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Medical Forum / Diseases and Disorders / Epilepsy / May 2004

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taking AEDs for tumor induced seizures

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billx - 02 Apr 2004 23:11 GMT
Anyone else in this group taking drugs for seizures due to low grade tumor
that has not been surgically removed?  If so what drug(s) have worked best
for you?  I'm taking 500mg Dilantin and 1000mg Keppra/day and the recently
added Keppra has made a big difference in reducing my seizure frequency.
Would like to here what's working best for others.
Mary Fisher - 03 Apr 2004 09:29 GMT
> Anyone else in this group taking drugs for seizures due to low grade tumor
> that has not been surgically removed?  If so what drug(s) have worked best
> for you?  I'm taking 500mg Dilantin and 1000mg Keppra/day and the recently
> added Keppra has made a big difference in reducing my seizure frequency.
> Would like to here what's working best for others.

No but I'm very intereted in the question - or the reasons for it.

What do you mean by a low grade tumour?

Why hasn't it been removed?

TIA

Mary>
BillX - 05 Apr 2004 00:14 GMT
Mary,

Tumors are ranked on a numeric scale based on factors that determine how
aggressive they are.  Lowest grade tumor (1) most closely resemble normal
brain cells and tend to grow very slowy (some are over 20 years old before
first detection).  By comparison highest grade tumor (4) is significantly
altered from normal cells, grows aggressively, and has a high tendency to
matastisize to other areas of the brain.  Patients with this form of tumor
often die within the first year

Low grade tumors tend to work between the folds of the brain interwining
themselves with healthy tissue such that the two can not be separated.
Because of my tumor's size and location (centered in speach and
communication area) it can not be surgically removed without creating an
unacceptible deficit.

> What do you mean by a low grade tumour?
>
[quoted text clipped - 3 lines]
>
> Mary>
Mary Fisher - 05 Apr 2004 21:58 GMT
> Mary,
>
[quoted text clipped - 11 lines]
> communication area) it can not be surgically removed without creating an
> unacceptible deficit.

That's very clear, thank you.

Mary
zigzag - 12 May 2004 12:01 GMT
Right now I am taking Zonegran 400mg.  I feel it works well for partial
seizures, but it has serious side effects.  The two that have really
affected me are sleepiness and the worst is back pain.  About five days
ago I dropped the dosage to 200 mg. (don't recommend for anyone to do. I
had grandmal 27 years ago, and no other seizures, but occasionally the EEG
is abnormal). My tumor was a Cystic Astrocytoma II. Have you had
radiation?
Phil Jones - 04 Apr 2004 19:34 GMT
hey, i can't remember if we've talked previously, but i'm in your position
as well...
low grade tumour front temporal lobe. i'm a skinny short guy, so my i'm only
taking 250mg of dilantin. it has completely removed my grand mal seizures,
but the small sneaky complex partial seizures still sneak through couple
time weekly. = fun.

to compensate for this they added 750mg of valproic acid to it, but i've
seen no difference, my neuro psych put me on anti-depressants, thinking that
stress and panic were lowering my threshold for a seizure... and i think
this is helping me out with my complex partials. the frequency is waaaay
down.

earlier at one point the switched me to tegretol, and it was a nightmare for
me. they kept insisting on upping the dosage for its effectiveness, i said
screw it, give me the goods, gimme back my dilantin. :)

how has keppra helped you out? what types of seizures were you expriencing?

-phil

> Anyone else in this group taking drugs for seizures due to low grade tumor
> that has not been surgically removed?  If so what drug(s) have worked best
> for you?  I'm taking 500mg Dilantin and 1000mg Keppra/day and the recently
> added Keppra has made a big difference in reducing my seizure frequency.
> Would like to here what's working best for others.
BillX - 04 Apr 2004 23:49 GMT
Hi Phil,

My tumor is centered in my left temporal lobe mearuring around 6x4x4cm in
dimension.  First symptom was grand mal last July.  They put me on Dilantin
which addressed the big seizures but I'd still have partial seizures (ones
lasting 3-5 minutes in duration) a couple times per week that would follow
periods of prolonged exercise.  When they started me on Keppra at 1000mg/day
three months ago it was instant relief.  I didn't have any aura or seizures
for the firt two weeks.  Life was great.  Then I started to experience
anxiousness and irritability prior to my next Keppra dose.  Slowly the
anxiousness and irritablity went away over the period of a couple months.
My seizures short of the first grand mal have never led to unconciousness or
significant loss of muscle control but rather severe tingle/burning
sensation down right side accompanied by numbness in one or more areas of
the right side of body.  My understanding is not everyone responds to Keppra
in such a positive manner as I did but since we have similar underlying
catalyst you might want to discuss this drug with your Neuro.  Best of luck.

-Bill

PS:  Since I'm taking 500mg of Dilantin should you decide to try Keppra you
might want to start at 500 or 750mg/day.  As the side affects  from this
drug rise quickly with dose level doubt you'd want to experiment with
anything over 1000mg/day

> hey, i can't remember if we've talked previously, but i'm in your position
> as well...
[quoted text clipped - 22 lines]
> > added Keppra has made a big difference in reducing my seizure frequency.
> > Would like to here what's working best for others.
JohnV - 05 Apr 2004 16:46 GMT
I've had surgery, but it still may apply.  I had a Ganglioglioma tumor
(level 2 I think) and had most of it removed Oct 2002.  There's still
a bit left sitting right next to my brain stem.  I started out on
Dilantin.  It really messed me up, and didn't stop the seizures.  I
switched to Topamax.  The seizures didn't improve, and the drug maid
me very tired.  I switched to Lamictal, which is awesome as far as
side effects, but didn't stop the seizures completely.  I've added
Keppra as a supplement to Lamictal, and so far, so good.  No real side
effects either.
 
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