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Yesterday I was in anaphylaxis most of the day. I had to take three doses of Benadryl and had my Epi-Pen on stand-by. I came so very close to using it but was thankful that I didn’t. Anaphylaxis is so frightening and it’s hard to know if the Epi-Pen should be used. When I’ve passed the point of blacking out, the needle goes in.

After all the sickness, I lost three pounds (the hard way). This morning I feel so weak. I’m shaking and my vision is very blurry. Part of this is from the Mast Cell Activation Syndrome side-effects. Some of the side-effects come from high doses of Benadryl. I don’t handle this drug well.

Having Ehlers Danlos Syndrome and Mast Cell Activation Syndrome together is common. Mast Cells are part of the immune system. This information from the Ehlers Danlos Society says:

Mast Cells, Connective Tissue, and Mast Cell Activation Disorder “Cells of the body are surrounded and supported by a network called the Extracellular Matrix (ECM), which can be made from structural materials like collagen. Structural materials like collagen play an important role in the connective tissue of the body generally, and are associated with the Ehlers-Danlos syndromes (EDS). MCs can stick to the ECM, which in turn alters their behavior. EDS, as a connective tissue disorder, could change the ECM enough to cause a change in MC behavior.”

I’m feeling that my stomach is still not happy and my allergic reactions and anaphylaxis always starts there. I’ll be eating bland foods today, like white toast or a potato. These reactions don’t leave me able to pick up and be back to normal as soon as they’re over. The effects linger and sometimes set me up into a cycle of reactions.

I pray that this won’t happen today. Having ongoing reactions is a nightmare for me and my husband, who checks on me every few minutes to make sure that I don’t need a Epi-Pen shot. Nobody slept much last night. When I did sleep there were horrific nightmares. That’s one thing that I hate about Benadryl.

I sometimes have anaphylaxis from known issues, such as chemical sensitivities. But, I also have had just as many times with idiopathic anaphylaxis. This is even scarier, because I don’t know what caused it and have no way to prevent it.

To learn more about Mast Cell Disorders you can read HERE.

Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.

@2020, copyright Lisa Ehrman

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  1. I hope your feeling better I always follow how your doing. I have a son with a heart transplant and is Diabetic type 1. My daughter had Cancer at 7 . I know how ruff at can be on you and the ones who love you watching you go through this. My heart goes out to you hope your feeling your old self soon.

    1. Oh, you’ve really been through some hard times. There’s nothing worse than watching your child suffer. Thank you for your concern. My reactions have stopped and I’m feeling a little better.

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