Blink of an eye
As I left the neurologist's office, I thought of a dozen ways to write this post. As I stood at the bus stop in the cold, I decided that the best way to say it would be the simplest way:
So, yes. I have epilepsy.
I am an epileptic.
What I really respected about this neurologist was that he took time with me. He went over every instance and episode I could remember. He showed me the results of that MRI in 2002. I never knew that I've had periventricular leukomalacia. This seems to be what has caused both the cerebral palsy and the epilepsy -- or, rather, the epilepsy is caused by scar tissue in the right side of my brain. The scars are interfering with the electrical flow, causing sudden, random jolts and surges and misfires. Like speed bumps. Really no different than the keloids on my ankles that cause inflammation and pain.
So it is real. Yes... it is real. It's real epilepsy. Yes.
He diagnosed me with focal seizures -- partial complex seizures, specifically temporal lobe seizures. Occasional tonic clonic when under extreme stress and lack of sleep.
I kept asking him if he was sure it was truly electrical, really epileptic and not, say, pseudoseizures. I kept trying to form it in my head, to be able to tell myself after the white noise stopped, "Yes, I'm really epileptic."
He was willing to talk with me for two hours, showing me notes and pamphlets about partial seizures for adults, especially women.
Every epileptic is unique, he said. Some may have similar symptoms, many have recurring symptoms that they can use to predict a seizure. Mine seem to be a combination of severe disorientation, strong emotion, extreme spasming and locking of the left arm and leg, and a feeling of heat spreading through my body concentrating at the top of my head; all proceeded by a twitching and tingling at the base of my spine that travels up to the base of my skull.
He gave me a list of medications that would work best with my condition. Two of them were Lamictal and Trileptil. I asked about those two. He explained that Lamictal was the most neutral and well-tolerated by young adults, but Trileptal worked just as well. He asked me, point blank, what I wanted to do. I chose Trileptal. He gave me samples of a very small dose. He warned that I would need to take folic acid with it, and increase the dose of my birth control pills.
So, afterwards, I ran across the hall to my doctor (convenient, huh?) and explained what I needed. I got to see the other woman doctor in the office, with whom I'd talked when I'd had that aura last week. She prescribed me Ortho Novum, a monophasic. Which means that as Trileptal starts to decrease the effectiveness of the estrogen, it won't matter, because the dose is high enough to counter. Basically, I have been taking Ortho TriCyclen for six years, with estrogen at .035. Ortho Novum has estrogen at .50. So it can be decreased safely without me worrying about unexpected spawn.
I'll fill the birth control pills first, then slowly phase the Trileptil in. For the first three weeks, I take one pill at night. After three weeks, I increase it to another pill in the morning. At the end of the sample packs, I go back to check up and see if I want to continue, or try Lamictal. A month after that, I go to my regular doctor for a pap smear and to see how I'm doing on the monophasic contraceptive.
How am I?
I'm okay. I think. The shock is over. I'm almost relieved. Part of me was expecting this, after all.
Now it just has a name.
So, yes. I have epilepsy.
I am an epileptic.
What I really respected about this neurologist was that he took time with me. He went over every instance and episode I could remember. He showed me the results of that MRI in 2002. I never knew that I've had periventricular leukomalacia. This seems to be what has caused both the cerebral palsy and the epilepsy -- or, rather, the epilepsy is caused by scar tissue in the right side of my brain. The scars are interfering with the electrical flow, causing sudden, random jolts and surges and misfires. Like speed bumps. Really no different than the keloids on my ankles that cause inflammation and pain.
So it is real. Yes... it is real. It's real epilepsy. Yes.
He diagnosed me with focal seizures -- partial complex seizures, specifically temporal lobe seizures. Occasional tonic clonic when under extreme stress and lack of sleep.
I kept asking him if he was sure it was truly electrical, really epileptic and not, say, pseudoseizures. I kept trying to form it in my head, to be able to tell myself after the white noise stopped, "Yes, I'm really epileptic."
He was willing to talk with me for two hours, showing me notes and pamphlets about partial seizures for adults, especially women.
Every epileptic is unique, he said. Some may have similar symptoms, many have recurring symptoms that they can use to predict a seizure. Mine seem to be a combination of severe disorientation, strong emotion, extreme spasming and locking of the left arm and leg, and a feeling of heat spreading through my body concentrating at the top of my head; all proceeded by a twitching and tingling at the base of my spine that travels up to the base of my skull.
He gave me a list of medications that would work best with my condition. Two of them were Lamictal and Trileptil. I asked about those two. He explained that Lamictal was the most neutral and well-tolerated by young adults, but Trileptal worked just as well. He asked me, point blank, what I wanted to do. I chose Trileptal. He gave me samples of a very small dose. He warned that I would need to take folic acid with it, and increase the dose of my birth control pills.
So, afterwards, I ran across the hall to my doctor (convenient, huh?) and explained what I needed. I got to see the other woman doctor in the office, with whom I'd talked when I'd had that aura last week. She prescribed me Ortho Novum, a monophasic. Which means that as Trileptal starts to decrease the effectiveness of the estrogen, it won't matter, because the dose is high enough to counter. Basically, I have been taking Ortho TriCyclen for six years, with estrogen at .035. Ortho Novum has estrogen at .50. So it can be decreased safely without me worrying about unexpected spawn.
I'll fill the birth control pills first, then slowly phase the Trileptil in. For the first three weeks, I take one pill at night. After three weeks, I increase it to another pill in the morning. At the end of the sample packs, I go back to check up and see if I want to continue, or try Lamictal. A month after that, I go to my regular doctor for a pap smear and to see how I'm doing on the monophasic contraceptive.
How am I?
I'm okay. I think. The shock is over. I'm almost relieved. Part of me was expecting this, after all.
Now it just has a name.