Tales from the Trenches: The Ever-Elusive “Right” Migraine Doctor

My migraine adventure began sometime in late 2007. I don’t know how long the migraine had persisted before I realized it wasn’t going away, but at some point I decided to see a doctor. At the time, I never considered I might be suffering from a “migraine,” I just knew I was in a lot of pain. And, it wasn’t the first time.

Around 1998, I had what I considered a very bad headache. I was in high school, though, and figured I could power through. I had work to do, friends to see, and a younger brother to attend to, so I gritted my teeth and self-medicated until it finally went away – in 2000.

For years, I was mostly headache free. I would have one every once in  awhile, but I figured everyone did. And, since they always went away, I didn’t bother about them too much. Until 2007 – when everything seemed to change.

I went from my PCP, to a neurologist, to an ENT, to special migraine doctor after migraine doctor. I finally had a diagnosis (intractable chronic migraine with aura), but no one could fix me. I saw the “best” migraine doctor in the country – the doctor everyone assured me could help – to no avail.

From city to city, I tried every triptan there is, a number of drugs I’d never heard of, day-long infusions, and more. I was poked, prodded, scanned, and examined. I was (mis)diagnosed with Meniere’s disease and had to undergo routine ear screenings every three months for two years. When it turned out I didn’t have Meniere’s, I was diagnosed with migraine-associated vertigo and told there really wasn’t much anyone could do.

At the time, there were no headache specialists in my city, so I saw my neurologist (who, I felt, had pretty much given up on me) and a pain management doctor on a routine basis. I underwent yearly MRIs and exams every few months. I was on Oxycontin three times a day, just so I could make it to work, Klonopin, a half dozen supplements, and every preventative in the book – and nothing helped. The pain didn’t go away – for two years.

Then, I moved to New York, and decided that since nothing helped, I was going to stop everything. No doctors, no pills, no exams. Nothing. I was going to do what I had done in high school – grit my teeth, self-medicate, and hope that eventually my life would return to normal. And, it did – kind of.

It’s now almost five years later, and I’m no longer considered “intractable.” While I still get migraines more days then not, they usually go away – eventually. It could take hours, more often it takes days, but I usually get some relief at some point. Now that the cycle is somewhat broken, I’m still holding out hope that I can get to a mere four migraines or less a month. And, I’m still looking for the doctor who can make it happen.

I’ve been loyal to my neurologist for years, even going back to her once I moved back from New York, but I’ve recently started looking into some other options. My city does have several headache specialists now, and I’m trying to get consults to see about switching. I’ve seen one, and since he didn’t offer anything I haven’t already tried, my search continues.

I wish we had more doctors, more – and better – medicines, and more options for care. Unfortunately, though, not much has changed since my grandmother went through this same thing fifty-plus years ago. We do have triptans now, which are lifesavers for some – including my grandmother, who still gets migraines a couple times a week – but they don’t work for everyone, including me. And, they’re contraindicated in many others. We also have some ergot derivatives, but not all of us can take those either. (I, for instance, see a ton of black dots and pass out if I take Migranal.)

There is a lot of push in our community right now to draw attention to the need for additional migraine research. I can only say that my experiences have shown me that we desperately need that attention. We desperately need more money for migraine research, and more funds to send neurologists and other doctors to school for specialized migraine training. In short, we just need more. Until then, however, I’ll keep looking for the ever-elusive “right” migraine doctor who can help.