A Migraine Made Me Change My Hairstyle

I recently endured a different type of migraine than I’d ever experienced. In addition to the throbbing pain in the back of my head (which was skull-crushing), I experienced brain fog, confusion, trouble finding the right words, struggles with my short-term memory, and something really challenging to describe to my doctors - scalp sensitivity.

What have I tried to treat this intractable migraine?

Since my third hospitalization trying to manage the bacterial infection which had caused brain swelling and this seemingly never ending intractable migraine, I have been at a plateau - a pain level of about 6-7 daily, regardless of which treatments my neurologist tries. I’ve received occipital nerve blocks, Botox for migraines, and have tried several short courses of different abortive migraine medications in addition to off-label medications to break this migraine cycle - unfortunately without any luck.

How bad was my allodynia?

As the mom of a four-year-old and someone who works from home, I’ve spent the last five-ish years mostly rocking the “mom bun” - using a hair tie to create a messy but somewhat put-together bun on the top of my head. In the first several weeks of this intractable migraine, when the pain was the absolute worst I’d ever experienced, I couldn’t even touch my scalp without causing additional pain. I’d wash my hair very quickly and not very thoroughly in the shower, just enough to get by, and then I’d let it air dry without combing or brushing it. It looked like garbage, but I was in too much pain to care.

How has this attack impacted my life?

I thought after I finished the lengthy IV treatments for bacterial meningitis, the migraine associated with my brain swelling would be reduced. I haven’t been so lucky. I’ve gotten to the point where it’s somewhat tolerable, but definitely still bothersome, and this has been agonizing for me. It’s caused cognitive deficits I’m still trying to identify and address, it’s trampled all of my mental stamina, and it’s made my concentration efforts futile.

More so - it continues to affect the way I wear my hair!

What have I tried to do with my hair?

I know this may sound trivial, but I’m 38 years old, and feeling decent about what I see in the mirror is important to me. I was so used to seeing myself with this high bun that these months without it have made me feel off-kilter. I’ve tried using different types of hair accessories - coil ties, rubber bands, scrunchies, butterfly clips, and bobby pins - and my scalp continues to be sensitive to each one of those items. I never used to be able to feel my hair on my head unless I was paying direct attention to it or looking in the mirror, and now I feel it all of the time. It's so uncomfortable. I have naturally curly hair, but over the last few months, I’ve been trying to straighten it when I have the energy. This gives me a few more days of wear without it getting knotted or kinked, and I generally prefer the look when my hair is hanging limply down my back.

I never imagined three months ago that I might have to permanently change my hairstyle because of a migraine - but here we are.

I’d love to know if any of you have experienced anything similar. Did this go away over time or did it stay with you long-term?