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Medical Forum / Diseases and Disorders / Epilepsy / September 2003

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keppra- to be or not to be

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Greensills - 29 Aug 2003 02:53 GMT
I'm currently taking topomax and lamictal and have tried just about
everything else, to no avail. The specialist wants me to add in keppra. I'm
really tired of trying drugs, side effects from them and then finding that
they don't work. I mean REALLY tired! But I'm also really tired of
fitting.....petit mals, grand mals everything!
What I want I suppose is an iron clad guarantee that keppra won't give me
any side effects (especially depression and mood swings I'm a woman and we
have enough of those!!!! :) ).   But seriously I would like to know of a few
more people who have tried it and what outcomes they have had. Has it
controlled grand mals in particular?
Please answer soon.....oh and if there is a decent chat room that I could
join to talk about this sort of thing I would appreciate it - I joined one
and it ended up like a chat - up room!!!!
Thanks in advance
Luv Jen
pottsy - 29 Aug 2003 09:03 GMT
hiya Jen,

The Keppra stopped me falling over but did give me the mood swings and
depression, I just take myself out of the way 'till it passes. It also can
make me feel real crappy in the stomach and not want to eat.
I'd still rather not fall over tho'

pottsy
Dave ???? - 30 Aug 2003 01:56 GMT
Howdy!

They've been switching & swapping my drugs for 35 years now!

I don't know about "don't work" but I still have seizures.  I used to have
simple partials, complex partials and tonic clonics. I don't have tonic
clonics anymore so I don't say it doesn't work, I just say "it doesn't
control my seizures" because I don't know how much worse it would be if I
stopped taking medications.

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Dave ????

http://www.howdydave.com

> I'm currently taking topomax and lamictal and have tried just about
> everything else, to no avail. The specialist wants me to add in keppra. I'm
[quoted text clipped - 11 lines]
> Thanks in advance
> Luv Jen
mike k - 30 Aug 2003 11:28 GMT
> I'm currently taking topomax and lamictal and have tried just about
> everything else, to no avail. The specialist wants me to add in keppra. I'm
[quoted text clipped - 11 lines]
> Thanks in advance
> Luv Jen

don't generally have grand mals, but have complex partials.  Tegretol
gives me a certain degree of control, but over the last 7 years I've
been trying Tegretol+something to try for the elusive total control.  A
brief summary so far:
Tegretol+lamictal - disaster. Lamictal caused cps' to worsen, ultimately
resulting in a status episode & visit to the local a & e department
where they topped me up with valium

tegretol+gabapentin - didn't do anything for seizure control, but I
spent a very pleasant 9 months totally stoned.

tegretol+topomax - big improvement on seizure control, but not nice side
effects (extreme mood swings, total loss of libido)

tegretol+epilim - initially good results.  Seizure frequency about
halved, but put on almost 50pounds in weight.  Latterly seizure
frequency became erratic.

tegretol+keppra - been on this now approx 8 weeks.  So far seizure free,
& relatively free from side effects.  Wasn't the case initially though.  
First couple of weeks were hell.  VERY extreme mood swings, but these
seemed to stabilise as dose was increased (appeared to be having
something akin to withdrawal symptoms between doses).  Slight problem
initially with fluid retention, but this has now disappeared.  Now
feeling pretty good & positive about things.

I guess what it all boils down to is that there are no guarantees.  
everyone react to the drugs a little differently.  The initial side
effects from keppra were horrible.  My doc was on the verge of taking me
off it when he saw the state I was in, but having tried all the others,
I was determined to keep at it until either the effects disappeared, or
i was certain in my own mind that it wasn't going to work.  So far so
good.  I know how you feel - I've had the "oh god, not another load of
chemicals" trip, but in the end I figured if the side effects were too
much, I can always come off it, if i don't try it, I'll definately not
be controlled.

Good luck

Signature

Mike k
==

Guenveurx - 03 Sep 2003 05:38 GMT
Keppra has been great as far as stopping seizures for me.  It made me extremely
drowsy at first, but that has been getting better as time passes.  
 
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