Stigma of migraine and taking charge

Amid the current discussion about the stigma of migraine disease and finding ways to overcome it, I consider the obnoxious metaphors and media references to migraine I’ve heard or read. Here’s one: “If you thought traveling over Interstate 90 last fall was a pain, get ready for a month long migraine.”  Most likely you have your favorites, too, references that trivialize and would not be made to other serious diseases.

No more MOH!

But my focus for this post is on a term used in the medical field and migraine community that I find just as irritating – “Medication Overuse Headache (MOH).” I’m sure whoever coined this label for previously termed “rebound” migraines/headaches didn’t mean to offend anyone. It’s a simple phrase describing migraines/headaches that return or rebound once a medication dose wears off and your body tells you it needs more. (Not a medical definition, just the way I think of it.) Teri Robert has an excellent article here.

This becomes a vicious cycle of chronic migraines or headaches until you manage to break the cycle of pain – medication – pain again – medication again – pain again, and so on. I went through this process of withdrawal a year and a half ago.

I believe my migraines transformed with the onset of menopause and became more frequent while a bit less intense before I started taking medication more often for them. Eventually, I was in a rebound situation. I had taken Fiorinal and sumatriptan since Imitrex arrived on the scene in 1991 and not had any rebound or dependency issues prior to menopause. My migraine pattern has usually put me at the borderline of chronic, usually right at 14 or 15 days of migraine a month with breaks between episodes.

Now to my point: the phrase “medication overuse headache” carries a subtle implication that once again, the patient or migraineur is guilty of doing something wrong — of taking too much or misusing medication. Once more we appear to be at fault. We don’t intentionally overuse medication. I didn’t use any more than what was prescribed for me, and if anything I was overly cautious, especially with Fiorinal.

When I was first prescribed Imitrex, the only limit on it was not over 300 mg per 24 hour period. I asked my doctor if it was safe to take on a long-term basis or even a few days in a row for an extended migraine attack. I was told yes, that it was a very safe and “clean” drug. Sometime later, the 24-hour acceptable dose was lowered to 200 mg, but I was never given any other recommended limitations – until the last two-three years.

So, should we call rebound migraine/headache “medication overprescribed headache” or “medication oversold headache” instead? Now that it’s become known and publicized that taking these meds more than 2-3 days a week can cause problems, it seems we can be careful not to blame the migraineur, no matter how subtly.

Stigma — in many ways we perpetuate it unintentionally ourselves and in the migraine community. So one thing I will do to take charge of my migraines in 2011 – and help lessen stigma – is to not use the term “medication overuse headache (MOH).”

Oops… make that two things, because I’ll never have rebound migraines again, either!

This post is part of the January Headache & Migraine Disease Blog Carnival hosted by Teri Robert at Putting our Heads Together, and the theme is: Taking Charge of Our Migraines in 2011.

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