I'm 19 years old, last month (oct. 31st)
I had my first seizure. I went to the
hostipal and the neurologist told me that
all my tests came back normal and chances
are I won't experience another seizure.
A month later I was at the mall with my
sister and we had just sat down to get
something to eat and I went into another
grand mal seizure. I'm scared to go to
sleep, to be by myself basically to do
anything.
i know there is nothing to cure seizures
but is there anything I can do to put
myself and my family at ease? I don't
want to be afraid to live my life.
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Dear Carrie Posted: 12-02-04 03:43am
Hello.
Im just like you. Last yr on the
24th october '03 I had my first grand mal
seizure. Had all the tests done and they
were all normal. The dr told me that I
probably would not have another seizure 1
week later I had another. Like you I was
with my sister but I was at home. So went
to another neurologist for a second
opinion.
The second opinion was better he told me
that just because my test is all normal
doesnt mean that I am not epileptic now.
I know it sounds bad to be pleased, but I
was pleased to be told that I have
epilepsy because I was so scared not
knowing why I was having seizures.
I was told that I had all the signs of
temporal lobe epilepsy. Everyone is
different to how epilepsy affects them. I
live in australia I am female and I am 22
now. I have continued to had aggressive
seizures throught the last 12 months. The
longest that I have ever gone without a
seizure has been 9 days.
I am changing my medication finally.
Please!!! Dont be stuborn like me an just
take the awful side effects that come with
some meds. Tell the dr right away.
If the dr wont change your meds then find
another gp or neurologist.
I like you was really scared to leave the
house for a long time. I felt like a
burden on my family, and they never
understood what I was going through. I
guess they tried to keep me like a
prisoner.
What you can do so your family understands
is call the epilepsy association in your
area and get them to send you out
information on it. Then your family and
you can read all about it.
I know exactly how you feel when you fall
asleep you are scared. I am exactly the
same. You could get a night light. I
some times have the light on in my room
all night. Or I put the tv on timer. So
I am never in the dark.
It is so hard to deal with a new diagnosis
and it is frightening. Your neuro was
right that sometimes a person can have a
one time seizure and never have another.
Normal tests do not rule out epilepsy,
though....
I am so sorry that you had another. You
can have a life. You need to get
treatment, find a good neuro who listens
to you and find the right med to control
them.
We have had congressmen who have epilepsy,
einstein and edison are said to have had
seizures. Hannibal, van gogh, danny
glover, and many others....
Educate yourself about seizures and this
will help tremendously! Epilepsy.Com has
good basic info on types of seizures, so
does epilepsyfoundation.Org....
Hang in there. Talking to others who have
dealt with seizures also helps. You are
not alone!
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bbwcherokeerose
New User, Becoming EHEALTHy
Joined: 02 Dec 2004 Posts: 1 Location: Amite,La
I"m Also Scared For My Husband Posted: 12-02-04 23:09pm
I just found out today that my husband was
told that he also has seizures.The type he
has is grandmal,i"m so worried about
him,cause I also had a aunt to die 4 yrs
ago from the same thing,what should I
do.Please help me to understand and deal
with it.
Earlene
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carrie1219
New User, Becoming EHEALTHy
Joined: 01 Dec 2004 Posts: 4 Location: Michigan
Posted: 12-03-04 01:37am
Thank-you for all of your encouraging
replies, it makes things easier for me
knowing that i'm not alone and there is
someone else to talk to that knows what
i'm going through and feeling. Sometimes
when I try and talk to my family I feel
dumb because they have no idea what i'm
going through.
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Posted: 12-03-04 03:52am
Carrie here are some really good web
sites. So you can print off info and show
your parents. Might help them understand
and also give you some more insight.
Earlene I hope you are still around. I
just saw this post! I understand your
worry since you have had an epilepsy death
in the family. We have also. I have 2
teens with seizures and it is scary.
The best thing you can do is educate
yourself on seizures and sudep, sudden
unexplained or unexpected death due to
epilepsy. If you go to www.Epilepsy.Com and
look for those you can get good
information. There are steps you can take
to keep him safer, staying on the meds
exactly as the doctor prescribes, getting
enough sleep, never swimming alone,
getting a safe pillow (one that is
breathable, walmart has some for around
$20)
best wishes!! Knowledge is power
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leah831
New User, Becoming EHEALTHy
Joined: 22 Dec 2004 Posts: 3
Carrie, Be Strong! Posted: 02-05-05 22:18pm
My 17 year old daughter had her first
seizure 4 months ago. It was the
scariest thing either of us has been
through. She has had one more since
then--2 months ago. We tried one
medication and it did not work. She is
now on topamax. She has had success with
it for 2 months and hardly any side
effects (she has lost 12 pounds--she can't
lose anymore so she has become more health
conscious--a good thing)
you cannot give up your life. Tell your
friends what to do if you have a seizure
and anyone else you hang with. You can
then be more at ease. My daughter went
through a very bitter time. All I can
say is that god gave her this and now she
has to deal with this so her life is happy
and progressive. Good luck.
