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Just trying to understand what I am going through

Tue, 04/16/2019 - 22:36
Hello so I have been coming in this site for a while. I am a 28 year old female who just started having seizures a year ago. They started in my sleep I didn’t know I had it until I got up I was sore all over and I had wet myself. I slept that whole day. Then I had another one some weeks later I believe and my friend was with me again it was in my sleep she called the ambulance and we went to the hospital they told me it was probably a seizure give me a ct scan told me go see a neurologist I had no insurance at the time so I didn’t go I kept having seizures I finally went to see a neurologist they put me on keppra 1000mg twice a day it was way to strong for my body and didn’t stop my seizures. So I stopped taking my keppra and just didn’t take anything my seizures weren’t coming so I’m thw winter time they started to pick back up and I would go to the er after them and they would alway give me a ct scan tell me I was fine and send me home. I was still only having them in my sleep so in February of this year I had 7 seizures in a 5 day span and it was hard in my body also I started twitching in my sleep which was very new for me. My legs and arms would jump and I started to get these lightheaded dizzy spells. And a few weeks ago I couldn’t speak and I was just biting my lip then it stopped last year in total I had over 20 seizures and this year started off rough so far I had 26 seizures this year but I now have a neurologist I have been seeing and I have had a few eegs done I just did my first 4day video eeg a few ago I went and for my follow up today and my doctor told me I had frontal lobe epilepsy she showed me the waves in my eeg when I was there but now I have to up my Topamax and right now I take 25 mg every night I’m going to up it 25mg every two weeks until I get to 100mg and I am still taking keppra but only once a day at 1000mg but I am still having seizures. I just had one Two weeks ago and I am having tingling in my hands and feet from my Topamax already would I ask to switch my medicine? Has any one had problems on Topamax before with tingling at 25mg? I want to be able to understand my eeg and what frontal lobe epilepsy is ? Can anyone help me?

Comments

I’m really sorry for all you

Submitted by ZenMaster86 on Sat, 2019-04-20 - 17:40
I’m really sorry for all you have gone through the past year.  Definitely admire your strength for getting through all of that because it’s a lot to deal with.  I honestly don’t know a great deal about frontal lobe epilepsy (I have generalized), but you should look into the Vegas Nerve Stimulator (VNS) and also surgery is an option if that is something you would be up for.  I hope you’re doing well and stay strong.  

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