The Chronicles of Chronic Migraine

By Jorie & Alisha

The medical definition for chronic migraine, according to The International Headache Society, entails “more than fifteen headache days per month over a three-month period of which more than eight are migrainous, in the absence of medication over use.”

That’s a lot more than “just a headache.”

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Chronic migraineurs experience most, if not all of the same symptoms episodic migraineurs do, but they experience them for longer durations of time, often with more severity.

As a chronic migraineur myself, living with this disease has been nothing short of hell. But awareness is something I’m passionate about and with June 29th being Chronic Migraine Awareness Day, what better time to educate the public about chronic migraine?

The Chronic Reality

While chronic migraine affects less than 1% of the population, its impact is massive. Every year, researchers estimate that between 2.5% and 4.6% of episodic migraineurs turn chronic—that’s a huge figure when we’re talking about over 15 migraine days.

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Chronic migraine affects the entire body—not just the head, as many believe. With chronic migraine, and episodic migraine much of the time for that matter, we do have excruciating head pain, throbbing at the temple, and often pain in the eye socket, jaw, and neck.

But this pain isn’t the end of our migraine. We frequently experience nausea and vomiting, vision disturbances similar to flashing lights and blurriness, problems with our speech, skin sensitivity such as soreness, numbness, or tingling, and light and sound become unbearable.

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Our Chronic Stories

Alisha

I am tired all the time but try to never let it show. When I go out in public, I look just like anyone else.

For years, I pretended to be just that. In another life, I would be an actress. My kitty cats frequently run around meowing for attention but I am too weak to pet them. Some nights I can go on walks with them.

Often chronic migraine means my husband has to be emotionally strong for me more than I would want him to. Sometimes he has to make the dinner I so desperately want to cook for us. We can’t just jump in the car and go buy a pack of bananas. We have to prepare for it.

I have to carry water and snacks everywhere I go. Nothing is ever normal. But that’s ok. Because chronic migraine has taught me compassion and empathy in a way that has changed my life. I see the world differently. Everything holds beauty. Even pain.

I see magic everywhere. I take many pictures, partially because I want to capture every beautiful moment, partially because chronic migraine is slowly stealing away my memory. Sometimes I can’t take the picture and my husband has to take it for me.

Often I spend an extra hour in the bath simply because I don’t have any willpower left to get out. I love the rain and sometimes I can dance in it. Mostly it increases my pain until I eventually go unconscious.

I can’t remember the last time I had a good night’s rest. But that’s ok, because a quote once told me that “3 a.m.’s were made for poets, lovers, writers, musicians, painters, over thinkers & truth seekers.” Those are just some of my favourite people.

Jorie

Severe chronic migraines, for me, didn’t strike until I’d gone off to college. With all the new-ness, stress, chaotic attempts to keep up with academics and social life, my migraines came crashing down on me like a roaring tsunami.

I’d already experienced migraines for 8 years up to that point, but they were of a more episodic, beginning borderline-chronic nature. I had them under control to a point that I was living life well enough to get by without many complaints. The medication I took worked fairly well, the abortive and pain rescue medications I had at hand were acceptable.

It wasn’t until that first year of college was behind me that I realized the migraine situation was MORE than just an occasional nuisance—they were nearly every day at this point.

My migraines had turned chronic seemingly overnight, and it without a doubt turned my life upside down.

For me, chronic migraine is a life-disrupting, disheartening, absolutely hellish monster. It has stolen so many of life’s joys from me, so many hours and days that could have been spent productive, happy, having fun and just being alive.

Social life. Work. Hobbies. I automatically associate all of these words with my chronic migraines because my condition dictates every one of them. If I’m sick, I can’t spend time with loved ones. I miss out on celebrations, weekend fun, dinners out, and more. The hours I put in at work are mediocre at best, and I’ve used every ounce of sick time I have. I don’t enjoy my hobbies to the fullest because the monster is lurking around the corner constantly, seizing me with anxiety for the next agonizing attack.

But chronic migraine hasn’t stolen my spirit.

Because of my diagnosis and suffering, life has become more beautiful. This sounds crazy, I’m sure, but it’s true. The mundane is amazing. Little things in life are more important than anything. Small accomplishments make me proud. And the friends I’ve made through becoming a patient advocate and starting this blog are blessings I am thankful for every day.

Migraine may have stolen some of life’s most essential moments, but it has given me gifts as well. Patience. Kindness. Gratitude. Things I wouldn’t have had I not gone through the pain. As they say, “you can’t have a rainbow without a little rain.”


(Graphic by Wanda)

 

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