Society has not been kind to epileptics. Society is often a psychotic bully so it’s no surprise.
In earlier times, epileptics were worshipped/feared because people thought the seizures were due to gods speaking through a human and, being human, all a human could do was seize in response. But gods didn’t want to talk to everyone so the people who had seizures were special. 🏆
But other cultures felt the seizures were a sacred curse. The Aztecs even assigned the distribution of epilepsy to a god, Tlazolteotl, who was the deity of vice, purification, steam baths, lust, midwives, filth, and a patroness of adulterers.
And then “modernish times” began and “special” was redefined as “get that person away from my child” and people were erring on the side of epileptics being possessed by demons and evil spirits etc. so we were just thrown into mental institutions for safe-keeping.
“Out of sight, out of mind.” – Enlightened Society
I mean, there is a small voice inside all of us which says, “Oh no oh no, I don’t like that, make that stop make that stop make that stop make that go away” in response to actions/realities which make us uncomfortable.
Most of us don’t really hear that internal voice or we can effectively silence it and behave rationally,
and some of us are featured on the Investigation Discovery Channel.
In any case, epileptics imprisoned in asylums were treated the same as the other people assigned the identity of “evil and insane”. But, mostly, seizures were seen as a sign of a really bad mental illness.
Close. So close. I mean, it’s the right physiological area.
And epileptics and others who couldn’t control themselves were subjected to medical procedures which had apparently been invented by someone’s two-year-old because the brain surgeries were essentially “shove a steel pole in through the eye and then move it around”.
Like the hokey-pokey.
Naturally, this is all quite terrible. By this point in human history, female epileptics had barely graduated to Not Being Seen as a Witch First Thing but many of them were still probably being burned or drowned “just to make sure”.
By the 1960s, Western experts were more likely to treat epilepsy by encouraging both better hygiene and a better diet, because they felt epileptics were dirty slobs. They also recommended epileptics’ participation in psychotherapy, which was new so its potential was greatly overestimated.
Yet, they still stuck with the same old torture techniques such as drowning, starving, electroconvulsive therapy and lobotomies.
In addition, doctors started to utilize drug therapy which was also new but, similarly, very unrefined and sometimes dangerous.
And then they found that drug therapy was incredibly lucrative and, suddenly, the pharmaceutical field exploded!
Anti-convulsant drugs in the 1960s were expensive, just as they are today because Evil, but back then they openly didn’t care/consider about the side effects, some of which were fatal.
I mean, just like today except for how modern pharmaceutical company CEOs are usually better at phrasing/denying wrongdoing publicly except for in more recent times when they’re again more open about really not caring and also money.
But, back in the 1960s, some experts did try to curtail the life-threatening side effects and, essentially, not a whole hell of a lot has changed since that time.
Today ethical neurologists continue to try to find the most appropriate medication(s) with the least amount of side effects for each patient.
Accordingly, in the early 1990s, neurologists primarily treated epilepsy with medication. I’m sure each neurological team had at least someone who still held wildly erroneous beliefs about epilepsy but they were no longer running things.
As such, since this is when I acquired epilepsy, I became a real 1990s test rodent when I was twelve and tried many of the epilepsy medications available at the time… Tegretol, Lamotrigine, Dylantin, Neurontin, Depakote.
However, each of these had insane side effects for me while not preventing the seizures and, consequently, my drama sophomore year was not most people’s high school drama sophomore year.
For example, one morning I took the newest seizure control medicine (Neurontin) and it caused me to start shaking like I was being electrocuted and stuck in conscious mode. All I could do was hold on and stare at my dad as he gripped the phone and, in a high, frustrated/panicked voice, communicated to my neurologist’s office that the medication that was supposed to help me not shake was making me shake all the motherflipping time. I shook for quite a few hours until the medication wore off.
That day I did not go to school.
And the Yahtzee! game of prescribing and processing medication began. I tried all the medications they prescribed but I continued to have tonic-clonic seizures in the early morning.
On what was to be one of these occasions, I woke in the night and shuffled to the kitchen to find something to eat. Yet, my brain couldn’t handle it and it decided to take me down.
“If you don’t know how to cope with a situation, it’s best to react with intense violence.” – My Brain, 1994, and Many People Today
Just before my brain made the decision to seize, I had been standing by the kitchen sink, leaning on the counter so, when I fell to the ground as the seizure took hold, I split my chin open on the sink counter’s edge.
When I woke on the kitchen floor a few minutes later I felt dazed.
I painfully lumbered to my feet, and wandered back to bed, my brain only able to send out the signal “Go to bed bed bed bed bed bed”.
The next morning, I woke again but this time it was because my mom stood, screaming, in my bedroom doorway. That really startled me because I’d never heard my mom scream before.
The reason she was screaming was because I was covered in blood as my chin was now more of a flap than a “chin” because the night before I did not have the presence of mind – literally – to acknowledge this and impede the blood flow after waking from my seizure. So, while I had stumbled back to bed and resumed sleep, the blood freely flowed and, by morning, covered my chest and bed sheets.
However, once my poor, traumatized mom was certain that I had not been brutally murdered in the night, she cleaned me up (at this point we were still concerned about appearances) and my parents took me to the emergency room to get my chin back.
The surgeon winked at me from his close distance and said, “You know, older women are paying a lot of money to get this kind of surgery done.”
I blinked back at him. “Okay.”
For the record, as an older woman, I feel very ambivalent about my chin tuck.
But, even back then, when I was a kid, overwhelmed with this new reality, and mostly occupied by ensuring no one at school knew about any of this, I was grateful for becoming epileptic in the 1990s and not fifty+ years earlier.
Also, as a person who has endured epilepsy for 28 years, I do feel the medications are improving and feel more effective…
once you find them.
It took years (until it was created), but I finally found a seizure-control medication that makes me feel almost as if I don’t have epilepsy.
But then I was recently told it wasn’t working so a neurologist put me on a different medication but…
it was in the same drug family.
So the transition has been smooth.
Hope you find your perfect medication balance that helps you to live a life where you’re not staring into space or on the floor all the time so you can shrug off the label of “epileptic”
and just be you.
4 thoughts on “Yahtzee! Finding Medication That Doesn’t Make It Worse”
Very good and informative read Hilly!!! You’re amazing and so strong!!! I love you!!!
Awwwwwwwwwwww thank you!!! Love you too, Josie!!!!!!!!!🖤💙🥰
What a great first hand description of epilepsy. And the history of the treatment is frightening. Doesn’t seem like your brain has suffered too much damage, you write so well!❤
Haha well thank you, Peggy! I’m so glad you enjoyed the read. And, yeah, being alive in an earlier time… oh hell no. I romanticize the 1920s but… I have no idea why. The hair and music. That’s why. And that’s insane. 😂