Hi Folks,
As many of you know I've had 2 brain surgeries to help reduce my absence and complex partial sz. I was doing really good but now I've started to have tonic clonic sz. where I will fall and hit the floor and begin shaking. My epi confimed this with me. What's hard is that I'm drug resistant, I've been on 13 different AED's and not a single one has controled my sz. I've also tried the ketogenic diet. Since the tonic clonic sz. have begun my parents and my brother will have nothing to do with me anymore and my employers (public school vice principal) told me that she was going to keep her eye on me since I had 3 absence sz. in one day. I don't know where to go from here. I wanted to have gamma knife surgery done but my Dr. told me I would have to have it done 20 times or more and my brain would be fried. I'm sorry to dump all my problems on all of you but I feel that you would understand. What really scares me is that I have an Uncle and a cousin who both had tonic clonic sz. and they passed away from the sz. Thanks for your time and please forgive me. Take care and May God Bless You!

Sue

Forgive you? Oh Sue, how I wish I could do something BIG, something constructive, something healing for you. I wish you could find someone healing for you.

Healing .... Is that something? Can you try another epilepsy center, a neuro surgeon at a university hospital? Keep trying -- don't stop.

A painful family ~sigh~ Sue - I know that, I understand that. In the last two days I was slapped down yet again.

Oh I wish I had something that would HELP. I will be praying for you.
We'll ask for God's help and comfort.

Sue, sweetie. We wouldn't need to forgive you as you have no reason what-so-ever to apologize. We should thank you for sharing. You're not dumping anything on us, you're talking to your friends - us. We're as much here for you (in both good and bad) as you have been for us.

I'm so sorry to hear about the seizures and I hope they will get on this and stay on it until it's controlled. Just remember to try and keep your stress low (easier said than done) and push those doctors until you're content with your treatment.

Please, please keep us updated on this. You have me worried!

*Huge hugs*

Ellie

Hi Jingle,
Thank you for your support and understanding. I"m sorry to hear that you are also having some matters with your family. My prayers are with you.

Hi Ellie,
I want to thank you for your support and to let you know I will be seeing my epi April 6th or 7th. They are going to do a sleep deprived eeg and I will be seeing my epi. I'm also going to have some blood tests done in a few days I'm just waiting for them to send me the paper work so I can go to the lab.

May God Bless You and Be with You Each and Everyday!

Sue

Sue I wish I had a magic wand to cure you and everybody else. All I can do is offer hugs and support and more hugs and support. I will keep you in my prayers.

My thoughts and prayers are with you. I know it can be scary dealing with the tonic clonic seizures because I've dealt with them since I was eight. Has your neurologist thought about the Vagas Nerve Stimulator..just a thought. I wish I could do something to take your pain, frustration, etc. away from you. Just take it one day at a time, that's the best we all can do. *hugs*

Oh Sue, my heart goes out to you. Does your doc have any thoughts as to why the sudden progression in seizure type/strength? I can see why you are so concerned. You have nothing to be sorry for, we're all here to help each other, feel free to unload anytime you need. Have you noticed any other symptom changes? Auras lasting longer or changing? Headaches changing? CP's getting stronger?
(((hugs)))

stef

Hi Stef,
The only thing that my epi is wondering as to why the sz. change is because I've gone through my change. He told me awhile ago that it could make my sz. better or worse. I have noticed more headaches above the right eye and the right side of my head where surgery was done, and yes, my cp sz. have gotten stronger because every now and then they last longer than usual. What's really strange is my spelling has gone down hill terrible but I think that was from taking neurontin a few yrs. ago. I will be seeing my epi in April to get more info. Here's wishing you well and May God Bless You!

Sue

Hi Folks,
I want to thank each and everyone of you from the bottom of my heart for all of your support and prayers. It makes me feel really good knowing I have true friends out their who understand and care. May God Bless each and everyone of you.

Sue

Dearest Sue....that's what we are here for!

Big huge hugs!

Julie