Hello
my wife is 34 years old and I have been
married for 5 years my wife had ep prior
to us meeting she had only had seizures
aprox every 6 months or so and usually pet
ma seizures and has not taken meds since
she was about 15 years old. Our son was
born 4.5 years ago and when he was aprox 3
months old she had a very bad grandma
seiz, in hospital for days and did not
even know who I was. That was 4.5 years
ago. Before this time she was a healthy
happy woman. After that seiz we found
what we thought was a good neurologist he
pescribed topmax and had my wife work her
way up to 1000 mg a day based on her eeg,
well if you know at all about these crazy
meds you can imagine the results. She
lost allot of weight and became a nut.
After that he reduced her to 500 mg a day
and things got allot better than they
were. Well since then we have been thru
many doctors and in march of 04 we found a
doctor who I believe in and he seems to
try but she is still on topmax 200mg per
day. It seems that ever since she has
been on topmax she has so many health
problems. In the past few years she has
been told that her constant back pain is
fibormioliga so they give her meds for
that, she has a different sleep pattern
every week, she always seems to get really
motivated about new things but never
follows thru with anything, it seems like
she gets sick allot like stomach aches,
nausia, headaces, etc etc, am I alone with
these symptoms ? Before she ever took
these meds she was a happy outgoing woman,
my wife is now 34 years young and I swear
she never had these problems before these
meds, you can listen to the doctor and
sometimes you think they have no idea what
the hell they are doing, can her meds
cause all this mysterious illness, she has
no seizures now but feels like she is
going to in frequently, say once a month.
When she has her eeg is shows seizure
activity in her left rear brain above her
ear so she definitely has ep but I think
this topmax is screwing up her mind and
body she had tried the traditional meds
when she was a kid, dilanton and tegritol
but said they made her feel sick, does
anyone have any advice with some
experience under their belt??????
Thanks, frustrated husband
P.S. Sorry about the spelling
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my3sons
New User, Becoming EHEALTHy
Joined: 18 Jul 2004 Posts: 10 Location: la
Posted: 07-20-04 00:01am
My grandmothers crazy doctors give her
topamax to lose weight! Well any way one
night I was having a bad migraine and it
was on a saturday and my local pharmicist
was closed until monday!! And g-ma said
she had migraine medicine so she gave me
one 100 milligram topamax to take well I
was scared to take the whole pill so I
broke it in half and after I took it I got
very sick feeling I felt like I had got
nauseated and kept gaging and for two
weeks after that my tounge felt numb like
when I drunk a coke...Etc... Carbonated
drinks felt like drinking water!!!!! That
is some seriously strong medicine.. My
dad has had 6 grandma seizures in the last
2 years and he takes dialantin 100 mg and
they control them but when he stops taking
it he has them he also has minor seizures
often in between!!! His are due to a very
bad car accident!!! Grandma seizures are
very scary!! But try to get your wife to
try dilantin again they are pretty good
for controlling seizures and now that wife
is a lil older her body may adjust to them
better!!!!!!!
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danceman
New User, Becoming EHEALTHy
Joined: 17 Jul 2004 Posts: 22 Location: Australia
Wife On Topamax Posted: 07-20-04 06:10am
I was on topamax for a while .I lost a lot
of weight and my nuerologist increased
the doses before I could convince him to
decrease them as it was not only affecting
my weight but day to day life. I would be
asking your specialist to wean her off
topamax and try something else,when I went
off topamax I tried a few others but have
since settled with nuerontin along with
dilantin and tegretol which are the main
two stabilisers for me.
I have heard unusual reports about
dilantin and women ,one been that it
causes excessive hairiness on thier legs
good luck, keep trying ,and even if you
dont find something that completly
controls her epilepsy ,you may find a
combination that reduces the frequency or
severity of them.
|
scooter
New User, Becoming EHEALTHy
Joined: 24 Jul 2004 Posts: 3 Location: st. louis
Topamax And Epilepsy Posted: 07-25-04 00:04am
Hey man,
i've been in a similar situation as your
wife. I was a normal guy until I got one
too many concussions from football and
dropped to the ground one day with a grand
mal seizure from scar tissue on my brain
on my right temporal lobe. I've been on
dilantin, lamictal, keppra, and now I am
on topamax, and all have f***ed with my
head in some way. I'm 24, I can't drive,
I live at home with my parents, and am
trying to get back on my feet in life.
When this kind of thing happens, your life
gets turned upside down. You feel
motivated for a short time, then you never
see your projects through to the end. I
know how your wife feels. And every
failure piles up. Each experience adds
on, and each seizure is remembered by your
brain. I really can't say anything on the
meds except keep trying them until you
find one that fits. It took me 2 years
and 4 meds until I finally settled down.
I was schizo, depressed, violent, crazy,
and in jail for awhile, and now, on
topamax, I am seizure free, and back in
college. Try finding a specific epilepsy
center that specialized in only that. My
first 2 doctors sucked. I ended up going
to the mayo clinic in minneapolis that was
good and barnes jewish hospital epilepsy
center in st. Louis. Good luck. Keep
fightin.
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beckerc1
New User, Becoming EHEALTHy
Joined: 27 Jul 2004 Posts: 4 Location: Mobile Al
Topamax Posted: 07-29-04 05:54am
That drug screws with thinking. I
couldn't remember anything!!! Tell your
doctor to put her on keppra - I love it !
I will probably need another drug
eventually, but for know my seizures are
under controll, and I don't have to feel
like my mind is gone.
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kelly207
New User, Becoming EHEALTHy
Joined: 23 Jul 2004 Posts: 7 Location: canada
Posted: 07-29-04 11:33am
My doctors also put me on topomax a few
years ago. Talk about raging psychotic!!
My husband said he was so freaked out he
didn't know what he should do, run for his
life, or stay and risk pain to help me!!
And that was only after three weeks of
topomax! You need to insist to your
doctor that this cure is not worth it.
When my husband phoned my doc to tell him,
my doc admitted that this frequently
happens, but sometimes when it doesn't
it's a good med. I would definitely
never try anything like that one again,
and now when my doctor suggests new meds I
ask him on a scale of one to ten how it
rates to the experience I had on topomax.
It's really frustrating, but the best
thing you can do is just keep seeing
different doctors until you finally find
one who works well with you and your wife.
I've had epilepsy since I was 15 (20 yrs
now) and i've seen so many doctors. But
now I have one who actually listens to me,
and he knows that i'm not going to pull
any punches when I talk to him about my
health, so he knows he can do the same.
By the way, much credit to you for
sticking by your wife so selflessly, I can
only imagine how devastating this is for
you to go through as well. Many women
don't have that kind of support, and you
should know that you being there makes a
huge difference. All the best!
Hi
i was on that drug for a year the max, I
when I hit my level diagonsed by my
nuerologist, I started to have big
problems. My attatcks did not improve (i
have partial refractory epilepsy) and my
health started to diminish slowly without
me realising it, or I just ignored it
thinking it was nothing. I soon got to
the stage where my body was exhausted
everyday (please note, I was attending a
gym on a regular basis and was very fit at
the time), but it came to the point I
could barely push myself. Within weeks,
my body started to hurt from top to toe,
then I found it almost impossible to walk
as my legs were in pure agony and I
started to limp. And, I lost over 2
stone in 4 weeks even though I was eating
a healthy and balanced diet. I had the
features of an escolotan and felt sick
everyday, diaroiah (not sure how you spell
it sorry) all the time. What the doctors
eventually found out, was that the tablets
had caused a calcium deficiency in my
system and as a result my bones
deterioated and my body could not cope
with the food I was processing.
Thankfully, once my nuerologist saw me in
this state she was very quick to act and
got me off them as soon as she could.
I for one, will never ever go back to
those tablets, they almost ruined my life
and even though it was a year ago, I still
feel a bit on edge about it all.
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amijoy
New User, Becoming EHEALTHy
Joined: 11 Jul 2004 Posts: 21 Location: Georgia
Posted: 04-22-05 19:29pm
Always remember, medicines work
differently for everyone. I'm on 200 mg
topamax daily. I never lost 1 pound.
At first, it effected my thinking.
Actually, for quite some time. I even
lost my job over it. (at a doctor's
office, no less) she was a very
non-understanding doctor!) it still
effects my memory.
Epilepsy is still new to me. I was
diagnosed in june 2004. I do not have
convulsive seizures. I have mostly
photosensitive seizures, first thing in
the morning and late at night. And the
topamax helps control my migraines.
Good luck to you.
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medicwife
New User, Becoming EHEALTHy
Joined: 17 May 2005 Posts: 17 Location: Illinois
Posted: 05-17-05 10:20am
Some of the side effects of topomax are,
trouble concentrating, back pain, joint
pain, numbnes and tingling in hands and
feet, problems sleeping, anxiety,
depression, suicidal tendencies,
agitation, problems finding words,
confusion, mood problems, sleeplessness,
short term memory loss, sensitivity to
sunlight....To name a few. Topomax is
also used to treat depression, migraine
headache, etc. It just depends on how
your body reacts to it. My hubby tried
dilantin, and was such a pain in the butt.
Agressive, screaming, etc. I don't
recommend that one, but again, its how
your body acts to it. There are plenty of
other drugs she can try, depakote,
dilantin, etc. I would ask for your dr to
make a switch, a gradual one, or ask for
something to help with the nuttiness.
Otherwise, she's your wife, you love her,
would you rather her not have seizures and
be a nut, or have them and be okay the
rest of the time? ( I don't actually
think there's a choice, i'm just
illustrating.)
