I went to my Daughters graduation, 2 days ago. There was little AC, but I was doing pretty well, until after her pinning ceremony. I was sitting outside in the shade,with my Mother and started coughing --and couldnt stop. I also started flushing very quickly. I said, "Somethings wrong, but I dont know what I reacting to." Both of us starting looking for anything obvious but didnt see anything. Then I said, "I smell something weird." My Mother asked if I was smelling the rose. I realized she was holding my daughters white rose from the ceremony. I said, "It doesnt smell like rose,its something else." My Mother put her nose to the rose and said, : It smells like a chemical." She moved it about 10 feet away from me and I stopped coughing and could breath again.

Yesterday, I had another episode reacting to an unknown trigger.
I woke up coughing continously, then I noticed I was having troubling exhaling with the cough, I sounded as if I were barking. I was panicky and grabbed my prednisone and took2, 2 benadryl and my albuterol inhaler. At that exact time my ex-husband called me and he understood I was having a reaction. I lost my voice in about 60 secs.  My ex is an angel, talking to me in soothing tones and making me laugh until the meds kicked in ,my voice came back, and I wasnt coughing anymore. I still dont know what caused rhe 2nd episode, but it was my first where it felt like my throat was involved and I dont like it, LOL.

Hi Ramona,

It's always so scary when you don't know what the trigger is!  The only connection I can think of is a pesticide.  The rose could have been sprayed.  Does your county spray for mosquitos?  If they do, it's often at night.  If you call, they'll tell you.  In my county, they publish in the newspaper where and when they're spraying.

Also, once you've reacted strongly to something, it can take a week or so for your body to settle back down.  I agree with Lisa.  Epi first for throat closing.  Did the albuterol help right away?  The reason I'm wondering is that it will work for asthma, but I don't think it'll help for anaphylaxis.  Has anyone else used albuterol for a mast cell episode?  

Hope you don't have any more repeats!!   Congrats on your daughter's graduation!!  You must be very proud!!

I think youre right, there was a preservative sprayed on the roses, there were 150 new nurses pinned and the ceremony was very long.. so I think the florist did it to make them not wilt quickly--but made me react. Hey how was your Hawaii vacation?? I wanna hear ever detail!!!
love u
Ramona

Hi Ramona

So sorry you had such a reaction at such a bad time!!

Being a world class reactor to all kinds of chemicals, I can tell you that flowers from a florist are very likely to be contaminated with all kinds of things. Roses are very persnickety plants to grow, and are almost always sprayed with many types of pesticides, as bugs think they are candy. They will also have many types of chemical fertilizers, because they are heavy feeders. All of that is bad enough, but the florist actually soaks them in preservatives, not just sprays them, to make the shelf life until they are sold last longer. It is often a sulfite based preservative.

All florists flowers are risky, but roses are particularly so. I haven't been able to have any flowers in my house for many years, unless someone I know has grown them organically.

Wishing you some respite from all the problems.

I just got another call from NIH.. from Dr Carters office. She told me they arent saying no, they need more information, but IF my tests prove I have masto, they dont accept those people for the IA study.  (The WHO criteria diagnosis that is). We agreed I will have the BMB done here by Dr Lottenberg and contact them with the results. In the meantime, I will go to each hospital and doctor again and get copies of all my records for my OWN peace  of mind--and I will have it to mail it in bulk ---if they want those records at that time. This is getting funnier by the moment lol.
Hugs
Ramona

Well, then, there's your answer Mona!!   So, put your running shoes on and GET MOVING!!!!!   Give a call to Lottenberg's office NOW and give them the green light and set up for a BMB ASAP!!!   You've lost precious time with the NIH!!!


It's a shame, cause now their treatment of you is PUBLIC and it makes them look BAAAAD!!!    I know that they have their protocols and their interest, but it already goes against patients to want to be a part of research and turn into "A PROJECT"  and Metcalfe already has this kind of reputation as it is.  Dr. Castells veered me away from the NIH for this very purpose cause she knew that they would not give me the help I was needing.  They are required to remain within their protocols, but once you fit in, then what's the beef?  But there seems to be more going on here and this puts a black stain upon them!!!   So, I'm really sorry to hear this news!


But, Mona, I've seen in my own case how things have changed and developed and I'm not preaching here or trying to shove my beliefs down someone else (gosh how I tire of having to say this - what has our country come to in regards to respecting others religious beliefs - now we have to appologize for them as well!).  I believe in God and I believe that He cares for us and has a part to play in our situations and I have had situations happen with me that just were not possible to explain by chance!  Even my doctors had to say that it was Divine intervention on my behalf for the coincidences were just way too many to be chance.   So, because of this, my friend, I have come to learn that when I keep butting my head up against a blockade it's because it was meant to be there and there was another direction I was to go in!  God closed the door, or blinded and confused the doctor cause He didn't want me going in that direction and period!  TIME AND AGAIN this is how it was even to the point of my surgery where I knew the direction I needed to go in, but due to my doctor and my husband I had to go in another just to please them and when the door slammed I knew that was confirmation as to my being correct and when we went in that other direction the doors opened WIDE!!

Mona, all of this head butting may have been for the very purpose of WAKING UP DR. LOTTENBURG!!!!!  He may indeed be THAT doctor for you but without your having SO MUCH trouble, he may never have caught on!  My masto doctor has gone through the wringer due to me, but my case has forced her to learn more than she has ever learnt before to the point that we are partners in this disease and she trusts my judgement and opinion.  Lottenburg doesn't think you are just an emotional woman anymore and you've also gained other victories you never would have had you gone directly to the NIH.  

So, my friend, rejoice over this situation and be thankful for it clears the way to a new direction leaving you free from doubts and perhaps in a much better situation than had you gotten into the NIH directly!!

So, not a bad or negative situation after all!  HORRAY FOR MY FRIEND MONA!! NOW SHE'S CLEAR TO MOVE AHEAD!!  YIPPEEEE!!!

Ramona! Oh yeah I learned about PABA in the 80's!!! Or was it 70's? Sea and Ski suntan lotion! It was the first one I tried! I literally blistered!!! It was awful. The stuff in the new ones non paba bother me, especially the spray kinds, we'll the rub in too, can't pinpoint which chemicals but I've run the gamut of them years past, oxybenzophenes I dunno but it's different, it's a systemic chesty dizzy, stomach pain whereas my PABA was skin, however I don't have it on my skin when I'm reacting to said peeps.... We have a huge amount of retirees here that are obsessed with sunscreen. I just grabbed a grocery cart the other day and peeeeeeewwww smelled it right away, my hands were covered in it. Can you imagine being that coated in the stuff that you slime the cart you are pushing! How'd I get here? What Lisa said was wonderful! Just may have been the chaos to get Dr Lottenburg involved!!! I'm very happy to see that Ex of yours is being so wonderful!! And that your daughter is a full blown nurse!! How cool is that Mom?

Hidden chemicals indeed!

Today I had a minor attack caused by sitting in a newly-renovated waiting room.  Dizziness/headache, palpitations, a few hives... I was able to head it off with a dose of liquid Benadryl.  Thank goodness!  I need to wise up about leaving places that are making me react, but... it's like I'm in slow motion.  I know the snowball is starting to roll, but instead of getting out of the way I'm sitting around thinking about what the trigger could be

Heather

ps - Ditto on the advice to use an EpiPen when your throat is swelling!