The Doctor is (Too Often) Out

Imagine looking for a doctor to help you with your migraines and on your first visit, he tells you that because of your lack of education, you couldn’t possibly understand the information about the drugs you’re asking about. After your second question, he insists that you stop asking questions.

Unfortunately, this story is real. It came from comments written about one headache specialist on www.ratemds.com. (There were 7+ similar comments.) I wish I could say that I picked the most bizarre comments to make a point but that’s not the case.

I’ve had bad migraines for more than forty years and they’ve been chronic for more than fifteen. I used to be able to tell they were coming because the splotches in my field of vision gave me twenty (count’em!) minutes to get to a safe place. Over time they’ve morphed and the aura has disappeared. Now they creep up slowly and play, “Got’cha!”

When the nerves in your teeth are screeching and your hair hurts, you know it’s a bad one. When this became a daily occurrence, I had to do something. So I found a headache specialist. I wish I could say my story had a better ending, but the drugs only do so much for me. I’ve learned to accept that the migraines and I have to live together in the same body.

I have a unique perspective on medicine. I had been the head of health education and training for a health maintenance organization so I got to know good docs and great medicine. Like when hubby was in a serious car accident and got his arm smashed to smithereens and the head of orthopedics put him back together like a puzzle. I also got to see that docs were regular people and that a lot of what they deal with is frustrating (colds aren’t cured by antibiotics, few people get any exercise, etc.).

Most doctors simply don’t know enough about migraines to deal with people with intractable migraines very well. If we seem upset, at-our-wits-end, or even drug-seeking (when in agony), it’s probably because unanticipated, incessant pain imply doesn’t seem to have a place in a “normal” life and livelihood. This. Is. Hell. How am I supposed to be a good spouse and parent or a decent worker bee, when the florescent light is screaming and the pain is like a dozen tiny serrated knives in my eye and they tell me I’ll be fired if I take any more leave?

If you are one of the many people who looking for help, here’s some advice on finding a doctor that is good and nice.

1. If you have regular migraines, consider starting with a headache specialist because the other doctors probably don’t know enough. Pay out of pocket if you have to because there is some research to show that the longer you go without adequate care, the worse your headaches will get. If your headache specialist isn’t covered and you do have to pay out of pocket, find a headache specialist that talk to and work with your primary care doctor. (That’s not a lot to ask.)
2. Look up the headache doctors on www.ratemds.com,www.healthgrades.com, and other sites that rate doctors. But this is simply a source of information because people can and do enter bad information just like they do on Amazon.
3. You can also get a good idea about the bedside manner and skills of headache specialists from psychologists who work with chronic pain patients. And nurses and admin folks who work with those docs can also provide good information.

I knew to do all three and found the best person in my area and this was the same person recommended by my client.

If you are a headache specialist and you’re not patient-oriented, here’s my plea: Migraines begin to take away family time and fun and our livelihood. They take away our hope. We need you to hear all of our pain. In time we come to understand that there’s a limit (for some of us) to what medicine can do but please give us this time.

Patti Shank, PhD is writer and researcher on learning, health, and well-being.