Hi Tim, welcome to our group.  I remember being 19 and coping with seizures.  I
have had many a seizure in the bathroom.  This group has all kinds of stories to
tell about the situations in which we have found ourselves after a seizure.  My
most memorable seizure in the bathroom was when I had the flu and went to throw
up in the toilet.  My body decided it was more exciting to have a seizure.  I
started to regain consciousness slowly, called for my husband and the poor thing
had to help me get my head out from between the toilet and the wall.  I didn't
end up in the hospital, but I was in bed for a few days.

I don't have much advise about your daughter's meds.  I know that every case
needs to be handled on an individual basis.  I would say that your daughter's
safety is most important and she needs to be aware of triggers.  For example, I
have been working really hard, so I pay attention to how I am feeling.  Some
days I can keep trucking (we are remodeling our kitchen) other days, I have to
rest.  Last Saturday was one of those days that I had to listen to my body.  My
husband did all the driving, we went to purchase a kitchen sink.  I couldn't
even stay in one place because the lighting was making a noise that I was afraid
would trigger a seizure.  When we went to a larger store I stayed right with my
husband and we received help so I didn't have to stay long, I stayed away from
noisy areas and crowds.  I made it, but it is frightening to realize that a
seizure could be triggered. I rested the rest of the day and was able to keep
painting the next day.

I've gone almost 10 years now without a tonic clonic seizure.

Take care,
Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org

No, Tim, every person's problem is a big one, we're all individuals with
different things to cope with.

Mary

** Hi. I didn't reply to this one earlier since I haven't used any of the
meds. you are concerned about.  Keep reading and someone might still show up
with a reply, or if you don't hear shortly, you can repost it.   Some people
only 'drop in'  once or twice a week.

  The Milligrams of Pill A, does not easily relate to xx Milligrams of Pill
B, so while one might look like it's a Larger dose than another one, it's
how a person absorbs it or reacts to it that determines the amount of each
pill a Doctor might suggest.  Some of us might use a 'cocktail' of 3-4 pills
to get control, others might be able to use just one type.  (I use 2 in
combination, and have since 1996, without any dose change.)
  1)  Julie put her Idaho Website at end of her reply to you.  Click on
that and bookmark it.  There are lots of Excellent topics you or your
Daughter might enjoy looking through.  There are *2 Excellent "First aid for
Seizures" charts that will help if you haven't seen that type of thing
before.  They help bring a seizure under control more comfortably that not
knowing how to help-- one is the Basic One, the second for First Aid in
Water.
  2) Has her Dr. ever suggested (or think she should wear) a Medic Alert
Bracelet or *Necklace?  There are 'regular ones', or Plain Silver or Gold
ones that look more like Jewellery without the Red Colouring that's on the
Basic type.   The 'Oval' shape is what a Dr. will look for if she were
having seizures or in 'Emerg'.    The Computer file (at Medic Alert) keeps
phone nos. of her Doctors (up to 3), plus up the 3 Family Contacts, and
lists any Other Medical conditions if any apply, PLUS what medications
(names only) she uses.  Those can be important so they don't give her
something that might conflict with a particular pill and lead to further
loss of seizure control.
  (They need her Blood Type for the computer file, so if she or Dr. don't
know it, they can  find the Type with same Needle, if they check her
Medication Blood levels.)
   These are excellent if she'll be travelling or away from 'home' soon,
since a Doctor can Call Medic Alert Collect from anywhere in the world, 24
hours a day.  Not bad Insurance for a one time cost of $40 to $100,
depending which Bracelet or Necklace type is chosen.  Bracelets (basic ones)
I've had, last 3-6 years each, before the 'safety clasps'
start to wear out.  I don't know how long the Silver Plated or Gold Plate
ones last (the clasps).  They could probably tell you at the 800 number, or
Locally if they're in your phone book.
  3) The U.S. Ep. Foundation of America has some glossary-type information,
plus a medications glossary that can be useful.   EFA is at http://efa.org 
. Often if you want more specific information on a particular medication,
the Pharmacist who fills the prescriptions might have a site for the Pill
Maker, although the things to watch for (usually alcohol with some of these
pills, Grapefruit Juice for example with Tegretol, etc.) should have come
with the *original prescription filling, via the Pharmacy.  /

*** G -  Some pills, anyway, if you move off them onto something else,
*Might be type which you can't or shouldn't go back to, since they won't
control szrs. a 2nd time around.  *I haven't used those so don't know if any
of those are that type. /

** None of our Problems or difficulties getting seizure control are 'small'.
Each of us is different in how we 'seize' or react to particular pills or
triggers that might aggravate seizure control.  Each, in our own 'sample',
are "100% of the condition" we're trying to help with.  Sometimes these
things are difficult to get control of, sometimes they're more easily
controlled.   I hope her's turn out to be the latter. (Did the Dr. ever
suggest if her seizure types could  be 'grown out of'' ?  I know some people
that might apply, but don't know which types or what percent of us, that
would be the case.)    G./

Hi Tim

I got weight gain on Depakote and Tegretol.  While on Topomax I
couldn't eat so I lost weight with that one, course I got depressed on
it as well so now I'm on 500mg of Lamictal plus 1.5mg of Rivotril.  It
has taken a while but my seizures are very well under control now.  I
get myoclonic seizures though, not absence.

As for using Depakote, I know it works for some people but I had to
have regular checks of my levels but that didn't stop it from going
toxic on my liver.

I was told that most seizures happen at night while you are sleeping
and they are likely to happen first thing in the am and when you are
trying to get to sleep at night.  In my case anyway.

Sleep has always been a problem for me so I try to go to bed as early
as I can coz I have to get up early to go to college.  (Just finished
my first semester and got my results - passed every class, B+ average,
really pleased.  Can't believe it at my old age - pushing 40).

I was diagnosed at 19 after having weird happenings all my life no one
could understand.

As for your problem, when it comes to epilepsy there are no small
ones.

Angeleyes

Hey man, having a 19 year old daughter is tough in the first place, having a
19 year old daughter that needs to take medicine with side effects that
results in weight gain is even more tough and dealing with the fact she is
having seizures while you know there are medications out there that help,
must be very hard. I would not say your problems is small.

I dealt with the same issue -as a teenager I want to stay up as well, go out
partying, drink booze, etc. It must be real hard man, dealing with all this.

I wish you and your daughter all the best.