Well, it seems that in some ways we have a handle on what is happening and
in some ways we are at a complete loss. The MRI and EEG showed nothing. My
seizures seem to leveled off at about two a week, always one worse than
the
other. I have had a couple of really bad grand mals, one last week while I
was here alone and I lost a little more than three hours. My parents
called
repeatedly in that time, my Dad came by and rang the bell and knocked and
I
was unaware of anything. That is the most frightening part for me, is the
time lost and the complete disconnection. I fear it will happen while my
kids are alone with me again and I don't want that.
My Dilantin level last week was too high at 25, and so I see the
neurologist
today for an update and whatever changes are necessary. I was on Demerol
for
the pain that I have left over from all the surgeries and damage before.
We
have changed the Demerol to a medicine that doesn't interact with the
Dilantin blood levels badly. We will see if that works. Otherwise we will
have to add another medication. Because of my medication allergies and
angioedema any new meds have to be added either at the doctor's office or
the hospital. We'll see.
I really value listening to other people who are living with epilepsy. And
the list of links is a God send when I am having a worry filled moment.
Cindi
