Trial and error

Ice skater falling

When I first was diagnosed with mast cell disease and learned my mast cells were overactive, I decided, “Okay, I’ll just be really nice to them. I’ll give them everything they want and they’ll settle down.”

Turns out, nobody, including the world’s leading mast cell activation syndrome specialist, knew what MY mast cells wanted.

Instead of receiving a set list of treatments, my doctor introduced the trial-and-error process, a methodical approach to medications and supplements, slowly and one at a time. 

Struggling to eat, move, and sleep, I wanted to say, “Excuse me, sir. But I believe I am dying. I don’t have time to waste. I have bills to pay and dogs to feed. Please fix my mast cells now.”

Luckily, I heeded his guidance. At first, I improved with each incremental change: my joints ached less, my intestines were happier, and I had more energy. Each time he added a new prescription, my specialist warned me MCAS patients often react to inactive ingredients (e.g. fillers, dyes, binders, and preservatives) in medications, and to be mindful of any new symptoms.

“Which ingredients?” I asked.

“We can’t predict that,” he said. 

For me, it started with FD&C Blue No. 1 Aluminum Lake. My mast cells didn’t care that my new medication was expensive, or that it was supposed to work. My mast cells only cared that there was a minuscule amount of blue dye in one pill and proceeded to sabotage my entire body. My vision faded, my heart raced, and I vomited like the girl in The Exorcist. One ER visit, three IV medications later, and two sick days later, I was still recovering.

My specialist urged me to try it without the blue dye.

“So, then it’ll work?” I asked.

“We can’t predict that,” he said. 


There’s a saying in skating: “If you aren’t falling, you aren’t learning.”

In November, seven months into MCAS remission, I decided to pursue my childhood dream of ice skating. I envisioned myself gliding effortlessly on the ice, wearing a sparkly dress. However, when I stepped out onto the ice in my new blades and boots, I realized, “Wow. This ice is hard and slippery.” 

I tried to avoid falling as long as possible, but inevitably my toe pick betrayed me, and I belly flopped onto the frozen pool. I moved just enough to indicate to others I was “okay,” whatever that means, and then laid motionless and contemplated my existence until the ice numbed my freshly bruised limbs and soul.

Not only are some of my skating falls pretty brutal, but if I want to get better, I have to get up and try again like it didn’t happen. If I hold on to my anxiety and anticipate a fall, I’m more likely to fail again, possibly worse. Same goes for mast cell disease. Mast cells are notoriously triggered by anxiety. If you are worrying about trying a new medication, your mast cells can become more reactive and therefore less likely to tolerate the new medication.

I often remind myself learning to figure skating has been much easier than learning to how to treat mast cell disease. It certainly has required less emergency medical care. Unlike skating with its tried-and-true techniques, every MCAS patient embarks on their own difficult journey to find their optimal treatment. There are many treatment options, but at this time, we have no way of predicting treatments or triggers of individual patients.

When I was diagnosed in 2015, my mast cell specialist said it usually takes 4-5 years of medication and supplement trials for an MCAS patient to discover their optimal treatment. 

I promptly ignored him. No patient actively getting their ass kicked by their mast cells wants to hear this. However, it was absolutely accurate for me. I reacted to more MCAS treatments than I tolerated. It took me 5 years of trialing medications and supplements to find my optimal daily combination to reach MCAS remission. There was no magic pill, just a lot of trial, error, and renewing of hope.

In skating, although falling still hurts, you usually do get better at it. Your brain learns to track your movement more quickly and your body learns to fall more safely, protecting delicate bones. Although the MCAS reactions don’t get easier, you learn how to identify triggers and stop reactions more quickly.

Here are some tips and encouragement for MCAS trial and error, learned through my own experience both as a patient and skater:

  •  Celebrate your courage and hard work regardless of the outcome.
  • Don’t quit, but do take breaks. Take time to recover physically and emotionally. 
  • A knowledgeable specialist may save you time and money in the long run. Most doctors are unfamiliar with MCAS treatment. MCAS specialists know how to methodically work through the treatment options and understand each patient is unique.
  •  Build relationships with other patients. They can help you avoid common pitfalls and cheer you on. Don’t forget to cheer them on too! 
  •  Keep calm and put on your crash pants when you’re trying something new. For me, this is taking time off work, having rescue medications ready to go, and planning check-ins with friends.
  •  Track your all medication and supplement ingredients, doses, and symptoms. Sometimes reactions can be subtle and build over time or with increased dose. Organized notes can help identify trends and triggers.
  • Compounding medications can help reduce inactive ingredients and risk of reacting. 

Last month, I participated my first figure skating competition. Despite preparing my best, I knew falling was a real possibility and I was absolutely terrified. I showed up, not because I knew I would perform well, but simply because I don’t want my life to be dictated by fear. I want to try to get better. 

Related posts and resources

The tilt table and other tortures, I mean, tests

Keeya on the tilt table

When I heard my new specialist did autonomic testing, I should have felt grateful. Many people with mast cell activation syndrome (MCAS) and Ehlers-Danlos syndrome (EDS) also struggle with dysautonomia, dysfunction of the autonomic nervous system. (See also: clusterfuck.) Despite being diagnosed with MCAS five years ago and having the symptoms of dysautonomia, no one referred me for testing.

To be honest, I was scared. While relaying your pee to your refrigerator for 24 hours for MCAS testing is exhausting, I’d heard too many stories about people fainting and vomiting during autonomic testing. While I was so dizzy in the first years of my MCAS diagnosis that I often crawled across my condo, I never actually passed out. Sometimes the fear of not knowing is worse than the experience.

I knew standing increased my blood pressure and made me feel terrible. When the pandemic began, the lines at grocery store deterred me from getting food. Luckily, I can now afford delivery, but some items are not available. If I have to go into a I store, I lean on a shopping cart to avoid losing my balance. After falling down the stairs several times, I stopped using them completely. (On more than one occasion, I’ve been asked if I avoid the stairs because my service dog is too short. Why is it so hard to accept invisible disabilities?!)

Tilt Table Test

Knowing fully well you may be minutes away from passing out or vomiting, the first task after being strapped to the Frankenstein table is to be totally calm to get a baseline reading of your vitals. After five years of MCAS and one epidural blood patch, I excel dissociating from my body. Super handy for medical procedures; not so great for processing emotion. (See also: reasons I need therapy.)

The goal of the tilt table is to measure your blood pressure and heart rate when you go from lying to standing. By using the table, instead of your muscles, we can better understand if the brain signals to the body are lagging. 

“Okay you ready?” the doctor asked. I nodded and she pushed the button. The table motor chugged as it hoisted me up to 70 degrees. I braced for the worst.

As the table stopped rising, the pull of gravity took over. Within that split second, I decided:

YEP, I’M FUCKED UP.

What I remember is the heaviness of my body and the doctor’s incessant questioning. I felt like I was wearing a Kevlar suit and about to be sucked through the ground. I decided I would fight the tilt table with deep breathing and calm thoughts. As everything became quiet, dark, and slow, I tried to focus my eyes on a spot on the carpet like they teach you in yoga to keep your balance. Same thing, right?

What actually happened was documented by video. The doctor asked, “How are you doing?”

I responded, “Good.”

I WAS NOT GOOD. 

“Any dizziness?” she asked.

“No, I just feel super heavy,” I said.

STOP ASKING ME QUESTIONS.

“Any headache?” she asked.

“Super, super heavy,” I groaned.

SHUT UP. I AM BEING CRUSHED INTO A TINY DIAMOND.

Instead of speaking my mind, I politely closed my eyes. 

Within a few minutes, the pressure subsided and I just felt weak. 

After 10 minutes, the doctor lowered the table and asked, “How are you feeling?”

“My legs are all tingly,” I said. “There’s pain in my muscles.” Then I realized the pain was the blood rushing back into my legs. They had been numb the whole time I was standing. 

As my doctor calculated the results, I recall all the times I had a heavy feeling. I described it in 2018 as almost a paralysis.

“Your heart rate did not jump. This is not a diagnosis of POTS,” my doctor explained. “What we are finding is you had an adrenergic response meaning your blood pressure jumped and you were symptomatic.”

Although I expected the blood pressure rise, I was surprised my heart rate stayed normal. The doctor explained that my results supported the evidence that when I am triggered, my body maintains the reaction. In other words, I get stuck in flight or flight. 

I’M NEVER FUCKING STANDING AGAIN.

“So we’ve got three more tests,“ she said.

“Cool,” I lied.

Deep Breathing Test

When my specialist explained the deep breathing test, breathing in and out deeply for one minute with the help of a computer screen, I was like:

I TRAINED FOR THIS MY ENTIRE CHILDHOOD IN THE ASTHMA CLINIC. AND I PLAYED THE TUBA.

I was feeling pretty confident after surviving the tilt table. While my deep breathing performance was perfection and my heart rate was normal, my mast cells protested.

“I’m cold,” I interrupted the doctor’s explanation.

“Like suddenly cold?” she said.

“Yes,” I said.

She retrieved a blanket.

“My chest hurts,” I said, remembering that bronchospasms can often feel like a heart attack.

“This test is like blowing up a teeny, tiny balloon,” my doctor explained. “So, you know how much pressure you have to put on a teeny, tiny balloon?”

“Yeah, until my jaw pops out,” I replied.

*NERVOUS LAUGHTER*

Luckily, my jaw did not pop and my CSF blood patch did not blow, but honestly, this was my least favorite test because worried about my Ehlers-Danlos syndrome (EDS) complications. My results showed a slightly delayed sympathetic response, unlike my tilt table test. Perhaps, my body was starting to wear out from testing. This test triggered a wicked headache that built for 12 hours.

Quantitative Sudomotor Axon Reflex Test (QSART)

After the surviving the tilt table, a little electricity didn’t fluster me at all. Four small plastic cups were taped to forearm, foot, and leg to measure amounts of sweat, or sympathetic response, generated by a mild electrical current. Sympathetic nervous system

“It does feel a little prickly, but I think you’ll be fine,” my doctor said. “How are you feeling?”

“Prickly,” I said.

“Maybe that’s an understatement,” she said.

“Yep,” I said.

WHO THE HELL DESIGNED THESE TESTS?!

For me, this test was tolerable, not really any worse than a MCAS skin reaction. My sweat was slightly low in a few places. No surprise, as I often skip my deodorant stick with no repercussions. 


As barbaric as these tests may sound, I am now very grateful I was able to access them. 

My doctor diagnosed me with hyperadrenergic dysautonomia. Is it possible I had POTS, another type of dysautonomia, at one time? Very likely. The tests can inform treatment and further testing, but just like MCAS testing, the results can change over time and treatment still requires trial and error. I also tested negative for small fiber neuropathy (think tiny melon ball-like scoops of skin). 

I’m looking forward to sharing my major improvements on new treatments– not beta blockers, which can exacerbate mast cell reactions. Aside from treatment, there’s a lot of value in a formal diagnosis for other providers to understand my body’s reactions and to support disability accommodations. For example, one doctor was so obsessed with my high blood pressure that she dismissed my CSF leak. Now I can explain my hyperadrenergic response.


After my long day of autonomic testing, my friend asked, “Do you want to go out and celebrate?”

“Yes,” I said, suffering from one of the worst migraines of my life.

TAKE THE DAMN PICTURE.

Keeya at Seattle waterfront

May 2021 Update

MCAS remission eliminated my dysautonomia symptoms completely. Dr. Weinstock estimates MCAS accounts for 1/3 of POTS cases. While autonomic testing helped me understand dysautonomia, pursuing MCAS treatment was a better use of my resources.

Finding Your Range podcast interview with Jeannie Di Bon

Please enjoy my interview with Jeannie Di Bon about living with mast cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), and dysautonomia. In this episode, I explain how I’ve been suffering from these conditions literally since birth, even though I didn’t get diagnosed until age 29. I also share my tips for living with chronic illness, joy of dog agility, and hopes for MCAS, EDS, and dysautonomia patients.

In a world that generally doesn’t understand the challenges and limitations of hypermobility, I have appreciated Jeannie Di Bon’s exercise videos for years. Jeannie herself lives with MCAS and EDS. I believe we need more practitioners and therapists, like Jeannie, who truly understand these diseases and advocate for patients. Learn more about Jeannie Di Bon.