Fifteen years and still going

My senior year of college, I ended up in the hospital because I’d suddenly developed severe aphasia. I could think of what I wanted to say and I could write it down, but words just didn’t happen. No one clued in that it was a complicated migraine or a migraine aura because I didn’t have a history of migraines at that point (just headaches) and I didn’t actually have the migraine with the aphasia, until two days later.

That started my journey with chronic migraine. In the last fifteen years, I have tried just about everything. I used Depakote, which helped somewhat but I also gained a hundred pounds on it. I switched from Depakote to Topamax, which gave me kidney stones, and after the second one I told my neurologist I’d rather have the migraines. Amitriptyline didn’t work for me, neither did propanolol. I’ve had short-term relief from acupuncture and chiropractic, and massage therapy has helped with the tension headaches I get but is less useful for the migraines.

These days I do Botox injections every three months. They help, somewhat–they get me down to 1-2 migraines a week instead of every day. But it’s not a cure-all.

For rescue meds these days I rely on oxycodone and phenergan. I have hit or miss luck with triptans–my reactions to them are unpredictable and sometimes they help but sometimes they make things worse, so I can’t count on them as a front line defense.

It took me five years and four doctors to find a pain specialist I like who works with me and understands that I’m not abusing my oxycodone, I just need it to get through the week. I still have to jump through a lot of hoops, but so far I’m making it.

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