The Heredity of Migraines: Migraine Awareness Month #20 #MHAM20

It was 2008 when I learned I wasn’t the first in my family to suffer from chronic migraines. I had been diagnosed about six months prior with “intractable migraine with aura,” and I was feeling the loneliest I’d ever felt. One day, while talking to my dad on the phone, I found out understanding was much closer than I’d ever thought.

“Oh, the doctors don’t know what to do, Dad,” I said. “Nothing seems to work.”

“You should talk to Grandma,” he answered.

I was bewildered. Why should I talk to my grandmother, his mother, about my symptoms?

“She’s had them for years,” he said. “When we were younger, there were lots of days she could barely get out of bed.”

I was stunned. I knew migraine disease was at least partially hereditary, but I’d never known that anyone in my family suffered from the disease.

When I called my grandma later that day, she admitted that she’d had them for decades.

“I thought you knew,” she said. “It was awful. In my day, they didn’t really believe they were anything more than a woman’s hysteria, but I was lucky enough to have a doctor whose wife got them, too, and he tried everything he could to help me.”

Figuring out the genetic link for my disease helped me tremendously. I didn’t feel angry or victimized that I got stuck with the migraine genes when neither my father nor my younger sister did. Instead, I felt blessed to have a living relative who knew the agony I experienced every day. A woman who had been where I was and lived through it. Knowing that someone close to me suffered as I did also gave me some idea of what to expect (a true blessing for such an unpredictable disease).

While most women’s migraines go away as they age and/or with the onset of menopause, my grandmother’s never have. She still gets an average of at least one per week. And, while we don’t have the same kind of migraines (I have aura, she doesn’t; triptans help her, but do nothing for me), this knowledge of my genetic past has helped me recognize how important it is to learn how to live well with my migraines, just in case they don’t go away.

Strangely, I don’t find this a depressing thought. I see it as a lesson in preparation, and a reminder to be thankful for all the other things my grandmother passed down to me.

 

— Are you suffering from migraines that don’t respond to treatment or simply overwhelmed by the emotions and day-to-day difficulties of living with this life-changing disease? Check out my new e-book: Finding Happiness with Migraines: A Do-It-Yourself Guide. It’s available for sale on Amazon and BarnesandNoble.com.

 

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.