i'm 41 years old had epilepsy since
the age of 8, the seizures had been
controlled by medication until about 5
years ago. I started having a seizure
every other mentrual cycle while I slept.
I have been unable to find a doctor that
can explain the hormone seizures. So I
switched medications hoping that would
take care of the seizures. I had been
taking tegretal for many years, I tried
lamictal, topamax and keppra but the side
effects from all three of those
medications made it impossible for me to
live a normal life. The one side effect
that is holding me back is my right arm
and leg, I can hardly write with my right
arm and it is very difficult for me to
walk. I'm scared my ability to be a
normal person will not return I feel
cripped. I'm only taking topamax 150mg a
day and I will be off that in a week and
back on tegretal, has anyone experience
this type of side effect? My doctor said
there is nothing he can do and to give it
a few weeks. At this age do we still
need to get eeg? My doctor suggested a
mri ? Fyi: i'm looking another doctor
anyone have a ref in the seattle area?
Thanks for listening............ :d
|
ksbkrzi
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 10 Location: Slovenia, Europe
Posted: 06-25-04 17:08pm
Dear tsmcpherson,
i am 40 years old and I had seizures since
8th till 18th year, then nothing till my
38th year. After that my seizures were
connected with menstrual cycle. My
neurologist at first tried with tegretol
cr, but since there were no results, we
decided to try neurontin. After terrible
side effects (for three, four months)
everything is much better now. My
seizures, it seems so, are under control.
|
mommy2
New User, Becoming EHEALTHy
Joined: 07 Jun 2004 Posts: 16
Posted: 07-09-04 22:52pm
Hello there! My seizures went away in my
late teens and they came back with my
first pregnancy. Obviously the hormones.
I have the best doctors/surgeon in the
area (oh) and they have confirmed that
there is no answer to the hormone
situation. None of the meds could fully
control my situation after the
pregnancy.
Four months now after my surgery and I am
almost off all of my meds.
Look into it if this is a possibility for
you. You have been through enough.
|
MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 07-11-04 07:21am
Tsmcpherson,
for years I have asked my doc about the
hormone connection.... But he doesn't
agree. My seizures didn't get bad until I
had my first daughter. I had none while
pregnant the 2nd time, and after I had my
hystorectomy I felt great and had no
seizures for 4 months.
About your arm hurting..... The same
thing was happening with me. I have been
on all the meds and combos of meds the doc
can come up with. I was on topamax once
and lost alot of weight and my body just
started to hurt mainly my left
arm/shoulder area. I was taken off the
topamax cuz of the weight lose (i look
like a walking skeleton). Then after
trying other meds the doc put me back on
topamax and wanted me on a high dose to
see if it would work better.
Well, during the time when I wasn't taking
it my body didn't hurt so bad. But the
higher the dose got (i got to 500mg a day)
the worst my arm felt. It hurt to wash
dishes or to fold laundry. Not to metion
that I couldn't think straight. And had
headaches all the time.
I couldn't take it no more.... The doc
wanted me to keep uping the dose, but I
couldn't function. So in may I weaned
myself off the topamax.....
Since may I have only had 3 seizures.....A
big difference from several a day. And my
arm and body don't hurt no more.
My doc is mad at me, he keeps telling me
that I need some meds..... But I have
come to the opion that maybe the meds were
making me have more seizures. All I know
is that I feel great and I can think
clearly and I have energy. And my quality
of life has improved greatly. And its a
chance i'm willing to take not being on
meds.... I have been taking them for over
20 years with no success. And i'm not a
surgery canidate either the spots I have
in my brain can not be removed without
causing more problems for me.
Jill
|
mommy2
New User, Becoming EHEALTHy
Joined: 07 Jun 2004 Posts: 16
Posted: 07-11-04 13:31pm
Jill,
interesting pregnancy. I had a girl
first, too-with seizures. Did you have a
boy or girl the 2nd time? Trying to see
if there was any connection with the g/b
hormone differences.
|
TSMcPherson
New User, Becoming EHEALTHy
Joined: 05 Jun 2004 Posts: 6 Location: Federal Way
Posted: 07-13-04 18:52pm
mickeyfan
wrote:
tsmcpherson,
for years I have asked my doc about the
hormone connection.... But he doesn't
agree. My seizures didn't get bad until
I had my first daughter. I had none
while pregnant the 2nd time, and after I
had my hystorectomy I felt great and had
no seizures for 4 months.
About your arm hurting..... The same
thing was happening with me. I have been
on all the meds and combos of meds the doc
can come up with. I was on topamax once
and lost alot of weight and my body just
started to hurt mainly my left
arm/shoulder area. I was taken off the
topamax cuz of the weight lose (i look
like a walking skeleton). Then after
trying other meds the doc put me back on
topamax and wanted me on a high dose to
see if it would work better.
Well, during the time when I wasn't taking
it my body didn't hurt so bad. But the
higher the dose got (i got to 500mg a day)
the worst my arm felt. It hurt to wash
dishes or to fold laundry. Not to metion
that I couldn't think straight. And had
headaches all the time.
I couldn't take it no more.... The doc
wanted me to keep uping the dose, but I
couldn't function. So in may I weaned
myself off the topamax.....
Since may I have only had 3 seizures.....A
big difference from several a day. And
my arm and body don't hurt no more.
My doc is mad at me, he keeps telling me
that I need some meds..... But I have
come to the opion that maybe the meds were
making me have more seizures. All I know
is that I feel great and I can think
clearly and I have energy. And my
quality of life has improved greatly.
And its a chance i'm willing to take not
being on meds.... I have been taking
them for over 20 years with no success.
And i'm not a surgery canidate either the
spots I have in my brain can not be
removed without causing more problems for
me.
Jill
hi jill,
thank you for the info - i'm happy to
hear your success.
I'm am totally off topamax now and taking
trileptal which seems to be doing the
trick at the moment. However, my doctor
wanted me to have an mri due to the
problem I was experiencing. The mri
shows scaring which could be from an
infection years ago, but wants me to do
additional testing to rule out ms. I am
going to get a second opinion first since
he wants me to have a spinal tap and I
have been told that is the old way to test
for ms. The soga continues.....
Take care :d
|
TSMcPherson
New User, Becoming EHEALTHy
Joined: 05 Jun 2004 Posts: 6 Location: Federal Way
Posted: 07-14-04 12:43pm
ksbkrzi
wrote:
dear tsmcpherson,
i am 40 years old and I had seizures since
8th till 18th year, then nothing till my
38th year. After that my seizures were
connected with menstrual cycle. My
neurologist at first tried with tegretol
cr, but since there were no results, we
decided to try neurontin. After terrible
side effects (for three, four months)
everything is much better now. My
seizures, it seems so, are under
control.
hi ksbkrzi,
thank you for your response - what type
of side effects did you incounter ? The
side effects I have experienced with past
medication has been to much for me to
handle and live a normal life.
|
TSMcPherson
New User, Becoming EHEALTHy
Joined: 05 Jun 2004 Posts: 6 Location: Federal Way
Posted: 07-14-04 12:43pm
ksbkrzi
wrote:
dear tsmcpherson,
i am 40 years old and I had seizures since
8th till 18th year, then nothing till my
38th year. After that my seizures were
connected with menstrual cycle. My
neurologist at first tried with tegretol
cr, but since there were no results, we
decided to try neurontin. After terrible
side effects (for three, four months)
everything is much better now. My
seizures, it seems so, are under
control.
hi ksbkrzi,
thank you for your response - what type
of side effects did you incounter ? The
side effects I have experienced with past
medication has been to much for me to
handle and live a normal life.
Good luck I hope everything continues
to go well.
|
ksbkrzi
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 10 Location: Slovenia, Europe
Epilepsy & Hormones Posted: 08-14-04 18:40pm
Tsmcpherson,
neurontin was really nasty at first: I had
troubles with "double vision", week knees,
troubles with finding "right words", my
concentration was at level of gold fish,
there were panic attacks ... You name it.
Also I was extremely sensitive when
listening to the music (this was horrible
to me since I help a lot to my husband who
is composer) - I just had feeling that I
hear "too much", like music will explode
in my head any moment. My neurologist
persuaded me to be patient for some three
or for months. Since I have trust in him
I decided to wait patiently, and really -
after this period little by little
everything began to change. Now I didn't
have any troubles since march and finally
my claustrophoby (fear of having attack
out of home and far from my husband) is
also slowly going away. Well, I work at
home anyway ... But my doctor said that I
reacted extremely badly, so all this is
not something everybody experiences when
at beginning of taking neurontin. Good
luck!
