Miss Migraine: Efficacy vs. side effects

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on July 30, 2012, on my blog of the same name.

I’m taking 150 mg of Effexor every day. Photo by Kelly Lynn Thomas.

When it became clear that zonisamide (brand name Zonegran), an anti-seizure medication sometimes prescribed for migraine, was doing little more than eliminating my aura, my doctor gave me a choice.

“Are you more worried about side effects or efficacy?” she asked me. “Because you can try Prozac, which is easier to handle but not as effective, or you can try Effexor, which is much harder to handle, but more effective.”

I didn’t want to take an anti-depressant, but my blood pressure is too low for the blood pressure medications that can be prescribed for migraine patients. So I weighed my options. The throbbing in my right temple spoke for me.

“Efficacy,” I said. “Things have been pretty bad.”

She explained the possible side effects: sexual dysfunction, risk of increased depression or anxiety, trouble sleeping. In the past, those would have been unacceptable side effects. But after four years of constant, unending, continuous pain, I was willing to make sacrifices.

I left feeling hopeful.

Three weeks later, all feelings of hope have evaporated. I wake up every hour or half hour during the night. In the morning I feel anxious for no reason. I am lightheaded and dizzy, and sometimes nauseous. The poor sleep is leading to more severe migraines.

I remember why I hate medications, why I hate doctors, that nothing has ever helped. Waves of despair wash over me and I feel like nothing ever will. Taking Effexor is harder than I imagined.

But then I take a deep breath and remember that my doctor told me tapering up is the hard part. I haven’t even been taking the full dose for a week yet. I have to be patient, but that’s not something I’m very good at. It should get better. My body should adjust. And if it doesn’t? We’ll try something different.

I just have to work on being patient.

 

Where I’ve been (Hint: Not in a good place)

I’ve been struggling. My migraines are terrible, my insurance has denied coverage for a medication that would probably make me feel better, and I’ve lost the ability to make decisions.

For awhile, I thought I was going to shutter this blog entirely, but I’m reluctant to let it go. Sometimes writing about migraine disease is the only thing that prevents me from succumbing to the depression that goes hand in hand with being in pain 24/7. But like I mentioned earlier, I’m giving this blog a sort of half-life by only posting once or twice a week and not telling anyone it exists.

The whole reason I started this blog was to a.) help me process and understand migraine and what I have to go through because of it, and b.) to help make people more aware of migraine disease and its affect on sufferers.

I still feel strongly about that second part, and I suspect the first part is more important to my mental health than I know. Writing is how I process things, how I work things out. When I’m not writing about migraine I’m often stuck in a loop of “my life sucks.” When I do write about it, I can see the positive side of things better, like when I have a good day or am productive despite the pain.

So for now I’ll continue. I’ll get back to posting every Wednesday, and try my best to post more often. I’ll spend more time promoting the blog (in a social, friendly way, of course!), in hopes that I can engage not only fellow migraine sufferers, but also those who don’t have migraine but would make good friends and allies.

Onward and upward!

Miss Migraine: Another way of living

Banner that says "The Adventures of Miss Migraine"

The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on August 3, 2012, on my blog of the same name.

I am currently reading a book of essays on writing fiction called The Half-Known World, written by Robert Boswell. One of the essays examines the use of “alternate universes” in literary fiction–not literal alternate universes like the Bizarro World of Superman, but moments in a text when a character’s “vision expands beyond its usual limits.”

On page 111, there’s a passage that struck me as particularly relevant to those of us living with chronic illnesses, especially invisible ones. The passage is as follows:

There are times when it seems there must be some other way of living, moments when the utterly ordinary takes on a measure of strangeness. Now and again, you may even feel as if you live in two worlds at once, one that is orderly and regular and looks like representations of life you’re accustomed to, and another that is disorderly and irregular and nothing like representations you’ve seen anywhere.

Even though the essay is about fiction, this paragraph speaks directly about people. And I know this feeling exactly.

For a long time I tried not to talk about my headaches, because it always garnered the same responses: do you need glasses, could it be something else, that sucks, I’m sorry, the you-are-faking-it look, the awkward silence. So I lived (or tried to) like a superhero, with two identities. Normal Kelly, who went out and did things and had fun,  and Migraine Kelly, who laid in bed with an icepack on her head. In many ways, that hasn’t changed, except that now I talk about my illness openly (and try not to get too irritated by the canned responses).

And then there are times — a half a day every few months or so — when the pain subsides to the point that I don’t notice it at all. In those moments, I feel wonder and amazement. I search my head for the pain. It’s hard for me to believe that it’s not there, but when it isn’t, truly isn’t, I feel as though I’ve been transported to another universe, maybe another body. I wish I could stay there, but a migraine always brings me back to myself.

Ultimately, I’m not sure which mode of being feels more normal to me, more “orderly and regular,” and which one feels more strange, “more disorderly and irregular.” That scares me a little bit. I’d like to say I’m accustomed to being normal and social and happy, but I fear the truth is that I’m not. I’m accustomed to being in pain, to limping through life, being careful not to do anything to make the pain worse. But I do feel like somehow, some way, there must be another way of living. I just haven’t found it yet.

(The book is, by the way, quite excellent, and I’d recommend it for any writer or avid reader. Click here to order the book. I’m not getting anything to say that, either!)

What’s your “normal” mode of being? How do you envision that other way of living for yourself or anyone else you know who lives with an illness?