It's 5am. Why am I awake?
The seizures I have now are nothing like the seizures of my childhood. I am not sure if those seizures would qualify as "febrile" or just simply the result of heat stroke. I'm curious but not interested enough to do any research into that.
We were staying at my uncle's house one summer. He refused to turn on the air conditioning. He lived in Phoenix. I know that some folks keep the thermostat high to save on cooling bills but setting the dial at 98 C isn't exactly "cooling". The 98+ degree night temperatures in his home began cooking my brain. On my uncle's couch - I began to flop and fizzle like a fish in a cast iron pan. This concerned my mother. Like all good 70s moms she didn't take me to the hospital, instead she raced me home in her Camaro. There was no air conditioning in the Camaro - my mom kept the windows rolled down, platform heeled sandal pushed into pedal, metallic tube top worn bralessly and Vidal Sassoon hair blowing in the wind. Every 15 minutes or so mom would throw ice water on my twitching body.
I lived. There's really nothing more to that story.
The seizures I have now are nothing like the seizures of my late teens and early 20s. Those were from bacterial meningitis - bacterial meningitis is the good shit - the kind that kills a lot of people. The seizures I had afterwards are the type of seizures that most layman refer to as Grand mal.
I had a grand mal seizure in a huge record store once. People really freaked out and it was just like on TV where everyone stupidly crowds around you and screams for an ambulance. Nobody called an ambulance.
I lived. There is really nothing more to that story.
Why are the seizures that I have now so different? What's the pathology? Where did they start? How?
I don't have a definitive answer. I'm not an Epileptologist, hell, I'm hardly a scientist. What I am though is a documenter. I have documented my seizures over time.
Seizures I loosely documented: I was having absence seizures for years - maybe two or three times a year. They were a constant source of sprained ankles, busted ribs, bruises. For fucking real I was falling down the stairs at random times, running into a lamp post on the street, falling off of the city bus while carrying groceries. I got really good at keeping wrist and ankle braces in my bag - supplies to unzombie myself at any moment. RICE: rest, ice, compression, elevation.
My current seizures are not those seizures.
What are they then?
On Monday, April 25th of 2013 I was at home. I had an absence seizure. I checked out for a minute. When the world came back into focus I was on the floor of my bedroom. My last memory was of walking down the hallway. I noted this in my Google calendar.
sidenote: The weird thing about absence seizures are that they give me a noticeable tremor in my hands - that tremor lasts for days. I normally have very steady hands so the tremor fucks with me on a psychological level. I have not had an absence seizure since I began taking Keppra but then again I only have 1 or 2 absence seizures a year typically.
A few weeks later I was on vacation - hiking canyons in Mormon god country. These seizures were different. Although I did have an absence seizure on March 11th (noted in Google Calendar as "Fall") something different was going on. The new seizures had precursor symptoms that became "typical" - these are known as pre-ictal or prodome symptoms or sometimes they qualify as an "aura" or sometimes as a simple complex seizure. Seizure terminology is confusing and inconsistent - at any rate weird shit would happen, the same weird shit over and over again. At first I would feel as though my stomach were dropping - a feeling similar to when you ride on a roller coaster and go down a steep slope at high speed - it's the weeeeeee part of the ride, I would also feel headache - very specific headache in the right temporal lobe, I would feel cold, I would feel nauseous.
During seizures observers say that I would stare off into space and become unresponsive. I find that terribly creepy. Pod people creepy.
Post-ictally.. do you mind if I say post-ictally, we're all friends here, right? Post-ictally I would be EXHAUSTED, post-marathon level exhausted - not that I've ever ran a marathon - I've given birth though - so what I am saying is THAT level of exhaustion - like a baby had just escaped my body and now I want a Gatorade and sleep.
What started these new type of seizures?
I was thinking about this when I woke up this morning. I have a zit on my upper lip. Shit, I hope it's a zit. I say that because last December my boyfriend had a cold sore on his lip when he woke up one morning. I didn't kiss him for the rest of the weekend. It was too late though and somehow, some way, despite the fact that 90% of the population ends up infected with Herpes Simplex (cold sores) by early childhood - I got my first infection with the virus last year.
The infection sucked. Big time suckage. I was sick for over a week - in bed levels of sick. I had to take antiviral medication and I looked like Joseph Merrick. I stayed in my bedroom with a burlap sack over my head.
I found Merrick, as I have said, remarkably intelligent. He had learnt to read and had become a most voracious reader. I think he had been taught when he was in hospital with his diseased hip. His range of books was limited. The Bible and Prayer Book he knew intimately, but he had subsisted for the most part upon newspapers, or rather upon such fragments of old journals as he had chanced to pick up. He had read a few stories and some elementary lesson books, but the delight of his life was a romance, especially a love romance. These tales were very real to him, as real as any narrative in the Bible, so that he would tell them to me as incidents in the lives of people who had lived. In his outlook upon the world he was a child, yet a child with some of the tempestuous feelings of a man. He was an elemental being, so primitive that he might have spent the twenty-three years of his life immured in a cave. -The Elephant Man and Other Reminiscences
I haven't had another visible cold sore since. WTF? Is the virus hiding in my brain? Is it causing seizures? Science says that it is a possibility:
"...investigators at the NINDS who reported finding HHV-6B replication in the hippocampal astrocytes in two thirds of 24 patients with mesial temporal sclerosis, but not in patients with other causes of epilepsy. They speculated that HHV-6B might cause seizures by interfering with the astrocytes’ ability to transport glutamate (Fotheringham 2007). "
There are other possibilities though...
Read more from me: http://www.seizethediary.com
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