I realize I haven’t written about my migraines in a while. It’s such an agonizingly slow journey, so there are long stretches where there’s not much to say. I have some new thoughts on why we risk migraine triggers and a few updates on my migraine treatment plan.
The Migraine Juggling Act
I have quite a few friends with fibromyalgia, so I’ve been thinking a lot about the parallels between dealing with migraines and fibro. In both cases, you learn what sorts of things trigger your flare-ups, then you decide to avoid those triggers – or not. You also learn what things work to get your flare-ups under control again. So both fibro and migraines require a two-pronged approach of prevention and treatment of flare-ups. Unfortunately preventing migraines/flare-ups and living an actual life can be in direct conflict. I know that travel is most likely going to give me migraines, so if I don’t want a migraine, I should stay home. But what kind of life is that? Sometimes I just have to choose the route that is more likely to trigger migraines. It’s a balance of risk and reward, like anything in life. I think that my friends dealing with fibromyalgia would tell you the same thing. We’d have no lives at all if we didn’t risk the pain.
Zonisamide, Botox, and Aimovig! Oh my!
Last time I blogged about migraines, I was taking gabapentin, an anticonvulsant, as a migraine preventative. It didn’t cut down my migraines at all. In fact, it made me drowsy, gave me brain fog, and made me SO HUNGRY ALL THE TIME. I couldn’t stop thinking about food. Seriously. I’d eat a double-portion of dinner, and be thinking all night about what I would eat in the morning. Yuck! So I slowly stepped down from the gabapentin, as directed by my doctor.
The next thing she prescribed for me was zonisamide, which is a new anticonvulsant medication, more closely related to Topamax. It’s made me drowsy, irritable, given me crazy nightmares, I have low appetite, it’s made my hair fall out, and I can’t regulate my own body temperature, which means I go between freezing and burning up dozens of times a day. Now here’s the rub: I think it’s helping my migraines. I’ve gone from 17 migraines in July to “only” 9 migraines in September. Sigh. What’s a girl to do? I’ll talk to my neurologist to help me decide. Are these side effects worth it?
As for Botox, the last two treatments (March and July) do not seem to have been effective at all. They were given to me by a different nurse than before, so that might be why. I really don’t know. But my neurologist wants me off the Botox so I can try the new migraine medication Aimovig, which is a once-a-month injection. Really hoping insurance will cover this one, because it retails at $6900/year. Oh my!