Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
For People Who Have Been Doing This For Many Years..... Posted: 06-26-04 07:59am
I have been having seizures now officially
20 years now, I have been on just about
all the meds and med combos that the doc
can come up with. From low doses to
really high ones. I even have done a
couple of drug studies.
Everytime though I go though what my doc
calls a honeymoon period with the med(s)
and it seems to help and a short while
later (usually 5-6 months) it just stops
helping.
The last round of meds we tried was
topamax, the side effects were rotten.
But the doc thought if I stuck it out and
he kept increasing the dose it would help.
I got to 500mg a day, and couldn't think
clearly, spell, add, nor did I want to eat
anything, and I didn't talk right. (i
never could find the right word) I sounded
like a babbling idot....
My doc then informed me that he wanted to
switch my med again,
well, I decided that I was sick of the
side effects of the meds and told him that
I wanted to try not taking anything....
Of course he didn't like that idea.
Well, I did it anyway.... I weaned myself
off the topamax. I haven't had any meds
since may 16 2004. My mind is soooo much
clearer, I feel totally differnt my memory
doesn't stink any more.
And most of all i've gone from having a
couple of seizures a day to.... I have
only had 3 since the begining of may. And
those ones were no big deal, and my
mucsles which use to hurt to the point of
tears don't bother me hardly at all.
I know i'm taking a chance not being on
meds, my husband is worried that i'm going
to crash and have a real bad seizure(s).
But right now I think i'd rather just put
up with the few small ones I get......
Am I crazy to think that maybe the meds
cause some of the seizures???? Right now
noone believes me that I have only had the
3 seizures, my husband thinks this is
another kind of honeymoon period..... All
that I know is that I feel better and I
gained some weight back and don't look
like a walking skeleton.
Thanks to everyone for being here....
Jill
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Good For You! Posted: 06-26-04 10:20am
Hi jill!
I'm glad to hear that things are going
well for you! I agree with you that
sometimes meds can make things worse not
better. That's not to say I think being
unmedicated is all that good, but if you
feel better that way and are having a
better quality of life right now, then
maybe it's worth a shot. I suggested
going off meds for a while one time, and I
did, and unfortunately it didn't work out
for me. My seizure condition has never
been all that bad to begin with (usually
having 1-2 tonic seizures every 18-24
months, although daily I have small petit
mal ones which is only some quick eye
fluttering). After I went off meds I ran
into problems a short while later so i've
been medicated since and have tried a
couple different drugs.
Anyway, my point is that, as I said
before, if you find that you are happier
now then I think it's worth a try. With
any medical decision there are always
risks and side effects, I guess you just
have to try to figure out which risks and
side effects are most easy for you to cope
with. Where there is no known cure for
epilepsy, treatment in many ways is
somewhat of an experiment or guessing
game, trying different methods etc. Good
for you for taking a chance. Just
remember to keep yourself safe and also
think about what is best for your
family.
Kathy
p.S. How have your seizures changed
since going off the meds? What were they
like before you made this decision?
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 06-26-04 20:57pm
Kathyalison,
thank you for the support.... I don't
know how long you have had seizures, but I
have been going through this for so long
and it seemed that nothing worked for
long.
I do realize the risk of no meds, and I am
being careful..... The three that I had
were small and didn't last long, only
about a minute.
They really haven't changed, I do think
that I am more aware of whats happening to
my body now..... And can sense things
better.
Thanks again,
jill
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pharmainvextor12
New User, Becoming EHEALTHy
Joined: 29 Jun 2004 Posts: 8
Mickeyfan: Posted: 06-29-04 23:24pm
If over the past 20 years you had tried
many drugs but still experienced with
seizures,
why not discussing with your doctors
trying other alternatives? (although I
have found only one: vagus nerve
stimulator therapy)
just go to google news, type, "seizure vns
therapy"
there's a nice story about a little girl
how she recovers from her seizures while
trying the vns therapy...
Hope this helps.
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 06-30-04 07:55am
Pharmainvexto12,
i have looked into the vagus nerve
stimulator, and surgery. Unfortunatley
niether is an option for me. The doc(s)
have told me that surgery is not possible
cuz I have abnormalites on both
hemispheres, the right is 2/3 of that side
and the left is about the size of a
quarter.
They also told me that because where my
seizures are coming from they said that I
would only have a 5% chance of the vagus
nerve stimulator benefiting me at all.
So i'm stuck with meds..... The docs at
the cleveland clinic did tell me hopefully
in 10 years or so surgery will have
advanced enough to where it would be safe
for me.
Jill
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pharmainvextor12
New User, Becoming EHEALTHy
Joined: 29 Jun 2004 Posts: 8
Mickeyfan: Posted: 06-30-04 14:36pm
Sorry mickeyfan,
i don't know now....
But even 5% of chances is still a hope?
I wish you good health, rich and good
luck.
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angelbeans
New User, Becoming EHEALTHy
Joined: 08 Jul 2004 Posts: 38
Posted: 07-08-04 21:13pm
Its funny you made the comment that you
think the meds may have caused your
seziures. My mother thinks thats what
happened to me. I was diagnosed ten years
ago, however I had seziures for about two
years before I was diagnosed, but petit
mal seziures. A couple of years after I
had started meds, I was taken off meds,
and I had grand mal seziures, which never
used to occcur. My mother felt this was
caused by the medication... I would like
to look into other treatment, however I
was also told that I would be stuck with
meds for the rest of my life
