September 10, 2014
I looked up at the iv bag, half empty now, wondering when or if it would work. The drug dripping coldly into my arm was one familiar to me. In the past, it had made me writhe across the bed in a confused panic. Now they knew about that side effect and gave me something to counteract its awful effects first. It made me groggy, heavy, but did nothing for the pain.
Eight days earlier I’d made the decision to lower my dose of topamax by 25mg. Topamax was making me stupid, but it was also helping my migraines. I thought perhaps the drug and I could come to some sort of agreement. Almost immediately after lowering the dose, I began to write again. I opened my PhD proposal and picked away at my advisor’s comments. I did my duty over at Tenure, She Wrote. I parsed my feelings about topamax. While I wasn’t working full days, I had ideas and I wanted to express them. The fog was lifting.
I still had migraines nearly every day, of course. But they were manageable. At first.
On Friday morning, my head hurt. It wasn’t very bad. I put the pain aside, slowly went through my morning routine, and visited my counsellor. We talked about my compromise with topamax, my hope, and strategies for working with pain. I was tired after my appointment, and then the pain got bad. I waited four days to go to urgent care.
On Sunday afternoon, I thought I was winning. While I couldn’t look at anything for very long without it starting to wobble, and I couldn’t feel my arms, the pain was only moderate. I decided I was well enough to go to a celebratory lunch my supervisor was hosting for an old graduate student. Everyone cheerfully asked me about my research. I painfully stumbled through poor explanations, evasive answers. How could I tell these people I’ve been too sick to work for months at a sunny afternoon lunch? People had exciting ideas they wanted me to incorporate into my project. My migraine scrambled brain couldn’t make heads or tails of them. Everything was too loud and too bright and moving too fast. When I spoke, I could tell something was wrong with my affect – the timing was wrong or the volume. I left as soon as I could. That night, things got bad again and the next afternoon I went to urgent care.
When the nurse inserted the iv, my vein spurted blood. I didn’t know until I got home and found my hospital wristband soaked red. Perhaps that explains why I had such a strong reaction immediately after they inserted the needle. I thought I would faint, then vomit, then I was hot and cold, then I shook, violently, for 10 or 15 or a thousand minutes. I remember my boyfriend’s hand, strong and comforting on my back as I hunched over a cardboard tray and twisted with nausea. I also remember his worried eyes as I was wracked with tremors that only exacerbated the pain.
Being healthier doesn’t just make my life better. My illness is difficult for my caretakers and others who love me. It’s massively inconvenient for my coworkers. My illness can destroy relationships or change them into relationships I don’t like – where I’m buried under my illness and the relationship revolves around caretaking. The longer I’m ill, the more isolated I become and the more difficult things become for individual caretakers. Just three months ago, I would have been able to call any of three people to accompany me to urgent care. But two of those people have since moved away, and I’ve been too ill to develop new, strong relationships. I had just one person I was comfortable calling on Monday.
After a few hours of iv drugs and fluids, the pain wasn’t as bad. They sent me home with instructions to sleep it off and come back the next day if it got bad again. I woke up the next day in pain, but not that bad. So I muddled on.
I haven’t gotten that sick again, but I haven’t felt very well at all. My day-to-day pain level is higher than it was before I dosed down. But my mind is clearer. If I work in short increments and nap or meditate often, I think I can actually be somewhat productive.
I feel frightened and disappointed by the results of my experiment with topamax so far. The higher pain levels and migraine symptoms don’t leave me much energy for living. I haven’t run once since I dosed down and social engagements take more energy. Will my migraines be too bad at a low dose of topamax? Will I have to sacrifice more of my social life or hobbies to do my PhD? But there are reasons not to despair. It is nice to know so definitively that so much of the brain fog was caused by topamax. Perhaps the terrible migraine was a fluke: the bad migraine came at the end of my menstrual cycle and while I was suffering a great deal of dental pain, which are both big triggers.
On October 1st, I’m going to talk to my GP about all of this and make a decision about topamax with a month’s worth of data in hand. Wish me luck.