Tuesday, June 19, 2012

#NMAM The Match Game

Describe the perfect doctor for your migraines. I'm extremely lucky. Although she is no longer my migraine specialist, when she was, she was AMAZING. This woman, while she was out sick with the flu, read up on my 4-inch thick medical file. She called me at home when she had THE breakthrough. At the time, she was also a pain specialist. She was the first pain specialist to believe that I wasn't a drug seeker: "I know why none of these medications have worked on you," she told me, in her thick, eastern European accent. "They can't!" She was the one who stopped the 4.5-year migraine.

The Navy had moved my husband and I from the high desert (elevation above 5000', 300 days of sunshine a year), to the greater Seattle area (sea level, 300 days of clouds a year). We had just discovered my pituitary insufficiency, and had even had the Navy delay our move and put us up in a hotel, because we were in the middle of diagnosing. I landed in Seattle with new medical information, and I was just getting my medical dream team together (Swedish Pain and Headache Center was listed as the best, and Dr. Francis Broyles was one of the best endocrinologists, and my rheumatologist had top reviews too. But it was Dr. Elena Robinson who was my migraine miracle worker.

After being able to confirm that my migraines were not medication-induced (my one-month adventure with disassociation on Gabatril, aka Tiagabine, allowed that), she put me on long-term pain pills, along with medication that wouldn't come into conflict with my pituitary disease (medications that affect the salt channels can't work on me while I'm on a salt-regulating medication!). She taught me everything there was to know about the most cutting-edge theories of pain and nerve plasticity, long before I discovered the TED and university talks that discuss the same thing. It was with her help that I was able to write my paper on migraines. She took time out with me at each patient visit, often allowing me to stay longer (because she knew I had the time to wait) and giving me more information at little breaks she was able to get between other patients. She always answered all my questions, and let me know what her thinking was.

She wrote letters to Medicare and Tricare on my behalf, trying to get botox approved for my migraines when the FDA hadn't added it to their magical list yet. She wrote letters to the Department of Education to try and get them to stop garnishing my student loans (through an application for permanent disability). She bought me chocolates (completely forgetting in the panic of the moment, that chocolate was one of my triggers), after the horrible incident with the surgeon. She called a pharmacy to yell at them when they refused under the "morality clause" to refuse to fill a pain prescription. She yelled at another pharmacy for me when they screwed up and put "take every 1-2 hours" instead of "take every 12 hours" on a slow release narcotic I was on. She was the one willing to try the Fentanyl lollipop for me (a medication I was required to keep under lock and key), only to discover (to our chagrin) that Fentanyl doesn't work on me at all.

Most of all, she believed in me. She believed in my willingness to fight and beat this, and not be a heart-sink case, even though everything else had failed, and I was in "here there be dragons" land of the medical world. After she knew it was my disease, and not me that was obstinate and difficult, she was a champion for me. I miss her, but I'm glad I no longer need her.

I still average 1-4 migraines a week, but now they're so minor that they rarely get in my way. Every once in a while, when the weather goes really wacky, I'll be down for the count. The only thing that isn't medicated is the emotional swings (because there are no medications for migraine mood swings). But given my current tool box, I'd call my migraines managed, which is absolutely amazing, considering where I've been.

Migraines took me to a deep, dark hell, one from which I thought there was no escape. But I climbed those obsidian walls, through brimstone and fire, and pulled myself up from those depths, to see blue skies again. The future is even brighter. Now, perhaps if we're able to manage or eliminate my pituitary disease, we might be able to take the migraines down yet another notch! This will allow for less medication, and the less medication I can be on overall, the better.

I had the perfect doctor for my migraines, and she made all the difference.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

1 comment:

  1. It's fantastic that you actually found this amazing doctor. It is really a story of hope for so many people to know that there are doctors out there who can make all the difference. Wow.
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