Had my first grand mal seizure at 16, in
1967. Was put on 300 mg dilantin a day.
A couple years later, 60 mg of
phenobarbital was added. I averaged about
one seizure about every 3 years until
1988. From what I have read, I guess I
was lucky.
Since 1988 I have been seizure free.
That's 16 years seizure free. Is there
any such thing as epilepsy "going away" at
random?
Has anyone out there ever had their
epilepsy disappear?
|
Midnight
New User, Becoming EHEALTHy
Joined: 28 Jan 2004 Posts: 33
Posted: 04-27-04 04:14am
No more meds?
|
JohnDoe
New User, Becoming EHEALTHy
Joined: 26 Apr 2004 Posts: 2
Re: Midnight Posted: 04-27-04 06:46am
Sorry. Still taking the exact same meds,
same dosages. From 1967 to 1988, averaged
about 1 seizure every 3 years. Since
1988, none.
|
Midnight
New User, Becoming EHEALTHy
Joined: 28 Jan 2004 Posts: 33
Posted: 04-28-04 09:56am
That is something that I have been
wondering/hoping. I wish mine would
disappear. I was just recently
diagnosed, 1 1/2 years ago.
|
RyGuy
New User, Becoming EHEALTHy
Joined: 06 May 2004 Posts: 19 Location: MD
Going Off Meds... Posted: 05-06-04 05:58am
You have to have been seizure-free for 5
years in my state before they'll even
consider taking you off meds. Even then,
they'll recommend you stay on it. You
should talk to your doc about going off.
I've never heard of anyone being cured,
just attaining better "control".
Personally, i'm very cynical about this.
Most epilepsy research is funded by
pharmaceutical companies who are looking
for lifelong consumers not cured
epileptics.
|
connie elaine
New User, Becoming EHEALTHy
Joined: 22 May 2004 Posts: 20 Location: Charleston, South Carolina
Posted: 05-22-04 11:21am
I started having g-mal seizures when I was
about 13 til I was 23 then they quit they
came back when I was 36 that was 2 years
ago and I still am having them. My
grandfather on my mothers side was the
exact same way and he had them until he
died when he was in his 60's. He was on
fenabarbatal ?Sp? .
I am on keppra now.
Connie
|
MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 05-23-04 21:53pm
It seems that i've been dealing with this
forever ( I was dianosed epileptic when I
was 19 and i'm now 39).... And the older
I get more seizures I have.... And there
changing too. And all the doc has told me
is that sometimes this happens to people
with seizures.
I still keep hoping that they'll come up
with the right med or med combo for
me..... But, I been on just about all of
them already. And my only hope is new
meds coming out.
|
ksbkrzi
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 10 Location: Slovenia, Europe
Posted: 06-18-04 19:40pm
I was seizure free and without meds from
my 19th to 39th year ... I was so sorry
when they returned.
|
SleepyJen
New User, Becoming EHEALTHy
Joined: 31 May 2004 Posts: 41 Location: NYC
Posted: 06-18-04 23:45pm
It's definitely possible (although I
haven't been so lucky). Since you've
been seizure free 16 years, I (and this is
just me) would consider lowering meds
really slowly. Of course it's important
to consider how you would feel and
function if you're seizures returned.
Mine just got bad again after 5 years of
close to nothing, and it was very
upsetting. Best of luck, whatever you
decide to do.
|
sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Posted: 06-19-04 03:52am
Hello to all.
Ive only had epilepsy since late october
2003. So I dont know what its like to
have lived my entire life with seizures.
I have had all the tests and there are no
abnormalities in any of my scans. But
still my doctors insist that I am a
temporal lobe epileptic. So seing that I
have only been the same old me but only
with a new part ( the seizures) some of my
old friends dont want to be my friends
anymore because they say I am frightening.
Now my medication is stable I supose now.
And my neurologist that I last saw wants
to phase out one of my medications. I
feel like he is evil. Because for the
last 2 months I have been almost seizure
free but for those 6 months earlier I was
having so many that I was, I dont know
who. So I guess its up to the individual.
I am certainly not ready to give up my
medications. Just the thought of me going
into another one of those 40minute
seizures scares me to death. Because I
roll into another after another grand mal.
And it becmoes status.
