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My last anti-epilepsy drug, Keppra, finally went bad on me. For nine months, I struggled with the side effects of rage and the depression. I started to feel suicidal and desperate toward the end. I fluctuated between unbelievably difficult rage and thoughts of death. I finally had enough of this horrible emotional and physical rollercoaster ride.
I had been keeping a chart of my seizure activity, which showed the day of the month and the severity of each seizure. I took this chart to my neurologist, along with my concerns about my deteriorating health and quality of life. She agreed something was wrong and reduced my dosage. But even that made me skeptical of my treatment regimen, because in Epilepsy: a Comprehensive Textbook, Volume 1, the authors say that the dosage is not necessarily a safety net.
The pharmacy mixed up my new Keppra prescription, so I couldn’t get the lower dose for three days, which meant I had to go without it until then. This was probably a good thing, because during that time I decided to stop taking it, even though I filled the script. And guess what? I felt considerably better. I was still concerned about the seizures, so I mapped them as usual. I saw a decrease in both nerve pain and partial seizures. Some types of simple seizures returned to some extent, but these seizures did not cause pain or require several days to recover. Examples of these seizures included hearing voices at times, having more problems with stiffening due to fluorescent lights and seeing a few more hallucinations, sparkles and color blotches. And my migraines increased slightly.
I reasoned that if I knew what was happening, something I did not know when I was diagnosed six years ago, and if I worked to manage my condition by avoiding the main triggers, I might be able to muddle through.
There is a problem in doing this, though. Managing the triggers means limiting my interactions with people and restricting where I go when I leave the house. Lights, crowds, noise, computers and so forth are all factors that play a part in causing my seizures. I have had to give up my career, my social life, going to church (because of being in a confined environment surrounded by people and the smell of incense) and just about everything I liked such as going to movies and museums, attending concerts, shopping at the mall, and engaging in all forms of strenuous activity. Giving up this much puts a hardship on my family, particularly my husband. But the benefits have been a considerably lower seizure rate, faster recover time, and a return to a healthy body.