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My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Guest Blog - Spring Allergies

Guest Blog - Spring Allergies

How To 'Make It Work' When Spring Hits and Your Allergies Are Trying To Kill You
By Tammy Kosbab

Yesterday morning I woke up swollen, inside and out (angioedema from allergies).  It wasn't the kind of swollen where a stranger would look at me and be able to notice.  It was more the kind of swollen that I had experienced my entire life and that I thought it meant I just had a chubby face.  I could feel that old and familiar feeling as soon as I woke up and tried to move because ALL of my muscles ached, my head was throbbing, my eyes felt a little puffy, and I really, REALLY didn't want to get out of bed.  Similar to the past, I couldn't understand what I did to cause this and I knew to forget even trying to figure any of that out because the brainfog was thick!  It seemed my entire body had turned into muck.  

Despite my inability to think clearly, there is one thing that I knew I had to do, so I reached for the medication that is ALWAYS within my reach because I know it helps me significantly. I took the Gastrocrom.  As I crept out of bed, went to the bathroom and caught a glimpse of the mirror, I saw my "old" face (the face I used to think was 'normal').
There was a red rash on my face, a large indentation and two blisters where my skin must have tried to swell under my CPAP mask when I was asleep.  To test the new diagnosis, I stepped on the scale to see if it was true:  Literally overnight I was up about 6 pounds from my "post-diagnosis" weight.  Wow.  I wondered if I had felt worse (is that possible?) when in the past I had been up 9 pounds in 12 hours or less.  

Im still amazed that ALL of the seemingly unrelated symptoms come back.  Even today, when I stand up too fast, I get dizzy.  When I am upright for too long I get tired. I had burning tongue/mouth sores, bleeding gums, heart palpitations, nerve pain, muscle pain, fascia pain, eyeball pain, ear pain, joint pain, and in case I forgot to mention it - I had pain.  I used to be like this all the time.  Sadly, this had been my "normal" my entire life. 

Things have been different for me for the past 4 months because now I know why it happens and what I can do about it.  I have Mast Cell Activation Disorder (MCAD).  

Here is a quick and hopefully simple explanation of how I understand this for those who don't quite understand it:  
Mast cells are cells in the body that contain histamine, heparin and other "mediators."  Mast cells are commonly known for releasing these mediators for things like strawberries, peanuts, mold, pollen, grass, and other common allergens.  These are called specific allergens (IgE - mediated) and this is what they look for when they do a skin prick test.  THIS IS NOT MCAD.  

MCAD is when a person has a normal number of mast cells that are easily triggered to release mediators.  It's like mast cells with insomnia or ADHD.  They don't shut off and they overreact and release mediators to nearly anything in the environment (IgA, IgG, IgM).  

The resulting histamine in the body wreaks havoc!  If you want to know what MCAD can do to a person just research the word "histamine."  Histamine makes blood vessels permeable and this is why fluid leaks out of them and causes swelling.  

Where are blood vessels located?  All over, mostly INSIDE the body though, right?
Can we see them? Not usually. 
So if a blood vessel in the ____________ (insert internal body part name here such as stomach, colon, brain, spinal column, muscle, etc.) is leaky, can a person see that this internal body part is swollen?  Can a person feel it?  

Ahhhhhhhh. Well!?!?!  I certainly can!

The day before this happened it was a nice spring day, fresh-air (pollen!!!!!!!) and all.  I tried to stay inside but have you ever tried to stay away from the air?!? Probably my biggest mistakes that day were slamming a bottle of apple juice since I haven't accustomed my "overactive" body to it, and I also forgot to take one of four doses of the Gastrocrom. Live and learn!  

Gastrocrom is a medication that "calms" down or stabilizes the mast cells.  It's like taking a bag of oranges and making the holes in the net smaller so the oranges don't fall out so easily.  Picture the net is the mast cell that holds the histamine and other mediators, which would be like the oranges.  

But once the histamines are released they circulate in the blood until they find a place where they can plug in and be utilized.  These are called histamine receptors.  There are 4 receptors in the body, but only two of them have "known" medications that are called H1 and H2 blockers.  I take the H1 blocker called Allegra in a high dose and the H2 blocker Pepcid in a higher than normal dose under the guidance of my doctor.

I will be recovering, retightening, unswelling, relaxing, getting work done AND having a girls-and-puppies-only day with a friend tomorrow.  The fridge and toilet are also close by so I think I should be good.  

If this sounds like you or if you want to know more, please do research and find someone to help you.  When finding someone to help you, remember this thing: MASTOCYTOSIS IS A CONDITION OF TOO MANY CELLS and it is not MCAD.

My favorite resource is the book: Never Bet Against Occam by Lawrence Afrin.  I recently got to meet him at EDS Wellness's retreat Wellapalooza and I had a relatively long conversation with him about this, in addition to seeing him present about MCAD twice in two days. 

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