My first signs of mast cells behaving badly
I used to love drinking. Nothing was better than late nights with friends, and washing my mind in a haze with the stuff at comedy clubs… one of my absolute favorite things in the world. Slowly though, alcohol became a steady, quiet and ever-growing red flag that something was wrong. My budding alcohol intolerance. At first it was just that I often got weird dull aches in my neck as an undergrad after a drink. I asked a couple doctors, who would said “oh that’s strange…” I would get some bloodwork done. The blood betrayed me, and results came back fine. I looked fine and perfectly healthy, so no one assumed a problem.
I figured if my doctors didn’t think it was a big deal, then everything must be fine.
Then, a few years later there came a point where my head would be hovering in a toilet only a few hours after only having a glass of beer. It wouldn’t happen every time, so I thought maybe I was growing soft at the ripe old age of 23. Naturally, I started to avoid alcohol, unless it was a special event. It was like my own personal roulette-style drinking game; one night we could have the best night of my life, the next time I’d be retching as if I had been hazed.
Then things started to roll-off the road into uncharted territory. I decided to have a long island at a comedy club- nothing new to me. The worst case I figured I’d have my standard barf-fest later, but for now I was going to have fun. Bad choice. Half-way into the show I started feeling like something was really wrong- it was hard to articulate- just a sense of doom competing with a pulsing wicked pit of nausea. I camped out in the downstairs bathroom at The Comedy Store just trying to let this sensation pass while trying to chug some water from the sink tap. Gross LA water from the heart of the Sunset Strip. I was desperate. Famous comedians piled into the empty room after their sets right outside the door. It was surreal hearing them rolling with laughter amongst themselves, while I felt so alone, confused and waiting for it to end. Almost an hour later before my friend finally found me- frantic that I might’ve been roofied and hauled away. Barfing ensued later that night, but the next day all was well enough despite the heavy exhaustion that I become so inured to.
The next and last time I drank I found a new low that I never want to encounter again. I felt that I was dying, my heart was pounding, I couldn’t stop vomiting, I became ghostly pale and had ungodly shakes and shivers, it was hard to stand up or move. My boyfriend rushed me to the ER where I got extensive bloodwork and an IV drip and some anti-nausea med. It would be 3 years later until I finally got a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS/MCAD).
Turns out I developed an allergic like response to alcohol that presents like anaphylaxis.*
When I first heard these words pass through my doctor’s lips- POTS and MCAS, I had to do a double take. “What was that again?” That sounds complicated. I can’t really have something that sounds that bad. Are you sure it’s not some hard to detect cancer or something? I’ve been a really healthy person up until this point. My family isn’t riddled with strange health problems. These vague weird illnesses are something other people get. This doesn’t make sense. Why haven’t I heard of these things?
Turns out POTS isn’t that unusual or rare, because 1 to 3 million Americans have POTS. Many people have POTS and don’t even know they have it. A large reason for that is it’s extremely under-diagnosed, and often misdiagnosed as anxiety. MCAS, like POTS, is also very under-diagnosed. Hit up your local ER and your nurse will probably ask you to repeat yourself and “…wait how do you spell that?” Many doctors are under-educated, misinformed or completely unaware of the conditions. You can slip past countless doctors and ER visits with paperwork that summarizes your issue as “anxiety” or “heat exhaustion” or “dehydration” or “stomach virus”… the average POTS patient goes through this for years and it can feel endless. I had to become incredibly debilitated before I started seeing that all these doctors had been wrong. I had also lost my objectivity, because my sense of normalcy was deeply eroded. I was the cliche frog in boiling water with symptoms slowly worsening and adding up over time. More importantly, I had been lulled into a state of denial of my symptoms being serious and legitimate thanks to a healthcare system that failed me for years.
I had been lulled into a state of denial of my symptoms being serious and legitimate thanks to a healthcare system that failed me for years.
I’m starting this blog to share stories from my unsavory journey into chronic illness. If you’ve got POTS or MCAS- this may be the challenge of a lifetime, but you’re not alone.
What are these attacks really?
*This is an aside explaining that we don’t really know yet what these attacks are precisely, but they need to be taken seriously. I don’t have a traditional allergy to alcohol, and what may be going on may be different than your traditional anaphylaxis attack. My attacks were meeting the criteria for anaphylaxis, but since the pathways and chemistry that are causing my attacks are still not completely understood, it may be confusing to emergency staff to simply call it anaphylaxis. Sure I can tell a layman that I essentially get anaphylaxis from my triggers like alcohol, but I may be confusing and discredited when I go to an ER not versed in these nuanced syndromes. If you’re in a similar situation you may want to explain that you have POTS & MCAS that cause attacks that appear to be anaphylaxis and that treatment with IV fluids and benadryl are typically the best first-line of response to them.
Updated December 1st, 2019