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anticonvulsants, antiepilepsy drugs, charting seizures, complex partial seizures, depression, drugs, epilepsy symptoms, Epilepsy: a Comprehensive Textbook, fluorescent lights, hallucinations, hearing voices, keppra, living with temporal lobe epilepsy, living with TLE, migraines, narcotics, nerve pain, pain killers, pills, prescription medication, prescription medicine, rage, seizure triggers, seizures, suicide, temporal lobe, temporal lobe epilepsy, temporal lobe seizures, TLE, topomax, what is temporal lobe epilepsy, what is TLE
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.
Surviving Wonderland: Living with TLE 
Hi Sharon, thanks for sharing. It’s sure not easy living with TLE. Are you seeing a psychologist? After a year of pretty much everything you’ve described, I finally broke down and went to one last week. She seemed very positive about my chances of making progress, especially with anxiety and agoraphobia. I’m skeptical but at this point I’m willing to try anything. I enjoy your posts — thanks for taking the time to write them.
Hey Laureen, thanks for your comments. I did see a therapist. I was actually seeing one when I was diagnosed with TLE. It is because my therapist was so good and observant that I was finally seen by someone who could pull together all of the pieces and give me an accurate picture of what was going on. I can’t stress enough how important it is to have someone help you navigate the rough waters of this condition. In my opinion, TLE spans the gap between physical issues within the brain, and mental issues. I believe it not only governs your physical reactions and experiences, but also shapes your personality. To have someone to talk with and to help you understand how to live with some of the issues is a good thing indeed. You may find that once you become comfortable with the condition, the anxiety will decrease somewhat. Also you might want to play close attention to what you are thinking and what is happening when you start to feel off balance. These may be clues to how you should manage your TLE.