My Struggle with MCAS: Part 1

Oh MCAS, the struggle real. MCAS (Mast Cell Activation Syndrome) is a separate condition that many people with POTS (and other conditions) end up acquiring. On a very basic level it means that my body reacts to things around me at random. My body’s mast cells (immune cells) mount attacks on what they think are foreign invaders (but are actually just things around me like food, medicine, chemicals, and things bodies naturally make) causing an immune response when there shouldn’t be one. These cells “activate” way more often than they should and the result is a multitude of sensitivities that can, and do, constantly change. Sounds confusing? Yes, yes, it is. Does this make life much more difficult than it needs to be? Yes, yes, it does. In the past year and a half most of my health struggles have actually been MCAS related, even though I did not know that was what I was dealing with most of that time.  

With this condition, it can literally be any substance imaginable that causes you to react. For some it is medications/groups of medications. For me, it is foods, chemicals and things like sweat. How did I initially find out I had this condition? Well, a few months after I had first gotten diagnosed with POTS, I was randomly having small reactions when I would eat pasta with red sauce. Sometimes it was a stuffy nose, sometimes it became an itchy throat and then one day it became nausea, a tight throat and watery eyes. I spent the entire evening in the bathroom throwing up and hoping my throat would not close (it did not- but I lived alone and was terrified). Unfortunately, a lot of people only figure out they have this condition after an anaphylactic episode and a trip to the ER. Luckily, mine did not progress that far but it was scary how close I got to one and I wanted answers. I told my provider what had happened and she suggested I avoid all tomatoes for a couple months. After that time had passed, I tried them again and everything was okay…. Weird right? Well, MCAS triggers can pop up randomly, but they can also go away randomly. But this whole experience was the first clue to my medical team that something else was going on. Hello, MCAS.

For years now, if I eat tomatoes too frequently and in too high quantities, they will start causing a problem. But, if I only eat them periodically and in small amounts, everything is okay. The list of foods I have to avoid is long, the list of foods I have to pay attention to is also long. There are many foods that I can eat, but only in certain amounts and in certain frequencies. Through years of trial and error I know things like: beef is okay 1x week and no more, I shouldn’t eat them same thing for more than 2-3 meals a week and I need to rotate my breakfast options every week or two. Almonds and bananas? They used to be fine and now I cannot tolerate them at all. Vanilla? I avoided it for a couple years and now I can eat it… but I’m careful. Honestly, it’s exhausting, time consuming and confusing- even when you think you know what is going on, something new changes.

About a year and half ago I started realizing I was reacting to the water in my shower (causing my eyes to water, turn red and itch, and causing me to sneeze for my entire shower and a good hour after), the sweat my body made was causing my legs to break out every time I took a walk and even if I wasn’t sweating my skin was itching so badly most days I would scratch until I bled (my husband went as far to get me loofah mitts so I would cause less damage haha). Looking at my bloodwork, the inflammation in my body was off the charts but all my other labs looked fine.  My doctor finally started me on some medication specifically for MCAS, and that made a huge impact, but I have to take it three times a day and that middle of the day dose is a real struggle. Even now, this many months later, I still struggle to remember that afternoon dose.  My husband, the amazing supportive person that he is, also spent a lot of time researching the specific water our area of the city was getting and thinks he found the chemical they were using that might have been one factor in causing the reactions that I was having. He spent an equal amount of time finding a shower head filter that would remove that specific chemical, along with the other basic stuff, and between that change and the medication, I started to feel like myself again. At least while we live here, I know I have to be hypervigilant to only used filtered water in things that I cook and to refill things that I drink out of.

There are absolutely things you can do to help manage MCAS, but I feel like getting the diagnosis can be the hardest part because it all seems so disconnected. You have a weird reaction one day, and might not again, and a weird response to something else unrelated, or you only feel reactions to something part of the time. And, unfortunately, there is no one test you can take to just “know” for good. It is constantly evolving and changing, and almost all of this is trial and error. That takes a lot of time, a lot of patience, a lot of tracking, and a lot of communication with your medical team. I’ve already said it’s exhausting, and that is true, but so is feel really crummy 24/7 and having no idea why. At least I now know what is wrong so I can try to do something about it.

I labeled this post “Part 1” and that’s because my MCAS journey continued well into this year, along with some recent reminders of lessons I had forgotten along the way. There is so much involved in this diagnosis, and I have learned so much in just the past 3 months about how to better manage this condition. I want to share EVERYTHING with y’all, it will just take a few posts! In the meantime, if you are struggling with this, or think you might be, don’t give up! We can do this together, and I am right here facing it with you at the same time! We got this.