Written by Donna Kobayashi, first seen on MyBeautifulMigraine.blog and shared with Chronic Migraine Awareness, Inc.
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 stared; I went “inward.” The entire episode was intolerable. There were too many people and it was so 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 lives with episodic migraine. She struggled with hormone and stress triggered migraine attacks 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, the last phase of an attack, 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 disease.
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 attack 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.