to Connie... Please Read. Posted: 05-25-04 02:24am
I'm a software analyst. It sounds to me
like one of the biggest problems you are
having is that your meds are:
- causing lots of side effects
- they are making your life worse.
- they aren't controlling your seizures
and auras.
2500 mg of keppra... Ugh. I space out
bad on keppra above 1000 mg and every
board i've ever read on keppra notes the
same problem as well suckers term memory
problems... You can't remember stuff.
Neurologists are an interesting "breed" of
doctors. I would suggest that you get a
new one. You really have nothing to lose.
No employer has the need to know that you
have seizures.
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connie elaine
New User, Becoming EHEALTHy
Joined: 22 May 2004 Posts: 20 Location: Charleston, South Carolina
Posted: 05-25-04 03:39am
Thanks for the advice,
my Dr. Did have me on other meds
(neurotin and depakote) before I started
taking the keppra. With the others I was
still having seizures and believe it or
not even worse side effects. Neurotin
was making me feel like a zombie and
depressed big time the auras were
terrible. Depakote I was shaky all the
time especially when I was concentrating
on something(writing or typing)and I
gained like 20#s still had seizures. He
gradually weaned me off and on the meds
and up until I had the last set of
seizures(one about 3 minutes after the
other) I was taking 2000 mg keppra daily
now I am on 2500 and hopefully I wont max
off of this one, my doctor said only one
more pill per day and I will. I am
scared of switching over to another I was
on some bad meds when I was young and I
dont want to go through that again.
I still have the aura's daily, funny thing
my husband is experiencing dizzy spells
and blurry vision its almost like he is
having "sympathy" aura's. He does not
even like it when there is alot of people
talking at once.
I usually get a audio aura right before my
seizures and I know that people are
talking to me but I cant understand what
they are saying and it feels like I am
"disappearing" when I come to I think that
I am waking up in my own bed or something
and everyone always says that I look as if
I am in a terrible state of confusion. I
sometimes get upset with them asking me
questions when I am trying to "wake up".
I dont really cry but my eyes weep
constantly and I almost always vomit and
urinate.
The last ones I had were in the eye
doctors office and I was so embarrassed.
He was trying to make me feel better by
telling me that I did not pee in his chair
but my pants were soaked and I remember
telling him over and over that I was so
sorry. He called the ems and even
followed me to the hospital and talked
with my husband. I am going to ask him
to write down every thing that I did and
how long I was seizing. I am going to
start keeping a daily journal so that I
can explain things better to my doctor.
He is a great doctor and I do believe that
he is really searching for the right med
for me to be on.
Oh another daily aura I get is the feeling
of a heart beat in my head and it feels
like the back of my head near the top of
my spine is opening up...Like flapping
open almost. And I can only focus on one
eye of people it's like everything else
turns into blankness...Like germs under a
microscope. All this is not painful
either. It just feels weird like i'm
gonna pass out or something.
Thanks,
connie elaine
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RyGuy
New User, Becoming EHEALTHy
Joined: 06 May 2004 Posts: 19 Location: MD
Vns? Posted: 05-25-04 04:51am
Well, if none of the meds are working and
while you still have insurance from your
employer, check out vns. There are a
bunch of clinical trials out there for
surgical correction of epilepsy and were I
you, i'd be checking them all out.
Best wishes.
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connie elaine
New User, Becoming EHEALTHy
Joined: 22 May 2004 Posts: 20 Location: Charleston, South Carolina
Vns? Posted: 05-25-04 05:53am
Hey what's vns stand for? Willing to try
something better at times.
Connie elaine
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Vns... Posted: 05-25-04 06:27am
Vns stands for vagus nerve stimulator.
Its a device that is implanted in the
front of your shoulder that you can
control with a special magnet to help
control and abort seizures.
For more info....
Www. Vnstherapy.Com
i hope this helps you.
Jill
