I have Mast Cell Activation Disorder, which can also be called Mast Cell Activation Syndrome, or Mast Cell Activation Disease. In case you don’t know what this condition is, I will give a brief explanation. MCAD is a very complicated rare disease that was only discovered in the early 2000’s. In simple terms, a person’s Mast Cells are responsible for inflammation and allergic reactions. Everyone has Mast Cells, but mine are overactive. Because of this, I have a LOT of allergies to different things, and new allergies that like to develop. Sometimes I will have an allergic reaction and not even know what caused it. There are many Mast Cell triggers which I will write about in a different post. Like I said, MCAD is a very very complicated condition, and even doctors have a hard time understanding it. It is important to note that each person who has MCAD will have different triggers and different kinds of reactions. My experience that I am about to share may or may not be the same as another person with that condition, which is part of what makes it so complicated.
Okay, now that I gave you a brief explanation on what MCAD is, I will tell you about my experience with anaphylactic reactions. I am currently anaphylactic to peanuts, cloves, watermelon, and cucumbers. (These are just my anaphylactic allergies.) Now, this is where it gets complicated. Each of my anaphylactic reactions are slightly different. The good thing is that I have learned to know the warning signs when a bad reaction is coming on.
I have slow onset anaphylaxis, meaning that it takes longer to make me stop breathing than typical anaphylaxis does. When I start to have a bad reaction, it can take up to 40 min to get to the climax. Another unusual thing about my anaphylactic reactions is that they are hypertensive. Instead of my blood pressure dropping, it goes up. Once I use my epi pen my blood pressure goes back down to my normal level. This is totally backwards to most people.
Because of these bizarre reactions, I have had many doctors tell me that it might just be anxiety. (They always tell me this after they have given my epinephrine, and a bunch of other meds that stopped the reaction.) First off, I know anxiety. I even have anxiety attacks sometimes. But this is 100% different. I will have a tone of allergic reaction signs when I am having an allergic reaction that do not happen during anxiety attacks. Also, whenever I have a bad reaction I have a test that I do. When my throat is feeling tight and I can’t breath well, I drink water. When I need to take my epi pen I can swallow the water, but it gets stuck at a certain point and I tip myself upside down and the water will come out. This shows me and the doctors that my throat is physically swollen. With some reactions I will feel like puking, but my throat will be too swollen. I also get rashes, headaches, parts of my body going numb, and all sorts of other symptoms depending on the allergen. Doctors who know about MCAD have never thought my reactions are anxiety, which says something.
Please feel free to comment below if you have any questions for me, or if you would like to share your own experience. I would love to hear from you!