I'm an adopted twin and my sister and I were adopted really at childbirth and so
why was it the day that my mom tripped over the Terrier Schottsy
when I was three months old it was me and not my sister but threw me
across the kitchen floor and I hit the refrigerator and so things went wrong
immediately and I was immediately taken to the emergency room and last rites
were performed but it wasn't my time it wasn't where I was called to be and so
surgery was performed and I have the scars on either side of the my head
still today so you'll always see me with long hair and basically to relieve the
pressure at that point in time I finally got sent home with a neurologist that my
mom connected with and I was given the life on phenobarbital that's what was
prescribed but evidently I was impacted by that medication over time and so
a decision was made between my mom and the neurologist my parents to actually pull me
off that medication so that was the start of my journey
however something happened about 14 maybe 15 years ago
I started having dream sequences where I
would focus on some thoughts some dream that I would recognize but I couldn't
ever say I couldn't never come back and tell you what that dream was
what was that aura what was it I was so frustrated what is was it my latest
creative way of handling stress as the type A guy that I am what was I
thinking was it my id taking charge I couldn't ever release it and I was so frustrated with it
after months of talking about it I was finally advised to visit a
neurologist who immediately wanted to put me on medication this was July of 2007
the EEG of course came out clean and what did he want me to do
wanted to put me on depakote well I said let me look that up
migraines no epilepsy oh no bipolar well possibly but prove it
you know let's prove it and so I agreed to be placed in the hospital overnight
where they wired me up and I looked like the mummy and I was scared to death
but I actually had two seizures that night and I can remember being on the
video and waking up having a seizure and smile and waving it's like it's here
it's here what is it and I got sent home the next morning with a piece of paper
that said go take phenobarbital by a doctor that I never met and so I said
well that's not working so I quickly learned that I was struggling with both
focal seizures simple partial seizures as well as focal impaired seizures
complex partial seizures before medication and this really started my
own refractory epilepsy journey and I'm one of the thirty percent of us that
fought that continue to have fought that good fight
during this process I was counting seizures daily and having between 25 to 80 a month on medications
it was I would stop counting at ten and I kept a little notepad next to the bed
at night who said here it was zero or maybe it was ten because it was a bad day
so at that time my wife and I really began looking for the right doctor right
medication and possibility of surgery and if so what type
it took time to find the right doctor
when I wanted to change medications because depakote was just torture for me
I have a good friend that I worked with the depakote has worked great
for me I just hated how I felt I was just a zombie on depakote
and I was trying to help run a national big four accounting firm practice
national advisory service and it just wasn't working
so I got referred to an epilepsy center
and that doctor would have me point my nose and walk a straight line
and I would said well wait a minute here's my notepad I'm want to
talk about these issues it's critical to me let me have some control of the agenda
wouldn't happen medication got changed but I was still suffering from refractory seizures
so it took time to find the right doctor and I happened to
found Dr. Heck who's going to be teaching speaking next even though we
were connected before would be great to get you'll get to hear from her
so next we fought the good fight on medications at one point I was taking four
and you know the percentage of people that get control of epilepsy or control of
seizures when they're on four different medications is really small
it didn't work for me
so my baseline was finally oxcarbazepine and vimpat
lorazepam if I was having a chain of auras under the tongue
that was such a great relief to me to be given that possibility
I spent a long time looking at the possibility of surgery
particularly to see if I could be an early adopter of laser surgery
and at that time it was pretty rare because it was laser surgery was
really being directed at kids more than adults but I attended national meetings
trying to see if I could find that as a direction
one of the things I was told by the way
the initial Epilepsy Center is I was too old for surgery
and fortunately I learned that I was not so working with the doctors proceeded
through the process of multiple MRIs a PET scan and the infamous WADA
got a WADA question I'd be happy to answer it later in the day
so it was a huge decision to trust the doctor as I was the income provider for
my household and I'm still amazed by the support I received from my wife and my
family so I entered for surgery the hospital May 14th 2013 five years ago
thirty electrodes were placed in my left hemisphere that day I sat in the
hospital being monitored for a full week you hear a lot of stories where
people don't have seizures when they're in the hospital
not me I'm pretty good at it I had 33 that week
including 20 on May 19th 2013 a day I won't ever forget
two days later a left temporal lobectomy and hippocampectomy
and the hippocampus is still in storage at USC the evidence is
still there I understand I can go see it
so I'm here today because it was a life-changing event
I've had zero seizures the last four and a half years
thank you after a year I came off of vimpat my oxcarbazepine has been reduced
from 600 milligrams twice a day to 150 twice a day
I provide that to you because I no longer require eight and a half hours of sleep each night
a couple of nights ago I stayed up till 11:00 because I was watching the Olympics
I no longer feel groggy trying to help run a national consulting practice
most importantly I no longer feel branded by epilepsy I no longer see it labeled
across my forehead and running my identity