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Old 01-06-2005, 09:33 AM   #1
Junior Member
Join Date: Jan 2005
Posts: 13
Tulac HB User
Hi all.

Im 37yrs old and ive been epileptic since i was 16 (so long ago).( i had convulsions when i was younger)
You would think that after all this time i would be ok ...........well no the past year has been a nightmare.

i take 1200mg tegrol a day thats 800 in the morning and 600 at night. also for 1 week of the month(girlie time)i also take Frisium.

I cannot remember the amount of grand mals i have had.
now i get others as well.

i dont know what to think anymore..........................

im so fed up with it..
im fed up takin pills
im fed up havin fits
and my head gets so spacey sometimes
and im really fed up feeling like im a burdan on my family

i have just had 7 years free from problems and then BANG its back with a vengance

r u the same as me have you had a long break as well

(can i also say that my partner over the years has been with me during many fits and he has been so caring and understanding .he has never said anything about any mess that i make. he stay with me all the time talking and just helping.
but i can see what it does to him.
i stop breathing and for him thats timeless im bright blue and he feels helpless and yet he will stay calm for me .
what is worse being epileptic or helping one because we share this problem)

Last edited by Tulac; 01-07-2005 at 03:15 PM.

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Old 01-06-2005, 01:29 PM   #2
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Join Date: Dec 2002
Location: Dayville, Ct. USA
Posts: 765
kayakmom HB User
Re: hi im new

I am so sorry to hear that it started all over again after such a long break. it is good that your partner is so good and is there for you!

I have read others who have this happen after years of being seizure free. Stinks....
mom of 2 teens who have battled seiuzres.

Old 01-06-2005, 03:19 PM   #3
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Join Date: Jan 2005
Posts: 13
Tulac HB User
Re: hi im new

hi kayamom


sometimes i feel like im the only one but i guess we all do now and again.nice to talk to people who understand


Old 01-07-2005, 01:39 PM   #4
Join Date: Jan 2005
Posts: 99
EthanF HB User
Re: hi im new

Hi Tulac

I am 27. I had my first seizure when I was less than a year old on my mom's first mothers day which was also her birthday. I have had one or two times where I have spent long time periods without a seizure. It makes you feel wonderful. You can drive, you feel more relaxed, overall it makes you feel like you are in control of your own life. Then when a seizure comes it makes you feel like all that is taken away from you. To me having my lisence taken away cause of a seizure feels like Im being punished even though I know I didn't do anything wrong.

We are epileptic. We know in our heart that it is a disease that there is no cure for. But if we stick together until that hopeful day comes when there is a cure I am sure we will be able to get through it.

About a week ago I spilled my frustration out in something I typed on this bulletin board, read it.

I know it sounds very depressing but I always know there is a light at the end of the tunnel and the key to living with epilepsy is finding new ways to control it and prevent it from controlling us

Best Wishes

Old 01-07-2005, 02:55 PM   #5
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Join Date: Jan 2005
Posts: 13
Tulac HB User
Re: hi im new

Hi Ethan

You are right in what you say and i really do understand you.
we are epileptics and thats not going to change but if only other people were more understanding that would help..........
to most people we have grand mal fits and thats it...... they dont understand the day to day feelings that we have.........i have days where i cant even think straight anymore... im getting really forgetful as well ...depression sets in alot and mood swings.
i have never learned to drive as i was scared of what could the uk you have to go 1year with out a fit as well..
im the mother of 4 children and im scared i will fit in front of them and scare them...although they know what to do and how to help me.
in a way i think im letting the epilepsy dominate my life instead of taking charge of it......
i need to put it in the back of my mind and let that just be a small part of my life instead of the b all and end all.....but how do i do it..........

its nice to talk to someone who understand that helps

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