Epilepsy is certainly a disorder of mystery and unpredictability as any epileptic will tell you.
After ten years being grand mal seizure free, just one day after this past Christmas I found myself waking up in an ambulance from a grand mal seizure in route to the hospital where I encountered a second seizure only three hours later. This has been the worst seizure ever and roughest recovery. After coming home from the hospital, I slept for nearly 3 days and remember almost nothing.
Although unknown to me until I was fifty-seven years old, I was born an epileptic and had experienced seizures all my life; in fact my grandfather was an epileptic as was his grandfather and his grandfather before him and who knows how far back.
For those of us older such as me, we grew up in a time when epilepsy had many labels and taboos even linked to mental disorders and demonic possession. As a result, your family or even family doctor might not pursue any detailed medical investigation. In my case, my parents and I were told it was just part of growing up; or so I had always been told. But shortly before my father died, he confided in me that our family doctor had suspected I might have epilepsy but to quote my father, he told “old Doc Holden, there was no way his son was crazy”.
My father also, didn’t understand that what he witnessed so often in his father as what was called “fits” was actually epileptic seizures as well.
Although I don’t blame my parents for my epilepsy, it’s very sad to think what just a little more knowledge and information might have done to help me today.
Since having my first full blown grand mal seizure in 2001, I have made every effort to learn everything I could about epilepsy and how to recognize and avoid the proverbial “seizure triggers” and how to prevent them.
As most epileptics know the two basics to control and prevention are, 1) take all your meds as prescribed and 2) get at least eight hours sleep every night. In most cases, if an epileptic follows this regiment of treatment the chances of having a seizure are greatly reduced.
Unfortunately Epilepsy is a neurological disorder and not a disease resulting in the reality that at present there is no cure. The best that can be done at present is the prescribing of a variety of medication, electronic stimulators and surgery. As such the bad news every epileptic receives once diagnosed is “epilepsy is for life”; so your neurologist will instruct you in how to recognize the possibility or the signs of an upcoming seizure.
Most epileptics are well aware of the most obvious sign of a possible seizure which is the dreaded “aura”. For most of us, we hate the aura worse than the seizure. The seizure strikes and is usually over in just a few minutes but the aura is totally debilitating and can last from a few minutes to several days. Like it or not, the aura is usually a sign of a potential seizure.
The aura is difficult to describe; especially to non-epileptics. 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 the experience of strange sounds and odors.
But the worst aura experience of all for most epileptics is disassociation; the feeling of uncertainty of where you are or what many epileptics describe as the sensation of feeling like you’re in more than one place at a given moment. Some have described it as feeling like you’re here but also somewhere else. Some have likened the experience to a type of “déjàvu”.
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 that although some epileptics never experience an aura, those that do have different aura experiences. One such experience is “mood change”.
Mood change (which is usually a side effect of anti-seizure medication and not epilepsy) itself is often a signal or precursor to a major seizure. Of great importance is the “Unrecognizable Mood Change”. It might be subtle or it might be drastic. It might not be recognizable to the epileptic patient at all but very noticeable to everyone else. The mood change can begin weeks before the seizure.
As a lifelong epileptic and Christian psychologist I was well aware that mood changes could be a part of epilepsy but as a lifelong epileptic I had never seen myself as having mood changes. Recently however, my reaction to what I interpreted as a bad smelling slice of ham was actually seen by family members as both irrational and mean spirited. The bottom line is others saw the mood change but I didn’t. In addition my family informed me that over the past forty years I had many similar experiences.
The bottom line is if you haven’t experienced an epileptic aura, you simply can’t understand but you can try and be observant of the epileptic in your life.
If the epileptic in your life begins demonstrating unusual or a sudden change in behavior, be certain to make them aware of those changes in a very caring and constructive way. You might ask if they have taken all their meds on time or ask how they’re feeling.
If you’re an epileptic, listen to those around you, they might see things happening in you that you don’t see in yourself and if you listen carefully you might prevent a seizure or even save your life.
Let others help you recognize the unrecognizable signals in you.
© 2019 Lee W. Outlaw III, PhD
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