Epilepsy-Describing & Coping with Your Seizure Experience
Seizures and auras are vague, difficult things to describe to a doctor, which is why many are misdiagnosed. It took me nearly thirty years to describe my particular hell that I illustrate below. I urge all who read this, whether you have epilepsy or if you have seizures as an implication of another disorder, to describe your seizures in technicolor detail. You must first figure out what you are feeling, which can be a task in itself. Then you can document your experience, and with practice the details will become more refined.
I took a whopping concoction of anticonvulsants equaling 3600 mg. per day, but I still had up to three hours of nonstop simple partial seizures a day. My current daily dose of 2702 mg. still averages me about forty complex partials yearly! Our pills offer no guarantees, only hopeful assumptions and healthy compromises.
Note: As unpleasant as this task is, describe your seizure in the most picturesque way possible. Give your seizure description to your doctor as a gift to help you. Writing this down will also save you from having to reiterate it countless times. If your seizure changes, make sure and document your current experience. For example, my seizures have varied in how they manifest themselves many times, and I adapt accordingly. The degree of "seizure-freedom" you achieve is directly related to the quality of information your specialist has to work with.
Paulette's Seizure
My seizure has always been predictable throughout my life. There is no pain but rather I experience a peculiar, terrifying sensation that has a mind of its own. Doing something enjoyable is no safeguard from an unwarranted attack; no matter what, "it" can find me. I believe describing anyone's seizure requires utilizing words beyond our standard dictionary. Imagine taking "fear", magnifying it a thousandfold, and adding uncontrollable anxiety. Now throw in some impending doom for good measure, then pretend you can't escape it nor fool it. Fear is the foundation my seizure sits on. "It" (the seizure) knows where I am at all times and can hunt me down. This mysterious predator has the capabilities to take me to a horrible place, stealing my senses, blinding me, and bestowing temporary amnesia as though my memory was a slate wiped clean. I LITERALLY FIGHT TO STAY IN THIS WORLD AND REMAIN CONSCIOUS! That "grim reaper" has stolen away my memory and my very existence countless times. If my aura cannot be aborted utilizing relaxation techniques, a complex partial seizure will result, intensifying my anxiety. The onset of my aura forces me to sit if I'm standing, stopping whatever I'm doing, which isn't always easy. If music is playing, the volume must be turned down. If a conversation is in progress, I must ask that there be silence. Silence is mandatory to deeply concentrate to remain conscious. If you have warnings before your seizures, try to make them work to your favor. Learn about biofeedback and relaxation techniques to help yourself.
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