Let me paint a picture for you. I’m walking through the grocery store and surfing the shelves for the perfect pasta sauce. I bend down to grab the just-right jar of marinara. The fluorescent lighting of the store suddenly feels too bright and I cringe when the overhead speaker blares the daily deli special. I manage to hobble through the rest of the aisles and drive home, but I’m instantly horizontal the moment I walk through the door. I’m now at the peak of what will end up being a 72-hour migraine attack. I have to call off work, cancel a doctor’s appointment and let my family fend for themselves at dinnertime. (I’ll spare you the details of that scary scene.)

The reality of a life with chronic migraine means dealing with unpredictability. I’m never sure how to plan and often feel like I’m sacrificing my routine for the sake of what might happen. It’s exhausting, especially since I’ve been living with chronic attacks for 17 years. But over the past decade, I’ve come to realize that I am given just one shot at life. It’s not the life I would’ve chosen for myself per se, but it’s the one I have and I’m growing more grateful to be here — alive and able. I’m doing the best I can and I would wager you are, too.

This reframing of my mindset didn’t happen overnight, and there are still a significant number of days where I can barely open my eyes to embrace the present. But I suppose that’s the true beauty of balance when you live with migraine — it’s not guaranteed but it’s possible to cultivate over a period of time. I still don’t have total control over my migraine, but I do have control over what my treatment plan looks like. I have to sometimes sacrifice productivity for rest, but the pendulum will eventually swing back in my favor.

My advice to you is this: trust the people on your medical team, advocate for yourself in moments of uncertainty and try to give yourself a break when your symptoms consumes you like the tide. Keep going, friend!

Stay Mighty,

Kat

Migraine has always been a part of my life. So when I was asked about my first migraine experience, I had to think a bit. When was my first memory of this neurological “storm?”
And then I stumbled across a vivid one. I must have been six years old, because I was at a YMCA summer morning camp. I didn’t need or usually attend summer camp – my mom was a stay at home mom. So I must have wanted to attend, or even joined with a friend.

I don’t remember all the particulars, but camp ended with all the children meeting in the YMCA gymnasium before it let out at lunch time. In my memory, the room was huge and echoey – in that way school gymnasiums are, hundred of kids on wooden bleachers, singing or shouting and stomping a camp song together. It was loud. I remember sitting with my group and trying to participate in the activity. I could not perform well; I couldn’t sing along, just stare and go inward. The entire episode was intolerable. There were too many people and it was too very loud and I felt sick to my stomach and… there was something quite wrong with my whole head. It vibrated and throbbed as if it’d been struck like a gong. I wasn’t having fun at camp; I wanted out. I was “spaced out” and confused and I wasn’t able to think of what to do….except wait for camp to be over and wait for my mom to pick me up. I wasn’t scared and I tried to keep up with the activity.
When I got in the car, I was quiet. And since the loud echoey noise was left in that gymnasium, it was easier to handle my gong-head and nausea.
I must have looked pale or distant or like something was wrong and I must have been able to verbalize some of what I was experiencing. And my mother really saw me and had no hesitation diagnosing, “You are having a migraine,” she said.
Some people wait years and years for their diagnosis. I was diagnosed in a few minutes.
How did my mom know? Because she was an episodic migraineur. She struggled with hormone and stress triggered migraines one to a few times a month. She described them as 3 day crescendos, with the pain becoming it’s highest level on the last day. Then she described the postdrome as feeling “bruised all over the day after.”

She did not have aura or visual aura. And neither do I. And for many many years, she did not have anything for treatment but aspirin, until the 1980’s when ibuprofen became available. And by the time my mom went into menopause, her migraines nearly ceased to exist. My dad would also occasionally get “weekend migraines” from stress letdown of his job. I’m told even my grandparents had episodic migraines. It’s clear I have a very strong genetic predisposition for migraine.

So on that day… that YMCA camp day with my migraine, my mom took me home, gave me some yummy chewable aspirin and some food and drink, and put me to bed.
And I recovered.

I also remember another migraine when I was older… probably age 10-12. I was in bed in my dark room, miserable with throbbing head pain and light sensitivity, and waiting for the ibuprofen to start working. My dad came in to check on me and he started to massage my head. He was used to doing this for my mom and her migraine attacks. He massaged my head, found where the pain was worst and applied pressure. I remember it as one of the most amazing feelings of my life… like my dad was expelling the migraine from my brain.

For so many years, I was in good control of my migraines. Ibuprofen and rest was my effective treatment. I never doubted it would be a part of my life, but I didn’t have any idea it would be so much more. 

It wasn’t until my mid-thirties, four children, and perimenopause that my episodic 4-12 migraines a year would slip steadily to a chronic diagnosis. I didn’t understand what was happening and it has taken me years to understand my diagnosis. Now I experience migraine or migraine symptoms nearly everyday with at least 18 attacks a month. This wasn’t how I envisioned my life. I was supposed to be healthy, an active wife and mother, working my career as an RN, possibly attending my hobbies in reading, writing, acting, and volunteering. 

Apparently that was not meant to be.  Instead, I work hard on my health, manage my illness, and I’ve become a migraine advocate to educate people about this invisible illness.