I started another website. I felt I wanted to share my
entire story with anyone that was interested...so I've
posted all my journal entries to
http://jinx.umsl.edu/~vally/dan/
My step father Vally kindly provided me space to
share my journey, thoughts and ideas.
So what's bad?
In August and the beginning of September I
had a simple seizure about every 8 days. I had lowered my
Tegretol from 600 to 400 mg/day. I found a threshold. I
was doing okay. Coaching Zachary's soccer team, working,
exercising, living, having seizures. I was stressing out
and so was Abi. She'd often ask me - 'have a seizure
today?'
And, it did not drive me crazy. I had about a 1 minute
warning before each event. Each lasted about 30 sec to 1
minute. Then I was 'ok.' I felt some effects for another
day or so. I'd often reflect on how much time I spent
worrying about 5 minutes out of one month.
Time to see Dr. Moore again. I wanted to show that my
current medicine plan was not working for me, so I graphed
my seizure dates vs the medicine dosages I was taking at the
time of both Lamictol and Tegratol. The graph roughly
showed no improvement and a definite worsening after the
last change.
Dr. Moore had never seen a patient bring a graph of his or
her seizure rate before. We talked about it and he agreed
with us - it was time for a more radical change. I've never
liked Tegratol and Lamictol has helped me the most, so we
wanted to replace the former. He talked about a lot of
drugs, new ones, older ones. One that worked well, but had
killed people, etc.
"So, what do I do, flip a coin?" I asked.
He suggested Topamax. He said in a few weeks I'd know if it
worked well for me or if it just made me too dazed. I was
very excited! A 2 week trial! I didn't have to try it for
a year to decide it wasn't necessary the right drug....what
a concept....
The Good
The first Topamax I took (25 mg) kept me up most of the
night - with a small smile on my face. The next day I was
buzzed, tired - and okay. I've felt much better since
starting the drug overall. Abi says I have much more
energy. She's like 'I want to go to bed and you want to go
to the store?!' I've felt calmer at work and throughout the
day. Each time I increase the medicine (last week to 50
mg/day and this week 100 mg/day + less 200 Tegretol), I go
through an adjustment period. My sleep gets thrown off.
I have to 'readjust' to what is normal.
And my life seems to be a lot better.
Abi and I have been talking about how it is hard to get our
hopes up. We've been through getting new drugs and new
hopes. I can't say seizures are a thing of the past. I can
say I've stepped in the right direction.
Now I'll get off the rest of the Tegretol, let my body get
used to the Topamax and see where we are. If life is grand
- next I tackle the Klonopin.
Damn I spend a lot of time talking about drugs, don't I. I
have a lot of them in my life right now. Oh well.
Today
This is the Jewish New Year. A time for new beginnings. A
time for reflection and a time for renewal. At a Yellow
Springs service yesterday, Zachary said he hoped I could
drive again this year. Abi hoped for some calmness and
centeredness in our family life. I silently hoped my
seizures would stop.
And with that - I quickly add that I am going on with my
life NOW. My life is okay.
So there you have it. In a few short days I will be 34. My
early 30s sure have given me time to pause and rethink my
life. If I ever figure out what that means, I let you know.
I love you all!
Be well....