanted to share a few things and see what you guys make of it - finding any knowledgable individuals has been rough, even amongst the medical professionals!
I'll try to keep it as brief as possible but it's been a long old journey!
Essentially, I was diagnosed with severe OSA about 4 years ago - I want to say it was about 55 AHI but not 100% certain - I was just diagnosed with it, told to buy a CPAP and didn't have much beyond that. I do remember I was told I had low lung capacity though.
I have had what I now believe is aerophagia for just over 3 years, completely untreated, mostly because my main symptoms have been bloating, trapped gas and chronic constipation for the aforementioned 3 years. This led docs to essentially test me for every gastrointestinal disorder or disease that they could conceivably think of, all coming back negative.
It wasn't until the CPAP machine gave me pneumonia a couple months back that doctors finally looked at the CPAP and made the connection.
I should note now that I travel and live in different countries for years at a time - I'm currently in a country where English isn't very good and they don't seem to be particulary proficient when it comes to diagnosis.
Anywho, for the past 3 years I wake up gassy and need to roll from side to side to try and release as much gas as possible or I know it's going to REALLY hurt when I get out of bed. Most of the time I pass alot of gas in the mornings and I'm pretty setup for the day - I have constant mild to moderate bloating and trapped gas, but I think because I have had it for so long that my body has just adapted to it and it takes alot to really bother me. But it is always there, constantly, it never stops. I have found that as long as I keep moving, its usually not too disruptive, though in the evenings its worse every time. Belching into the face mask most nights, pressure on my chest where I need to sit up and deep belch it out.
I have also had about 4 occasions in 4 years of stomach distention so bad that I can barely walk and have to leave work until it subsides.
Currently, after one of my (many) doctor appointments that I need to travel 2 hours each way for - fristrating right? - a team of doctors reckon my lungs have emphesema all over caused by constant high pressure from the CPAP. They don't seem particularly concerned about that... I bloody am but they aren't! But due to this, and the fact that I likely have low lung capacity anyway, they have lowered my autoset pressure on the CPAP from 9-12 (what it was for about a year) to 4-10. It seems worse. Quite abit worse. Constipation has really flared up bad now, and my average AHI with the mask has gone from 3 AHI up to about 7 AHI in the last 30 days.
Now, they are recommending switching to a BPAP for which I'll have to pay out of pocket for... not cheap.
I don't have any of this OSCAR data that people seem to post, but any thoughts in general about this? The chronic constipation doesn't seem to be mentioned much on the forums and that particular symptom takes up much of my headspace haha.
Grateful for any tips or comments from people with similar experiences!