“Are you in pain today?” the nurse asks looking up from the computer screen.
“A four,” I say, anticipating her request to “rate the pain on a scale of 1-10”.
She reads the next question, “Do you feel safe at home?
“Well, I live alone with my poodles, so yes… except when one of them farts and I think I’m going to die of asphyxiation.” I laugh at my own joke. The nurse does not. Had she heard that one before?
The nurse continues, “When was the last day of your first period?”
“2013,” I grin. This time I’m not joking.
“Are you on some kind of treatment?” the nurse asks.
I consider telling her I have a five-year-old fetus growing inside of me, but I’m too tired to explain what humor is. The truth is hard enough to believe anyway. “Yes. I’m allergic to my periods.”
She takes my blood pressure and then flees the room.
Five years ago, I didn’t believe anyone could be allergic to their own hormones. How can you be allergic to yourself? Doesn’t an allergic reaction entail hives and sneezing? I did, however, understand that hormone fluctuations could ruin a woman’s life. With the help of the internet, I realized I was experiencing premenstrual dysphoric disorder (PMDD).
PMDD was my most severe mast cell activation symptom from age 15 (when I got my first period) to age 27 (when I started taking continuous hormone pills). In fact, aside from my reactions to hormones, I felt healthy. Like MCAS, at that time, PMDD was relatively unheard of and provoked a lot of skepticism. No lab test can diagnose PMDD. Women with PMDD have the same levels of hormones as women without PMDD.
I wish I had a heartwarmingly funny way of describing PMDD to you, but the truth is it is living hell. Imagine a panic attack that lasts several days every month. Imagine being overwhelmed by impending doom, even though nothing has happened. Thoughts of hopelessness and paranoia cloud your mind, as your body becomes heavy and exhausted from crying. Your mind suggests death as a better option, while you try to pretend you’re okay for your job and your relationships.
For twelve years, I sought relief from this torture. I tried antidepressants, therapy, and supplements. Finally, a compassionate midwife worked with me to find a hormone pill that my body tolerated continuously. I learned no hormone fluctuations equaled no PMDD. The curse was over.
When I met my mast cell specialist several years later, he asked me to list my medical history. I told him that I was on continuous hormones for PMDD.
“Premenstrual dysphoric disorder,” I explained. He nodded, knowingly. His familiarity was curious, so I added, “I attempted suicide a couple times.”
He nodded again, completely unfazed. Had he heard me correctly?
Soon after, I learned that hormones can trigger mast cell reactions and many women with mast cell activation syndrome (MCAS) use medication to suppress hormone fluctuations. I learned doom is a hallmark sign of a severe allergic reaction. These days, when I’m anxious, I increase my antihistamines and it often helps.
I wish I had known about MCAS sooner and gotten tested. Not only would it have probably decreased the severity of my PMDD episodes, which can take an incredible toll on your mental health, but it also probably would have prevented damage to my body caused by chronic inflammation.
10/22/21 Update: I recommend checking out the research on histamine, mast cells, and mental health, for example: Histamine could be a key player in depression. It’s no surprise the neuroinflammation caused by mast cell reactions would affect our mental health.
As a final note, I’d like to share my biggest pet peeve of all time: women calling all birth control pills “the pill.”
When women tell me “the pill” made their PMDD worse, I want to ask, “Which fucking pill?”
For me, some birth control pills absolutely made my PMDD worse, while others, if taken continuously, can suppress PMDD completely.
The following tips helped me find the right hormone medication to suppress PMDD and minimize hormone-driven MCAS reaction:
- Monophasic, not multiphasic
- Avoid ultra-low dose
- Continuous use (no inactive pills), not regular use
- Take it at the exact same time every day
- Be patient as your body adjusts to the new medication
- Try another one if the first doesn’t work
The number one rule of MCAS is every patient is different.
As always, talk to your doctor about any concerns or questions you may have. Working with a MCAS specialist may be especially helpful.