Woman with back turned to doctor giving another diagnosis.

My Migraines Were Misdiagnosed For Years

I’ll read the last pages of a book while still in the middle. I’ve been known to text friends to ask how episodes of TV shows end. I’m not so good with not knowing. Which is why when my migraines started, I wanted to know the story behind them too.

Visiting a TMJ specialist

I’d stumped the doctor. I was informed my “migraines” didn’t fit the traditional mold: throbbing pain in the forehead, temples, and the back of the neck. My agony felt like the side of my head was roasting and a hot spike had been pushed through my jaw. It was the jaw pain that had confused my General Practitioner. What I’d described won me a lovely parting gift in the shape of a referral. I was off to visit a TMJ specialist.

After saying Temporomandibular Joint ten times fast, I learned that this is the hinge that connects my jaw to my skull. The maxillofacial doctor I saw suggested I try a custom-fitted night guard to help with any misalignment or jaw clenching. The hard, acrylic night guard I wore between my teeth, was supposed to relax my jaw muscles and stop the TMJ related “headaches” with which I’d been diagnosed.

The expected waiting period to fix a jaw

Three maxillofacial specialists, two different types of night guards, and way too much time later, my symptoms had not abated. They were getting worse. I expressed my concerns to my latest doctor. I explained that even though the location of my pain may fit the TMJ template, the rest of my symptoms manifested like a migraine: sensitivity to light, sound, and smells, nausea, and vomiting.

“I really think these might be migraines…” I told my specialist.

“It just takes time to fix a jaw,” The specialist assured me.

Searching for answers on my own

My roasting head was forcing me more and more to cancel plans and ditch dates with my husband. My side of the bed had a permanent indentation of my outline. My doctor was compassionate but not hearing me. Keeping my doctor appointments, but also listening more to my own body, I decided to look for answers in my own way. My first step was to set up a migraine diary. Maybe there would be a recognizable pattern that could help me find a possible cause. There was.

Finally being diagnosed with hormonal migraines

All of my debilitating head pain centered around my hormonal schedule. Why I had I never noticed? I made an appointment with a neurologist that specialized in hormonal migraines. We talked about symptoms, watched my cycle, and I was finally diagnosed with hormonal migraines. My road to a less painful life began then and there.

I wish I could flip to the end of my migraine story. The beginning proved painfully dramatic, while this middle has taken a turn for better. I wonder, though, will my head ever stop roasting itself? Like any good story, there are twists and turns and it’s not predictable. Still, I'm hopeful there are answers yet to be found, and I'm crossing my fingers for a fairytale ending.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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