My Adventures in Neuroscience (Or: Being an Epileptic Guinea Pig)
This should really be posted in "funny" as I have a habit of turning all of my medical misadventures into some kind of improv comedy routine, but I felt the people in the "funny" group might feel as if they were terribly misled. So, in "life" it goes.
A bit of backstory:
I've had temporal lobe epilepsy since I was about 12 years old. Now, before you imagine me flopping on the floor and biting off my tongue - those aren't the kind of seizures I have. (Though my poor brother does have grand mals and they do indeed suck.) Mine are more the absence variety, where I go mentally AWOL for several minutes then develop a sort of short-term amnesia until I'm able to sleep it off and my brain can do a hard reboot. It fortunately doesn't keep me from holding a steady job, though I have had to make certain allowances, such as recording meetings and such, but it does keep me from being able to drive per state requirements as my seizures are what's known as "intractible". Intractibe is just medical jargon for "doctors haven't thrown a drug at me that works yet". And they've thrown pretty much all of them at me. About fourteen, to be exact. Most of them with none too pleasant side effects. One left me unable to speak for two days, another left me with the inability to remember words like "artichoke".
If anything has taught me that medical science has a long way to go in the area of neuroscience, it's been dealing with neurologists for over two decades.
In an attempt to pinpoint the exact location of my seizures, my neurologist decided it would be a good idea for me to undergo a VEEG (Video Electroencephalogram) study. This involves removing me from all of my anti-seizure medications, admitting me to the hospital for no less than five days, hooking my brain up to a computer, and then wait for me to seize so they can immediately take a high-contrast MRI of my brain. So, that's what we did. I wasn't too excited about this enterprise, but I was determined to make the best of it.
First, I got me some awesome hospital booties:
and some kick-ass pajamas which sadly I don't have a proper photo of.
My awesome friends drove me to the hospital in my my new seizure booties and pajamas. I was OWNING IT.
They checked me in, took me to my room which had an awesome sign I stole when I left:
and even had a pretty sweet view (which I'm sure my insurance paid handsomely for.)
I was put on a severe sleep schedule:
Asleep at: 2:00 am
Awake at: 6:00 am
(Sleep deprivation is a seizure trigger as well as a Niff rage trigger - I don't think they realized this at the outset.)
I was then prepared for the electrodes - this involved copious amounts of alcohol applied to my scalp. The red cross on my forehead is a marker for an electrode, just in case you thought I was being exorcised.
Once they were done completely dehydrating my scalp, they used the equivalent of airplane glue to attach the electrodes with mesh so they would remain intact for the duration of my stay.
(A friend of mine was kind enough to turn me into a meme, which I love her for):
My head was then wrapped in gauze, over which I applied a snazzy headband because I was unwilling to look as if I'd had part of my skull removed for an entire week in case I had any cute orderlies:
My brain was now live, with a video camera on me 24/7. That's me in the lower right:
They finally let me go to sleep at 2am, after giving me an injection of heparin (an anti-clotting agent, as I was forbidden from leaving my bed except to use the restroom) in my stomach (holy shit OUCH!), only to wake me an hour later to relocate my IV line. This ritual would continue for the next five days. I felt like a pincushion.
Day one: I quickly learned that there was an alarm that shrieks "Mary Had a Little Lamb" at full volume in shrill midi-fashion whenever my fellow neuro ward neighbor got out of his bed. Judging from the frequency with this this occurred, dude did NOT wanna be there.
I, on the other hand, was ready to tie him to his bed. And not in that fun way, either.
This study happened to take place during the 2012 presidential election. Unfortunately, the only option I had with channels on the TV in my room was news coverage. The EEG tech took pity on me and would pretty much bring me bacon whenever I wanted, which I felt was a well-deserved consolation prize. Out of sheer boredom I began conducting science experiments. I soon learned my brain reacted more positively to bacon than to election coverage:
Day two: still no seizures, though I had a few auras. An aura is like a "mini seizure", similar to the feeling you have when you think you're going to sneeze but never have the satisfaction of a full-blown sneeze. Yeah. Kinda like that. It was around this time I came up with the The Physician Proximity Principle:
The appearance of an anomaly is inversely Proportional to the Proximity of the Physician.
Day three: It is at this point I begin subjecting my EEG tech babysitter to Eddie Izzard.
As punishment for the Eddie Izzard (though they claim it's due to my increased aura activity) they hook me up with radioactive isotopes in a syringe. The goal here is so when I finally do have a seizure, they depress the plunger, the isotopes go zooming into my temporal lobe and they can shove me into the MRI. That's the goal, anyway. I looked like a cyborg:
Lunchtime:
Me: pick pick pick
Nurse: "Want me to bring some glue remover so we can get that stuff off of your forehead?"
Me: pick pick "Nah, it's giving me something to do. pick pick...
Day four: friends visit. Karla brings her hedgehog, Durian, at my request.
EEG tech: "Did the nurse say you could do that?"
Me: "I didn't ask."
EEG tech: "Can I hold him??"
Day four and a half: If one more person asks me, "Will __________ make you seize?" I'm gonna go all Code Gray on them. O_o
(Code Gray: (1) A combative person with no obvious weapon. (2) Real or perceived act of terrorism from conventional, nuclear, biological or chemical agents, or other security emergency.)
Day Five: I FINALLY FUCKING SEIZED. I've never been so happy to have a seizure in my life. Isotopes in, off to the MRI. Don't remember much after that.
Day six:
The recurring phrase coming from down the hall:
"No, sir, you have to keep your pants on..."
Fortunately my departure is imminent. I don't know if I can stay in a place with such strict regulations.
Mercifully, they had the courtesy of removing the electrodes for me. (I assure you, that is glue, not dandruff...)
Here's what my brain looks like, in case you were curious:
What did we learn?
Inconclusive.
Yep, that's right folks. After six days, only 24 hours of sleep total, 30 needle pokes, nonstop election coverage, and crazy ward patients with no pants, we learned nothing.
A couple of months later, my neurologist suggested I come in for an intracranial EEG. This involves the same process as above, only they saw a window out of my skull and place the electrodes directly onto my brain.
I declined.
Thanks for letting me share my adventures...happy to answer any questions if you have them =)