So many people with dysautonomia have developed Mast Cell Activation Syndrome (MCAS). What is MCAS? It is simply when mast cells (vital parts of our immunesystems) disseminate the materials of which they are made at inappropriate times, triggering inappropriate reactions in their human hosts.
These reactions range from annoying to life-threatening. Has your throat ever started to close? Has your face turned red & swelled into monstrous proportions? Prepare yourself to click on the following link because Angioedema is not pretty. Now everybody & his brother needs an epipen! I have one. Do you?
MY EXPERIENCE
I started over-reacting to allergy shots. Had to be treated in the office several times with Benadryl, steroids & be watched for hours. It was serious & scary. When I first started out four years ago a weird thing started happening to me. Periodically during the day I would feel a strange “sensation,” followed by my face turning red, then my legs would ache terribly. Sometimes I got a headache, other times not headache. But I always got the “sensation,” red face, pain in the legs. I never associated it with allergy shots but I believe that was the cause. Even though days had passed since receiving the shots, then later weeks, this thing happened every day of my life for three years. I started the 4th year but then my father became terminally ill with heart failure & I was his caretaker. I couldn’t get my shots anymore. After Dad died I started up again but had to start going weekly again, after making it all the way to only once a month.
My reactions in the area of the shots were getting bigger & bigger all the time. Then the oddest thing of all: my face stopped turning red. I still felt the sensation, especially laying down in bed at night, but all through the day as well, along with the terrible leg pains. After a while I realized I felt less awful when my face had been turning red. Whatever was happening was sort of coming out. Now it was going in & that was worse.
Within a few months I started reacting to more than just the allergy shots. It was everything, including food. In my opinion, getting three years of allergy shots while I was already relapsing with dysautonomia, not having a treating doctor for dysautonomia because he\’d moved more than halfway across the country, and being off dysautonomia meds for years because I had been maintaining without them, was too much for my body to handle. I ended up in the hospital a few times – always on allergy shot day. Strangely enough, not from the shots. The allergist realized I was having cholinergic reactions to the very antihistamines that are supposed to STOP allergic reactions.
LUCKIER THAN MOST PEOPLE
Because I had such huge swelling (my entire upper arms were grossly swollen & itchy for weeks) at the injection sites I was instructed to take Allegra an hour before shot time. After three or four times I had my first anti antihistamine reaction. The doctor said I was taking a drug meant to stop an allergy attack when no allergy attack was yet happening – but that’s what I had been instructed to do. He told me to stop taking Allegra & switch to Benadryl instead because it was shorter acting. Same thing happened about the third or fourth time. At that point the doctor said I could no longer take antihistamines – except for Xyzal, which I took at night with no problem. Soon had to stop that as well. Zyrtec was tried. Same thing. My whole body would vibrate, my heart would race, I felt faint – and worse. I’m still luckier than most people. One of my girlfriends since childhood, out of the blue, started experiencing horrific disfiguring facial swelling (angioedema). She went to all kinds of doctors. She’s better now after finding the right doctor to prevent the reaction.
This part of my journey began in May 2019. I haven’t been the same since. It has affected my health in other ways. Had to temporarily stop certain medications I needed. Prolia, for example. I missed one shot & now my bone turnover is literally off the charts. I’ve gone from osteopenia to -porosis. Trying to get that straightened out as I write this. [UPDATE 11/2021 – not straightened out yet.] I did well allergic-reaction wise for many months without any untoward situations arising. Then suddenly my body totally over-reacted to a new pill to treat dysautonomia, which sent me back into the “over reaction” cycle again. I have to get that Prolia but I don’t want to go into anaphylaxis. On the other hand, I don’t exactly want to disintegrate from the inside out either! What lovely choices dysautonomiacs have. Prayer & faith are my best hopes & my best friends.
THANK GOD FOR DR. S
My GI guru & actual real-life life-saver, Dr. S, is working out a plan. He\’s cautious but not unduly so. After seeing my latest bloodwork however, my endocrinologist wants me to just get the shot already & be done with it. But she hasn’t lived through what I’ve lived through this past year, while Dr. S has lived it with me. Within a week or so we should know how to proceed. Prayers going I can get the shot, have no reaction, & therefore stop structurally disintegrating. [UPDATE 11/2021: Nope. Still can’t do it. It’s OK. Faith is sustaining me & my bones. UPDATE 3/2022: Still a no. I’m exercising in whatever way my body will allow, mostly stretching, isometrics & a little weight-lifting.]
I’m also going to stop saying things like: “structurally disintegrating.” Thought are things. What we focus on expands. I know better and will do better. [That phrase deserves a paper clip. Every time I slip up & think unhealthy thoughts I put a paper clip into a little container. It was astounding to see how many wrong thoughts I allowed into my mind & how many wrong words I permitted to leave my lips. Try the paper clip challenge. Eventually less & less start going into the container.]
Here’s an enlightening article by Dr. Tania Dempsey, well-known auto-immune & chronic disease specialist: What Is Mast Cell Activation Syndrome (MACS)?
Featured photo by Chris Tempfe | Mechanism of Allergy Illustration by Designua | Epipen Photo by David Smart
