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Another Bad Episode


Victoria
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I was in my son's garage while he was working on my car yesterday. He had the wood stove stoked (stinky) and I could smell the catalytic converter on my car. I had a horrible night last night and I didn't sleep a wink (yawn). I'm still having diarrhea and polyuria today and my adrenaline is through the roof. I tried to sleep today and couldn't because of the adrenaline overload and countless trips to the bathroom. The odor from the stove and catalytic converter definitely pushed me over the edge.

The other thing I've noticed is that I've developed complete intolerance to all nuts, but I don't have a nut allergy. If I eat just a handful I wake up at night with horrific GI pain. Darn! I love nuts so I'm hoping this passes.

Sure grateful you've all given me food for thought about MCAD and anaphylaxis. I'm paying close attention to environmental stimuli and connecting the dots. Thanks to all!

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Ohhhhh, I forgot to mention smells- they are the worst. The smell of a self-cleaning oven will do me in, especially on the first cleaning. And combining scents is even worse (as you learned!) A few years ago we put in a swimming pool in our backyard. The day they sprayed the pebble tec, I cleaned my oven for the first time- anaphylaxis. Even Febreeze will almost completely shut my bronchial tubes. My lungs flood with mucus the second I smell it.

I think I could tolerate a wood stove IF it were well ventilated but coupled with the CC- forget about it. So sorry, Victoria.

I have come to wear everything (make-up, lotion, shampoo, etc.) scentless. If the pleasant smell of Febreeze can affect me so severely- what would perfume do??? Also, scents attract bees, wasps, hornets. We don't need that.

I had an awful reaction to pistachios once- never had them again, but continue to enjoy all other nuts. Experiment within the nut family. There may just be one culprit.

What meds are you taking now? They will help to stabilize you. Once you learn triggers, it'll get easier

Hugs-

Julie

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Smells are a HUGE problem for me. Don't know if it's MCS, part of POTS, part of CFS, or possible MCAD.

Julie- how did you get your MCAD diagnosis? Did any testing show it? If you have answered this question before, sorry... I don't remember. :huh: I had a Doctor look into it briefly for me, but I think he did the wrong testing (which of course came back negative)and then never followed up with me.

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I finally got a DX (for what it's worth) from Dr. Marianna Castells, a mast cell researcher at Brigham & Women's in Boston. I have since identified a doctor named Lawrence Afrin, who treats MCAD patients in Charleston, SC.

My DX is based on easily observable symptoms, a detailed history, my response to meds, including epinepherine. I have never had a high serum tryptase or methylhistamine level caught, but I've rarely tried :rolleyes: Once I found a med regimen that worked, I stopped seeking answers. I have a great local allergist (from Mayo) who treats me on an ongoing basis.

Where do you live, Naomi? I may be able to recommend a doc?

Julie

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Even Febreeze will almost completely shut my bronchial tubes. My lungs flood with mucus the second I smell it . . . I have come to wear everything (make-up, lotion, shampoo, etc.) scentless. If the pleasant smell of Febreeze can affect me so severely- what would perfume do??? . . . Experiment within the nut family. There may just be one culprit . . . What meds are you taking now? They will help to stabilize you. Once you learn triggers, it'll get easier

The smell of Febreeze doesn't bother me, but countless other things do. I can wear one specific perfume, but I have to be very careful walking through the make-up and fragrance departments and being in crowds where women are apt to wear perfume. I also get what you're saying about your lungs flooding with mucus. Mine can also clamp shut, depending on what the trigger is. A self-cleaning oven is a very good example.

I've given up on nuts for a while because I've reacted to two different types and the additional pain is too much right now. But I'll get back to them later after I get some other issues sorted out.

I'm taking Claritin, Benadryl, Ranitidine and Zantac and I am improving! It really isn't difficult to pinpoint triggers now that I'm paying close attention. I suggested Singulair to my internist but he prescribed Albuterol instead. :( Albuterol makes me extremely tachy and I can feel the adrenaline begin to surge a few minutes after inhaling it.

My Mom and one of my sisters react the same way to certain smells, but they don't get horribly ill like I do. They say it gives them migraines and makes them feel dizzy and sometimes confused and short fused. I've been meaning to ask, does MCAD have a familial component, or could they be dealing with something entirely different?

With much appreciation and hope,

Victoria

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Julie - I agree that reaction to medication can help with diagnosis. It's great that you found something that works. Do you think POTS and MCAD are two seperate diagnosis or intertwined? What symptoms improved with your medication? I am in Northern NJ and not having much luck with Doctors around here. Definitely if you can recommend someone, please let me know.

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Hi Naomi-

I'm guessing that your best bet will be Dr. Marianna Castells at Brigham & Women's in Boston. There are few mast cell researchers in the US- I think she is the closest to you.

YES, my meds have improved (almost normalized) my symptoms- ALL of them. Last summer, I did an experiment & stopped some/most of my meds because i was feeling so well.. Big mistake. My symptoms (allergy-autonomic) were back with a vengeance. Finding the right combo and dosages is tricky and takes time, but the pay-off is so worth it.

The meds treat, and don't cure, my condition. An illness or reaction to can set everything off again even with meds...but I can usually regain homeostasis within a few weeks of becoming well or stopping exposure to the new trigger.

Julie

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I also have a lot of trouble with smells - particularly fragrances in laundry products, but others as well. My reactions tend to be more the headache/dizziness/feel awful kind.

Victoria, it might be worth seeing if you can try mast cell stabilizing meds like Nalcrom/Gastrocrom. It helps me a lot with GI stuff I think. It's an old med that's considered very safe and it's what Dr. Castells recommended I increase since I still have some gastro issues (she also added Ketotifen which I just started - another anti-histamine/mast cell stabilizer).

With regard to whether these things run in families and how POTS and MCAD interact, check out the POTS thread on MSC - it appears to be complicated, but Sue's post of the NIH study looking into hereditary mast cell issues suggests at least some people are thinking this way:

http://clinicalstudies.info.nih.gov/detail/A_2009-I-0086.html

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Yeah, the whole familial thing is in flux, especially given Dr. Castell's latest stance :(

Anecdotally, MANY with mastocytosis and MCAD have many affected family members. The researchers are slow to get on board with this and document it. It may literally be up to US to do this & pass the information on to them. Here is a research study that showed that 8% of the 142 studied (mastocytosis patients) had affected family members: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292130/pdf/pone.0001906.pdf

I have 4-5 affected family members. I am the only one with a formal DX. The others have "idiopathic anaphylaxis" which is different terminology for MCAD depending on which doctor you see. This is real, not just anecdotal. It just doesn't seem to be well documented.

Julie

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I will get my internist's attention about MCAD and the meds you mentioned, but I've only seen him once so far. I'll attempt a discussion with him at my next appointment.

That link is very interesting. Piebaldism; does it only pertain to a white patch of hair, or can it be any color? I have a Granddaughter who was born with a wide stripe of very dark hair and she also has some skin issues.

Is this study actively recruiting, or has it been completed? Has anyone here participated?

Thanks for your reply. It's full of good information!

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292130/pdf/pone.0001906.pdf

I have 4-5 affected family members. I am the only one with a formal DX. The others have "idiopathic anaphylaxis" which is different terminology for MCAD depending on which doctor you see. This is real, not just anecdotal. It just doesn't seem to be well documented.

Julie

Well, I'm all in with both feet if researchers aren't yet on board. 8% is a large-ish number for it to be anecdotal or coincidental. Interesting about your family members. Are they not diagnosed by choice, or are they having a difficult time with physicians?

I'll have to wait until tomorrow to read the PDF, I had a colonoscopy/endoscopy today and I'm not up to par just yet. :blink: But I am looking forward to the read. Thanks so much!

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