Horrible ASV titration study last night - need help

[needzzzzs]

After working my way through APAP, CPAP and BIPAP (in that order), and not being able to get my AHI consistently below 5 (since most of my apneas are centrals), I had an ASV titration last night.

It was absolutely the worst night I've had since starting treatment for sleep apnea. Despite theoretically having the machine on the lowest setting, the amount of air being pushed at me through the masks (nasal pillows, and then later a full face mask) caused massive air-swallowing (aerophagia) and then resulted in uncomfortable gas pains and constant flatulence (farting). I woke up every two hours or so. The technician said I slept more than I probably thought I did, but I couldn't wait for the night to be over. She also claimed that leg jerks were probably what was waking me up.

Of course, my AHI was down near 0 during some of the study, something that hasn't happened in my 3+ years of sleep apnea therapy. I realize now the limitation of use of the AHI as a measure of successful treatment. An AHI of 0 is meaningless if you are not able to tolerate the therapy.

So...big question is: have others experienced this initial very uncomfortable reaction to ASV regarding the air-swallowing and its consequences? If so, did you persist trying ASV, and find that it went away over time, or that there was some way to compensate for it (mask, machine adjustment, etc).

I am very discouraged at the moment. It will take a while before I see the sleep doc (Jul. 21), although I'll probably hear from his office before then, and may ask to speak with him prior to my appointment.

Sigh...

Debbie

[OutaSync]

It sounds like your titration night was like every night I've had since starting this so called "therapy". Welcome to a life with little sleep, swollen belly and constant farting. For some of us it doesn't get any better.

[avi123]

After working my way through APAP, CPAP and BIPAP (in that order), and not being able to get my AHI consistently below 5 (since most of my apneas are centrals), I had an ASV titration last night.

It was absolutely the worst night I've had since starting treatment for sleep apnea. Despite theoretically having the machine on the lowest setting, the amount of air being pushed at me through the masks (nasal pillows, and then later a full face mask) caused massive air-swallowing (aerophagia) and then resulted in uncomfortable gas pains and constant flatulence (farting). I woke up every two hours or so. The technician said I slept more than I probably thought I did, but I couldn't wait for the night to be over. She also claimed that leg jerks were probably what was waking me up.

Of course, my AHI was down near 0 during some of the study, something that hasn't happened in my 3+ years of sleep apnea therapy. I realize now the limitation of use of the AHI as a measure of successful treatment. An AHI of 0 is meaningless if you are not able to tolerate the therapy.

If you read posts on this website you should have known about Meteorism (this is the correct medical term of ingesting air. Almost all rooky CPAPnics have it). Aerophagia is medically used for air left in the GI tract after surgery..

So...big question is: have others experienced this initial very uncomfortable reaction to ASV regarding the air-swallowing and its consequences? If so, did you persist trying ASV, and find that it went away over time, or that there was some way to compensate for it (mask, machine adjustment, etc).

I would go for an ASV machine only if I had a clear Central Sleep Apnea syndrome (which I don't)

I am very discouraged at the moment. It will take a while before I see the sleep doc (Jul. 21), although I'll probably hear from his office before then, and may ask to speak with him prior to my appointment.

Are you using your CPAP now, if YES, I would use it in CPAP mode only (not in APAP mode) until your CSAS is clarified. APAPs are contra indicated for those with CSAS, CSR, COPD, cardiac problems, and weak lungs, by the American Academy for Sleep Medicine.

Sigh...

Debbie

p.s. to reduce Meteorism I would purposely allow some air leak thru the mask, nose, or mouth, and use anti GI gas medications such as ultra strength Gas Relief softgels from Walgreens.

[needzzzzs]

Avi123,

A few comments on your comments on my post:

Firstly,

With regards to the correct use of the word aerophagia, please see the article at the link below:

CPAP-Related Aerophagia: Awareness First!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3525983/

My use of the word is correct. Aerophagia (caused by the machine) leads to meteorism (the condition of having excess gas in the intestines).

Those with reflux problems (which I have), are more prone to aerophagia related to CPAP use.

Secondly, I have been told I have complex sleep apnea. I was tried on CPAP as opposed to APAP (to reduce the centrals) but things were much worse. I was then given a BIPAP machine, with each pressure allowed to range (i.e., essentially dual APAP). Not surprisingly, I'm essentially getting similar readings to what I got with my APAP machine. They are slightly better, but still not in the range I was hoping for.

Just clarifying a few things here. Like most of us, my situation is complex and I have tried things which are reasonable according to standard sleep apnea treatment standards. I'm a medical librarian, so I know how to research this stuff. The post to which you responded was my personal experience.

'Nuff said.

Debbie

[avi123]

deleted

[bwexler]

After reading your post and several other recent posts, I am begining to notice some parallels in my own treatment since moving to ASV last Oct.
I have gained about 12 pounds after remaining stable + or - 2 pounds for over 7 years.
I have become aware of gas after having it pointed out during a Doppler ultrasound test where some results were blocked by the gas.
I have not been sleeping as well as I would like, more fighting with mask leaks and hose tangles than 3 years on APAP.

I don't have answers for you but I will be looking for my own.

Thank you for raising my awareness.

[sawinglogz]

I had tremendous trouble with aerophagia for many months on ASV. In fact day number 4 of therapy I had to spend a few hours getting rid of the gas -- my stomach and intestines were rock hard. I also had some reflux.

I tried a bunch of different things from chin strap to tucking my chin to tilting my head back to sleeping on one side, etc.

I managed to get it down to 1 bad night per month after a couple months. And now, within the past month or so it seems to have gotten much better. Here's what's been working for me:

1) Sleep toward my left side. (Completely on my side pushes my mask out of position and makes it leak. On my back causes OSA. On my right side caused reflux.) In practice this means a pillow under my back to tilt me off-center, and a pillow near my temple to keep my head from shifting too far left.

2) Keep my lower jaw back. This seems to have been the "magic" trick for me. I was wearing a mouth guard which made me tend to push my lower jaw forward a little. Plus I wanted to push it forward to prevent leaks. But now I've found that I can adjust the (hybrid) mask to match that jaw position, and I have had very little aerophagia lately.

3) Avoid chugging large amounts of liquid. I used to guzzle a large glass of water after my meal (since I don't really think about drinking between meals). I've since switched to smaller sips throughout the day, and that has helped with the reflux, and possibly thus the aerophagia.

I can't guarantee these will work for you, but I'm happy to talk you through some of the various things I tried. It was pretty awful for a while.