Welcome to my first entry in Epilepsy Sucks. I know, the blog title is a bit crude, maybe even uncivilized, but that’s the way I feel about the condition I’ve had for the last 40 plus years. If I were to dance around my feelings on the subject here in my very first entry, I wouldn’t feel like I was being honest with you, or with myself.
This first entry will be mostly about my history, starting with encephalitis at 3 years old which left me with lesions in my right temporal lobe, and the first seizures I had at 12-15 years old, straight through today. It’s not really all that spectacular, so it won’t be long.
My epilepsy was highly episodic for most of my life. I’ve been on uninterrupted AED’s (anti epilepsy drugs) for 40 years, and have enjoyed a few long seizure free periods of a year or two each. One seizure free period lasted just over six years. But then my physical condition changed, and I came to with a badly chewed tongue and a fuzzy view of the ceiling in front of me. When that happens after any long period without seizing the feelings of defeat, and hopelessness are crushing.
About ten years ago I was doing some contract work in a potato warehouse. This was near the end of that six year seizure free period, and I was working on ladders near the ceiling, disturbing dust that had settled from the potatoes that were being brought in from storage. The dust had various chemicals in it, chemicals to kill bugs and fungus that might ruin the spuds while they were in storage. Well, it seems that the chemicals I was inhaling awakened a sleeping monster, because I began having Complex Partial Seizures a number of times every day, and my old enemy, the Grand Mal, came back with a vengeance. This period of seizure activity continued long enough to take our business and put me on disability. In fact, it continues yet today.
After trying a number of meds that didn’t lessen my seizures, my neuro settled on the combination of Lamictal and Topamax, which have been working well for me for quite awhile now. I haven’t experienced a Grand Mal in Years, but still have an occasional complex partial, and auras (simple partials) on an almost daily basis. It might seem like I left out about 30 years in there, but to tell the truth, life during that time was pretty normal, it was just interrupted by an occasional seizure. Sometimes more seizures, sometimes less, but for me it was normal.
There’s a lot more to write here.
