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Finding a Headache Doctor

One of the questions I’m asked most frequently is where to find a doctor who knows about headache. There are quite a few resources available if you know where to look.

The American Council for Headache Education has a searchable online database of docs who belong to the organization.

The National Headache Foundation provides contact information for doctors who have special qualifications in headache management. To be included, doctors have to devote a substantial portion of their practice to headache patients or research, have published an article in a peer-reviewed journal, completed 50 continuing medical education credit hours in headache in the last five years, presented at scientific meetings or published articles on headache, and been involved in teaching lecturing, publication or research in the last seven years.

The NHF can also tell you which organization members practice in your state. You can request this information by calling (888) 643-5552.

The About.com headache page also provides a list of headache specialists. Each doctor mentioned has been recommended by a patient or by a medical professional. The lists are broken down by state alphabetization. For example, the list that’s named New Jersey – Rhode Island includes all the states that fall between those two in the alphabet, not just New Jersey and Rhode Island.

Of course, just because a doctor is on one of this lists doesn’t mean that you’ll like the him or her or be satisfied with the treatment you receive. And you may find a doc who isn’t on any list, but you believe will be the best person to treat your headaches.

Think of your first visit as an interview. Begin by learning what the doc’s treatment philosophies are and what kind of relationships he or she has with patients. These are some important questions to help determine if this doc is the right one for you:

  • Will you or your staff take the time to obtain a detailed history of my headache? (This is probably best not asked, but is something to pay attention to)
  • Will you or your staff answer my questions about the diagnosis?
  • What tests will you do to diagnose the cause of my headaches? How accurate are the tests? How safe are the tests?
  • Do you have a plan of treatment if the first two or three recommendations fail?
  • Will you follow through with your recommendations until we reach an optimal level of therapy?
  • What treatments other than medication do you think may help me? (i.e. acupuncture, massage, physical therapy, diet modification, exercise, etc.)
  • Are you willing to work as a team with me and other health care providers, such as practitioners of complementary and alternative therapies, a chronic illness counselor/therapist, and a pain specialist?
  • What if I need help after office hours?
  • How long have you been treating headache patients?
  • Why are you interested in headache? Do you have migraines?

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Fortunate

The more horror stories I hear, the more I realize how lucky I’ve been finding doctors. I haven’t avoided crackpots entirely, but most of my care has terrific care.

Some of this is because I’ve lived in two cities with large programs in academic medicine, so I’ve been in the right place. I’ve also been there at the right time; rumor has it that my first headache specialist isn’t taking new patients. While I had to wait 6 months to see my new specialist, that’s better than no chance at all.

I saw this new headache specialist last week. One of her first comments was that my first doc has a tremendous mind. I’ve praised him many times already, so you know I think he’s brilliant. Having her confirm it at the outset was somehow reassuring. She proceeded to treat me like a human being who is involved in my own care.

In the 45 minutes she spent with me, she answered most of my questions before I even asked them. She respected my opinion and asked questions about the blog. She also told me that she’d like my help if she ever had time and staff to start a support group. We even discussed whether Trexima is all about retaining a patent on Imitrex, how drug companies ration triptans with packaging and how inaccessible triptans are for so many patients. I left the office with six prescriptions, a written list of four abortive options I’ve never tried (mostly drug combinations), and a goody bag containing $500 in drug samples.

When I needed a doctor who’s a research superstar, that’s what I found. When I needed one who stays on top of research but is patient-focused, that’s what I found. (Not to say that my first doc didn’t answer questions, discuss interesting things with me or care about me, but they have different approaches to their life’s work.)

Because I know that many of you have been through countless doctors who don’t give you the time of day, I feel like I’m bragging. That’s not my goal; I merely want to express how thankful I am for my good luck. I was so frustrated when I was searching for a diagnosis and trying drug after drug, none of which worked. But I know I have endured far less than many other headache sufferers.

I’m sorry that so few people get the respect and treatment I have received. That’s one of the reason for this blog. Raising awareness of our plight is essential for health care professionals and society at large to accord our illness with the attention and research it requires. I’m a small fish with huge plans.