Back in the saddle, with epilepsy

Before jumping into writing a new post, let me apologize for the dry period. We had a family emergency a few weeks back, and just when I was getting back on my feet from that, I had a personal scare. Both stories have happy endings, but I’m only now getting back into the swing of things. Onward, ho!

One of the things that brought me back into the cancer world, at first with great resistance, was the onset of mystifying cerebral episodes shortly after beginning grad school in 1999. From the start of my human rights studies, I was inundated with things to read. One morning, thirty pages into a tome on international human rights law, I had one of these episodes. For a moment, I couldn’t understand a word in a sentence I was reading. I could see the letters that formed it—my vision was unaffected—but I couldn’t make out which ones they were. For ten or fifteen seconds, the “e” in international could have been a “q” for all I knew, the “l” a “g”, and so on. And then it was over. I could read once again, but I was shaking. Maybe, after 13 years of being cancer free, my brain tumor had returned.

Interspersed with my coursework at Columbia were visits to doctors throughout the city—primary care physicians, a gastroenterologist (I sometimes had stomach problems prior to the episodes), and a neurologist. The visits did not begin immediately. Afraid of bad news, I hesitated to seek medical help, and I didn’t tell my friends. When the episodes became more frequent and started to disrupt my studies, I mentioned them to a campus doctor, who urged me to see a friend of his, a neurologist at a nearby university.

“Epilepsy”, he said. “These interruptions you’re having are probably small seizures.” I was resistant. I asked if he was certain about his diagnosis. Could it be something else? “It could be,” he said, with a touch of sarcasm. “But it’s not. You should begin anti-epileptic medication and have an MRI to rule out a return of your brain tumor.” I wanted to smack him. Was he calling me an epileptic? I didn’t like the sound of it, and I didn’t want the drugs. I was allergic to the first one I was put on in 1986, a huge, pimple-like rash breaking out symmetrically on my face, and the second caused so much fatigue that I found it impossible to do my high school homework. And here I was back in school again, being told I needed to go on meds. The news was disheartening, in addition to the way it was delivered. I grudgingly went on antiepileptic drug number three and had a severe reaction to it—hyponaitremia, for you medically astute readers—which I reported to my doctor. He was clearly bothered by my call, despite my primary care physician telling me that my symptoms were serious. “Look, if you’re having a problem, we can put you on something else,” he snapped. I told him that I would prescribe myself a new neurologist.

His replacement was the head of the epilepsy program at a major university, a confident, sharp-witted woman with interpersonal skills that put her predecessor—the one on my list—to shame. We started with a comprehensive neurological assessment and a new antiepileptic drug that my body tolerated well. The episodes diminished in number and intensity, though not completely on either account, and only for a few months. We later did a video EEG. I was confined to a hospital room for three days with dozens of sensors attached to my head and a video camera monitoring my every move. I went off the antiepileptic medication, and shortly thereafter had an episode, a simple partial seizure, which was caught on tape. Clear evidence, it turned out, that I had epilepsy.

A second type of seizure was starting to emerge, one in which I would process noise as if it was language, when my neurologist told me she was leaving to begin work with a private company. She referred me to neurologist number three, a colleague in her program and a antiepileptic drug specialist. I stayed with him for several years until my insurance changed and I was no longer covered. Neurologist number three, his replacement, was a carpetbagger in the financial sense. My first and only appointment with her, which lasted for no more than 30 minutes, was billed to my insurance company for $1100; $500 for her services and $600 for a neurological assessment. She performed this assessment herself, which consisted of checking my reflexes, tracking my eyes, and having me walk up and down the hallway.

I’m off to a mostly promising start with neurologist number four. He’s full of energy, results-oriented, and a good listener. He was clearly stunned by neurologist number two’s failure to explore other courses of treatment, given that my seizures continued unabated throughout the period I was seeing him. He wants to do a new video EEG and another comprehensive neurological assessment, which he will then compare to the first of each. He also immediately prescribed a follow-up MRI, as I reported new symptoms to him, and called me with the results last week. I give him very low points on delivery—we had a discussion about this afterward which I’ll talk about here this week—but the good news is that my brain, as far as tumors go, is A-OK.

There’s much to tell you about epilepsy, but I won’t do it right now. It is by far the largest challenge I’ve had to contend with since my bout with brain cancer. It puts you into a hole that can be very hard to climb out of. But I have to say, I’m hopeful. My slightly goofy new neurologist has got me excited, and I feel like we’re going to fight this battle together. As I said earlier, “Onward, ho!”

enjoyed this post? share with others:



  1. October 5th, 2010 | kriste says:

    glad you’re back posting.

  2. October 5th, 2010 | Duper says:

    Thanks, Kriste!

  3. October 5th, 2010 | Maeva says:

    Hi Duper,this is really good news !
    “Onward, ho!” 🙂

  4. October 5th, 2010 | Lenore says:

    I was worried when you mentioned you were having new episodes. But I am glad you are hopeful!

leave a comment