Nfld. & Labrador·Point of View

So, migraines … turns out a lot of people get them, eh?

When Stephanie Tobin wrote a column about suffering from migraines, she had no idea so many people would respond.

Misery loves company and all that

This came up in a search result on a stock photo website for migraines. It's hilarious. Like it's so hard to capture a migraine in a photo, but this ... this is aces. (Sergey Nivens/Shutterstock)

When I wrote a column about my experience with migraines, I had no way of knowing how well received it would be. 

"Thank you, thank you, thank you for your story. It made me cry; with relief that someone understood EXACTLY what life is like for me and of course many others," wrote Tanya.

"I was reading it with tears in my eyes, thinking, this is exactly my life," said Theresa.

These responses, in turn, of course, made me cry, too. We're not just migraine messes together — we're weepy messes, too, I guess.

It's nice to know that, at the very least, I'm not alone.

In my inbox, I have 243 emails in response to my column published last month.

That doesn't include people who have tagged me on social media.

When I decided that maybe I'd like to write about my experience with migraines, I worried it would come off a little too "woe is me" and sound too self-pitying.

But my producer loved the idea, so I wrote a blunt column about what it's like having chronic migraines. I didn't even include some of the more gory stuff (you're welcome).

I had no idea how many people would respond to it.

Misery loves company?

I was overwhelmed — happily — that the piece resonated with so many total strangers, but I didn't expect my email inbox to light up with so many responses.

"It's not a nice thing to have in common with someone, but it's nice to know someone else understands," Jennifer wrote.

Those were my sentiments exactly.

People who wrote me shared stories about having migraines since they were children - even as young as four; some in their 70s who have never found any consistent relief; people who only started getting migraines in their 50s.

There are those who have found some medications that work; others who haven't and just suffer through it; people who change their diets, lifestyles, everything, to only find some slight relief.

Know what I learned?

Migraines are a bitch.

I mean, I definitely knew that already — you don't get the number of migraines I get without manifesting a solid hatred for them.

But I guess I never realized just how many people out there must get them.

Uprooting to solve the problem

When I wrote about St. John's trying to kill me, I really meant it. But it's definitely not just St. John's.

One of the people who wrote me had moved from Newfoundland to Australia, and was essentially having my exact experience on the other side of the world.

Another woman wrote and said she was having the same problem, but after moving to Calgary.

That's a tricky problem, because you've literally moved your life to a new place, only to discover your body disagrees with your geographic location.

Are you supposed to uproot your life again and try somewhere else? What if the same thing happens again?

But then, if you stay, you're basically accepting your life will be a little bit worse, a la Emma Thompson in Love Actually.

Trial and error

There are so many things that people have tried to get their migraines to go away — a feeling I know pretty well.

"I tried acupuncture – nope; Botox – nope; chiropracty – nope," wrote Laura. "I'm in heaven when I go four or five days without a headache. It happens but all too infrequently."

Girl. I know those feels.

Oh you're gonna try keeping pills down with a migraine? Good luck. (Shutterstock)

"Numerous medications, Botox, surgery to remove wisdom teeth, massage, acupuncture, diet alterations etc.," wrote Ashley. "Nothing has helped to eliminate them, nor do I think it ever will."

There are some treatments I haven't tried — like Botox, because I'm terrified of it as a concept — but I've heard from people who have had good experiences.

It's all a crapshoot. Trial and error is for the dogs. But it's the reality for so many migraine sufferers.

A 'feminized' condition

Another common thread I noticed was the majority of my audience here were women.

That's not to say, of course, men or people who identify otherwise do not get migraines. Of course they do.

But one writer had an interesting take on it: that migraines are "feminized."

That's something in the medical field that applies to a number of medical conditions: women aren't taken seriously when they present with symptoms, most often being told it's not as bad as they're making it out to be — like endometriosis, for example — or having everything tied to our menstrual cycle.

Yeah, we get it. We get periods and they suck — trust us, we are well aware. But it's not to blame for everything.

One person who wrote me said after years of migraines and trying to find help for them, she finally had a test done that determined she had diabetes, which was causing the migraines.

While all of my family doctors have taken my migraines seriously, I've seen walk-in or emergency room physicians who brushed me off.

That's an experience Jade knew all too well.

"Doctors would look accusingly at me in ERs, asking repeatedly how much I'd had to drink the night before. I was treated like I was crazy, and I believed it," she wrote.

While it's upsetting enough when a friend, family member or employer don't seem willing to believe you about your migraines, it's so much worse when a medical professional brushes you off.

Brain injuries

There were even a few who wrote me about brain injuries they've suffered, with one of the long-lasting consequences being chronic migraines.

As if suffering an injury wasn't bad enough — then, you have the added pain and reminder in the form of migraines for years to come.

That's something I hadn't realized: that there are people out there who never had migraines, until suffering from a traumatic brain injury.

It's so unfair for those people, and so beyond their control.

The long and winding road

While I've had migraines for such a long time, they show no signs of going anywhere.

My mother says hers eased up when she got into her 40s; that actually seems to be pretty common for women, to have migraines ebb the older you get.

But I'm not in my 40s yet, and I've a way to go before I am, so it's still a trial and error approach to finding something that works.

And I'm learning that it's a domino effect, too.

On a visit to my doctor earlier this month, I explained my long, drawn-out migraine hangovers I've been having lately that leave me just as incapable of functioning as a full-blown migraine.

Same. (Shutterstock)

Because my migraines come with vomiting and being unable to keep even water down for days, I'm unable to take daily medications prescribed for other things.

It turns out, those days-long migraine hangovers were medication withdrawal symptoms, my doctor told me.

So, yeah. It's all still a learning process.

It's possible I'll never find any one treatment that gets rid of migraines completely. What I wouldn't give to find that magical cure.

But it's nice to know that, at the very least, I'm not alone.

Yours in suffering,
Stephanie

P.S. If you get migraines and want to share, you can always email me, too.

Read more articles from CBC Newfoundland and Labrador

About the Author

Stephanie Tobin is a journalist in the CBC Newfoundland and Labrador office in St. John's.

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