Tamura N. My epilepsy story: What is it like to be absent?-A message from an
"ex"-patient. Epilepsia. 2015 Nov;56(11):1707-9.
With the absence of objective evidence, my epilepsy was (and still remains) like a “phantom,” whose existence has been totally insubstantial but once existed somewhere in my brain and controlled my consciousness. I am about to turn 30, without seizures, being off antiepileptic medication over the past 12 years. Now, I do not recall the memory of my seizure events, per se. At least, I did not consciously experience the moment when millions of neurons were “burst-firing” in my little brain. What I can recall is a number of bitter episodes, mostly associated with my attention deficit under treatment with valproic acid (VPA). Here, I am not writing this story to deny the given diagnosis of childhood absence epilepsy or to blame the adverse effects of the medication. In fact, I simply wonder: “What really happened to me during the exact moments of having absence seizures?” The medical history, which is primarily based on my mother's memory, does not clarify the existence of this phantom. I wished I could see my absence seizures captured by a video camera or visualize the bursts of electrographic discharges standing out on electroencephalography (EEG). These primary sources would have helped me to better understand my childhood absence epilepsy. Unfortunately, however, such materials are not accessible, because they do not exist anymore.
About 24 years ago, on an unknown date, I developed absence seizures. It came from out of nowhere. I was only 5 years old at that time. It was my mother who first witnessed my “blanking out” state at a family dinner table. She noticed several unnatural pauses in her little daughter sitting in front of her while having the conversation. These spells were very brief but came with unusual staring while I was talking or eating meal, according to my mother. A few days after the first witness, my mother discovered, from the reports of caretakers, that these unnatural pauses had been observed frequently at the nursery as well. She became worried and I was puzzled.
While experiencing seizures, I was not consciously aware that the phantom had just taken over my mind. In early days both in and outside of the house, people often asked me “What happened?” or “Are you listening?” I used to think that these were very strange questions as I was right there talking to them. But to them I was completely zoned out from our conversation, or in their expression, my mind was “totally gone to somewhere else.” It seemed that time had stopped completely outside of me and my mind floated somewhere in-between conscious and unconscious states, although my eyes were wide open. Not so long from the aforementioned events, I was diagnosed with childhood absence epilepsy.
Within the same year, treatment with VPA began. Good news was the achievement of good seizure control. Bad news was that I experienced unusual drowsiness and attention deficits. Reportedly, I tended to fall into an extremely deep sleep with occasional nocturnal bed wetting. After the age of 6, when I was enrolled in a local primary school, attention and cognitive deficits became more evident. I was slow, clumsy, and less attentive to the outside. I often lost belongings such as keys, and I forgot to do things that had been asked by people even home works. Without being given frequent cues, I could not locate or identify objects presented within a noticeable distance. Unusual drowsiness persisted and made me asleep in the class rooms...
By the age of 18, VPA was tapered and the long-lasting treatment was finally completed. I noticed the severity of drowsiness was reduced, and I could concentrate on my academic activity, although I experienced episodic deficits of my attention. Luckily, I was relatively successful at the high school and managed to graduate with good grades, with a great amount of assists from high school teachers and friends who had a good understanding of my disease...
My first question is regarding the significance of attention, cognitive, and personality aspects in childhood absence epilepsy. I wonder whether the quality of life of patients would be more severely affected by “failed seizure control” or “side effects of medical treatment.” I also wonder whether attention dysfunction would persist after the completion of medical treatment. Based on my personal story alone, the severity of side effects of VPA outweighed the problem derived from absence seizures per se...
Conversely, attention dysfunction can be attributed to frequent seizure events recorded on EEG prior to treatment. If my previous EEG study were available for review, I could have had a better understanding of my risk of developing attention dysfunction with or without medical treatment. Given that, my question to the epilepsy community regards the feasibility of permanent retention of primary source materials such as digital video or EEG. If such retention is infeasible, it would be a good idea to recommend that the guardians of children with absence epilepsy take and keep the video of seizure events. Their children may want to know what is going on outside of their conscious awareness when they become mature enough to understand and accept their histories.
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