Isolated man holding left half of his face in darkness. The left side of his face is glowing red and looks painful.

What It's Like to Live with Hemiplegic Migraine

Lately, the first obvious sign of a cluster of migraines coming is being very confused a lot of the time, feeling like I am in a maze of distorted mirrors at the fair. But unlike the fair, there aren't sweet treats, fun rides, or livestock to pet.

When do I notice my aphasia?

I catch my aphasia. But it’s usually far too late and people have started to notice. I notice it just as much when I’m talking to my partner as he does. We’ve been together for about a year, so he’s learned how to sort of translating my aphasia when I am in the thick of symptoms.

How do I have migraine without a headache?

A lot of times, I will have all the symptoms of a migraine, but never experience the headache. This can be hard to explain to people, especially since the other symptoms really hold me back from doing certain things I like to do on a daily basis. Lately I’ve been having a lot more issues with auras, running into things, peripheral vision, and numbness to the point where I am unable to walk. Depending on the day, it will only hit one side at a time. It’s been transitioning to the other half of my body, which is cause for alarm for me. Never knowing when the other shoe will drop.

What hemiplegic symptoms do I experience?

I live with hemiplegic migraine (HM), which randomly gives me symptoms like a drooping face, pins and needles feelings at the most awful times, and migraines that will not let up. I’ve been constantly worrying about my worsening of symptoms. Normally the pinching feeling that travels up my arm to my neck and hits my feet is painful. This is a whole different type of painful. It’s also mentally painful wondering what body part will be affected next and how bad the symptoms will ultimately become.

Do the changing seasons affect my attacks?

It’s summer now. I can’t say for certain that I notice one season affects me more than another, but I know the change in seasons and barometric pressure are indicators for me. Laying in bed in a pool of sweat on a hot summer day is not necessarily how I’d like to spend the rest of my summer. I’d like to forget the fact that I have migraine and go back to just taking the prescription medication I’ve taken for nearly 4 years without many ups and downs.

Will I have enough energy?

With hemiplegic migraine, I feel my world getting smaller, along with my peripheral vision. Outings to the store and doctor are tasks that suck up all of my energy, leaving me wondering if I’ll have enough energy to take a shower at the end of the day.

How do you manage worsening symptoms, aside from calling your specialist to let them know what’s been going on?

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