A Possibly Long, but Always Worthwhile Journey

Teri Robert • May 15, 2012

One of the most difficult and frustrating elements of Migraine and headache treatment is the initial diagnosis. Most migraineurs and many people with other headache disorders have symptoms for years and see many doctors before finally being accurately diagnosed.
Why is that? One reason is that there’s no diagnostic test to say, “Bingo! This person has Migraines (or cluster headaches, or another headache disorder).” For the most part, diagnosing headache disorders is still, unfortunately, what’s called a diagnosis of exclusion. They’re diagnosed by reviewing our medical history and our family’s medical history, discussing our symptoms, conducting an examination, and ruling out other possible causes for our symptoms. This takes time. It requires us to be good observers of our symptoms, and it takes a certain amount of knowledge, skill, and perception on our doctors’ part.
And why is it so hard for most doctors to diagnose headaches? A major reason is the lack of “headache” education during medical school. A 2011 report from the WHO revealed that the average doctor finishes his or her medical education with a total of four hours of education in Migraine and other headache disorders. The average neurologist finishes with 10 hours. There are barely 300 board certified headache specialists in the country, and fewer than a dozen and a half fellowship training programs in headache medicine. Hardly enough to address the 60 million people with headache!
Still, despite the problems, accurate diagnosis is both possible and very beneficial. It’s well worth pursuing. This is where we, as patients, must be proactive and determined. In the end, we’re responsible for our own health and our own health care.
Once we have a diagnosis, we can start learning about our Migraines, tension-type headaches, cluster headaches, or whatever headache disorder we’re dealing with. Just knowing what it is relieves a great deal of the tension and fear. Once we know what we’re dealing with, we can work with our doctors to determine if there are lifestyle changes we can make to help with trigger management, discuss medications and other treatments, and start getting a plan in place.
There may well be times when you feel like giving up, and that’s understandable, as long as we don’t give in to that feeling. I know what that’s like. At one point, I found myself in bed five or six days a week with a Migraine that nothing touched and doctors who either didn’t know how to help or just kept prescribing the same medications month after month, despite the fact that they did nothing. Giving up came to mind often, but I got angry instead, hit the internet and learned about a Migraine and headache specialist who was helping people in situations similar to mine. I’m so very glad I didn’t give up. Now, I take daily preventive medications and have about one Migraine a week, but I’m functional and manage a reasonable quality of life again. There are doctors out there who specialize in treating headache disorders. They truly care, and they can help. But it is up to us, as patients, to find them and partner with them to improve our situation.
My wish for everyone reading this is that you’ll persevere in getting an accurate diagnosis and finding a doctor to work with as a treatment partner. Both are possible, and both are worth the time and work.

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