I'm sorry to hear the ketotefin isn't working. I'm sending my prescription up to Clark's tomorrow. I'm hoping it will help, but I am very difficult to treat as well. I tried cromolyn and did not do well on it at all.
Are you going to keep trying the ketotefin or are you going to stop?
Does Dr. Afrin have you on the benozodiazapines? I'm just curious how much he prescribes for mast cell.
I was put on Ativan by my psychiatrist 3 1/2 years ago when we thought all my symptoms were anxiety. I am still on them. I know it sounds crazy, but I take 1 mg 3-4 times a day, but it doesnt make me loopy at all, never has. I think it helps with the symptoms somewhat. Back in January I had  a really bad episode /attack at night, which ended up lasting for several days (I was reacting to synthroid that they had just started me on) I was desperate for things to calm down, so along with extra antihistamine I also took 2 Ativan at once, which I had never done before because I was scared since it is an addictive drug. I did this (taking 5-6 a day), until my symtoms calmed down. But the 2 did help. I felt wrong for taking so much, but my husband, my best friend and my parents all made me feel ok about it because it is what I needed at that time.
I did tell my psychiatrist about it. He wasn't upset, but said he wanted to get me back to the 3-4, which I am doing now. If i'm feeling good, i take 3 a day, if I'm feeling "active" I'll take one in the morning, one afternoon and two in the evening. But I will sometimes take an extra if I'm having that fight or flight feeling really bad.

I did not do well on Ketotifen (from Clark's, and also another pharmacy which had been compounded with different fillers).   Ketotifen actually made my symptoms worse.   It was a real bummer for me.

I have only three meds. that work for me.   I'm sorry your case is so challenging.

Todd in Tenn.