Ongoing chest pain after starting ASV

[RowG]

Hi, folks! Soon after starting on an ASV six weeks ago, I developed a cough, chest pain, sore throat, body aches, and fatigue. The doc said I had an infection and prescribed me antibiotics over the phone. Even after using them, I still have a lot of soreness in the middle of my chest and fatigue. Slight cough in the morning. The chest pain and fatigue is enough to make my life pretty miserable, and walking and talking makes it worse. I think it is ASV-related because it doesn't happen every day. 

I've called my sleep specialist many times, and the pressures have been adjusted. Last night I put it on a typical pressure of:

EPAP min. 4
EPAP max. 13
PS min. 3
PS max. 15 (had been at 10)

Today, I just feel much worse. I went back to my old CPAP one night and felt better the next day, but I will have an occasional good night on the new ASV machine too.

Other things I've noticed: I tape my mouth with one piece of tape. Last night I woke up from breathing through the edge of my mouth that wasn't taped. I will try using more tape tonight. One night I woke up and my ear was rhythmically popping. My tinnitus has been worse overall since I started.

I do have a chronic illness (MCAS and ME/CFS) that makes me react to pain or exertion, although I was in one of my best periods just prior to starting back on the ASV.

I have used a CPAP, ASV, CPAP, and ASV in that order for about 4 years. I have obstructive and central apneas, but at a certain point the insurance company took my machine away because I changed insurances (and got a bad doc who didn't seem to notice I have both kinds of apnea), thus the bouncing back and forth. 

Last night's Oscar reading is attached. Thank you so much for your help!

[greatunclebill]

Read careful and consult with your doctor. 3 yrs ago i had lung collapse then 3 months later it collapsed again. now 3 years later a couple months again it collapsed. My thoracic surgeon was pretty sure my fairly new Bipap was the cause. the bipap works top down. i convinced them to let me switch back to my apap which works bottom up. so far so good. now instead of going 17-13 every breath, i go 13-17 but still haven't reached much over 14. much easier on the lung.

i told the surgeon that i had done the balloon test showing that there's not much pressure in the pap's. he told me maybe my weak lung is weaker than the balloon. good point.

[RowG]

Thank you. I have called my sleep doctor several times, but he keeps telling me everything is fine. I did okay on the ASV a year ago, but I haven't been able to get those settings so far. I may need to go back to the CPAP or try another machine. Thanks for the advice about being careful.

[greatunclebill]

just in case.... we have 4 major hospitals, but the 2 thoracic surgeons that handle collapsed lungs have an office in one of them. they do not go to the other 3 hospitals. if you go to the er in one of the other 3 hospitals, you will have an ambulance ride to the hospital they are at.  hopefully you won't have a collapse.

[G. Szabo]

I cannot comment on the lung or ASV issues. But my chest pain went away when I started to sleep on my right side instead of the left. Sleep on the left side turned out to have an undesirable effect on the heart.

[SarcasticDave94]

It might be a pressure setting in part. I'd used ASV for 2 years, a few years ago. Just call me complicated.

Your EPAP is 4 minimum, very likely too low. Maybe try increasing it a bit at a time, and limiting EPAP Max. Both are in an attempt to get you onto PS sooner, which for me was brief firing of the PS while EPAP is closer to constant.

Your doctor is correct, everything's fine for the doctor. They're not suffering like you. If this doc is deaf to your medical complaint, fire and replace. Why keep giving them boat payments if they're of no use?

And just like CPAP, YOU can edit your settings any time for free.

[RowG]

Thanks so much. It may be that I had an infection and on top of that the settings are not right. If I fired every doctor who dismissed me despite my health problems, I'd have no doctors. Thanks to this forum and others, I learned how to adjust the clinical settings!

[SarcasticDave94]

Doctors love patients, however their patience with the patients may be lacking. Much like our patience with the doctor is shortened at times.

[AshSF]

The pain could also be the initial adjustment that your thoracic diaphragm muscle is doing while adjusting to such pressure support swings. Maybe it will go away in a week.

Or you could dial your pressure settings a bit more narrower to help the diaphragm.