My Journey with Uncommon Asthma Symptoms and MCAS

My asthma wasn't diagnosed until I was an adult, despite a lifetime of symptoms. The doctor who diagnosed it didn't give me much information. I had to educate myself. Since my asthma was only cold- and exercise-induced, it wasn't too big of a deal — that is, until after my first COVID infection. In the span of a year, my asthma went from being very mild and controlled to severe and poorly managed.

When new symptoms started overlapping

At the same time my asthma was worsening, I was developing other strange symptoms. A lot of these turned out to be from a condition called mast cell activation syndrome (MCAS). It just so happened that COVID was triggering this condition in some unfortunate folks, like myself.

During that first year, it became a daily battle to keep my body stable. MCAS caused anaphylactic reactions, and I was also dealing with chronic hives. I had overlapping symptoms, making it difficult to figure out which condition was causing what problem. It also seemed like symptoms flaring in one condition would flare up the others. For instance, if I began experiencing symptoms of an asthma exacerbation, this would often set off an anaphylactic reaction. As a result, I would end up in the ER, struggling to explain the difference between my symptoms. It was hard to tell doctors what I was feeling when I wasn't exactly sure myself.

On the other hand, if I was having a reaction to a food or other substance and began coughing, this would often trigger a cascade of asthma symptoms. One thing led to another, and before I knew it, I was back in the ER, fighting for air. In the six to twelve months when my doctors struggled to get my symptoms under control, I was in the ER a total of 14 times and hospitalized 5 times. I relied on TPN (total parenteral nutrition), or IV nutrition, to sustain me while we worked to stabilize my system. Every food I ate was causing anaphylactic reactions. After 6 months of TPN, I resumed a very limited diet, but my asthma and MCAS symptoms were still very uncontrolled.

How my family adapted to my triggers

I'm fairly certain my husband has PTSD from the constant uncertainty of not knowing how my system would handle the day. He even knows the difference between my various coughs! He does the cooking (he always has), and in that first year, we quickly found out that I couldn't be anywhere near the kitchen when he cooked. Thank goodness we had a pocket door and an industrial fan to help move the odors out of the kitchen. We also realized we needed a large air purifier to help clean the air of strong odors (onions and garlic were the worst!) and smoke. Family time around a backyard fire became a thing of the past, because even when I stayed inside, the smoke would drift indoors and I would suffer.

If someone was wearing perfume or cologne, or if I walked into a store that used bleach or strong cleaning chemicals, I would automatically start coughing. The coughing frequently escalated into an exacerbation or an anaphylactic reaction. I felt stuck at home, trapped by my own body. Even when I went to the hospital for exacerbations or anaphylactic events, I often encountered providers wearing perfume or scented lotion. These would immediately trigger a worsening of my condition.

Recognizing lesser-known asthma symptoms

A few unusual, lesser-known asthma symptoms I experienced were:

• A runny nose and sneezing before and during an exacerbation
• Swelling in my fingers and face
• Frequent yawning after an exacerbation
• Fatigue

These kinds of atypical asthma warning signs aren't always talked about, but they can be just as telling as the more familiar ones. The runny nose and sneezing, along with the swelling, mostly resolved as my MCAS became stable. As I learned to better monitor my lung function with my peak flow monitor and to treat symptoms before they escalated, I experienced less yawning. Unfortunately, the fatigue has continued. It's a common issue with the range of conditions I deal with, and I've learned to adjust my life to avoid energy crashes, which, in the end, lead to flare-ups.

Final thoughts on uncommon asthma symptoms and MCAS

As you make your way along your asthma journey, I hope you can find the best way to manage your symptoms and the people to help you. And if you're experiencing any strange or uncommon asthma symptoms that seem to flare up around an asthma exacerbation, talk to your doctor. It never hurts to ask, and there's always a chance you could find relief.