Joined: 13 Dec 2003 Posts: 200 Location: Australia
Why Does Epilepsy Get Worse After It Begins? Posted: 01-02-04 10:35am
Dear everyone I am 21 female from
australia
I have had epilepsy
now for 3 months, and at the beginning I
got no warnings that a seizure was going
to happen I would just fall into a grand
mal. 2 months later I started taking
tegratol and now I get weird feelings
throught the day like sinking and dejavu I
feel like when that happens I was supposed
to have a seizure but the meds kicked in
or something. Then sometimes I get the
worst headaches now and then my eyes get
weird squiggles and lines in them and all
I see is black and then my eyes flutter
and then I have alot of petit mal seizures
now on tegratol. I have recently realised
that I cant handle strobe lights thet spin
and change colour, or paramedics lights or
police lights. Or the sun when it
flickers through the trees. I feel
because it took so long for me to get on
meds that I got worse. Will I get worse
from this. My doctor says my med isnt
working and that I need to try something
new. Ive been researching and there arent
many meds that can help with
photosensitivity are there? Except
deptoke. I have only heard bad things
about that and I am scared to try it. On
tegratol I have only had the cold and flu
simptoms as a side affect. B4 taking the
meds when I was going to have a seizure
about 1 minute b4 it would happen my feet
would go tingly and I would feel strange
all over and I couldnt get to the ground
fast enough. I dont have as many grand
mals as b4. Now I am having perhaps 1 a
day and about 10 petit mal seizures.So if
anyone can help me out that would be
wonderful. Also now when I have a grand
mal I am very confused of where I am and I
sleep for a while after then I feel like a
weight has lifted off me and I feel
fantastic well only because I have no
weird feelings until the next time
anyway.
Well ty and take care everyone.
Oh if anyone wants to chat about stuff.
Add me I am on hotmail messanger mckay_2
1@hotmail.Com
bye
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phil dennison
Experienced User , Rather EHEALTHy
Joined: 14 Nov 2003 Posts: 71 Location: illinois
Posted: 01-06-04 04:24am
You have a part in your brain that is
dying. Medicine dose not help as the
brain slowly dies. If you want to live
,brain surgery is the answer. Just ask me
I had brain surgery.
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mbrumitgm
New User, Becoming EHEALTHy
Joined: 08 Jan 2004 Posts: 4
Posted: 01-08-04 13:42pm
Brain surgery is not always the answer.
However depakote to my child was a wonder
drug....No side effects no problems and no
seizures. The confusion and tiredness
after a seizure is called the post ictical
phase. Perfectly normal and perfectly
alright
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
3 Months Now Posted: 01-08-04 19:58pm
Ty for both inputs.
I have been spoken to about brain surgery.
I will not have brain surgery I am too
scared. When I was 8 yrs old I cracked my
head open they said that is what is
causing my epi but they dont really know.
After a episode I cant talk properly I
talk really slow and deep like a robot and
I cant walk my feet are like jelly. So
wont be having brain surgery. I am taking
tegretol at the moment and its slowly
becoming active for me. I have just had
my dosage upped and I will try any meds b4
going to drastic measures.
Ty both
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phil dennison
Experienced User , Rather EHEALTHy
Joined: 14 Nov 2003 Posts: 71 Location: illinois
Mbrumitgm Posted: 01-08-04 19:59pm
Glad you do not take care of me.
Wonder drugs do not work.
Time will tell, I am 36
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Please Posted: 01-08-04 20:15pm
I am only 21 I have only had this 3
months.
I want to try meds first but I guess b/s
is a big thing for me to think about. My
eeg readings are normal though phil. So
wouldnt it be hard to pin point the area.
They say its coming from my right temporal
lobe
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Visonti
New User, Becoming EHEALTHy
Joined: 05 Jan 2004 Posts: 3 Location: Florida
Eliminate the Trigger Posted: 01-08-04 20:27pm
Make a fashion statement, this is easier
when you're a female, get sun glasses that
blockout enough light/glare that your
trigger is eliminated. If you already
wear eyeglasses talk to your optometrist
like I did there are lenses that remove
the glare entirely. Or get sunglasses
that fit over the current prescreption
pair (fit over solar shields) they also
come with lenses that remove all glare.
No trigger, less seizures, more fun. You
can even go clubbing and claim they're all
the rage (i'm 26) if you get pretty
colors. I have sunglasses for every
occassion and for tv watching/ movie
going. I also have hats (floppy,
baseball, anything with a rim and style)
thankfully I inherited mum's cheekbones.
Think of it as an excuse to accessorise
and don't forget to where a bracelet
i.D.'ing you as someone with epilepsy just
in case.
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phil dennison
Experienced User , Rather EHEALTHy
Joined: 14 Nov 2003 Posts: 71 Location: illinois
Posted: 01-08-04 20:53pm
If your doctor does not believe in brain
surgery run run run.
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Phil Posted: 01-09-04 06:25am
Please phil,
I have read some of your
comments here. Why do you have to be so
rude to ppl. As your opinion is the only
on that counts? Ppl come here for
support. You telling them their brain is
dying is very scarey. As I am informed
you do not have epilepsy anymore well
thats wonderful but others havent been
fortunate like you even with the brain
surgery. So cant you please put thought
and support into your answers ty
otherwise I dont want your input its
scaring me what I have read from your
posts.
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phil dennison
Experienced User , Rather EHEALTHy
Joined: 14 Nov 2003 Posts: 71 Location: illinois
Sami Posted: 01-22-04 21:23pm
Sami i'm sorry this is phil. Your right
no one wants a simple answer. They would
rather live with epilepsy. Even the
doctors are happy. I got lucky went to
the hospital just for medicine. The next
thing I know I met a new doctor who said
", how about brain surgey." I said," what
this is crazy!" but, I did it anyway. The
doctor made it sound so easy just pull the
bad part of the brain out, and be epilepsy
free. My doctor also said," the majority
of these doctors disagree with surgery,
just like you and everyone else." so have
a miserable life. I relised i'm keeping
this a secret, i'll never be on this site
again.
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Midnight
New User, Becoming EHEALTHy
Joined: 28 Jan 2004 Posts: 33
Re: Sami Posted: 01-29-04 23:39pm
phil dennison
wrote:
sami i'm sorry this is phil.
Your right no one wants a simple answer.
They would rather live with epilepsy.
Even the doctors are happy. I got lucky
went to the hospital just for medicine.
The next thing I know I met a new doctor
who said ", how about brain surgey." I
said," what this is crazy!" but, I did it
anyway. The doctor made it sound so easy
just pull the bad part of the brain out,
and be epilepsy free. My doctor also
said," the majority of these doctors
disagree with surgery, just like you and
everyone else." so have a miserable life.
I relised i'm keeping this a secret, i'll
never be on this site
again.
phil, it is not what you said...It is how
you said it. Heartless, rude and
inconsiderate.
I understand your confidence in having had
a fine surgery well done and that you feel
great about having made that decision.
However, nobody wants to have another
person say in so many words that you are
stupid if you don't do it. Or do it my
way. A person isn't going to even offer
that thought if a doctor does not suggest
it. I would not just walk up to my
doctor and say..."hey doc, I hear brain
surgery is great why don't you set me up."
you need to remember what we are all going
through and not judge. You came on here
to let people know that people do turn out
alright having brain surgery, right?
Well educate them in a nice way, don't be
rude about it. And do not get upset when
people are apprehensive. People have
there own reasons as to why they would not
or could not have surgery. I say if you
really want to help that you should just
educate and open yourself up to answer
questions for the ppl that are
inquiring.
I am very new to this all and just joined
this bb. I am not saying I know
everything, I just know how people feel.
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Sri
New User, Becoming EHEALTHy
Joined: 30 Jan 2004 Posts: 1 Location: US
Posted: 01-30-04 13:36pm
Just joined this nice forum.Good to see so
many wonderful helpful people out there.
I was diagnosed with petit mal when I was
18 and put on heavy dosage of valproic
acid. I didnt take my medications proper
and it worsened into grand mal.
Somehow when I don't thave any seizures
for an year or more,it lulls me into a
wrong sense of confidence. No one in my
family has it.When I was young(about 4), I
had severe brain fever.The docs say 1% of
such cases risk developing into ep. When
they are 18-20 ...And I guess I am that
unlucky 1%...
Notwithstanding all this, I have managed
to get a decent education with a master's
degree and am on the lookout for a
job...!!
