Hello there..

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Status
Not open for further replies.
Messages
3
Reaction score
0
Points
0
my name is Jen and i'm 24 years old. I had my first seizure ( (which was a grand mal) in Nov. 2001 in my sleep, and i had a smaller seizure which wasn't as bad a few hours later. I have been taking topamax 200mg one a day and was seizure free up until May of this year when i had a complex partial seizure i believe is what they told me i had. I didn't lose consciousness but my eyes rapidly went to the left and back to the center, they got stuck a few times too. My neck went to the left also, it was weird..and scary. I'm glad i found this forum, it's good to not feel alone :)
 
:hello: Jen!

Welcome to CWE! I promise we won't
:hj: this thread! :D

But sorry you had to experience that!
"E" can be a hellish nightmare! Over
here you can ask questions, rant, vent,
share, unleash, be silly, vent, and even
:hj: threads - :lol: which we try not to!

Nocturnals are no fun! Complex Partials
aren't even fun either! Like one poster
from another forum had put it best ...

EPILEPSY TAKES YOU FOR A VERY
STRANGE RIDE!


And he's right!

(((( hugs )))))
 
Hi Jen, welcome to the forum. :hello:

Make yourself comfortable here. Feel free to jump in to any conversation you like. :)
 
Hi Jen,
Welcome aboard. I'm a mom of a 19 yr old son who has primarily nocturnal seizures (grand Mal). He's been having them since age 12 1/2. He did go 2 1/2 yrs. without any seizures but then we moved and they immediatly came back. He's on Topamax, Lyrica, and Depakote ER. Look forward hearing from you.
Marian
 
Hi Jen

Welcome to the forum! My seizures come early in the morning during the R.E.M. sleep phase, usually after I've opened my eyes and then tried to go back to sleep. I sometimes have sets of grand mals... my record is 13 in 24 hours. The best help I can offer is to keep a journal of EVERYTHING that goes on in your life: What you eat, how much sleep you get, what time you get up, if you get exercise, what pills you take, how they affect you, how much stress you're under, whether or not you're on your period, (if you've had a baby recently, your hormones may be out of whack... which is the case with me), how you feel, what your #2 looked like (had to throw that in.. ha ha). Notice every time your hand even so much as shakes, or if your foot twitches, or if you blank out for even a moment. Write it all down. Anyway, after a while, you'll start to see patterns and be able to avoid (or at least reduce) the seizures. They stink!

Take care of yourself.
 
Hi Stacy,
I think by keeping a journal everyday is a smart idea. I've never really kept one for my son (he hasn't kept one either) except for the time and day he's had a seizure. The last seizure he had I did notice the afternoon before that he was very tired and had a nasty attitude. I recorded it to see if I see that pattern again. I will however have him/and myself keep a diary of what you suggested.
Thanks,
Marian
 
Hi Jen - Welcome. My daughter age 15 began having seizures a year ago.
I agree with Stacy that a calender journal is really important. The reason I use a calendar is that I can track her cycle and even warn the school (yes she loves the fact that the teachers "know"). Since you will be journaling yourself, it will be easier to keep track of diet, and sleep, how much water you drink a day, and other nuances.
Good luck, and know that this is a very safe place.
 
Status
Not open for further replies.
Back
Top Bottom