Hi there. First off Dr. Diana, thank you so much for this website. It has given me very helpful information!
I recently, in the past year developed what I believe to be symptoms of some type of mast cell activation
syndrome. I had horrible digestive issue for almost a year, itchy skin/rashes/ feeling of lump in my throat
off and on, and terrible head pressure/frontal sinus pressure which seems to make me dizzy and gives me
trouble focusing at times when the pressure is at its worst.This past March I went to an allergist (with the help of your information), and asked them to run tryptase level
and some other bloodwork which all came back negative. However, the allergist did let me trial gastrocrom
and my digestive symptoms improved almost immediately. I can now eat most foods again which I am thrilled
about, but now the frontal sinus pressure has seemingly taken the forefront and is causing me some great
difficulty. My doctors all want to tell me its just allergies ( as I do have hayfever pretty bad), but I really think
there is something more to the picture. I have read about your recommendation for Diamox, but I also have
many drug sensitivities such as sulfa drugs/sulfites. Can anyone else think of anything that may help with my
pressure? After watching some of your videos I am wondering if it could be either POTS or the external
communicating hydrocephalus, but I am having a hard time distinguishing the two. I sometimes do get a little
dizzier when I stand up for a minute, but nothing that is too severe at this point. Any suggestions would be greatly
appreciated! Does anyone think Nasocrom/Nasalcrom would be of any help? Thanks so much for your help!!
Hi Jen, to help figure out if it may be external communicating hydrocephalus, you can look at your symptoms. Do you have dizziness, nausea, tinnitus, a headache at the base of your head, neckache, tremor, are you worse with valsalva (straining). If so, it sounds like hydrocephalus. Most doctors find that sulpha allergies are not as much of a problem as they anticipated — but you want to work closely with them! Nasalcrom is great if you have nasal congestion from mast cell involvement (it may be over kill if you are on Gastrocrom). Unfortunately, there is no non-sulpha substitute for Diamox (except IV Mannitol). 🙁 I’m glad getting your mast cells under control is helping! 🙂 DianaJen