One of the first things I learned when I started looking for migraine information is that neurologists aren’t necessarily migraine specialists, and migraine specialists aren’t necessarily neurologists. When it comes to treating migraine and other headache disorders, one of the biggest problems is that doctors don’t have the opportunity to learn about them. A report from the World Health Organization (WHO) revealed that Worldwide, formal undergraduate medical training included just four hours about headache and migraine.
There are only 520 migraine and headache specialists in the United States who are certified in “headache medicine” by the United Council for Neurologic Subspecialties (UCNS). When we consider that there are more than 38 million people with migraine disease in the U.S., it’s obvious that there aren’t enough specialists. The UCNS certification program in headache medicine began in 2006. There are doctors who do well treating migraine but aren’t UCNS certified. Keep in mind that there’s nothing wrong with asking a doctor about his or her experience with treating migraine and if they like treating migraine patients.
The shortage of qualified migraine specialists means that many of us must travel to work with a specialist. Some people travel significant distances. Some people travel far enough to see a specialist that they need to fly for their appointments. When I first started seeing a migraine specialist, I needed to go to Philadelphia, which is an eight-hour drive from my home. That meant each appointment took two days. We drove to Philadelphia one day and spent the night there. The next morning, I’d see my doctor, and we’d drive home. I consider myself very fortunate, that my current migraine specialist, Dr. David Watson, is just two hours away.
Recently, someone told me that specialists in her area were “too hard to get to” because they’re 30 miles away. That statement truly startled me. Unless we live in a really small town, if we’re on one side of town, it’s probably 30 miles to the other side, so that distance seemed minimal to me. That statement also led me to write this and to come up with some points that may be helpful to people who feel that specialists are too far away from them:
- It’s a good idea to take someone with us to our appointments so they can help us make sure we remember everything we want to discuss with our doctors and so that someone else hears what the doctor says. It’s difficult to remember everything our doctors say, so that extra pair of ears helps. So, maybe the person who goes to those appointments with us can drive so we don’t have to.
- Yes, it’s a bit expensive, but if we’re going across town, a taxi or Uber are possibilities for transportation.
- There are often area health departments, churches, or other organizations that will help people get to appointments.
- Sometimes, it can be set up for our migraine specialist and family doctor to consult and work together. This may mean needing to go to the migraine specialist less frequently and work with our family doctor to save traveling so often.
The Bottom Line:
Not all migraineurs need to see a migraine specialist. When migraines are infrequent and / or easily treated, or if a local doctor understands treating migraine, specialist care may not be needed. In some cases, however, it is necessary to see a well-trained and experienced migraine specialist for help. Most migraine specialists treat primarily migraine and headache patients, and they go to continuing education events to stay up-to-date in new research and treatments. Here are some signs that you may need to see a migraine specialist:
- You’ve been using the same treatments for an extended period of time, they’re not working well, and your doctor doesn’t want to change anything.
- Your doctor tells you there’s nothing left to try.
- Your doctor makes decisions FOR you rather than discussing your options and making decisions WITH you.
- Your doctor doesn’t like to answer questions and / or is dismissive of ideas you want to discuss.
- Your doctor prescribes only one treatment to use when you get a migraine, leaving you no options if that treatment fails.
With the current shortage of migraine specialists, it may be necessary to travel for appointments. We also sometimes find ourselves in the situation of the specialist we need to see not being in our insurance plan. Obviously, these are obstacles to treatment, obstacles I understand all too well since I’ve encountered both of them. If I had the answers to overcoming these obstacles, I’d joyfully share them with you. I can share with you that when my specialist was so far away, my husband found ways to take two days off work so he could take me to my appointments. When we were paying the costs out-of-pocket, I also wasn’t able to work, so we looked for ways to reduce expenses so we had the money to pay for my care. Of course, I do know that won’t work for everyone.
Do you have suggestions for people who are having problems getting to a migraine specialist? If so, please leave a comment below, and share them with us.ore Helpful Articles:* _ Migraine and Headache Specialists - What’s So Special?
World Health Organization, Lifting the Burden. “Atlas of Headache Disorders and Resources in the World 2011.” Geneva. World Health Organization. May, 2011.
_Please join us for the 2015 AHMA Patient Conference on June 21, 2015. _
_Reviewed by David Watson, MD. _
© Teri Robert, 2015. • Last updated May 11, 2015.
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.