Would like to chat with someone who has seizures.

[emmysmowmow]

I have been diagnosed with a seizure disorder and I would like to speak with someone who also has been diagnosed with the same disorder and compare some notes and possibly make a new friend!

[yojojo12]

`Hi I have Epilepsy, I have Tonic Clonic seizures usually 3 or 4 per week, I am bowel and bladder incontinent during all of my tonic clonic seizures and usually just bladder incontinent during absence seizures which can be as many as 80 per week, I take 225 Topiromate morning and Evening and 20 mg clobazam evening recently there has been some discussion regarding me starting Kepra and Surgery has been ruled out as a possibility. My type of Epilepsy is Generalized Epilepsy triggering from the Frontal Lobe, meaning it is related to my emotions most notably stress. Since I have Situational Incontinence anyway I wear nappies anyway 24/7 so the medical Incontinence from my seizures is no problem for me.

[dsholly]

Hi,
I am a 53 year old woman who has had epilepsy since age 10. Having seizures makes me feel very alone since people tend to shy away from me because of my seizures. I am looking for new friends and would love to chat.
Diane

[steel77]

well I'd suggest you post what type of seizures you have been diagnosed with because there are a LOT of different kinds. Mine for instant is very mild and noninvasive to my life... randomly (any where from 1 time in 6 mo to 7 in one day) I get a localized seizures in my right wrist/hand which lasts about 30 sec or so and then my whole arm goes numb and limp for about 15-20 minutes. this is all just from scar tissue left over from brain surgery. I had to have brain surgery because I had brain matter growing and putting too much pressure inside my head and I got a full body black out seizure from it (car wreck was thanks for that) I am currently on Kepra to suppress it but all it has done is cause me to get "snowy " vision and my head forcibly turns to the right slowly. most people dont even realize I have just had one that are around me. my neuro says that the reason this happens is because the Kepra is trying to suppress the seizure while brain tries to find a way around the suppression. now I'm on twice the dosage so we will see what happens.

I can still hear everything going on and comprehend but often for about 3-5 min after the seizure is over I sometimes have trouble saying or doing what I'm trying to

hope that helps