Joined: 03 Jun 2004 Posts: 3 Location: Jim Thorpe, Pa
I Feel Lost Posted: 06-03-04 12:04pm
Hi everyone;
i have a kind of unique situation. I was
diagnosed with seizure disorder last year
after my first grand mal. They found a
spot of abnormal brain matter which they
believe caused the seizures.
So, far I have been on dilantin and
lamictal. I was weened off the dilantin
about 4 months ago and increased my
lamictal. I have had 3 onsets this past
year and the most recent was last week. I
take blame for the first 2 since it was
the result of a missed dose. But since
the second happened, I have been very
strict with the meds. Which made the last
one so frustrating. On top of the last
onset, I had an anxiety attack (my first
one), so I was really scared.
I can't say that have been a big fan of
lamictal. I don't feel it "maintains" as
well as it been said it does. Plus, I
just feel like the quality of life has
been slowly going down hill. I have an
appointment with my doctor next week and
i'm going to ask if he can switch me to
something different.
I'm just so frustrated. I keep
researching to find a case similar to mine
but i'm finding nothing . Esp since I
don't have epilepsy.
Any else like me out there? Or anyone
have any advice or input?
Many thanks in advance!
erica
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RyGuy
New User, Becoming EHEALTHy
Joined: 06 May 2004 Posts: 19 Location: MD
Not Sure... Posted: 06-03-04 15:51pm
Where you are going with this. Missing a
dose happens even to the best of us. Have
you checked out surgery? Where you have a
clearly noted area of your brain... I'd
jump at removal!
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sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Stress! Posted: 06-03-04 16:06pm
Being stressed does not help the
situation(i know easier said than done)
you might talk with the Dr. About this
and the anxiety!
What kind of surgery do they have for
epilepsy?
Sincerely,
sandy
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
????? Posted: 06-03-04 17:13pm
Erica,
you said you have abnormal brain
matter..... What do you mean????
I do to. I have excessive amounts of gray
matter on the right hemisphere that equals
2/3 of the right side of my brain, and a
smaller spot on the left side about the
size of a quarter.
How did your doc describe yours????
How were you feeling before you had your
1st grandmal?????
I just didn't feel right and noone could
figure it out until I had my 1st grandmal.
The doc now tells me that all the weird
feelings and vision problems I was having
in the begining were smaller seizures.
I haven't had much success with meds
either. I have been on just about all of
them and many combos of them too.
I agree with you about the quality of life
stinking from the side effects..... But
you need to find a doc that will listen
and adjust your meds so things aren't so
bad.
If you have and questions just ask....
Jill
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EricaDD
New User, Becoming EHEALTHy
Joined: 03 Jun 2004 Posts: 3 Location: Jim Thorpe, Pa
Posted: 06-03-04 19:01pm
Hi again;
thank you all for responding.
Sorry if I was a little vague, I guess
some frustration is getting to me.
What I found out was there was a small
spot of brain matter where the grey fully
didn't develop from the white. (found
from my mri) it could have never affected
me my entire life but suddenly I got
lucky. (sarcasm, sorry)
the only time before my grand mal that I
felt strange was when I woke up the one
night very confused. My head pounded and
I wasn't sure what day it was and I bit
the side of my tongue very hard. After I
walked around my apartment a few times, I
realized where I was, what day it was and
went back to bed. I didn't think anything
of it. I sort of just wrote it off to be
a bad dream and figured I was clenching my
teeth which resulted in my bitten tongue
(i have tmj, too).
I think what is really frustrating (which
i'm sure is the case for all of us), its
that I went 24 years with no problems then
bam! I feel so dependant on the meds.
Why this is all sinking in now is beyond
me? Maybe I was numb to the fact of what
has happened? I really don't remember
much of the actually seizures, just the
waking up in the hospital part.
Well, before I start writing a novel, i'll
stop for now.
Best wishes everyone!
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
I Can Relate! Posted: 06-03-04 19:17pm
Hi erica!
I can completely relate to what you are
saying. I was diagnosed with petit mal
when I was 7 and no one ever thought
anything of it. Then when I was 19 I had
my first tonic (early stage of grand mal)
seizure. I had been out the night before
with friends and had some drinks. To
this day I swear a guy put something in my
drink that he prepared because the night
took a very interesting twist and it was
the following day that this first seizure
happened! Since then (9 years later)
seizures have been popping in and out of
my life. For me, stress, lack of sleep
or food and alcohol bring them on. I
used to be able to have a little to drink
with no problems but one new year's I had
too much a paid big time! I haven't had
anything to drink since. (geee...I make
it sound like i'm a drinker but i'm not)
anyhow....I was on lamictal for 7 years.
For the first 3 or so it worked great!
For a while I almost believed I was
cured!!!! But then, when put under any
amount of stress the seizures came back
and it was very clear that the drug was
not working for me. Right now i'm being
switched over to keppra (a really new
one). At first I was really scared of
the listed side effects, however, I am
pleased to say that i'm doing great. In
a few weeks i'm going to start going off
the lamictal so we'll see what happens
then. But so far, i'm really liking
keppra!
As far as being dependant goes....I know
exactly what you mean!! My last seizure
was march 15th. Prior to that it had been
oct. 6 2002! So all of a sudden my life
was turned upside down and I could no
longer drive...Which now means my husband,
dad or friends are carting me and my
daughter (2) everywhere! I can't stand
it and always feel like such a pain to
others. No one has ever made me feel
this way, just the situation. So, while
I can totally relate, I don't have any
advise, other than to try to keep your
chin up and share your feelings with
others as much as you can. If ever you
need an ear, please contact me. It
always helps knowing that we're not alone
when facing challenges!
Good wishes,
kathy
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sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Posted: 06-03-04 21:05pm
Don't worry about becoming dependent on
something, their is a difference between a
want and a need, i'm sure your Dr. Knows
what he is doing, just talk to him and be
thankful they do have the meds that they
do for epilepsy and other medical
problems.
Sincerely,
sandy
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MickeyFan
Experienced User , Rather EHEALTHy
Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Posted: 06-04-04 06:05am
Erica,
thats the same thing I have, but the grey
matter that didn't develope right is very
large in my case.
I have been to several doctors through out
the years, (i've had the same one now for
8 years) and I have been told that I was
born this way and they believe that as I
was growing up that I was have slight
seizures that noone noticed. When I was
20 months old they thought I had gotten
encephalitis (?) and wouldn't wake up for
a few days. But after searching for the
medical records for the doc I have now he
said that the blood counts and things that
they did way back in 1967 didn't point to
being sick, he believes that I had a
massive seizure while sleeping.
I was okay until about the age of 19 when
I had my 1st daughter, then I started to
feel weird as I called it. All sorts of
strange sensations and my vision was
getting really screwy, and I was dropping
everything. (we went through many
dishes)
then one day after I had my 2nd daughter
on the way home from visiting my mom, I
just felt out of it, twice I had to pull
over.
That night my husband was woke up by me
having a grandmal, the emergency room
doctors said that is was the worst that
they ever heard about and I had bitten
through my tongue and the sides of my
mouth to the point that they had to put
stitches in.
After that the docs finally decided that I
was epileptic.
I have often wondered why did this start
when I was 19 and has only gotten worst
over the years. I'm 39 now.
But you learn to deal with it, and adjust
to things.
Just like kathy said I have to watch my
sleep, eating, stress and other things
that I know that trigger them.
But I still seize just about every day
usually a couple times ( there are days
its just one after another).
Everyone with epilepsy has a different
seizure pattern, and frequency.
And having this site and my support group
helps me alot.
Feel free to contact me anytime.....
Jill
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EricaDD
New User, Becoming EHEALTHy
Joined: 03 Jun 2004 Posts: 3 Location: Jim Thorpe, Pa
Posted: 06-04-04 07:24am
Thanks everyone! It's so good to have
people with similar experiences.
I guess I do have a tendency to feel
strange after I stess out. I know that I
should take a few deep breaths and try not
to but that's like saying don't picture a
purple cow.
Hopefully, my doctor and I will be able to
come up with a solution.
Thanks again!
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Alice in Wonderland
New User, Becoming EHEALTHy
Joined: 07 Feb 2004 Posts: 46
Re: I Feel Lost Posted: 06-12-04 13:04pm
ericadd
wrote:
i'm just so frustrated. I
keep researching to find a case similar to
mine but i'm finding nothing . Esp since
I don't have epilepsy.
epilepsy and "seizure disorder" are used
interchangably. They are one in the
same.
erica 
