Hi Robin!

Any chance of you getting to see a mast cell disease expert?

I have a family member who's MCAS symptom cascade was brought to light by mold exposure also.

Have you been able to sort out other triggers to eliminate and help you?

Have you ever tried a mast cell stabilizer?

Is the beta blocker helping?

It is very important to know that the top Masto specialists feel strongly that we NOT go off of our H1 and H2 meds (or other meds) for testing. The test results won't be affected for what the doctors are looking for. Your local docs may not know this, as most local docs lack the necessary knowledge to treat mast cell disease.

It it were me, I would try a zyrtec in the morning and see how I did for a couple days. If it was fine, I would add an allegra (such as an allegra in the morning and a zyrtec in the later afternoon or early evening). If all is fine, a few days later (if I also had stomach issues), then I would try 150 mg of zantac in the morning and see how I did.

When the doc first put me on those exact meds, I was highly skeptical that they would help. In fact, I was sure that they wouldn't. You can imagine my surprise when I saw that they did help a ton!

Salmon is one fish less likely to cause problems, but anything that decomposes contains bacteria that can produce histamine.  If the salmon had been canned or was not handled properly in packing, shipping, etc., it could have been a problem.  All that said, it was probably the vinegar, especially if you're allergic to mold.  Fermented things contain substances  similar to mold.

Beta blockers usually don't trigger symptoms, but they can be dangerous for MC disorder patients because they make it more difficult to reverse anaphylaxis.  Hopefully, you'll be prescribed appropriate mast cell meds and will be able to quit the beta blockers at some point.  You might want to think about a medical alert I.D. bracelet or necklace that indicates you are on beta blockers.

Hi R!
Its fine for you to be on those meds before and during testing, no problem. When you post, under that blank box is a list and the top one says"Check this if you wish to be notified of replies to this topic." Click that before you click post and you will be notified whenever someone answers you!

I have to agree with everyone here and their excellent advice and I would try to get on those meds quickly so you will feel better soon. I would also tell you to keep a journal, include activities, food and how you feel, meds and any problems you have. This will help you pin point patterns if you react to something.

I also have POTS with my Masto and was on a beta blocker for maybe 15 years? I had to taper off of it very very slowly and it felt better when I got away from it.

Remember do NOT eat leftovers unless you freeze them and check out the list of foods high in histamine--use it as a guide, stay away from those foods--when you are more stable you can add some of them back one at a time and double check if you react to it or not. We arent all the same but we have enough similarities that each experience helps!

Fish especially is something we need to be very careful of--I seem to react to the fish high in Iodine faster than anything else--and shellfish is considered very bad for us, so be careful and if you do eat fish, keep Benadryl and your Epi pen nearby.

Please read a lot here and start gathering your info for an emergency notebook (see that thread here) OR TMS has one you can print out for free. This helps tremendously when you feel bad and cant think straight while getting help.

That confusion is called Brain Fog and most of us have it to varying degrees lol. When you feel better think about adding Vistaril (atarax) to your meds twice a day--I use a low dose of 25 mg--NIH states it helps Brain Fog and we sure need it!!

Next thing, most of us have messed up Seratonin levels--which means you cry easily and get emotional. I take chocolate for that LOL--but Im going to talk to my DR about a med that might help.

Im really glad you found us and remember to talk to your DR before changing any meds. We are here for you now
Hugs,
Ramona