Headache illiteracy contributes to stigma

June 26, 2016 by Tammy Rome Advocacy, Migraine 0 comments

Migraine is stigmatized. On that we can all agree.

Part of the problem is widespread illiteracy. Doctors, patients, and the general public are all guilty. We toss around words like “headache” and “migraine” without having a clue what the words mean. In the absence of good public headache education, it’s become the Wild West. Each person assigns meaning relevant only to their own experience and woefully limited knowledge. We simply do not know what the hell we are talking about.

For me, it’s not a migraine until…

NO, NO, NO, NO!!!!!

Migraine is a specific diagnosis with specific symptoms. There is no personal definition. Either it’s migraine or it’s not. In most cases, it IS migraine whether you think it is or not. Migraine is a genetic, neurological disease with NO CURE. It is ALWAYS present. Studies have demonstrated that the brains of patients with Migraine are different than healthy brains even when the patient has no symptoms at all. Like epilepsy, Migraine is characterized by period flare ups, also called attacks. These attacks are what most patients refer to when they say, “I have a migraine.”

No, honey, you don’t.

You have Migraine disease. Because of that, you are experiencing a flare-up called a Migraine Attack. There is a difference in terminology and it does matter. Now that you know, please help us break the stigma by using the correct vocabulary, even if you have to correct your doctor.

The problem isn’t just with patients.

Over HALF of all people living with migraine have NEVER talked to a doctor about it. Of those who do seek medical help, less than 25% even get an accurate diagnosis. For those who manage to get a correct diagnosis, less than 45% are offered appropriate abortive, rescue, and preventive treatments. There is a desperate need to educate primary care physicians on the diagnosis and treatment of headache disorders (see Barriers to Good Medical Care for Chronic Migraine for more details).

Getting the right diagnosis is a huge hurdle.

There’s an official guide for the diagnosis of Migraine and hundreds of other headache disorders. It’s called the International Classification of Headache Disorders. A PDF copy is readily available to anyone with an internet connection. It is internationally recognized as the definitive guide for diagnosing headache disorders. Any doctor treating headache patients (even a neurologist) who does not use this guide is not a real headache specialist. They may be able to help someone with mild, Episodic Migraine that happens a few times a year. They will not be able to help patients who lose DAYS every month to debilitating attacks.

Here’s the bottom line:

Educate yourself.
Nobody learned this stuff in medical school.
You can’t always trust your family doctor’s advice about migraine.