My Worst Cluster Headache Cycle Caused Hair Loss and Nerve Damage

Episodic cluster headaches are an enigma. Most of the time, I'm a "normal" 34-year-old woman. Once or twice a year, I experience heinous attacks of head pain that may last two weeks to two months. My worst episodic cycle of cluster headaches was in 2012, and it still haunts me. I can see the damage those 65 days of hell caused me every time I look at my crooked smile in the mirror. 

What happened to my hair?

In May of 2012, I was one month into daily attacks of cluster headaches. I noticed more hair falling out in the shower. Strands fell off in droves, coming out in what seemed like a handful every time I ran my fingers through my hair. I tried not to let it get to me, but I was in my early 20s and too young for alopecia. Suddenly, I saw more of my scalp between my side part and no longer felt comfortable in a ponytail. I lost one-third of my hair in a month.

Cluster headaches often make me want to rip out my hair, but I don't think the condition caused the hair loss. A combination of stress, overusing sumatriptan, and a poor diet was most likely the culprit. I tend to lose at least 10 pounds during a cycle because I have no energy to eat.

Some of my hair filled in again, but the thick, luscious locks I enjoyed braiding never came back.

How did my smile change?

They say the ideal beauty comes down to facial symmetry. If you fold a picture of an "attractive" person's face in half, both sides should look the same. My symmetrical appearance disappeared in 2012. I know it's a little vain to miss how I looked before cluster headaches, but it's just another kick in the gut from a condition that stole a lot of my youth. When my worst cycle finally ended in early June 2012, my smile didn't look the same.

My cluster headaches occur on the right side of my head, never the left. Even now, when I brandish a broad smile, it's uneven. The right side is a little wider and lower than the left corner of my mouth. The right corner of my mouth twitches if I try to hold a smile or smirk. 

What did my headache specialist think?

When I finally found a headache specialist in 2014, I asked her about my facial changes and random shocks in my fingers. She believed it was linked to nerve damage from seven years of episodic cycles. 

Have I come to terms with my new appearance?

Putting myself back together after that episodic cycle of cluster headaches was the hardest of my life. I was not just mourning the time I lost to the pain (missing school, a study abroad opportunity, and friends), but that I no longer looked like “me.”

Headache disorders steal a lot from us, but losing your looks to the disease isn't something we usually talk about. I take vitamins, eat healthy, and hydrate through cycles, but I still find myself crossing my fingers that my hair and nerves are intact when the attacks stop.