Just update - it's been a long two months. It basically all started with a panic attack, and now I'm at the stage of having my manometry and pH test tomorrow.
I was having insane heartburn, despite being on 40mg Omeprazole/Nexium, even right before the gastroscopy, which came back perfectly clear. The doc found a bit of bile in my stomach but didn't seem concerned. He told me to come off the PPIs and see him in a month. I saw another GI, actually a colleague of my first doc, and explained what was happening, and he has sent me off for the pH and manometry. I'm very happy that I've got Dr. Sifrim doing the tests, he should know exactly what's going on! I seem to have had insane acid rebound, including awful morning nausea, but I've been so stressed and anxious that I'm sure that's got some part to play in my symptoms.
I've also started going to a therapist, just to get me through whatever is going on. I don't want to become a prisoner to my anxiety. I feel dreadful and have lost so much weight that I'd like to just find out what is happening, and deal with it.
How much damage can be done in the week coming off PPIs? It's felt horrible with constant burning, but I guess it's the only way to really find out what's going on.
Wish me luck, it's been an awful ride.