Not a nose tumor….
It’s an odd moment in life when you find yourself hoping for a nose tumor.
A few years ago, when migraines had derailed my working life and I was spending most of my time in bed, I went to see my headache specialist. At that routine exam, he announced his retirement. Perfect timing, I thought. To make matters worse, he admitted that he was at a loss as to whom to refer me to due to the complexity of my case. I suspected my case didn’t bring him any joy: he had not been able to “fix me.” The truth was, I had no real improvement under his care.
Headache clinic bonding
After some research, he suggested I consider a three-week, in-patient stay at a headache clinic in Michigan. The comprehensive behavioral and medical program was designed to evaluate, assess, and provide treatment for patients with migraines. And though I certainly had already been evaluated, assessed and treated multiple times for migraines over the course of many years, it was my hope that by going, perhaps I would find some new solutions.
Based in a small hospital setting, patients had roommates and daily group and individual sessions about how to manage pain and stress. It was the first time I’d ever met anyone else with migraines as bad (or worse) than mine. We bonded with each other about our conditions, and yelled at headache commercials on TV for making light of our condition. And every day, we were run through a variety of medical tests and scans including blood draws, MRI’s, CT scans, and the like. Patients met with a team of medical doctors regularly to check in regarding progress and the specifics of their case.
Other patients' test results
During my stay, many of my new acquaintances would return from these team meetings absolutely giddy with news. One gal appeared in the cafeteria with news that a test had revealed she had low spinal fluid – a relatively easy fix that might mean a complete remedy for her migraines. Another reported gleefully that they had found a benign nose tumor, something that was quite likely causing her pain. And though it would require minor surgery, the prognosis was very positive. Removal of the tumor would likely stop the migraines.
The rest of us attended the team meetings with baited breath, oddly hoping for some similarly strange but treatable diagnosis. Of course no one wants a nose tumor, but what a poignant moment in the life of someone with migraines. To find out that all this time, it was something simple. Not a complex neurological condition. Something that could be addressed, and would mean, at the flip of a switch, a life free of pain.
No magical fix
But no such luck for me, or for most of us at the clinic. It was like waiting in earnest to be asked to dance at the prom. The handsome boys reaching just past us – our hearts racing, thinking we were about to be chosen- only to have our hopes dashed. Ultimately our prognosis felt like a sort of life sentence: “You have chronic migraine.” But I knew this going in. I was sent home from the hospital stay with a lot to think about, a group of good friends, a big bill to pay off, and no new diagnosis. There was no easy solution. No tumor to be removed. Just a lifelong wrestling match with an invisible opponent. And a beautiful awareness that I wasn’t alone in the fight.
How much has your migraine disease changed or evolved over time?