I’m so sorry you are suffering so much, my friend. There are no easy answers for most of us,
but it does take careful testing to figure out our individual differences. Was your tryptase positive?
We see MANY patients who have (incorrectly) been given a diagnosis of MCAS with negative testing. I think this is a mistake for us!
With negative testing, doctors should consider all conditions that may mimic it before resorting to a diagnosis. Ditto with high intracranial pressure. If symptoms of high pressure do not resolve with treatment, we should get off of the treatment (Diamox in this case), and our doctors should look into conditions that can mimic high intracranial pressure. It is tough, believe me! I would ask your doctors what may mimic your presentation, and to please dig deeper! 🙁