When My Doctor Gave Up on Me

The headache specialist said: “Research is finding new treatments, but nothing is available to help you now. You’re the same age as my daughter. I would want her to have relief while she waits for better medicines.” He tried to soften the blow, but his words made it very clear: he could think of no other treatment ideas for me, so I should go on Opana, a long-acting opioid, until “science caught up with” me.

I heard: “You won’t ever get better. Your migraine attacks will always be severe and disabling.”

The doctor’s words and manner were compassionate. He truly wanted to help and for me to be comfortable, but the effect was the same as if he’d been hardhearted: I believed I had no reason to hope.

The year following that conversation is the one I call The Worst Year of My Life. I was in horrendous pain every day and housebound in a place where my husband and I had only one friend (who had a two-year-old and her own health problems). When I did manage to leave our apartment, the city gave me sensory overload, people were brusque, and the weather was so cold my head hurt even worse. All those elements added up to a difficult year, but the very worst part was that I’d given up hope that I would find a treatment that could ease my endless, severe migraine attacks.

The only future I could imagine held days filled with horrendous migraine attacks and nothing to ease the pain, severe nausea that prevented me from eating, crying myself to sleep every night while wondering how I would survive even one more day. Even reading, a pleasure and escape ever since I could read, was a landmine, as it had become a migraine trigger. Death was the only end I could see to this misery.

My headache specialist was so kind and truly sorry when he told me long-acting opioids and patience were my only relief. This prevented me from seeing how clearly his words led to my loss of hope. He didn’t tell me that *he* was out of treatment ideas, but that no existing treatment could help me. Ironically, when I did find relief three years later, it was with one of the oldest migraine preventives available, cyproheptadine.

I don’t believe one person can steal another’s hope. I gave mine up of my own volition, but it was in response to incorrect information. It’s not that I wanted the headache specialist to offer false hope instead. I needed a doctor who wouldn’t give up on me before suggesting some of the most basic migraine preventives available. I needed him to acknowledge that although he didn’t know what treatments to try next, someone else might. My current headache specialist has an incredible skill in balancing the truth with hope. He is honest about what a difficult case I present, while also recommending possible treatments and keeping me abreast of current research. The gist of his message is essentially the same as my former headache specialist’s, but I never feel discouraged when I leave his office.

I can tell you with confidence that I will never give up hope. I’ve already tried that. It led to even darker, scarier places than I could have imagined. When I reclaimed my hope, it was stronger and more realistic than before. Instead of feeling like a vague concept, my hope feels like a solid support that I can turn to in times of despair. Hope has given me so much, and led to so much relief, that I will again give it up. No matter what any health care professional may say to me.

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