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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Triggers >> Are smells triggers? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1358274356 Message started by cheryl on 01/15/13 at 06:25:56

Title: Are smells triggers?
Post by cheryl on 01/15/13 at 06:25:56

I was diagnosed with SM in 1986. Got worse 3 years ago. I see a doctor at Duke here in NC. Had the bone marrow test and reconfirmed I have SM.

Anyway, I was telling my doctor, last month, that one of the worst things for me are smells. I get hit with a smell from detergents, perfume, construction, doctor's office and I get an immediate reaction. All at once I want to throw up, get dizzy, headache and want to swoon. My doctor says that's not a reaction with SM. There's no medical test or evidence that this happens.

Does anyone else have this reaction to smells?

Title: Re: Are smells triggers?
Post by redbird on 01/15/13 at 07:12:31

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

Title: Re: Are smells triggers?
Post by Starflower on 01/15/13 at 09:52:15

Yep. I was just complaining about this a couple of weeks ago >:( Airborne latex (like when a balloon pops) is the worst for me, but I've also become pretty sensitive to detergents, perfume, "air fresheners," silicone spray, and a lot of products used for renovations... new carpet, paint, etc... Masto is a rare disease, so to say that something doesn't exist just because there's no test or "evidence" (I assume he means published research) well... that's a pretty arrogant comment to make.

Heather

Title: Re: Are smells triggers?
Post by Riverwn on 01/15/13 at 13:40:05

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.

Title: Re: Are smells triggers?
Post by frugalmama on 01/15/13 at 21:07:38

Smells are terrible for me as well. I react to all the "smells" listed above, as well as the scent of food cooking (even bread in the toaster). I stay in our bedroom while my hubby cooks dinner and feeds our kids, and he runs our newly installed range hood so I can come out of our room a half hour or so later. We eat all cold foods for breakfast and lunch :). I agree with starflower - I don't think there's anywhere close to enough research to definitively say that something can't be a trigger. I think this illness has taught me that if it seems unusual or improbable, it probably fits ;)

Title: Re: Are smells triggers?
Post by Anaphylaxing on 01/15/13 at 22:26:30

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/

Title: Re: Are smells triggers?
Post by cheryl on 01/16/13 at 02:41:52

Thank you for all your replies. I knew it wasn't "all in my head." Hate that when its even just implied. I am excited because on the forum that there is a doctor in Statesville. NC. This is the town next to mine. Closer than Durham over 2 hours away.

Title: Re: Are smells triggers?
Post by BlueSkies on 01/17/13 at 15:52:02

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

Title: Re: Are smells triggers?
Post by jbean on 02/17/13 at 14:23:06

YES. Big yes on the smells. Somebody was burning incense in the hotel room next to me this weekend and it set me off like a rocket. Weird thing for me is also vibrations (like sitting on a airplane in a seat near the engines) as well as diesel fuel.

Title: Re: Are smells triggers?
Post by Lisa on 02/23/13 at 13:09:54

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!

:P

Title: Re: Are smells triggers?
Post by Joan on 02/23/13 at 20:04:31

Plain white vinegar, if you can tolerate the smell, is a good fabric softener for colorfast clothes. I put it In the fabric softener cup on my washer.

Title: Re: Are smells triggers?
Post by gnbailey on 03/18/13 at 13:32:21

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! :)

Title: Re: Are smells triggers?
Post by Joan on 03/19/13 at 14:32:02

What type of mask do you use?

Title: Re: Are smells triggers?
Post by dixiepicsy on 03/23/13 at 16:53:25

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. : )

Title: Re: Are smells triggers?
Post by Anaphylaxing on 04/08/13 at 08:04:01

Me too Dixie

Except so far I'm ok with chocolate

Haven't been able to travel yet but appreciate the hotel tip

Garlic is another bad one for me

And yes people and their smells. ;) detergent body spray deodorant their Caesar salad and on and on

I find a respirator style mask helps a bit but find the carbon ones don't for me so far

Thank God you and I both have a safe home. Its a constant battle isn't it

Title: Re: Are smells triggers?
Post by angelloz on 04/08/13 at 11:03:25

First of all, yes to smells fro me. Also Lisa, I have the same problem with car vibrations. Some days I can ride for short distances but the vibrations really are a problem. I am trying to figure out how to deal with this so I can go a few places. Glad to know I'm not alone , but wish none of us had to deal with these things!

Title: Re: Are smells triggers?
Post by Bruce Hart on 06/18/13 at 10:45:08

I've wondered how prevalent this unacceptance of inhalants(fragrances etc.) as triggers is among doctors. Is it only encountered among non-MCAD-specialists?

I've recently had a lady ask me about this as well, as a mayo doctor didn't want to discuss anything about inhalant triggers with her.

This skepticism by this doctor in the original post is very weird. I sure wish our mast cells discriminated against inhaled molecules that reach them and were like "Oh you're from inhaled origin so I will just ignore you". lol

And when he says "there's no tests or evidence that it happens". They would know that someone reacts to inhalants the same ways they would know people with MCADs react to ingestants, such as by patients telling them they get symptoms rapidly with fragrances etc. and with measuring mediators before and after a controlled provocation, or by exposing the abnormal mast cells in petri dish to inhalant chemicals.

He makes it sound like there's no way to demonstrate that people with MCADs have intolerances to inhalants as if they have tests that only work when people ingest or touch things.

I can't conceive of how they could possibly have evidence people react to ingestants but lack evidence on inhalants as triggers except if they only neglected testing or listening to patients concerning inhalant triggers.

If I was a doctor that had never heard from a patient that inhalants triggered their symptoms I would think, "even though I've never heard about it before in the scientific literature it makes a lot of sense since in MCADs they react to all kinds of molecules and it wouldn't matter how the molecules reached the mast cells." And I would be interested and ask the patient more questions.

Instead the doctor seems to be like "well inhalant intolerances in MCADs have been neglected and ignored in the scientific literature so I'm going to do the same when patients bring it up to me."

That really annoys me that it seems neglected like this. Why is this anyways? Is it uncommon in MCADs or what?

I wish there was some reputable website where I could link my family to a video or article discussing how inhalant intolerances can be severely disabling for peole with MCADs. Right now a lot of my family apparently doesn't believe there's a physical disease that can cause this and it must be mental or me being a paranoid health nut.

Title: Re: Are smells triggers?
Post by brigitte on 06/18/13 at 14:14:44

I could not agree more. Triggering from fragrances, ANY kind of fragrance, is my BIGGEST trigger. It sends me into a tail spin for days! When I told my "immunologist" (she has no idea what she's doing) about my reactions to smells, she said it had NOTHING to do with my autoimmune urticaria, and that smells are just "irritants" to me. I told her she should go with me to a laundry mat and see what happens! (Not that I would ever really subject myself to that) she just brushed me off. Unbelievable. Exactly, it is accepted to be intolerable to foods, medications etc. but not poisonous inhalants! Makes me sooooo mad >:(.
These joe schmo doctors have NO idea what we go through. My doctor like to place much of my symptoms under "anxiety". It's so disrespectful and callus.
I hope I get to see Dr. Castells. I'm assuming she is very accepting of these triggers.
And by the way, my family is the same way. My husband kinda gets it, but I think he does it to appease me, not because he really understands what it does to me. And my parents! OMG! They do nothing to help me. They wear perfumes and colognes, use scent detergents. It make me so angry that they have not changed their lifestyle one bit to help me. I've started to tell them when they invite us over that I can't be at their house anymore because of the bombardment of fragrances. Grrrrr..... If I was allergic to peanut butter, would they give me a peanut butter sandwich for dinner? Lol NO! (At least I don't think they would :D)

Title: Re: Are smells triggers?
Post by Bruce Hart on 06/20/13 at 11:35:53

Hi Brigitte. My closest cousin, mom and best friend believes me, but I think about everyone else that knows about it doesn't believe it's a physical disease. Though I don't even bother trying to convince most people unless I will have to be around them regularly and need them to accommodate me.

Yeah it seems like any time doctors don't understand something they want to attribute it to stress or anxiety even if you tell them you're not stressed or anxious.