Thanks everyone.
Yes, sevenstars: MAC is Mycobacterium avium complex.
It's the ethambutol and or inhaled amikacin that causes hearing loss -- I need to double check on all the others. All my mac drugs right now are: ethambutol, zithromycin, avelox, inhaled amikacin, clofazimine. The hearing loss from these can be irreversible, but sometimes it can be restored. Last year I woke up one day and was suddenly about half deaf it seemed. Suddenly everything felt as if my ears were about to pop but didn't. You know when all sounds are faded before your ears pop and then they pop and you can hear perfectly again? That time it lasted for a few days plus people sounded like chipmunks on the phone - it was not good. That time, my docs had me stop the myco drugs for 2 weeks, take a hearing test and then start steroids. The hearing came back mostly after a week, enough that I was fine with.
This time, I told my docs on Thursday that I felt about a 50% hearing loss pretty suddenly and they said that day to keep taking all meds but to schedule another hearing test. I'll be taking that test this coming week, but meanwhile my hearing has gotten worse. This is more like 75-80% loss I'd say. I'm feeling 'disabled' right about now with my hearing. My husband and I did some erans yesterday and I was glad he was there to hear everything people were saying....and I can't tell how loud I'm speaking so a lot of the times I could just be yelling and not know it which I'm getting self conscience about. (lol - but not really lol. ) I can barely hear myself whisper let alone someone else. I was in a class the other day and I swear I could not hear or understand my teacher and sure enough he mentioned my name. Luckily everything he was doing and referring to was projected on the wall so I could tell visually what he was trying to say to me, but that was purely visual b/c I couldn't hear a thing he was saying! Stressful.
I can handle a little hearing loss and ringing like I've been getting used to for a while now, but this is too much. At this level I wonder how I can function at my job next week (the thought of going there when my hearing is like <b>this</b> makes me cringe! I don't want to go and subject myself to that experience honestly), or when I'm around people. It would be easier to wear a sign around my neck letting people know I'm almost deaf. That way they won't expect me to hear them. It's really a different level of loss, and I don't like it at all.
Anyone know whether hearing aids work on people if you lost it due to myco drugs? I just wonder if it's damaging a part of the ear that hearing aids won't work for. Does anyone wear a hearing aid?
Darbskull - yeah funny. I thought about that too!