I know several on here have inhalant intolerances (fragrances, smoke, paint etc.) but does it seem common to you? Has anyone heard an MCAD specialist say that it's common among their patients?

I've heard from a few people whose doctors that are aware of and treat their MCADs, but not specialists, are skeptical of inhalants being triggers and/or want to avoid discussing it. Surely at least the MCAD specialists believe symptoms can be triggered by inhalants.

Almost all websites on MCADs neglect to mention inhalants as triggers and I've never seen it mentioned in any studies. Why is this? Are they just outdated, ignorant or skeptical? It's really annoying because when people search online for answers to why everything they inhale triggers symptoms like brain fog and headaches all they come across is multiple chemical sensitivity and get led down the wrong path and some waste a lot of money on MCS quack doctors and useless treatments.

I never wasted money on quack doctors, but I would have went to an MCAD doctor before I was too disabled to go had I known about MCADs a few years sooner. And so I'd probably have found effective treatments for me by now and be drawing disability or not even be disabled because my family may have been convinced by the doctor that this disease is real and not just a delusion that they don't have to accommodate.

I'm very thankful for this site as it does discuss inhalant intolerances. It's almost the only one. I get pretty annoyed when reading other websites or hearing MCAD specialists speak on videos and see this completely neglected.

Hey Bruce,

I understand where you are coming from and yes, it is definitely frustrating that this is something which remains unaddressed.   Yet, I think that this is because it's recognized that whether the chemical is airborn or in any other form that this is what masto is all about, chemical related reactions.  When you get down to the nitty gritty of how the body processes anything, it ALL boils down to chemical reactions be them organic or sinthetic.  We're talking about how foods and medicines break down in the body and how the body metabolyzes things.  It all boils down to chemical reactions.   So, if you think about it, whether the chemical is airborn or injected or in a pill or food form, it's still a chemical related intolerance.  And when you talk about the MCs and how they not only must process any kind of chemical which comes its way, whether it is coming from within the body as an indirect MC degranultator or as a direct MC degranulator, it still is the very same kind of process.  So, for this reason I have a feeling that in context of a MC disorder, making the link to airborn chemicals versus other means of causing the chemical reactions is really not the issue here.

Here, let me see if I can make it easier for you -   MCs are known to react to specific substances like opioids and radiographic contrast.  Then you have substances for which the MCs have receptors for them, like anxiety will trigger the stress system and the MCs are full of receptors for these chemicals.  Then you have things like heat or cold which will also trigger the stress system and again the MC is full of receptors   for these objects.   Then if you are a person who has natural allergies, the MCs are going to have receptors to those enzymes and thus trigger.   When we are talking about a MC disorder then you are talking about a defect upon KIT which is the membrane covering the MC and this is dysfunctional.  So, that means that it's trigger happy and will set off with the slightest provocation and sometimes even without provocation.  So, when you join everything together, you make for a group of people who are rather unhappy due to all of the "allergic" reacting they go through.

Now, the issue here is what sets us off?   I've always been on the sensitive side to perfumes and knew from my childhood that some smells would give me headaches, but I could, for the most part, use perfume and not have any issues with it.  That was up until about 3 years ago when my son was given an particularly HORRIBLE perfume which was extremely strong.   I rode in the car with him for no more than 5 minutes and barely got home in time to go into anaphylaxis, vomiting included, something which rarely happens with me.  That was the last straw and it totally lowered my resistance to all perfumes!  I had to give away all my perfumes!  The next event was a year later when I got into my newly cleaned car on a hot day and the silicone used to make it look nice was cooking there in the car.  I didn't realize what was triggering me, the overheated car of the silicone as I drove myself to the hospital and barely got there in time!  I'd been around the silicone before and I'd triggered from the overheated car, but never to that extent so we know it was the silicone - the combo was the deal!!!    But up until the perfume situation a year prior, the silicone would not have triggered me.   Somehow the perfume is what lowered my tolerance and activated me to inhaled substances!

Since then I've found that the more unstable I am the more heightened is my sensitivity to smells and chemicals be what they may.  My tolerance become incredibly bare minimum and requires antihistamine intervention asap!   The key is trying to maintain some kind of stability and I've found that Singulair is key to this for me.   Yet the more stable I am, the harder I am to trigger through smells as well as foods and other substances.

I hope this helps!

Lisa

Hi--I just wanted to comment on this topic too.  I didn't have an issue with smells until last December (my husband's cologne on a 2 hour car ride caused me to have a bad reaction).  I am still new to all of this (have had symptoms for a little over 2 years), so maybe that's just the way it progresses.  I had constant reactions for 5 months this winter and spring and every smell and food set me off again and again, until I got on the right medications and started the low-histamine diet.  What Lisa said is just how I feel about the smells.  Now that I'm feeling better, I can handle smells for a little bit.  I just had a reaction last Friday from a lady's perfume that I was exposed to at work for 30 minutes, combined with my daughter using Aveda shampoo (the smell sets off reactions for me).  My throat closed up and it got hard to swallow and talk.  I ended up taking prednisone along with my antihistamines.  It seems like if I get too confident with how I feel, something will knock me down.  Lisa, if you read this, I just got a script for Singulair.  Did you have to start slow with it, and does anyone use the generic?  I'm hoping that it will be a good medication for me.  Bruce, it is really hard to avoid triggers, because you have to avoid living normally and it's taxing.  I just wanted to comment that after I react to something strongly, it takes a while before I feel better.  The prednisone is the key for me.  If I don't take it, things don't calm down for a long time.  Have you ever taken prednisone?   Good luck and I hope you feel better soon--Sarah

Sorry you guys for not getting back right away!  I've been having just awful issues with my internet and I'm trying to find a means of resolving it!  Everything in the name of "economy" began this problem but now it's just an issue that I've got to find some kind of permanent solution which I can afford!!      I have also been invited to help a group of doctors here in Brazil in their aim to begin a Reference Center for mastocytosis here in Sao Paulo.  I've been trying to help Brazilian patients find doctors and understanding.  It was Dr. Escribano who asked me to help them since he is trying to help these doctors start up this center.  He knows that I have a burden to help others here in their struggles to find understanding and help and since everything published is in English and there is nothing available in Portuguese which is reliable or up to date, he wants my help.    So, this has been keeping me very busy with what little online time I've been able to get!    So I'm sorry!   I have a commitment to this forum which I continue to honor since I myself have gained so much help and support here and which is a home for me too!!   So I do apologize!!!



Now Bruce, how long does it take me to return to being less sensitive?  Good question!!   I'm finding that it really depends upon me and how much I will rest and allow my body to heal.   If I don't listen to my body and just keep pushing, then I remain sensitive to smells and other triggers for weeks.   But if I respect what my body is saying, that it's been activated and is in a reactive state, more than it's baseline, and I halt all activity and put it to an absolute bare minimum, staying at hoe as much as possible and sleeping as much as possible, then the flare can be over in a matter of days.

This is the fine line we all must learn to walk with masto be it SM or MCAS.  We can get into a reactive flare and if we listen to what our body is saying and do everything we must to help cut down the reactivity, then it responds and settles down.   There is a need sometimes to up the meds.  I will use prednisone purely as a last desperate means of halting the reacting for it's dangerous medicine and should not be taken lightly.  My doctors have given me instructions to use it, but I very honestly will avoid it after I had a hypertensive crisis of 230/120 while I was tapering off prednisone use for a prolonged allergic reaction following a colonoscopy.  Scared the willies right out of me!!   Anaphylaxis will tell you that prednisone forced her adrenal glands to stop producing and put her into an adrenal crisis, a deadly situation!  So, if I get into a flare, I will increase my antihistaimines to 3 x daily and see if this helps to cut some of the reacting as well as staying home from work and keeping my home duties down to the barest minimum until I'm better.  

As for Singulair, Sarah, I am a real fan of this medication!   It's tremendous how well I do on it.  I've never had any real issues with taking my meds and I've never had to work up to any of them.  I take Singulair 2x a day 10mg.  I am also now taking Bilaxten, an new antihistamine which may not yet be available in the US, but is approved in Europe and here in Brazil.   It's considered superior to Allegra and I'm finding that to be true.  So, when I'm in a bad flare, I will take the antihistamines up to 3 times a day but keep Singulair to twice daily instead.  I didn't have to work up to it and I do take the generic form since it's so very expensive.   Most people who have trouble with generics are not really having issues with the medication itself but the fillers.  When taking medications often we will react to the inert ingredients.  So this must be considered too.

Now, Future, about your statement about surgery, I think that you need to speak with a high level surgeon, perhaps one who is willing to speak with Dr. Castells.  I know that surgery and masto patients are a combo which does not mix well, but unless you have major heart problems or something besides just masto, I don't see that you should not be able to undergo surgery.   Your doctors may be jumping to those conclusions without really knowing what they are talking about.   My reason for saying this is because there really is no surgery more dangerous to a masto patient than open heart surgery.  This surgery is extremely dangerous to a masto patient because the patient is under anesthesia for at least 7 hours or more and worse is that the surgery requires being on the heart/lung bypass machine.  This machine stirs up the blood and creates an inflammatory process which can be very dangerous for some people.  I had to face this surgery and I was the 2nd known patient in the world to have to undergo this surgery in 2010.  The first patient is a Spanish woman and she was under Dr. Escribano's care.  She is an SM patient but her reactions are less severe than mine and yet with the proper care and attention by the entire surgical team, with appropriat preparation of the patient and everything which surrounds them, there is no reason why a masto patient can't get through any surgery especially in using the REMA protocols.   I survived the surgery because the doctors took EXTREME care of me!!   I had several months of increased meds which Dr. Castells ordered and by keeping myself at home and very quiet we were able to gain more stability and control and by the time I went into surgery, I was in a fairly stable state.  

So, Future, I know that your doctors may think you can't get through it or you may think you can't do it, but I really think you need the opinions of surgeons who have worked with masto patients before saying that there is no way to undergo surgery.  If I were you and I could, you'd better believe I'd have that silicone removed.   Although I'm not certain it was the silicone or the perfume they put to cover up the silicone smell, it produced an impressive reaction nonetheless and I would do whatever I had to to get rid of those implants!!!

I hope this helps!!

Lisa

Ok I just wanted to add that I have seen mention of inhalants (fragrances, chemicals etc.) as triggers in  scientific publications on MCADs. One is below, just in case someone needs a reference for this because it's definitely not as easy to find as it should be.

From Dr Afrin: "MCAS patients also often report prolific - and odd - "sensitivities" (which they may not necessarily interpret as allergies) to assorted drug, food, and environmental provocations."[1]


[1]https://www.novapublishers.com/catalog/product_info.php?products_id=42603 (free pdf download)

So sorry fragrances are triggering you ladybug. They are one of my most debilitating triggers.

I have had to change to working from home so far because of it.

But there are some who work to get scent free offices etc at work. It's an uphill battle, but society is slowly becoming more aware.

The one good thing for me about identifying scents as a trigger is that once I cut them out of my life and environment the frequency of my reactions plummeted and I began to feel healthy and like my old self in my home environment. Showering at the end of the day and changing clothes if they've picked up scents (with unscented detergent and no fabric softener of course) has also been very helpful.

I really hope your workplace rises to the occasion to accommodate you.