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Mast Cell Activation


Dizzy Dame
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Hi all,

Starting in early December, I began to have strange nighttime crashes that were different from my "normal" POTS crashes. I even posted on this awhile ago, and I know several of you remarked that you'd had similar events.

A few days ago I had a mild episode here at Vanderbilt, and the symptoms were recorded, and a sample was gathered. My doctor, Dr. B, thinks these episodes could be attributed to a disorder called MCAD (Mast Cell Activation Disorder).

There is very little literature on this subject, but Dr. B described it as a spontanious flood of methylhistamines in the stream, as though I'm having a severe allergic reaction. The result is profound tachycardia, hypertension, flushing (especially in the face), nausea, sweating, shaking, numbness in extremeties and shortness of breath/difficulty breathing (all of which I experience during my nighttime crashes). These symptoms may be triggered by excersize, standing, or in my case, nothing at all.

The results of the test for methylhistamines won't come back for another week, but I thought I'd let you guys know since I know some of you have similar episodes.

There is a link between POTS and Mast Cell Activation as outlined in the paper below (written in 2002).

http://hyper.ahajournals.org/cgi/content/full/45/3/385

I hope this post helps point some of you with similar episodes in the right direction. I know the test can be done outside of Vanderbilt, so you wouldn't need to be hospitalized in order to get a diagnosis. Feel free to PM me if you have any other questions.

Also, is there anyone here with MCAD?

Cheers,

Lauren

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Lauren, I would be suprised if I had MCAD--I live on antihistamines and anti-leukotrienes. Every day I take zyrtec, singulair, advair, flonase and benedryl. Even on that stuff, I've had problems with anaphalaxis, atypical asthma, skin rashes/uticaria, hives, and a seemingly hyper-reactive allergic response to all sorts of things, including medications. When I was at NIH for testing, I got so puffed up and red that they actually allowed me to go back on all those meds during my stay. I've never gotten the skin biopsy, however, during one of my bigger episodes.

From what I understand, long term management with antihistamines is part of the treatment, so I've never persued it further.

Nina

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hey thanks lauren for the link and info.. wow that is very interesting..I"m going to share this info w/ the new cardio that i see in a few weeks..

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Morgan,

It's not a blood test, but a urine test. Mine was collected once an hour for four hours. They are testing for methylhistamines.

I know this is different from a regular allergy test, and can only be done accurately after an episode. I'll ask Dr. B tomorrow what the name of the test is in case you're interested.

Cheers,

Lauren

Edited by Dizzy Dame
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i HAD A SKIN BIOPSY TO DIAGNOSE MINE. There is actually quite alotof literature on this, see my derm Wed will get copies. I had my worst on my breast and vulva yes in deed. And the funniest or ironic part is that there is a vulvar specialist I got to see for the biopsy. I think once you have had a child these things become less intrusive?? Miriam :P

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When I was at Vandy in August, I had the same kind of thing happen. Dr. Raj talked to me about it briefly.. I believe their study on it just came out last February, because that was really the only relevant hit I found on google. I don't really understand it, except that while it's supposed to be related to mastocytosis, it's not quite the same... They did the 24-hour urine collection, and I guess as there's SO little research on it, it's harder to treat... Plus, with mastocytosis there's dermatological and systemic, and I believe the MCAD is related to systemic, so I don't think that it can be dianosed with a skin biopsy the way the other kind can. I could be wrong! That's just what I gathered from the mastocytosis website.

Keep us posted!

And I agree on the kids bit, Morgan!

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Dr. Biaggioni told me the same thing, that Mastocytosis and MCAD are two different conditions. MACD tends to be benign, whereas mastocytosis can be degenrative and life-threatening (not always, but in some kinds of mastocytosis).

Like Luckycharm said, Mast Cell Activation is relatively new, and there has been so little research done on it that everyone's still guessing. Dr. Biaggioni did say it was relatively treatable, and that most people he'd diagnosed with it improved greatly on antihistames (this is also stated in that paper on POTS and MCA).

He cautioned me not to associate the two disorders (Mastocytosis and Mast Cell Activation), they are separate.

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I am not sure where this fits in, but I take Zantac 75 every night for acid reflux. The last time I saw Dr. Grubb, he encouraged me to continue the Zantac because it inhibits mast cell activation. My primary care doctor wanted me to contiue Zantac for the same reason. I am not sure I understand this association correctly. If anyone knows why the Zantac can be indirectly helpful for POTS, please post.

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I have these flushing episodes that sound exactly like MCAD. But they only occur sporadically -- for instance, in the last year, I have had four, but three of them were last spring, and since going on a small dose of Effexor, I only have had 1 episode. Why would beta blockers be harmful to people with MCAD? I saw that in the article but failed to understand why this would be. I do take a beta blocker and wonder if it is a bad thing for me. But without it, I think my heart rate would be too high -- to the point of potentially causing heart damage over time.

Amy

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Wow your episodes sound exactly like mine. I get "night time crashes" too. I can get flushing episodes other times of the day, but it is almost always in the late afternoon or night. So is it treated with just a regular antihistimine? Also, has anybody heard if mast cell activation disorder can cause unilateral flushing? Like the other night, I had an episode, and my left ear was bright red and burning, but the right ear was pale. This happens with my hands a lot too. It is pretty crazy how random it seems to be. Keep us updated if you hear anything else.

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I have wondered about Mast Cell Activation Disorder for a long time. Like a lot of POTS people, I have had really wierd allergies all my life. I'm an anaphylactic too. From what I've read and discussed with my doctor, beta blockers can be dangerous because they block the chemical that can open your lungs up in an asthma attack. I take a low dose even though I'm mildly asthmatic because my quality of life is 100% better with them. I have to monitor my asthma very closely, though.

I have had a weird disorder my whole life that has to do with histamine release and I'm wondering if any other POTS people out there have it. It's called dermatographism (some people call it "slate skin"). Essentially, anything that scratches or rubs on my skin with any force leaves huge welts/hives in the exact shape of the mark. Hence, the term "slate skin" because you can literally write on your skin!

When I was younger it was much worse, but I still have it. My doctor said it's an innaproppriate response to stimuli on my skin and it's caused by malfunctioning mast cells that release a ton of histamines. I'm just wondering if there is anyone else out there with this?

Carolyn

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carolyn et al -

yeppers. i have it too (the dermatographism). never heard the "slate skin" phrase but it definitely fits! i have other skin issues & allergies too. i have to be careful with my compression hose as they can really be a problem, esp. if they don't fit right. same with "too tight" anything else.

re: mast cell i don't fit the profile entirely but i definitely have a lot of allergy issues, though not as many as some here. i had a rash (mini-hives of sorts) for almost nine months that was biopsied and found to be a histamine rxn but we never did figure out what to. allergy meds did nothing for it. it went away when i started on cortef (cortisol) but at such a small dose that i was told it shouldn't have been therapeutic for an allergic rash but whatever...it went away and i've now been off the cortef for a week with no return of the rash so - fingers crossed - it will stay that way.

i also get rashes from heat..i've been told it's likely related to my not being able to sweat properly as the less i sweat in a given area the worse the rash.

:) melissa

Edited by Sunfish
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Jan, Zantac and it's relatives are all antihistamines, but of a different type than benedryl, zyrtec, and the like. One is an H1 blocker (traditional allergy meds) and the other is an H2 blocker (anti heartburn meds). During an outbreak of hives, my allergist has me take both types. Also, when I was on Zantac (before the days of Prilosec) and had allergy testing done, I always had a delayed reaction (if I was going to have a reaction).

My former allergist thought it was because I took Zantac every day that I had slowed my allergic response --stunk though, because after every shot or test, he would make me stay at his office for observation for a full hour. I went for shots every week, so it sure chewed up a lot of my evenings. However, his rule proved to be life saving TWICE. I went into anaphalaxis for my first time as I was paying and getting ready to leave his office; next think I remember I'm in a room with him and a nurse and had already been pumped full of benedryl and epinephrine in both arms. The second time was a few months later and I recognized the sensations so I didn't pass out that time. Both episodes happened when they tried to increase the concentration of my shot from .005 % to .01 %. I never was able to tolerate them increasing the concentration of allergens past the lowest level available so I had to stop getting the shots.

Nina

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