H i

I've has this "seizure disorder" for about 30 years and im still
having problems once in awhile. I want help from someone that
knows what there talking about, please!!

I've been toxic before, but with my resent spinal fusion and
all the drugs im on i didnt notice...I was getting leg weakness
and started falling over, I went back to using a walker and still
fell over flat on my face and broke my nose. Finaly I get into see
the neuro doc and after mulling all kinds of things over he says
"Uhuuuhhhmm...maybe we should test your dilantin level, this is a
sympom of toxicity". The dim flickering light went off in my head at
that moment and I realized he was probably right. I go into the lab
and a few hours later get a call and the level was at 51.3 OMFG !11

Every time I've tried to detox at high levels I end up seizing..theis
doctors dont know what there doing half the time and are just too
busy to really care. This time ive taken charge of this situation because
I'm really tired of going to the ER and ending up with astromical ambulance
fees etc.

So in conjunction with the doctor I have gotten standing orders at a hopt.
lab for testing. The doctor says "stop taking it for 3 days" well bull ****..
Ive heard this before and ended up in the ER again with 0 level dilantin.
I told the nurse on the phone..no I gotta taper off this time, and I cut
my dose in half (I take 800mg generic) and a couple days ago it was at
30...now the fog is lifting and i can almost think again...the thing is I don't
think dilantin levels always decrease on a sine curve they can sink like a stone
in no time flat.

Today I'm waiting for my resluts from yesterdays test, they still havn't called
which is good news becaause they would have if it was bad, but last night
I started getting twitches and i didn't like that, i took two extra.

What I'm wondering about is this seems to be the critical time were the level
is ok, so i think i better start loading back up or im in big trouble because
for some reason I can shed the drug at this point really easy. Also being
toxic the body has become used to that level and now you could have a break through seizure on normal levels. Does this sound right ??
I'm I doing the right thing? It's nice to be able to walk again and think.
However I'm really tired of this crap..I'm 48 and have a neck fusion if
I have a seizure i could die. Is anyone here really really experienced with
this. Maybe a 20 year charge nurse or someting ? LOL.. no doctors please
your all idiots.

Dave