Hello to Nora

[purseynursey]

I am posting on this forum for my daughter Nora. She is 13. She has had seizures since she was 7. She was started on Topamax from the beginning. We where told that her seizures where well controlled and we could not expect any better. We saw a new Neurologist today. Nora had 2 huge seizures yesterday. The new Dr started Keppra. I joined this forum to help myself find ideas on hope to cope with my anxiety. I know many of you probably have seizures often and handle it well. Nora has only had 3 major convulsing seizures and hundreds of smaller less violent ones so obviously I DO NOT handle it well. Hope I can get some good answers and idea

 

[DadofTwins]

Welcome to CWE

Welcome purseynursey!

When you were told "that her seizures where well controlled", what exactly did that mean? Did she have no seizures, less severe seizures, less frequent seizures? Please watch Nora on Keppra, my 16 year old daughter is on 1500 mg daily and is very moody and tired.

This is an amazing community and I'm sure you will quickly discover that you are among friends.:woot:

Wishing you well,
Tom

 

[Nakamova]

Hi purseynursey, welcome to CWE, and welcome to your daughter Nora as well!

Here's a good place to start at CWE: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ Getting informed is one of the best ways to cope with all the questions that come with epilepsy. Sharing your anxieties with others is a good strategy too. It IS normal to be anxious -- you are her mother after all -- but if you feel that your anxiety is interfering with your own life or with your daughter's then it doesn't hurt to seek outside help. As for tonic-clonic (grand mal) seizures, I can reassure you that the person experiencing them has no memory of the event, and no pain during them, due to the loss of consciousness. A lot of the things that are disturbing to witness -- such as the "scream" at the start of a seizure, or the blueness of the extremities, or labored breathing afterwards -- are not stressful for the person seizing and are "normal" events.

I hope you feel free to explore the forums here and post any and all questions -- CWE members are a great resource to exploit.

Best,
Nakamova

 

[purseynursey]

Watching Keppra

The "well controlled" was to my knowledge referring to frequency of the seizures. On the Topamax she averages about 1 small seizure a week. One partial complex seizure a week thar is. She has bilateral pachygyria so we have been told that this amount of seizures is to be expected and is "well controlled" . I believed that until we met her new Neurologist.

 

[valeriedl]

Hello to both of you.

I'm 35 and have had epilepsy for 9 years. When I was first diagnosed I was having about 4 seizures a week. My neurologist considers my seizures controlled now and I have about 4 or 5 a month all partial seizures. I may have one grand mal a year.

Being on the keppra could change her mood as said, it does with me. I get very angry very easy on it. If I get mad as someone for something, even if it's someone in a grocery store that I don't know, I'll just let loose on them sometimes.

My grandma started having seizures a little over a year ago and she was put on keppra. She's the most loving kind woman in the world but when she was on that she was bitching (sorry for the language) at my grandpap all the time. The dr put her on another med, I think it was topamax not positive, and she's back to her normal self again.

If the keppra gets too much for either one of you to handle see if she can get put on another med, I'm trying to.

I started dating my husband about 8 years ago so he was with me from almost the begining of all this and I know it's hard on him. I don't know how he deals with it sometimes. We'll be watching tv and I'll see that he's staring at me and ask him what he wants. He tells me that I just had a seizure. I usually don't know when I've had one and what I do during it. He'll tell me that I was drooling, trying to talk or just staring off into space and won't respond to anything.

Alot of times I don't know who he is when I start coming out of the seizure. I can't imagine what it's like to keep asking your wife what his name is and have me tell him I don't know or I'll just start saying any name I can think of and start spitting them out.

He works and I don't but he tries to call me every day to check and see how I'm doing. A day after a seizure he'll usually give me a call about 3 times to make sure I'm ok.

You're going to find some great info and help here. There are members with and without epilepsy that you can ask questions, and help with theirs.