I tried to be in denial about this epilepsy thing SO HARD but nope, it’s time to embrace the magic and make it work for me. And embrace the danger. Danger’s my middle name!
Each day for the past four days, I’ve had seizures. Not the full-blown, as-seen-on-TV total body jerking and contraction thing that we think of as seizures. Those are called tonic-clonic seizures and I’ve had two of those while in the hospital. I don’t remember a thing about them, but you can bet that my beloved was holding my hand the whole time.
What I have and what’s been happening the past four days are partial focal seizures in the temporal lobe. Also called TLE, which I suppose stands for temporal lobe epilepsy. Fine. The temporal lobe is where all the mystical stuff lives.
It’s all fun and games for me but there’s a real and actual and probable threat of death. People die having seizures. If not nipped in the bud quickly, and if my seizure escalates, I could fucking die. Just like that. I’m all in la la la magic isn’t this fun land while my beloved knows there’s a really good chance his soulmate could die.
People with epilepsy quickly learn their “tells”, little signs that they are starting to have a seizure. Mine are fun!
- Déjà vu
- Rubbing my fingers together or along a texture like the seam of my pants
- Obsessing on something (one time it was a particular doctor’s name, other times it’s a word or something that attracts my attention outside)
- Euphoria – everything is awesome! I sing and repeat phrases and generally enjoy everything. I feel awesome and powerful and have easy access to other dimensions when I’m in this space
- Quick mood change to sadness/depression
This is the point when we add medications that mitigate the symptoms. I’m taking a judicious low dose cocktail of anti-epilepsy drugs. Every brain is different. Neurologists don’t actually know – nobody knows -so we have to experiment for awhile until we get this nailed down. I’m having an EEG soon that hopefully will shed light on what’s happening in my brain.
When things ramp up and get worse:
- My tongue feels thick and it’s hard to talk
- I talk more slowly
- The left side of my face has less feeling
- Kahuna tells me my face looks different
- Feels like a whole pile of pills are stacked up in my esophagus
- My airway closes up some
- Hard to breathe
- Heart rate goes up, or feels like it
- I don’t answer questions, even though to me I’m still “in there”
At this point things are quite critical and I need immediate medication or I could easily go into a tonic-clonic situation. These are super hard on the body (we think my vertebral fractures happened during this kind of seizure) and there’s a significant risk of death. So obviously we want to avoid that! That’s why we are so concerned with managing these little seizures, so they don’t escalate.