Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

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Brain & Nervous System
/ Epilepsy & Seizures Support Group

Hi I'm new to this group!

art4life19
art4life19

Hi everyone I have epilepsy and I take Topamax. It works well for me. I haven't had any seizures since I started taking Topamax. I have been taking it for years now. It also helps with my migraines and Psych health. I take 100mg of Topamax twice a day. i don't have any side effects from taking Topamax. I have taken other seizure medications in the past but this one works best for me. My mother also has epilepsy but both of us are more prone to having seizures in our sleep. My mom didn't know she was having seizures until I saw her have a seizure in her sleep and told her about it and told her nuerologist. She takes Keppra for seizures and it works for her. I forget how many mg of it she takes but she takes it twice a day also. There were times that I use to wake up on the floor after having a seizure and didn't remember anything or know why I was on the floor. It was a bit scary and I did see the doctor about it. My mom witnessed me having a seizure and foaming at the mouth one day when I was in bed.  I have grand mal seizures but when they happen i have no idea they are happening just feel tired and wake up later with memory loss. Do you know when you are going to have a seizure? What is life like for you having a seizure disorder. My cousin is having terrible seizures and none of the medications she has tried seem to be working. It is not safe for her to drive anymore. My mother and I don't drive because of seizures.

TrinityMF
TrinityMF
Seizures are so... horrifying. It takes a lot away from your life. I've been through so much, but epilepsy is long-term. I can't take a shower without thinking of the seizure I had at Band Camp when I was taking a shower. How the last time I had a sleepover was when I had a seizure at my best friend's house. How I would always twitch when we would drive past the lights showing from the trees reflecting onto me. How I would twitch so hard I would break mugs of coffee. How each time I would have a grand maul seizure, I believed I was going to die. How I can't watch certain movies, play VR, or even do swimming units in gym. How my own mom saw it and was heartbroken during and even after the seizure because she thought that I was also dying. Epilepsy isn't something that you can understand if you don't have it. They think a seizure is just flopping around madly without control over it. It's true, but it's so much deeper than that. I would get to the details, but it's a little terrifying and sad and a little traumatic. I've had 6-8 seizures without knowing I had them. I just thought that it was sleep paralysis. I'm a little afraid to drive. I'm not at the point of driving yet (I'm 14) but I think that it can be something I can do. I mean, I have the meds. I'm not going to let that stop me from living my life. I'm sorry you have epilepsy too. I feel your pain.
TrinityMF
TrinityMF
I am actually making 10 posters for next month (November, obviously) for Epilepsy Awareness Month to hang around my high school. A lot of people aren't really as aware of it as other things, so I thought that I would spread that it really matters.
TeamDaryl
TeamDaryl
Hey art4life19... I get V.A. benefits from having served 5 years in the Marines from 1983-88, but my seizures began in May of 1993 or so? I've had the eegs done, the mris, etc...I've seen several Neurologists and Doctors and all they want to do is throw more medicine at me!! I've had the grand mal seizures, then it became complex partial now which last about maybe 3-5 seconds or even less! Sometimes 10 seconds at most, I get confused and don't remember them but it can be really scary and terrifying, but I have to trust God that He has a plan for me having these! Somehow I can be a blessing to someone else and I have to trust that, but it can be very lonely at times, too, and the last Doctors visit I had I told him I want to be taken off one med they increased recently because it's been a roller coaster ride ever since then and mostly downhill...it's as if he didn't hear me at all!! He wants to decrease one med and try a new one, but keep me on the new one?? How does that work?? I won't do it until he listens to what I have to say. I've heard Topamax mentioned but they've never tried it on me yet, I'd really prefer to go back on Dilantin as I know what to expect from it. I don't know, anybody have any thoughts??
UniqueJewel0000
UniqueJewel0000
Hello Everyone. I had my 1st seizure when I was born. From then till I was in my teen's I had grandmal and petimal seizures. Once I hit my 20's I would have petimal seizures but I wouldn't have one everyday. When I was in my 30's I had complex partial seizures and I would have one at least once a year. I'm 40 now and I have been seizure free for 3 years now but I can't drive to my Epilepsy and the kind of seizures I have.

It is hard to deal everyday. Sometimes it's even harder when you try to talk to someone how you are feeling and some people pay no attention because they don't know and understand what it's like to be and Epileptic and doesn't want to deal with your emotions so the only way I get through the day everyday is by prayer, my crafts, music, and watching variety of movies.
erickalee123
erickalee123
My mind and body usually lets me know when enough is enough and to take it easy. If I continue walking knowing that I’m gonna get dizzy then my body gets worse so I have to act on it ASAP. I take Keppra twice a day. 500 milligrams each.
art4life19
art4life19
Hi Sorry I haven't replied in a while. I manage to pop in and out of the site from time to time. I hope everyone is doing alright. I have been reading the posts. My mom takes Keppra . Does anyone here get weird sense of smell sometimes almost like you are hallucinating something that you smell? I heard that when you have seizures that can happen some people smell like burning rubber or something odd before seizure activity occurs or after. Friday I was at the doctor's office and I swear I smelled pineapple all of a sudden and then it was gone and then when I went home I smelled orange Jello all of a sudden and then it was gone. I don't know if I was getting ready to have a seizure in my sleep but I did feel very tired so I took a nap. When I woke up I didn't have any more smell hallucinations.
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