Last week, I plodded slowly up the hill below my house, grunting with relief when my run timer went off before the steepest incline. Another runner bounded by me, and I had a moment of jealousy. But then I saw where I was standing and a different feeling overwhelmed me. On a cold, rainy day eight months earlier, my boyfriend and I had stopped on this hill. I was shaking and out of breath then, too, but we hadn’t been running. Instead of being at the end of a 5K jog, we’d been halfway through a 10 minute walk. He’d asked if I needed help the rest of the way. For months, I could hardly get my own groceries. Now I was running nearly every other day. I felt how far I’d come in that moment. I revelled in my strength and had to restrain myself from spinning around with happiness.
I have chronic migraine. The technical definition of chronic migraine is more than fifteen headache days per month over a three month period of which more than eight are migrainous. The lived definition is a blur of pain and vomiting, strange visions and smells and sounds, a head full of fog, and extraordinary loss of time.
The joy and satisfaction with my physical self were an abrupt shift. My thoughts for most of the run had centered on my work, or rather, my inability to do any. While my body is thriving, my mind has been on the opposite trajectory: I started running in mid-April. I’ve done almost no work since the beginning of May.
For decades, neurologists have been trying to find a medication or treatment for my condition. When I ran out of options, my new neurologist started giving some of the failed drugs a second look. Many migraine drugs have unpleasant side effects which are worse when you’re a young teenager whose neurologist doesn’t titrate the doses properly. Which is how one of the first drugs any neurologist tries for migraines like mine became my last chance drug.
The side effects for topamax are myriad: 72 are common or very common. 184 others are possible. The paraesthesia was severe enough that I fell getting off the bus, but it faded with time. The aphasia is usually funny. The weight loss is welcome after the gain of all the other migraine drugs. The constant runny nose has legions of allergy suffers commiserating with me. But I need to sleep an extra day a week. I have trouble focusing. I forget things all the time now. I read things I used to understand, and I no longer understand. I want to work, but I have no motivation. I am overcome by waves of fatigue.
Topamax didn’t reduce the frequency of my migraines at all, only the intensity. Pain is a small (but terrible) part of a migraine; strange neurological symptoms – a foggy, stupid brain are also part of the package. It’s hard to say on a given day whether my struggle to work is the result of topamax or a migraine. I do know that days where I am focused and motivated and clever disappeared months ago.
At the end of my medical leave this spring, I did two weeks of half-day work. In the 4 months since, I’ve probably done about that much again. My PhD is in trouble.
But aside from my worries about my career, I am so much happier and healthier. My loved ones notice the difference. They notice that I’m more present, that I’m not in pain, that I don’t have to cancel or change plans as often. I like the effect topamax has had on my relationships. I feel more equal, less of a burden, more interesting. But I’m afraid I’m not going to be able to finish my PhD, that I’ve crippled myself with how far behind I’ve gotten.
When I spoke to my neurologist about my concerns he told me to wait and see if the side effects got better. And so I waited. And while I was waiting I became sad and frightened and paralyzed. I didn’t speak to my advisor about the extent my health impacted my work. I spent days in bed crying.
My neurologist seemed a bit confused that I was complaining about side effects when I’d had such a positive response to the drug after so many years of terrible pain and the frustration of migraine drugs that did nothing for me.
It’s true that I wanted the pain to stop. Migraines are very, very painful. I used to have many that left me hardly able to move, hardly able to think except to hope I’d die. Now I know that I’ll likely be able to chat with a friend or read a silly novel during a migraine. That is a relief and I am grateful.
But if my doctor had asked me what I wanted from a migraine drug I wouldn’t have said pain relief. I’d have told him I wanted my life.
Perhaps a life of novel reading and chatting with friends is one to be satisfied with. Perhaps if we lived in a world with a basic income and no stigma against people with disabilities, I’d trade my mind for this less-pained body. I’d read novels and garden and cook for my friends and lovers and learn to draw. But I’ve already re-imagined my life because of this disease and it was very hard. I want a PhD and I want to do science. I’m not ready to give up this dream. Plus, I need to be healthy and clever enough to at least support myself, and I’m not there yet.
I’m not ready to give up on topamax or my PhD yet. I’ve gone to a lower dose and I’m seeing a counselor and doing a program for people with chronic disease. Perhaps if topamax backs down a little bit, I can learn to work with it. If that doesn’t work I’m going to talk to my doctors about treating some of the cognitive side effects with medication. And I’m going to sit down with my advisor ASAP and figure out how to deal with my schedule and funding. I have accommodations that allow me to extend my deadlines, but my funding won’t last forever.