me, me, me...smells are a BIG THING for me...perfumes are worst..once in the library had to go outside and sit on a bench to get myself back together...lately the smell of meats can set me off...I can use one fabric softner only and lotions are limited mostly to Johnson baby stuff.
this doctor may think what he thinks but he does not carry this disease around with him...we do...
I realize that the world is not going to turn only for me so I try to protect myself ...so don't feel you are alone on this one...it is a ..ME too.

redbird

Im sensitive to a lot of things but recently; chemical smells of floor strippers and wax, air fresheners, preservative sprays put on flowers in florist shops, and today I went into a feed store to buy an animal wormer and had to leave immediately, some weird smell I wanted to vomit--the store staff looked at me as if I was crazy but I left pronto. LOL.

Yes!! All of the above!

And to be honest it's the most disabling/limiting category of triggers for me because there is essentially no safe indoor airspace for me right now other than where I'm staying and you're very vulnerable to other people's aromas. Hospitals, malls...nightmare. I''ve learned strategic breathholding and power walking

Cooking smells too, started with garlic. Couldn't cook hot foods for 1 year, but this has slowly been improving and am able to cook normal foods, but nothing spicey or smelly yet.

The best thing to do is learn your triggers and avoid them as your system might heal a bit and so might your generalized reactivity. That's what I'm doing

There is often a social stigma with these scent reactions and many physicians consider them psychologic. If anyone says this to you just let it in one year and out the other. What you are feeling is real and dangerous and avoidable. Common knowledge and medicine just hasn't caught up yet. You've probably already learned ways to unscent your life and come up with alternatives...it takes a lot of creativity

Share all your triggers and ways you find around them

I have more details on my blog

http://mastcellactivation.blogspot.ca/

Smells are definitely triggers for me as well, especially chemicals, pollution, perfumes, and certain things cooking like onions.  

I thought I remembered something rather 'authoratative' about this, and I just looked it up for you, Cheryl.   The Mastocytosis Society put out a video about mastocytosis, which is available on youtube.   Part 1, which includes interviews with some top mast cell specialists (like Dr. Akins & Dr. Castells), also has a list called "The Major Triggers".   I just re-watched it, perfumes and room freshener sprays are included in the list.   Environmental toxins are also included (which can also be smelled.)

Here's the video URL
http://www.youtube.com/watch?v=zaPo0r37wEc&feature=related

OK, now.   I hope this info is all OK to post.   I am quite a newbie.   But I really appreciated that list of triggers!!  After 30 years of triggering to most of those things, it was very validating to see them all on one list like that!

BlueSkies




   

Yep, Jilly, I know how that is - vibrations, car and truck fumes, and insense!!!  GAG!!!!

After the last time I had contrast and then following my open heart surgery the long trip home from Sao Paulo had me fainted the ENTIRE WAY!!  The motive - THE CAR VIBRATIONS!!   Wow!   You never really realize how normal things like being in a car and driving someplace messes up your mast cells until it happens!

Smells are a big trigger for me too.

The only way that I can fly is to wear a mask from the second I get out of the car at the airport until I get back into the car after landing.  The fumes and all the different passenger's perfumes and colognes are killers!

I carry masks with me everywhere and put one on if I run across something that is going to set me off.  I have even gotten to the point that I don't even get bothered by the weird looks I get!  My vanity is not worth needing to use an epi pen!  

Smells are a HUGE trigger for me.  The main reason I stay at home 99% of the time.  No shopping or pleasure trips for me! : )  Only doctor appointments for the most part.  And anyone that visits my home has to be fragrance free, smoke free, and hand sanitizer (isopropyl alcohol) free.

We also have to limit what is cooked.  Ginger, cinnamon, herbs and spices, coffee, onions, garlic, chocolate.....  With some foods, I can just hibernate in the bedroom until it's cooked and the smell has died down.  Others are not allowed in the house at all.

It seems that specifically coffee smells are a common trigger for mast cell patients.  Does anyone else find that to be so?

My neighbor has taken to building a fire every day (even when it's 80 degrees outside), so I can't even enjoy our porch on nice days.  

The carbon filter mask is the only way I survive in the real world. : )  But even wearing my mask doesn't prevent reactions.  Just being in the atmosphere causes reactions although the mask does help to minimize them.

And if anyone has to stay in a hotel, Wingate by Wyndham doesn't have air fresheners, etc. and their cleaning products don't leave a lasting fragrance.  It's the best we've found.  I still have to be careful, but it's excellent as far as the fragrances go compared to any other hotel I've ever stayed in.  A big blessing seeing as how I have to stay overnight when I go to Charleston for my appointments. : )