First let me say truly how sorry I am that you are having this issue. You asked if I am "still in the same boat" and the answer is yes I am to a degree. In my previous post I spoke about 3 meds that were prescribed for me which stopped the swelling in it's tracks! That was in 2012. Because I tend to not be a good "taker of medicine" I was concerned because 2 of the medications were primarily for stomach issues of which were non existent in my case. I took a leap and decided to discontinue one of the stomach meds, Ranitidine, and hope for the best. One of the reasons I did this was because I began to experience stomach discomfort which was something I never dealt with previously.
Discontinuing the Ranitidine did not help my stomach return to my normal but at least I didn't experience any further angioedema. (tongue/mouth swelling). In addition to this change I reduced my med intake for this issue from an every day occurrence to once every 3 days and still having no swelling.
SO.....I am going out on a limb here when I confess to making my own diagnosis on a Mayo Website! Hopefully I won't be blackballed as a result! LOL
I wish you the best, I know how frightening it can be.