i know what you mean. i am a 34 year ol married mom of 3 teens and i have had
epilepsy for 27 years. at one time i was taking 12 pills per day and i felt
my whole life evolved around seizures. i would have "grandma" seizure-like
you were describing. if i was standing, i would fall on the floor, jerk
uncontrollably and bite my lip, tongue and jaws. it was awful and i would
sleep for several hours afterwards but when i would wake, i was so weak and
tired that i could barely move. i wondered if i'd ever be able to get a job.
i mean after i had kids, i would be holding them and go into a seizure and
thank god they were never hurt during the process. most of the time i could
tell that i was ready to have a seizure but that was once the twitching
started and there was just a few seconds to yell for help before i'd have the
seizure. my high school years were awful, but as i got older i started
letting fear of what others thought control me and i hardly went anywhere. i
lost out on a lot of things until i was about 26 and i decided i was going to
try to work. i wanted freedom.i went to work at mcdonalds and i was sent home
several times for seizure activity and lost most needed hours of pay, but i
contacted my doctor and he changed my meds to phenobarbital and i was only
taking 4 per day. it was such a change from 12 per day. the first time that i
had a seizure at work and had to go home, i was so worried about returning. i
thought i'd be made fun of, but surprisingly, the only thing that was said to
me was "we were so worried about you" . thats when i knew it would be okay. i
kept working then eventually went back to school and now i work in medical
records and train new nurse aides at a nursing home. i just decided that i
would control my future, not epilepsy. don't get disheartened and don't be
ashamed of your illness. you would be surprised at how considerate people are.
get out, do things that you want to do and live your life to the fullest. but
always keep your appointments with your doctor. talk to him about the options
that are available to you. you are who you make yourself and if you let
epilepsy control you and your daily life then you will be unhappy.if you get
a job and would have a seizure, don't quit and don't be ashamed, just pick
yourself up, brush yourself off and move on. everyday is a new day and life
is a journey. it will only take you where you will let it. take care of
yourself and know that your future will get brighter. i have now been seizure
free for 3 years. i just have "staring" seizures or "spaced out", where my
eyes will flutter for a few seconds then i am fine. i live life to its
fullest because i now have 3 kids and i want to spend every moment i can with
them.love yourself and take care. god bless. write me at emalone10@yahoo.com
and we can keep in touch. keep your head high because you are just as good as
the next person (if not better). ellen

  I don't see many replies to this, so will try one.  Did your Dr.
ever suggest if it would be worth getting a Medic Alert Bracelet?  They
need your bloodtype for files, and medications you use (not doses as
those change), plus they keep up to 3 Emerg. contacts (Doctors), and
Family contacts, so all a hospital would have to do is call the number
Collect from wherever you are, and get your file.   That way they
wouldn't accidentally give you something that might conflict with pills
you now use.
  If you don't have full control you could ask your Dr. about whether
you should consider changing to another med. or possibly add a 2nd pill
(usually reducing the first) to try for full control.    (I was told to
hope for 2-3 szrs. per month in 1993-- last 2 I had were Dec.97 and
June 1998.  I still use the medications that control my type.)
  Depending where you live (if you tell us, someone might be able to
comment wrt. State, Province, Country?)  there might be programs to
help pay for pills if newer ones might be prescribed.   Many Drs. don't
like using Generics even though they're cheaper if available, as the
fillers used might not give as reliable control as the Original Script
Med.
 (My Dr. wrote "no substitutions" on mine so my Insurer will continue
to pay the percent part they cover for the insurance I have.)
 Another place who might know if there are any programs that help with
Med. Costs is if you're near a Local Chapter of an Epilepsy
Association. Most times you don't have to be a member to get that kind
of information, if there's a chapter listed in your Phone Book.   G./

(The group got temporarily corrupted by a 'kid'  before Christmas who
disrupted some posts for a while, so the 8-10+ messages per day have
dropped about then to current inactivity.  Others might have found
other groups to read with related topics.   I only read this one wrt.
epilepsy, as sometimes new people might be using Tegretol or Frisium
and I can give them experiences wrt. those, Complex Partial seizures
and side effects to watch for. Since your pills were different to ones
I've used, I didn't reply sooner.   But I thought if I replied to *this
thread, if there is someone around who have Tonic Clonic? seizures and
use Depakote, they might have comments about what they added with
their's, or if they used just that for the types of seizures they were
being treated for.)    G./

    I had been on Depakote from  May 2002 until August of 2006. I
would take 500m.g. four times a day until I reached a theraputic level.
Once I reached a theraputic level the doctor had me go to two 500m.g.
pills at night and two 500m.g. in the morning for a total of 1000m.g. a
day. That dose kept my levels theraputic = between (50 & 100) all the
time. Once I tried to go down to 1750m.g. a day instead. That simple
drop of 250m.g. a day started seizure activity much like what you've
described below and I had to go back up to 2000m.g. a day and my
strange jerks went away.  I'm over six foot tall and over 200lbs. so it
has always taken a higher dose to control my seizure activity. My
jerking was a sign of low level seizure activity and like an aura it
was a warning sign for me that something was wrong.

BTW: I was on Depakote ER which is the extended release tablet and it
gave me great coverage so that if I missed a dose or was late in taking
it everything would be OK. Jim

My seizures are a bit strange. I kind of know when I'm going to have
one

From:  Random - view profile
Date:  Thurs, Jan 4 2007 7:46 pm
Email:   Random <nos...@nospam.com>
Groups:   alt.support.epilepsy
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I feel that my family doesn't really understand.
How could they, really? ????
I truly do understand your thoughts, and views here.  Both my birth
family , and my own family , cant possibly fathom how deep or hard this
struggle goes.  They see what happens to me but dont really comprehend
how bad it is for me.
    I've had  some major issues growing up with my health , because of
stupid drs and unseen events, that have occurred in my past.  However I
try to deal with this the best I can. Knowing that the reason I have
this is a dr's mistake. I've realized things could have turned out a
whole lot worse than this

You can't explain a state of being to someone who's never experienced
it
for themselves.      !!!!!!!!!!!!
All I can do here is try to explain what it feels like and what happens
to me.  The worst part about thisinfliction, is the things they say I
should be feeling or not feeling during my big or small seizures, isnt
how it happens with me.    Drs and others think I make it up.    Things
like I know what is going on around in my (gms)  tc seizures , I can
hear and see what others say and do while I'm down.  as well as I'm not
wiped out like they believe I should be, but feel re-energized instead.
     At this stage of my life my worst  days I'm havey , or groggy in
the morning. from what I call my internal seizures, and it leaves me
looking and feeling like I'm drunk for a few hours, or causes migraines
to the point of nausea.   So I often have to sit down and do nothing
for a while, or rest in the dark if possible.    Also , I have to stay
out of extremem heat, or extreme cold or my seizures can get triggered
( I have mostly cps now)    Then around my time of the month, the
homrmone swings can throw me in a loop with them.  I'll have at least 2
- 5 of them  during that time.

Anyway...I've had epilepsy for probably around 15 years. During most
of
that time, my seizures were perfectly controlled by Depakote. I didn't
really spend much time dwelling upon it during that time. I just
thanked
my lucky stars that mine was under control. :::::::::::

I've had epilepsy for my entire life ( 42 years now)  caused by an
accident at birth.  The dr dropped me as I came out and broke a hole in
my skull lodging the bone in my temporal lobe on my left side.   I know
God was there, as the fall could of killed me, or broken my neck. As
well as caused me to be blind or deaf, as the senses are controlled in
that area.
   I did have a brain tumor grow around that bone fragment to pull it
out of my brain.   I had it removed 2 weeks after I turned 18 years
old.   It was both benign and malignant , the ball / core of it was
benign, and the philanges or fingers growing from it were malignant.
However it was growing in a liquid sack so it was contained to just
that area.       I've tried every medications on the market there  is
out there.  I;ve become toxic on depakote, allergic to Dilantin, and
have increased seizures from Klonopin , as well as neurontin , and
lyrica caused  increased problems.

My seizures are a bit strange. I kind of know when I'm going to have
one
because I have these strange jerks. Hard to describe. It's kind of like

when you're watching a DVD that has scratches and it skips. I sort of
feel my limbs jerk and I get this terrible, sinking feeling (as though
I'm falling from a great height) in the pit of my stomach. This is
followed by an intense feeling of paranoia. Can't really describe it.
Just deep fear. Fear of everything. Fear and shame. Even if I'm alone,
I
feel deep shame. Shame of being alive, even.  :::::::::::::

I quite understand what you go through here.  As for most of my
seizures I have auras, or sensations  before the actual seizure itself.
 I am thankful however that I never got major injuries  from my
seizures except for  biting my tongue or lips.  I did though seperate
my collar bone after sliding on sand  on the sidewalk at work.  Which
caused a seizure afterwards.  (It's still broken , it happened 7 years
a go on my wedding anniversary.)  It always bugs me that people
automatically assume that if I got injured doing something , it was
because I had a seizure. That injuries to me only got caused by a
seizure. FALSE!!  As the trauma of the injury or pain itself can
triggers my seizures toi happen.
  I dont so much fear them , or feel ashamed about them , as I feel
frustrated sometimes, because I cant get control of them, and because
people consider me dangerous, or a liability, and someone they dont
want to have me  in their employment.  Even though they've always told
me I do a GREAT job and have caught on quickly, and am nice to work
around. They always fire me the next day or sometime during that week.
 So I'm always very wary if people that praise me for the job I do ,
because the axe will come next.

.
I don't know if I should try and find a better med or not. What if I
lose what little control I have left over my seizures?
Sometimes I dont feel like there is any medication ou there that can
help to control my seizures, for if they help in someways it's only
short periods, then the side effects can be worse than the actual
seizure.   My problem with some dr's is I cant get them to see that
body types, sizes, and hormones can throw ther meds off balance .As
well as no one can stay on the same level forever, as our body bcomes
accutomed to that level or toxic  on it and needs to be changed every
so often. I've only ever had one dr that realized that the meds needed
to be changed once in a while  in order to gain or keep control of the
health.
I've come to realize that for all the money dr's  spent going to
college and the fancy degree on their wall, doesnt mean they know
anything at all. Expecially if they insist on remaining deaf to what
the patients say. AS WE ARE ALL DIFFERENT>

Does this typically happen? Does epilepsy typically get worse as a
person ages?     Hormones, and some changes in the body can make things
better or worse with age.   I know my puberty was a living H*** for me
so they said I can expect it to be that way for the change menopause
will cause on my body.   I know  my pregnancies were nightmares for me,
( but I'd do it again)  As my first one  was the hardest, as I'd never
had  things changes like that before  I had 300+ gms (tc) always
landing on my butt.  and with my second one.  I had 190+  gms (tc)
again always landing on my butt. Thankfully it was padded well, lol.
God kept both my babies protected  from harm of my drugs or injuries.
As they both came out perfectly heal;thy, and clear headed, They both
are in honors or advanced classes in High school and college now.
For every storm I went through in my life  I've had some beautiful
treasures in the aftermath.
      I ran a supoort group for a while and found my case isnt unusual
for people with epielpsy.    I know that one question I could never
have the drs look me in the face , and give me an honest or straight
answer was . Why cant people with seizures have orgasms. Why does that
sensation trigger seizures instead.  they were stumped.   ( I used to
love to stump or trip up drs in their answers)

Anyway....my epilepsy has always embarrassed me.
I don't know why.   I know it shouldn't but I can't help it. I don't
want people to know I have
it. I don't want people to see me having a seizure.:::     Dont let it
control you , dont cave into it. Instead find ways to learn more about
it and to share with others      I remember when I allowed a few close
friends in on it, I was fine and a little more at ease.  I didnt feel
so upset about it if at least one person knew whereever I went, and I
usually never went anywhere alone.   I would tell them how they could
insure I wouldnt be hurt by  doing a few things for me. like if I was
still standing to ease me down . or point me in a safe direction. (
that wasnt often)  Alos because I never lost me sense in my really
strong or bad ones . Just keep talking to me, tell my about my kids or
anything that was around me It would help bring me out easier. As well
as a really cold cloth, or soda can to my skin.  When they did these
things for me, Mine didnt last as long.  As I've had  gms that last 15
- 30 mins before or have gone into status , before sometimes even when
I was alone.

. I don't want to talk to people about it.  It'd help you and those
around to accept it and be at ease if you did though.  Insure them you
are ok, and it's ONLY temporary when they do happen to you. It doesnt
change who you are on the inside.  I never consider this a disability
though everyone thinks it is. I just consider it a limitation. Remember
and realize EVERYONE had a limitation even if they don't realize it or
admit it to you.    Learn things to do like listening to relaxing
music, or talk to god etc, If you begin to feel the aura or sensations
coming on. It can help some or us
I know I should be comfortable with it and accept it
as a part of who I am but I just can't. How do you defeat that part of
you which doesn't listen to reason and doesn't care about logic?  Find
things you can do well, and fine tune those and find new ways to
improve them or focus in one other strengths. I'm sure you have some.
Like what I do is . I draw cartoon characters perfectly any of them
out there. As well as nature scenes. I also write a lot of poetry.
cook or bake things for others and my own family.  I'll listen to
christain or soothing music The main thing i have to remember is to
NEVER allow my self to get totally 100% relaxed as it triggers seizures
in me. I've stayed a little tense my whole life, So now my body doesnt
know how to handle total relaxation. I also know I can't bathe in the
mornings if it's really cold out because the quick change in body
temperature will cause one as well.    Look at the rest of who you are
and dont focus on what you are.  Remember you have peilepsy it DOESNT
have you.

It's getting to the point to where I don't want to have contact with
people because ::::::       This isnt a good idea as you cant begin to
swell on it all the time
or you can increase the problem.  It;s good to be around others and
have other things to focus on  The seizures cant define who you are
unless you allow it to.

I'm afraid I'll have a seizure.;;;;     Everyone  has something they
try to hide.  this isnt just something you do alone.

Of course, it sure doesn't help that it has a profound effect on people
who see it. It can be scary ::::::    But it can teach them about
others, as well as open new doors for you and them.  If you share and
they listen and turn their fear of it into concern ans willingness to
help .     Often people realize this could happen to them or their
loved ones . A head injury is the main cause for this to happen in
anyone, as a brain tumor or other trauma.

if you've never seen it before. It bothers me that if I'm taking a
shower
or something and I drop the shampoo, everybody comes running, ::::::
Yep my family is the same. but my faimly has actually witnessed the
danger of mine in the showers . or baths. one ex. of that is when my
duaghter wa only 2 years old she was sitting in the bathroon with me
while I was bathing , getting ready to go somewhere.  God used her
then. As I went under the water in a gms  she ran over yelling and
grabbed me by my hair and pulled my head out up the water amzingly she
held on long enough to keep me breathin . after that I was never
allowed to be alone as long as I was having those.  Often wants to give
you cetain people in your life for certain  reasons.  Don't close
yourself off or hold onto those fears, as you have the chance to gain
great miracles, or lose a special understand friend.
.
It bothers me that I have to live my life around taking medication
that I can't even
really afford. :::    There are programs for people like us, that are
taking expensive drugs.  I was on them for a while. through the
maufacturers  and labs that make them. ASK YOUR DR.  As I was getting
my meds for free because my income , even with my husbands is below the
incomes  they had set  .  As I was taking Lamciatl, and Carbatrol at
the time and my costs were way beyond what I could pay, as it's was
costing me over $800 a month for all of them, and they knew I wouldnt
take them because I didnt have the money
.
It bothers me that I always have to worry and wonder when
the next one will happen and will I fall through a window, break my
nose
or worse? !!!!!!!! I used to be this way, but found it was worse to
worry about it than to try function the best I could daily::::::
 It could literally be anytime and when I go out, I drop like a stone.
  I carry cold drinks with me, and a cap to keep the sun out of my
face. As I walk everywhere , If I cant get rides. Often I dont ask for
them from people So I try to go it alone.           Almost no warning,
How am I ever supposed to hold any kind of
meaningful employment?   Go through places that help people with
disabilities to get work, like wo tech or goodwill and so on.:::::

 Virtually anything presents danger to someone who might just drop at
any given moment. ::::                Totally understood, I can
sypmathize this reason and feeling with you.  Again find new focusses ,
dont let it control you.
If you want to you can email me at cuttscares@hotmail.com   Or
poetbjc64@yahoo.com
I also have the ims and am in other groups on windows live,
greatestjournal, and myspace . so I easy to reach and can give you the
information to reach me there.
YOU'RE NOT ALONE !!!!   I'm here and so is God.

Tuniabjc-------Bonnie

Hello Random, a lot of the newsgroup have also stated that they have
similar kinds of signs (aura's) before each seizure, so don't worry you're
not alone. There are other people who have seizures like myself though,
without any kind of aura at all - we just wake up out of a seizure and are
told.

My name's Sofie, and I've been bumping into lamposts and waking up since
the age of 9, but my seizures evolved into TC's at 11 and then into
multiple TC's and many others since, but my senses and co-ordination
always seem to go haywire which is the worst bit. I'm 41 now, but I've
never actually been on Depakote (I'm on Tegretol, Keppra, and Zonisamide),
so maybe our neuro's are prescribing our meds specifically for our type of
seizures.

As for whether we can talk to our families about our epilepsy, sometimes I
think my hubby understands my seizures better than I do - he understands
my headaches, excessive sweating, bathes me, catches me if I fall, puts me
to bed when I awake from a TC, tries to get me away if I've absent
mindedly stolen something during a CP - in fact he's my little nurse, and
I don't know what I'd do without him!

BTW - I know this is off-topic, but I don't know many girls called Random,
and the only other one I know is on my Terry Pratchett newsgroup - it
wouldn't be you would it?

Sofie