Having been one all my life, it is sometimes easy to overlook the fact that I am indeed an epileptic.
I am on medication and live a fairly normal life. I do most everything that non-epileptic people do; in fact after eleven years and seven attorneys attempting to get this “Grand General Epileptic” disability, the state and federal governments denied such because they declared that I was a “functional epileptic”.
“Functional epileptic”, is there really such a thing? That’s a topic for another discussion.
None the less, most epileptics will tell you it’s not necessarily the seizure that’s the great concern but everything leading up to and afterwards such as pre and post seizure auras that are truly debilitating and hinder the ability to “be normal”.
For the non-epileptic, it’s important to note that epileptic auras are for most, more dreaded than the seizure itself and like a seizure they can occur unexpectedly at any time with or without medication with no reason as to the cause.
One thing for certain is that there is nothing fun about an aura. They can last from a few minutes to hours or even days. The average aura time for most epileptics I know is about 15 minutes. My average aura last 24 hours but I have experienced a pre-seizure aura which lasted 2 days and a post-seizure aura which lasted almost a week.
Auras are terrible. They can be mild to migraine headaches, the proverbial “seeing stars”, visualizing “saintly” like glows or halos around people, visualization can take on a yellowish hue as well as experiencing strange sounds and odors.
But the worst aura experience of all for most epileptics is dissociation; the feeling of uncertainty of where you are or what many epileptics describe as a sensation of being in multiple places at the same time. Some have suggested it is like you’re here but also somewhere else. The bottom line is if you haven’t experienced it, you simply can’t understand.
The aura often causes an epileptic to lose momentary thought, focus and concentration.
Some research now suggests that due to their debilitating effect on the epileptic, these auras are actually partial seizures. Regardless of what these auras are, they can certainly slow a person down, delay or even force a change or cancellation to plans.
It is important to note here that some epileptics never experience an aura.
In addition to the auras and seizures, there is also the emotional trauma sitting in the epileptics unconscious mind constantly asking the question, “Will I have a seizure today”? And “If I have a seizure today, what kind will it be”?
Those questions usually give rise to more questions which give rise to more questions such as, “Since I feel kind of strange today, should I go out in public and chance having a seizure away from home”? If you drive, “Should I try to drive today and possibly have an accident or even hurt or kill someone”?
“I’m feeling constantly sleepy, do I need sleep or am I trying to pass out and seize” and “if I take a little nap, will I have a sleep or wakeup seizure”? “Should I go to the ER or should I call my neurologist or am I just being silly and paranoid”?
Although life for everyone is filled with uncertainties, for the epileptic these uncertainties become magnified.
For this epileptic, the past month had gone very well; between my medications of Depakote and CBD oil I was stable and feeling great. I had gone to church, out to eat, a birthday party or two and even driving during day light hours. Being an epileptic simply wasn’t on my radar and didn’t seem to matter.
Then suddenly out of nowhere last Saturday, I experienced the worst aura since 2008. My hands and arms shaking, visualization suddenly yellowed, found myself staring for long moments into space, then the dreaded feeling of disassociation; the feeling of being in two separate places at once.
The feeling was horrible and quite frightening. The last time I had an aura that intense was prior to a “Grand Mal” seizure while driving in 2008. There was nobody hurt and no damage except to my van which was totaled. Thank God a police officer witnessed the entire thing and called the paramedics who took me to the ER immediately.
Then this very morning, with plans in process, my day is interrupted by having a moderate morning wakeup seizure with a traumatic follow up post-seizure aura destroying both my plans for the day and possibly my future.
It is totally debilitating, destructive and often humiliating (as it was for me today), this thing we call epilepsy.
But once again, I am an epileptic and as most neurologists tell us, we can have a seizure at any moment of any day; unfortunately for some repeatedly throughout the day.
Cancelled plans and appointments, inability to keep commitments, feelings of inadequacies and indecisiveness, frustration and associated depression; all associated with epilepsy.
Take the meds as prescribed, get eight hours sleep, try and avoid naps and seizure causing meds and still a seizure and/or an aura is possible.
I can never forget I am an epileptic.
© 2017 Lee W. Outlaw III, PhD