Content Warnings: Needles and Hair Loss
I knew things were bad when I caught myself glaring at my dog, Hana, with envy. I brushed the layer of white dog hair from my pants and sighed.
Stop it, Sarah. You are not going to be jealous of your dog for shedding everywhere yet still maintaining a thick, shiny coat.
Hana blinked at me innocently. Her nub of a tail wagged, probably hoping for a snack.
I touched the top of my head self-consciously. I, on the other hand, had been shedding a ridiculous amount of hair and most definitely not maintaining a thick, shiny coat. My ponytail had shrunk to almost half of its original size. Friends insisted they didn’t notice anything—out of politeness, I’m guessing—but my hairdresser was never one to hold back.
“Layers will hide all that thinning on top,” he’d said as he examined my scalp.
It had to be my new migraine medication, Aimovig. Nothing else in my life had changed.
In 2018, Aimovig was the first of what would eventually be known in the migraine community as “CGRP inhibitor drugs.” CGRP stood for calcitonin gene-related peptide and studies showed that migraine sufferers had an unusually excessive amount of them in their bloodstream. These peptides activated pain signals in the brain, but the CGRP drugs prevented this from happening.
My neurologist had immediately provided me with free samples, and I had been dutifully injecting myself in the thigh every month for the past six months.
The most common side effects are pain, redness, or swelling at the injection site, and constipation.
This was what my neurologist had told me. It was also written on the side of the box. Hair loss was not listed. But that didn’t mean it wasn’t happening.
When I told my neurologist my suspicions at my next appointment, he frowned.
“That’s not a listed side effect.”
I knew he’d say that. Thankfully, he didn’t sound condescending. Not that I expected him to. My neurologist had never been dismissive with me, which I was grateful for.
“You should report it to the FDA,” he said.
“I will.”
His gaze immediately went to my scalp, and I wanted to duck from embarrassment. “I think your hair looks fine,” he said.
I knew his comment came from a good place, but only I knew what was “fine,” and this was most definitely not it.
I reported the hair loss to the FDA, which gave me little satisfaction. It also planted seeds of doubt.
Was I being too vain? Shouldn’t I simply be grateful the medication was working? My migraines had been reduced from fifteen a month to five. Then three. When I did get one, it was much less debilitating. Aimovig was the most effective treatment I’d had since I became a chronic migraine sufferer over a decade ago.
But it felt like a cruel joke. Migraines or a full head of hair?
I had recently joined an online migraine chat forum, and desperate for validation, I did a search for Aimovig side effects, but nothing came up about hair loss.
I decided to pose the question to the forum myself.
I just started Aimovig, and so far, it’s great! I feel like I finally have my life back.
Unfortunately, it also makes my hair shed a lot. This isn’t a listed side effect, so I’m wondering…is anyone else experiencing this?
The next day, I was surprised to see several comments.
OMG, yes, I thought it was just me!!
Don’t tell me this! I just started it too, and it’s been a game-changer! But you’re right, my husband says he’s finding a lot of hair all over the bathroom floor and in the shower. I thought it was stress.
This really needs to be a listed side effect. My hair is literally coming out in clumps.
Reading through these, I was relieved I wasn’t alone. But I was also outraged and frustrated with the unfairness of it all.
What do we do now?
My neurologist offered a solution.
“Why don’t you try Aimovig every other month?”
So I did. Ten months later, not only did the hair loss worsen, but fun new side effects emerged: constipation and bloating. I couldn’t say the FDA didn’t warn me.
The fact my migraines were practically nonexistent at this point would’ve normally had me celebrating. Instead, I wanted to cry and never leave the house.
Was this how my life was going to be? Pulling out endless strands of hair from the vacuum roller? Feeling too sluggish and bloated to walk my dog or eat out with friends?
All I wanted was an effective treatment plan that didn’t involve me resenting my dog for her gorgeous fur and ability to poop multiple times a day.
My neurologist suggested the other CGRP drugs on the market at the time: Emgality and Ajovy. But my poor hair and bloating belly needed a break.
Instead, I reluctantly agreed to Botox injections every three months, something my neurologist reassured me was a successful treatment for many of his patients. I wasn’t exactly a fan of needles though. But hey, I’d been injecting myself every month in the thigh with Aimovig, what was a little thirty-one shots in my head?
My first Botox appointment was a disaster, thanks to me passing out, either from terror or low blood sugar. But I soldiered on, and after a few more sessions, I eventually learned to tolerate the tiny pin pricks all over my scalp, neck, and shoulders.
I also decided to try a different CGRP drug, one in pill form called Nurtec. My hair had eventually grown back, so should the hair loss start up again, I’d immediately stop taking the drug. But so far, the Nurtec and Botox seemed well-tolerated both by my hair and my head.
My beloved pup, Hana, unfortunately passed away in 2019, but recently, I adopted two senior rescue dogs. Tink is a female Chihuahua with a shiny coat who sheds everywhere, and Murphy is a tan male terrier who “suffers from alopecia” according to the animal shelter notes.
They’re both nothing but perfect in my eyes.
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Sarah M. Chen (she/her) has published over thirty short stories, one of which won a Derringer Award for Best Long Story. Her noir novella, Cleaning Up Finn, was an Anthony finalist and IPPY Award winner. Her children’s chapter book, Superbeetle, was published under a pen name. She’s the co-editor of several anthologies and has written for the Los Angeles Review of Books, Wellbeing, Intrepid Times, and Mixed Asian Media, among others.
Website: sarahmchen.com
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