Hi
I dont have any answers for you right now but i can certainly relate. My husband is having some of the same issues and he is feeling very frustrated also, hang in there and maybe someone on here with more experience can offer advise. I will be sure and let you know anything we find out and maybe it would give you some insight.
Donna McAtee

Thanks for the encouragement Donna and Deborah! I am still whirling from the diagnosis, but I have come to better terms with it.

Donna

Hello Donna and welcome to the board!!
We are here to share our tips and outcomes--some will help, some wont.. but we try
IA is pretty scary.. Ive had over 22 episodes in 3 years... and some were violent episodes I barely made it out of.. Ive learned some things since then that have helped me not only survive but do it much better than before.
First you need to know that Masto reactions are a weird variety--you might be reacting to the meds you took or the last foods you ate--the true culprit here is histamine building to certain levels and that sometimes makes it hard to see what you are truly reacting to.. one day you could eat a serving of meat , the next day you eat the same thing and react--because the foods histamine level continued to rise when refrigerated. (happens frequently with leftover proteins). When cooking, freeze your leftovers that you want to eat later, the histamine level will not rise and you will be safer, see?? This is why sometimes you will think something else caused your reaction --you looked at the last thing you took or ate when the true cause was before that. It does make it confusing sometimes.  Once youve got your meds tweaked right you can start to test your reactions to other foods and meds--but you need to be stable before you do that.

Personally Ive found that taking a one time dose of prednisone when Im reacting stops me from going into shock almost 100% of the time. So, I bring my emergency prednisone with me the same way we take our benadryl and epi-pens with us, everywhere.

Hope this helps and welcome again!! This is a wonderful group of people  and we have your back,, just ask!!
hugs
Ramona

PS most of us respond very badly to aspirin, be careful about that

Donna,
First off I want to say welcome, secondly you can have your vocal cords looked at.  My doc thought the same thing and I went to a specialist and she sent a camera down my nose and into my throat to look at my vocal cords.  Just for fun I took some foods that I thought were triggers.  She took baseline pics then I ate a tangerine and drank some grape soda.  Waited a few mins and then she "went back in".  Turns out that my vocal cords were fine, my throat was swelling, got pictures to prove it! As the swelling occured, I got nervous  and started holding my vocal cords shut, which made it even worse.  She taught me how to hold them so that I could get more air though.  Now when I start swelling I try to stay calm and remember what she taught me.
"3rd-ly" When you have mast cell issue it is not uncommon to not be allergic to anything.  I am not allergic to anything however I have a list a mile long of foods that cause ananphilaxis...crazy right!  Romona's right it all has to do with histamine release!
"4th-ly" I can not take certain meds that cantain certain ingredients..for instance pink benadryl-has red 40, red 40 is a salicylate this causes histamine release along with yellow 10 and yellow 5(any number is bad for some)  Usually it is the inactive ingrediet in the meds causing the problem and not the active ingredient, however I am not a doctor so don't go take a bunch of meds!  I have found that I do better buying benedryl marketed as a sleep aid because it is blue.  With my antihistamines I must read the labels carefully for instance I buy name brand zantac, but generic claritain.  Name brand zyrtec and name brand allegra but generic benedryl.
My advice would be to get your vocal cords looked at.  Sounds gross but it is doable.  I would not let them put numbing stuff in my nose because of the possiblity of a reaction from it.  They use some ky I think...haha kind of funny I suppose!
Then if that comes out ok look for a mast cell specialist because some doctors dont have a clue!
Good luck and I'm glad you found this forum with out it I would be lost and feel alone!
Pam  

Donna,
Welcome to the site.  Sorry you are dealing with all of this.  Keep reading, as these posts shold help you connect the dots in sorting out your issues.  

I was in your boat about 10 months ago, reacting to nearly every med.  Once I learned there are meds that are known degranulators, this explained alot. Then I learned that several of the meds I reacted to contain sulfa, and cross react with a my known sulfa allergy.  Then I connected dots with my severe reactions and yellow dyes. In case you are intereseted in readin gmore, I have many posts on here about my medicaiton journey.  Azo dyes are known degranulators, and in the US are FD&C or D&C dyes (color and number).  I go into anaphylaxis from Yellow 5 and 6 (6 is made from 5) and have symptoms triggered from Red 40 and Blue 1.  

Many react from the source of the inactive ingredients, such as gluten or  corn (look for starch), or lactose, sulfites, methylparabens, Sodium lauryl sulfates, or other ingredients.  Many choose to have their meds compounded minus these inactive ingredients.  

As Pam was saying, many of us have been able to figure out which meds/inactive ingredients we can't tolerate.  Many of us have several meds we take, but it is important to start with a H1 and H2 antihistamine, if at all possible.  

Benedryl and Walgreens diphenhydramine (generic Benedryl) both comes in dye free liquid capsules.  I can't tolerate the pink or blue versions.

Cetirizine (generic Zyrtec) come with Blue 1, even though the pills are white.  Brand Zyrtec has no dyes.  

Claritin ready tabs have dyes and if my memory serves me correctly also  contains artificial sweetners, which triggers many of us.  I don't have brand Claritin on hand, so can't recall, but I know I looked at it one time.  I do have Walmart loratidine on hand, and this version does not have dyes.

Of the H2's, Zantac is generally tolerated by many of us. Brand Zantac does not contain those azo dyes, but generic versions do.  Several of us can tolerate any of the oxine dyes, which are from the earth, unless they are specified as synthetic.  Pepcid is the other recommended  first line H2.  I can take the Walmart famotidine, as there no dyes.  Tagamet interferes with several meds that a mast cell patient may take and also interferes with the body's ability to break down histamine, so it is NOT on the recommended list.

Best wishes,
Lyn      

So, I had my appointment with the new immunologist. I brought him all of my previous tests, talked for over an hour, told him of my previous diagnosis of having seizures and not anaphylaxis......he said first off that he has NEVER heard of someone having seizures in their throat, and that the advice to NOT use my epi is LUDICROUS and to ignore everything that doctor told me. He said that there was a possibility that I had vocal chord dysfunction, but he quickly ruled it out. He ran more tests and I am waiting for the results. He did take me off of everything except the Zyrtec (which, I have been feeling better since I stopped the ranitidine) and he gave me a rescue inhaler when I feel tightness in my chest to see if it helps. He wants to rule out a pulmonary disorder because of my medical history (15 surgeries in my life all having to do with muscle tissue not attaching to my bones correctly) so I am still in limbo.

My unofficial diagnosis is still IA until the testing is completed.