Hey there people! I've been away awhile. I ventured off to research and try to figure out what in the world was going on with me outside of the MCAS. I was diagnosed with EDS. Now I'm learning that it's possible that mast cells could be behind it. Wow this is all so overwhelming sometimes. It would not surprise me to learn that mast cells are behind HEDS.
The reason I am posting here is I need some advice and input please. I am STILL not properly medicated for the MCAS. Yet I feel like I'm taking WAY too much medicine.
Here is what I am taking now:

Prilosec 40 mg  1 AM (one pill in the morning)
Zantac 150 mg  2AM/2PM (two pills in the morning/two pills at night)
Allegra 180 mg  2 AM
Benadryl 25 mg 1 AM/2 PM
Zyrtec 10 mg  2 PM
Doxepin 100 mg 1 PM
(for tachycardia) Verapamil ER 240mg 1 PM
Calcium + D and Magnesium
Lortab for pain as needed
I just started Singular 10 mg  1 PM

Oh and today I just picked up Cucurmin for inflammation. My physio therapist suggested it because I have SO much inflammation he feels it's hampering my therapy. I ok'd the Cucurmin through mast cell dr first.

What do you think? Is this too much? My thought is that I should remove some of these that obviously aren't working. Why take them right? I might be wrong. I don't know. I would love to hear some ideas from you.
My Vanderbilt Mast Cell doc said our plan is to try the Singular and if it doesn't work then we will try Gastrocom and if that doesn't work then we will try Ketotifen. He wants me to talk to my family doc about seeing a cardiologist for my tachycardia and BP drops.If cardio can't figure it out then he's going to send me BACK to the Autonomic Clinic. I also have bouts of anxiety and heart racing and sweating (sounds like autonomic issues).

Thanks for your input and advice.

Thank you Heather! It has been trial and error for me as well (of course under a doctors care).

I had heard before about Lortab being a degranulator. I didn't think it was bothering me in a mast cell way. I suppose it could be affecting my mast cells in a not quite so obvious kind of way. This Dilaudid, I looked it up. It's an opiate like Lortab. Are you saying the Dilaudid isn't a mast cell degranulator? I've already tried Tramadol. I might as well have been taking a sugar pill. It didn't touch the pain. Actually even the Lortab isn't strong enough to mask the pain. It just lessens my pain enough to make it tollerable most of the time. I can go days without taking one. On an exceptional good run I might even go a week without needing one. So I don't take them daily. But I suppose the frequency isn't necessarily the issue. I'm guessing that in taking even just one, if it causes the mast cell to degranulate then just that one could keep the mast cells upset for awhile. Does that sound right? Hmmmm......

I really do not know 'why' my doctor is waiting to try a mast cell stabilizer. Is Cromolyn or Ketotifen more expensive? If it is then maybe that has something to do with it. I will have to ask him in June at my next appt.

As for the Curcumin, when my therapist suggested it I looked it up and saw it had blood thinning properties. My Heparin level is three times higher then normal. So I emailed my mast cell doctor at Vanderbilt to ask about taking it. I mentioned my Heparin level (as a reminder to him) and was asked what exactly was my Heparin level. So I responded with the answer. He wrote back telling me it would be ok to take it but that I should start off with a small dose to make sure I didn't have a reaction and to work up slowly to the suggested dose. I really was expecting him to say NO! So I just started it yesterday. The suggested dose is 1-2 pills three times a day. I am only going to take 1 pill a day for about a week and see how I do. Do you know of any other anti-inflammatory remedy that is safe for MCAS patients?

Thanks again Heather for responding. I hope you are doing well. Have a great weekend

I was able to pick out about four of those vegetables that I know I like. I will increase them in my diet.

Thanks again for all your advice Heather.