How My Stroke-Like Symptoms Actually Led to a Rare Migraine Diagnosis

When Page Carlee, 35, was 19, she experienced her first migraine attack. It was nothing out of the ordinary as far as migraine goes—a visual aura coming first and then intense head pain. She didn’t know it then, but migraine would soon become a constant companion in her life. Less than a decade after that first episode, her migraine attacks became chronic—sometimes striking 20 times in one month. But nothing could have prepared her for what happened next. At the age of 28, on a typical day at work, Carlee felt a migraine attack coming on. She decided to head home, but instead of walking to the door, she fell to the floor with stroke-like symptoms.

She was having what’s called a hemiplegic migraine, a rare type of migraine that includes symptoms like weakness on one side of the body, headache, and changes in vision, speech, or sensation. This type of migraine only occurs in 0.01% of all reported migraine cases and is three times more likely to impact people assigned female at birth, per the American Migraine Foundation. What’s more, these migraines are often misdiagnosed as a stroke, at least initially.

Because Carlee had dealt with migraine for years before she had her first hemiplegic episode, she thankfully got the proper diagnosis right away, but that didn’t make the experience any easier—especially as the hemiplegic migraine attacks became more frequent. The attacks have caused issues in her workplace, tension among close friends and family who have well-intentioned but misinformed treatment suggestions, and a complete restructuring of her life around these debilitating attacks. Dealing with her new normal of hemiplegic migraines has taken years of effort, and it’s still a work in progress. This is her story, as told to health writer Katie Bowles.

When I experienced my first migraine at 19 years old, I thought for sure I was having an aneurysm, because I couldn’t imagine anything more painful. I would soon be proven wrong. I was around 26 when my migraine attacks went from episodic—maybe once every few months—to chronic, during which I was having up to 20 per month. My mom has epilepsy so I began seeing a neurologist immediately. Migraine and epilepsy actually share a lot of symptoms, and I was worried I might be on my way to a similar diagnosis.

Most of my migraine attacks are considered intractable migraine with aura, meaning they are long-lasting—between 24 to 72 hours—and come with a visual aura during the prodrome, or pre-headache, phase. These are your typical, standard migraine attacks, but I was having a lot of them, which can feel a bit life-ruining.

Then when I was 28, something completely different happened. I had been at work for a few hours when I thought I had a typical migraine attack coming on. It hit without an aura, which was unusual for me, but not completely unheard of. I knew based on the pain that I needed to head home.