I’m trying to understand some of my reactions to the mast cell treatment with my underlying disoders (EDS, Chiari, IH, etc). I’ve been tried on both Diamox and methylzolamide (it’s cousin drug with often less side effects) and I cannot tolerate either…and I tried REALLY hard for months to work up to tolerating them. So, (largely because of Diana’s work here) Dr. Francomano put me on a trial of H1/H2 blockers. I was amazed at the difference in rashes that I’ve had since I was a child. In two weeks, they were completely GONE. So I was really thrilled with that result. Don’t know about a difference in veins or drainage from head as I’ve not had those measured in the 5 months I’ve been on the H blockers. However, after a period of a couple of months, the rashes slowly started coming back and now they seem even more pronounced. Now, the H blockers dosage has remained the same and (because of other delays) I’ve not yet had a follow up with Dr. F so I’ve not been switched to Chromolyn Sodium. Has anyone (particularly hoping Diana could chime in with her thoughts) had this happen where it almost seems like the dosage of the H blockers needs to be increased to deal with the rash coming back? I just wanted some thoughts and input before I go to see my Drs in MD. I’m having brain surgery to correct a number of issues (craniocervical instability, cervical medullary syndrome, compressed brainstem, Chiari decompression, atlanto-axial rotational instability, etc). No one yet knows if this will have any impact on my IH but I think thoughts are the I will eventually need shunting since I don’t tolerate the diamox family and it didn’t help with my ICP anyway when I was on it.
Thoughts? Opinions? Would the chromolyn sodium make a difference in the mast cell issues? Should I explore upping my dose of xyrtec/zantac (H blockers) to deal with the rash coming back or would you just wait and discuss with Dr. F in a few weeks when I see her?
Any advice, opinions, hypotheses, etc would be extremely helpful. Thanks in advance!!