Mast Cell Disorders Forum - Extreme Sensitivity to Smells

BrynnKaitlin

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Extreme Sensitivity to Smells
01/03/12 at 09:39:07

Hello, Everyone!!

I have been having a really hard time dealing with my extreme sensitivity to smell. I just turned eighteen a few days ago, and I'm trying to get through my last year of high school. I've been on homebound for the past two years. My sensitivity to smell is SO SEVERE!!! Anything... Air freshener, hairspray, perfume, cologne, lotion, deodorant, cat litter, burning leaves, cleaning chemicals, and bleach will just set me off.

(My first trip to the Emergency Room was my first Asthma attack (before we even knew that I had asthma.) I was cleaning out the litter box... I poured fresh litter into the box (as I had done hundreds of times before) and I went into respiratory distress. It ended up turning into a full blown asthma attack. )

Now, it seems like I can't do anything without having problems. I went out to eat with my family and our family friends, and one of our friends was wearing strong perfume. I went into Anaphylaxis. I can't go to the mall, because there are a million different smells, and stores that spray so much perfume into the air that you can smell it ten stores away. We got a mask to help with strong odors, but it doesn't get rid of the smell completely.

Do any of you have this problem? It is much more difficult to avoid a strong smell than it is a food (I have severe food allergies, so I always have to be careful. I've gone into anaphylaxis several times due to nut traces.) because you never know where a strong smell is going to show up. I haven't been diagnosed yet, but we believe that I have Systemic Masto or MCAD. I am seeing Dr. Afrin in February, and I have already had blood taken and have done the 24 hour urine for the tests that he has ordered. Hopefully he will be able to help!!! Roll Eyes

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Re: Extreme Sensitivity to Smells
Reply #1 - 01/03/12 at 12:57:42

Sorry to hear about your troubles. I am in the same boat and agree that it is SO limiting and nearly impossible to avoid. I've turned into a total nut case sprinting outside whenever there's a smell. I'm on a lot of meds so have no options to add any but maybe there are meds that would help you. What are you taking?

My med list is on my blog.

I get outside as much as I can and am trying to get my family to adjust so they don't expose me but it's so hard for people to understand it.

You should definitely be evaluated for masto/MCAD. I have ?MCAD.

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BrynnKaitlin

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Re: Extreme Sensitivity to Smells
Reply #2 - 01/03/12 at 13:53:48

I am taking Tagamet twice a day, Allegra every night, and Singulair for my Asthma. I am also using Alvesco, a steroid inhaler, daily to try and keep my asthma under control. I am drinking Benadryl like crazy, because I seem to be reacting to everything- even things that I did not test positive as being allergic. I went through 4 or 5 bottles of benadryl alone just during the month of December. (I can't remember everything I said in my previous post- I have brain fog as well!!)

Luckily, my family has been very supportive as far as my sickness goes. My Mom and Dad have both been working very hard to find answers, and my younger sister and brother have adjusted the way they live to make things more comfortable for me. I am very lucky to have such a supportive family!! Even though I am the one that is sick, it affects my family too.

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DeborahW, Founder

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Re: Extreme Sensitivity to Smells
Reply #3 - 01/03/12 at 15:43:20

Hi Brynn,

I used to be uncredibly sensitive to smells also! Like you, they would just start up my anaphylaxis.

I am glad that you are seeing a specialist soon enough. Please keep us posted on what he says. So, I am curious, you mention allergies a few times. Do you have allergies? It is common to actually not have many allergies if you have mast cell disease. Some of us have both allergies and masto, though.

You seem undermedicated for as many sensitivities to triggers as you have. Perhaps you could ask your doc about adding zyrtec to your mix of meds? If you took the allegra in the morning and the zyrtec in the late afternoon/early evening, you might get better relief. Once you figure out the proper meds for you and learn how to avoid your triggers, then your body will stabilize and you should be able to be around those smells again. I can now be around all smells now due to my meds, except onion and garlic. Nope, those still get me sick!

If you have mast cell disease, and even if you don't, I think we can help you learn so many things here, Brynn, that will help you -- especially in regard to learning how to track and identify your triggers and how to adapt your lifestyle to avoid those triggers and yet lead as normal a life as possible.

Take a look at the section of the forum titled, "Start here". It contains important posts that will be helpful to you! I wonder if you are keeping a food/medical diary? That will really help you discover what your safe foods are.

So, before I forget: HAPPY BIRTHDAY!! I am glad that you did not just turn 21, because then you might have gone out drinking and (let me warn you) for people with mast cell disease, alcohol is one of our biggest triggers. So....

Well, I am falling asleep, so I must go. Let us know how you are doing!

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« Last Edit: 01/04/12 at 03:33:42 by DeborahW, Founder »

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BrynnKaitlin

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Re: Extreme Sensitivity to Smells
Reply #4 - 01/04/12 at 04:03:09

Yep, I have allergies. My diet consists of beef and chicken (with salt and pepper only), berries, and asparagus. I'm literally allergic to everything else, or it makes me sick- even though I didn't test positive to being allergic.

Allergy List:

All nuts, Corn (corn syrup is in everything!!), Garlic, Onion, Any form of millk, rice, most vegetables (including lettuce/leaves... No salads for me!!), all fruit except for the berries, soy, yeast, and many more!!!

One thing that I'm wondering, is if these are true allergies or just mast cell triggers? I tested positive to almost everything in the skin prick test, but I'm curious as to if i'm just reacting because they are triggers?

I've also noticed that caffeine is a HUGE problem for me, as well as carbonation. Possible trigger? I am keeping a food/update journal. I write down any time that I get a rash, notice bad heart palpitations, or anything else.

Thank you so much for your help! I am very glad that I stumbled upon this forum. I have learned so much from everyone.

Brynn

(I have tried to attach a picture of my first skin prick test... Hopefully it will show up!!) Roll Eyes

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Re: Extreme Sensitivity to Smells
Reply #5 - 01/04/12 at 19:24:36

That is a lot of allergies Brynn! Do you know if your doctor did serum IgE allergy testing to correspond with the prick tests?

I think you're right the prick could be a masto trigger or allergic IgE response. Though many masto people are negative to the prick tests to but still react to the substance.

Has your doctor checked your total IgE level?

What medications are you taking?

Hang in there! Things will get better!

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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Extreme Sensitivity to Smells Reply #6 - 01/04/12 at 19:25:53 oh, p.s the picture didn't work for me
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BrynnKaitlin

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Re: Extreme Sensitivity to Smells
Reply #7 - 01/05/12 at 12:50:28

I have no idea which tests have been run, but my Mom has a binder with all of my medical records that we take to every important doctor appointment. My Mom probably knows, so I need to ask her in the morning.

They had a "test run to check for Mastocytosis" but it came back negative. I'm not sure what exactly they were looking for with the blood test. I went up to MUSC a few weeks ago and had eleven vials of blood drawn, so I suspect that they probably checked IgE along with that batch of testing for Dr. Afrin's test orders.

I am taking Tagamet twice a day, Allegra, Singulair, LOTS of Benadryl, and Alvesco- A steroid inhaler for Asthma.

The picture didn't show up last time I tried to post it either. Maybe I'll figure out what I'm doing wrong. lol Wink

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DeborahW, Founder

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Re: Extreme Sensitivity to Smells
Reply #8 - 01/05/12 at 16:02:00

LOL. That is funny about the blood test to test for Masto....because it doesn't exist! Now, they may have been checking your tryptase levels, which simply indicate your histamine levels. However, that certainly is not a deciding vote of of one has Masto or not. In fact. the results of that can go 2 separate ways: if positive, there is a chance you could have Masto (or some other conditions). If negative but you have all the Masto symptoms, then you could have MCAS (Mast Cell Activation Syndrome). So either way, the test is not sufficient by itself to tell you what you have.

In order to diagnose Masto, a bone marrow biopsy is needed by a masto specialist at one of the few locations in the country that actually knows how test for Masto and how to collect the specimen without screwing it up for Masto testing. There are not too many places in the US that do this well, but you are safe going to Boston docs or Mayo for a BMB. you don't need to jump and do this if you find a doctor who can identify your symptoms and try you on the proper meds to see how they help. You are going to Dr. Afrin soon, I believe you said. Some here see him and like his compassionate nature and willingness to help. I don't know him, so I cannot comment either way. It will be great once you can see a specialist, though....although if it were me, I would be headed right up to Dr. Castells or Dr. Akin in Boston instead. My philosophy is to always jump straight to the top for the quickest and best result.

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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Extreme Sensitivity to Smells Reply #9 - 01/06/12 at 09:19:27 Keep us posted! Hope you feel better! I'm learning to adopt a scent free lifestyle but trying to head out whenever I feel brave enough to give my system challenges and see if it can handle it
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PamH

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Re: Extreme Sensitivity to Smells
Reply #10 - 02/11/12 at 13:42:52

I have real issues with smells. Just tonight my husband put a parmasian,asiago cheese mix on his pizza and I had to run outside. (Its like 19 degrees outside) I could not stand to smell. Immediately made my stomach sick! There are several stores I can not shop in due to odors. I have to use unsented everything!
I can completely relate!
Pam

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Starflower

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Re: Extreme Sensitivity to Smells
Reply #11 - 02/11/12 at 14:02:47

I've had positive skin tests for TB plus allergies to celery, peanuts, and almonds... all of these were eventually determined to be false! I think the problem was my hyper-reactive skin (dermatographism), not the actual allergen. Conversely... I've become crazy allergic to latex, but I don't test positive on RAST. Go figure. Mast cell disorders are weird.

Take home message: symptoms are what really matter. It's definitely possible that you have many, many triggers... but is that the reason you took all of those foods out of your diet? (Or did you do it based on the skin tests alone?) The danger in such a limited diet is that you can become allergic to your "safe" foods Undecided

Heather

ps - Welcome to the group!

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Re: Extreme Sensitivity to Smells
Reply #12 - 02/11/12 at 16:04:22

So bizarre about your allergies heather! I came back IgE positive to hazelnuts but have been eating them my whole life just never liked the taste, so am now avoiding but want to get retested when healthy in case it was transient.

I agree with you I declined skin testing because if you just barely touch it it goes crazy red so I don't see how it would be accurate.

Not sure if it's the same for you but I started an elimination diet because of constant flushing with eating and constant reactive symptoms to see if I could identify any culprits. Am now slowly advancing the diet. It wasn't recommended by my docs

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Extreme Sensitivity to Smells Reply #13 - 02/11/12 at 18:25:24 Heather, When you were on the elimination diet, did you also rotate foods, so you wouldn't become allergic to them?
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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: Extreme Sensitivity to Smells Reply #14 - 02/12/12 at 01:07:49 I once had an allergist who said he would never so skin testing on me due to the dangers of anaphylaxis. He said all mast cell people should have their allergy testing done through blood allergy tests instead. I entirely agree with him
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