Hanging in There: One Patient Advocate's Story of Chronic Migraine
On January 8, 2012, I sobbed and screamed for hours. I did not know how I could continue living with the constant horrendous pain and gut-wrenching nausea. I was sick of having a life that was nothing but unending severe migraine attacks. Having moved from Boston to Phoenix for more stable weather in November 2010, the migraines were actually better than they had been two years earlier. I was no longer having daily level 8 or 9 (and sometimes 10) pain — and was devastated that I was “better” but that wasn’t good enough.
I had spent a couple days before that imagining how I would commit suicide and planning my funeral, but ultimately decided I could not take my own life. Instead, I wished for cancer that I could leave untreated, thus achieving the desired result without having to actually kill myself.
That was not the first time I’d contemplated my death as a way to escape migraine. Not even close. The thought had crossed my mind so many times in the previous nine years that at one point I practically begged a psychiatrist to put me in an in-patient unit. It is not that I didn’t want to live, but that I didn’t want to live with migraine.
I know intimately what day after day of unrelenting migraine is like. How it seems like the pain will never let up. The bleak outlook that settles in when it seems like you will never again enjoy a child’s laugh, a glance at the sky when the sun is shining, the smell of a flower. And I mean that literally, not in some poetic writer’s phrasing, as the heightened senses of migraine transform sounds, sights, and smells from ordinary experience to knife-like pain.
After 10 fruitless years of seeing countless specialists, attempting numerous conventional and alternative therapies, and trying more than three dozen preventive medications, I finally hit on something that reduces my pain. With a daily dose of 1,000 mg of magnesium and 12 mg of cyproheptadine, the daily pain went from a level 7 or 8 a year ago to a typical high of 4 or 5.
I am now 36 and, though a few years ago it seemed impossible, I can now go to yoga, meet friends for dinner, and host game nights. I still have weeks relegated to the couch, still have to cancel plans, still have to stay in bed while my husband hosts friends in our messy house. I am still not living the life I thought I would before migraine horned its way in. I don’t think I ever will, but I can live a full, rewarding life around migraine.
“I am here,” the mantra I mentioned in Showing Migraine Who's Boss, encompasses all of it: I am here for the painful, frustrating parts of migraine and life; I am also here for the reprieves. Knowing what I do about migraine, my future likely holds more horrendously painful stretches. Nonetheless, I show up for all of it. The good parts are just too good to miss.
Please know that you are not alone in the sometimes relentless misery of chronic migraine. It may feel like you've tried everything, but there are always more options. Finding the right treatment can feel like endless trial and error, but hang in there. You will find something that helps. Fellow patients and patient advocates at Migraine.com can help you through the tough times. If you are considering suicide, contact the National Suicide Prevention Lifeline at (800) 273-8255.
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