Hi Fiona

You talked about inoperable, but didn't mention if he had a tumor. Does he?

I tried lamictal and it was quite promising & effective except that I started to
get the rash and they had to stop it right away.

I've had both Complex Partials & Simple Parials and, in retropect, this has been
going on all my life although it only came back again with a vengeance in the
past several years after being gone for quite a few years. Mri's, CT-Scans are
clean as are normal EEG's, but overnite EEG's & sleep-deprived ones in the
hospital show problems in the temporal lobes.

At the moment, I am being controlled by phenobarbital & neurontin, which don't
stop me from feeling miserable & depressed a large amount of the time, but have
held the seizures mainly in check.

Bob

g'day fiona,
i am pretty well controlled, i might have 1 or 2 auras a month but haven't
had a CP for 18 months or so now. at the moment i take 1600mg tegretol and
400mg lamictal daily. previously i was on 1600mg tegretol and 400mg topamax
and i had no auras at all, unfortunately topamax didn't agree with me.
similar combinations of medication may work for some people but we're all
different so our needs are too. i hope you find the right combo for your
son.
pablo

Have complex partial seizures.  Have used Tegretol and Dilantin, both with good
results.  Was removed from Tegretol because of an overwhelming rash, but the
stuff worked great.

Barb

Tegretol 800 mg, Clobazam 40 mg.  Major side effects = fatigue, memory.

I have been on Tegretol 400x2 for about a year, haven't had a seizure since
I started (knock wood!). I was getting complex partials, absences and grand
mals.

My epilepsy has never been completely controlled but I have not had a
grand mal for a few years.
I had fewer partial ones when I was on phenobarbitone 30yrs ago but was
virtually asleep for 5yrs.
Then phenytoin was horrible and other things were tried but I only
remember carbamazepine (Tegretol).

I volunteered to be a guinea pig for amotrigine before it was marketed as
lamictal and have been on it ever since. I reduced the dose from
400mgm/day to 300mgm/day because on the higher dose I bruised very easily
and even when most of the bruise had gone a permanent pattern of blood
vessels tended to stay.

Once when I was in hospital for a time 10mgm/day clobazam (Frisium) was
prescribed. I'm not sure whether that was before benzodiazepines were
found to be addictive but the doctors foolishly allowed me to stay on the
dose continuously rather than on the 2 weeks on 2 weeks off basis they've
dveloped for PMT. I say 'foolishly' because I get very ill if I try to
come off the clobazam but I don't think it has a positive effect.

I also have what I call automatic phases after my actual fits. I used to
just try to go home and/or to bed but now I sometimes dance or . . I'll
have to ak my husband because I never remember what I've done.
Fortunately, I must be aware at the time because I have not had accidents
crossing roads or whatever.

I'm now asking if carbamazepine can be added because I've just been
diagnosed with manic depression and it is prescribed for that (and so is
lamotrigine).

Chris L.

.....................

Fiona,

Depakote as monotherapy worked well for me in the past but was too toxic for
me. Now I take Lamictal and a chaser of Neurontin.  Sorry to know that your
son is having such a hard time. Kids are so brave.

Cheryl