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Hi, everyone. I'm a 23-year-old college student living with epilepsy.
My history of seizure activity dates back to 1995, if not earlier. I had a few auras back then - mostly triggered by video games or TV. When my mother (who also has epilepsy) and I spoke with my pediatrician about them, he insisted that they were more likely indicative of migraines and that I should not worry about them.
In June of 1996, I had my first grand mal seizure. I was at a friend's house on a Saturday morning, and we were sitting on her living room couch watching TV. I began feeling "strange," then suddenly nauseous, but before I could get off the couch and run for the bathroom I apparently went into a seizure ... and the next thing I knew I was waking up in the ER, very confused.
I was put on Dilantin after that seizure, and remained seizure-free until October 1998, when I had a complex partial seizure at home. My mother saw me as I was coming out of it, became alarmed, and took me to the hospital.
I had a couple more complex partial seizures over the next year. My doctor was in the process of switching me to Tegretol when (I guess it was just a matter of time...) a major seizure came at a very inopportune time. When at a school dance during my sophomore year of high school, I had a complex partial seizure with secondary generalization. This was triggered by a strobe light, and the school nurse later told me that, from then on, there would be no more strobe lights at their dances.
Fast-forward a couple of years. I was accepted into my first choice college and moved 400 miles away.
I was seizure-free for a few years into college, but in 2004 I began having strange feelings again. Feelings of lightheadedness and double vision. At first I assumed it was the Tegretol (over those years I was at the 800-1000mg range). Gradually I began experiencing auras again, and some simple partial seizures, especially around my periods.
I had a complex partial seizure while taking a summer class last July. It was embarrassing, because when I came out of it my shirt was partially unbuttoned and everyone was staring at me. Only one of my classmates would even talk to me after that episode.
Since the beginning of 2007, even between seizures, I have not felt right. I have considerable anxiety issues related to the epilepsy as well.
Recently, I left my neurologist in search of a better one because he just wasn't listening to me. I would explain my symptoms and everything to him, and he didn't want to change anything about my regimen. If anything, he wanted to increase my Tegretol dosage - he suggested that I take 1600mg daily, but considering the side effects I was feeling at 1000mg (and the fact that I have a small body), I was very skeptical.
My new neurologist is much better, and he actually explains things to me. He says that my symptoms are consistent with temporal lobe epilepsy. He suggested an MRI (since it's been a while) and a week-long or two-week-long video EEG/monitoring session. This will probably happen sometime in May, after I have graduated from college and I can actually set aside two weeks for this.
Sometimes life can really seem overwhelming. I never know when I am about to have a seizure or aura, and it has gotten to the point where I am reluctant to go out in public very much anymore because of the unpredictability.
But in all this, I am very thankful for my boyfriend of more than two years. He has been so caring, understanding and supportive, even though he may not totally understand everything I'm going through.
Anyway, thank you for listening, and for offering a place where I can feel safe discussing this information.
My history of seizure activity dates back to 1995, if not earlier. I had a few auras back then - mostly triggered by video games or TV. When my mother (who also has epilepsy) and I spoke with my pediatrician about them, he insisted that they were more likely indicative of migraines and that I should not worry about them.
In June of 1996, I had my first grand mal seizure. I was at a friend's house on a Saturday morning, and we were sitting on her living room couch watching TV. I began feeling "strange," then suddenly nauseous, but before I could get off the couch and run for the bathroom I apparently went into a seizure ... and the next thing I knew I was waking up in the ER, very confused.
I was put on Dilantin after that seizure, and remained seizure-free until October 1998, when I had a complex partial seizure at home. My mother saw me as I was coming out of it, became alarmed, and took me to the hospital.
I had a couple more complex partial seizures over the next year. My doctor was in the process of switching me to Tegretol when (I guess it was just a matter of time...) a major seizure came at a very inopportune time. When at a school dance during my sophomore year of high school, I had a complex partial seizure with secondary generalization. This was triggered by a strobe light, and the school nurse later told me that, from then on, there would be no more strobe lights at their dances.
Fast-forward a couple of years. I was accepted into my first choice college and moved 400 miles away.
I was seizure-free for a few years into college, but in 2004 I began having strange feelings again. Feelings of lightheadedness and double vision. At first I assumed it was the Tegretol (over those years I was at the 800-1000mg range). Gradually I began experiencing auras again, and some simple partial seizures, especially around my periods.
I had a complex partial seizure while taking a summer class last July. It was embarrassing, because when I came out of it my shirt was partially unbuttoned and everyone was staring at me. Only one of my classmates would even talk to me after that episode.
Since the beginning of 2007, even between seizures, I have not felt right. I have considerable anxiety issues related to the epilepsy as well.
Recently, I left my neurologist in search of a better one because he just wasn't listening to me. I would explain my symptoms and everything to him, and he didn't want to change anything about my regimen. If anything, he wanted to increase my Tegretol dosage - he suggested that I take 1600mg daily, but considering the side effects I was feeling at 1000mg (and the fact that I have a small body), I was very skeptical.
My new neurologist is much better, and he actually explains things to me. He says that my symptoms are consistent with temporal lobe epilepsy. He suggested an MRI (since it's been a while) and a week-long or two-week-long video EEG/monitoring session. This will probably happen sometime in May, after I have graduated from college and I can actually set aside two weeks for this.
Sometimes life can really seem overwhelming. I never know when I am about to have a seizure or aura, and it has gotten to the point where I am reluctant to go out in public very much anymore because of the unpredictability.
But in all this, I am very thankful for my boyfriend of more than two years. He has been so caring, understanding and supportive, even though he may not totally understand everything I'm going through.
Anyway, thank you for listening, and for offering a place where I can feel safe discussing this information.
