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I now know why the psychiatrist who diagnosed me in 2005 said I was the clearest case of temporal lobe epilepsy he had ever seen. On any given day throughout my life, I may have experienced one or several symptoms, such as auras, voices, sounds, panic attacks, racing heart beats, and irritable bowel syndrome. And these symptoms started hitting me with great force a couple of years before my diagnosis. Is it any wonder that my life, my marriage, and my career were crumbling?
Back in the late 1980s, when we lived in north Louisiana, I saw a Shreveport neurologist about my nearly debilitating migraines. She never mentioned TLE as a possibility, probably because the International League Against Epilepsy only defined it a few years earlier. She prescribed medication that set off massive seizures and created thoughts of suicide.
I remember having one of those seizures in a college class.
My husband and I moved with our only daughter at the time to Ruston, Louisiana, to complete our college degrees we set aside a dozen years earlier. I chose to get my degree in medical record administration, and Louisiana Tech University had one of the top programs in the South.
Now, when I say I remember having a seizure in class, what I really mean is that I remember looking around and seeing my classmates and the instructor staring at me. I have no idea of what happened. One moment I was there, and the next moment I became aware that something had happened, because everyone was staring at me. I thought my blood pressure dropped and that I was momentarily incoherent. For all I know, I had a more aggressive seizure, like a gran mal. Whatever happened was so severe and so frightening that my instructor and classmates never spoke of it then or at any time later. They seemed frightened and embarrassed. Some classmates never looked at me the same way again.
When I confronted the neurologist about it, she said I was lying and told me to be a good girl and take the medication. At which point, I told her what she could do with the medication and never saw her again. I was so ignorant of my condition that I didn’t understand I had a seizure until years later when I was diagnosed. Then, it was like, “Oh, yeah. That’s what that was.”
You need someone who knows how to treat TLE, because you can’t mess around with seizures. They can progress from complex partial to gran mal and possibly to sudden death.
Psychiatrists may get caught up in the psychological symptoms and forget seizures are dangerous, even life-threatening, episodes that need to be controlled. The psychiatrist who diagnosed me, wanted to put me on Lithium to stop my hallucinations. That was just too scary to me, because Lithium is a really strong anti-psychotic drug, and I was not convinced I needed it. I knew it would make me sicker than a dog, cause me to drool and walk into walls, and appear like I was stupid. I guess you could call it a pharmaceutical lobotomy.
He also was the one who put me on the pain killers and sleeping pills that only added to my problems in the years to come. He changed my PRN prescription of Darvocet to 4X daily. He also put me on Xanax for sleep, and Neurontin and Clomazopan to control the seizures.
He wasn’t comfortable with the voices and hallucinations and how I interacted with them. So, he decided to eradicate them. I was on some pretty heavy drugs at that time, and the addition of Lithium would mean I would spend my days drooling in the corner. And, this was from a person who said I had the clearest form of TLE he had ever seen.
Kim, my clinical social worker, was more successful, because she didn’t prescribe medication. She specialized in mental illness requiring special knowledge and treatment, such as schizophrenia, Asperger’s, and conditions where people are a little bit different. This gave her insights into some of my issues, because TLE is a brain thing with a psychiatric component. I don’t know how similar it is to the other conditions she specializes in, but she seemed to understand mine and how to deal with it without drugs.
I added her to my team of medical specialists to help me learn how to live with my condition, how to function with a handicap or disability. We got along really well.