Hi Elaine,
It sounds like the meds you’ve gotten are a good combination. You’re very lucky to have found a doctor that even mentioned mast cells or mastocytosis. Zantac/Zyrtec is a common combo. If it is a mast cell issue (which it sounds like), the next step you’ll need to take is getting on a mast cell stabilizer (Cromolyn Sodium if in US, Ketotifen it outside US). A mast cell ‘syndrome’ can be diagnosed simply by your reponse to treatment (if it’s helping you, you probably have it). It is great to treat the release of histamine and other toxins that mast cells are producing when they degranulate, but the real issue you need to address is stopping the degranulation in the first place (enter, stabilizers).
I believe that the RA, Fibro, Asthma and IBS all fall under the category of inappropriate mast cell activation. We are in a chronic state of inflammation which can cause many illnesses, simultaneously. Diana or someone more knowledgeable will surely chime in, as I am somewhat new at this as well. I have always known I’ve had issues but could never understand how they tied together (thank you, Driscoll Theory!).
If you have EDS like your score suggests, the barrier that protects your brain (the blood brain barrier) is likely leaky, and this can happen to certain valves as well. We have to address that also because it can cause serious consequences. The fact that you were diagnosed with POTS and could possibly have EDS says a lot. You are Driscoll Theory material!
If you have any type of fluid pressure on your brain (hydrocelphalus), it could be causing pressure on your brainstem, vagus nerve, hypothalamus, other cranial nerves…and I can’t remember where else! Diamox is the drug you want to go to for this. It will relieve the pressure and allow your brain to be where it is supposed to be! This will take the weight off of fragile nerves and tissues that could be causing your autonomic dysfunction.
Talk to your allergist/immunologist about a mast cell stabilizer, and ask about Diamox. The sooner we can stabilize our mast cells, the less we will need things like Zantac and Zyrtec because the degranulation will not be happening. I STRONGLY encourage you to read The Driscoll Theory Part 2 (available on Amazon.com) and also take it to your doctor’s office with you. Once you tie everything together, you will see a picture that finally makes sense, rather than a bunch of puzzle pieces that seemingly belong in different boxes.
I’m sure I have left things out, so I’ll leave it to others to step in.
Good luck to you.
Jen