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VNS FOR ALL OVER BRAIN SEIZURES?
Sat, 12/15/2007 - 09:58well i went to my epi doc beginning of dec and he was really pushing the vns since my seizures have continued to get worse and worse. i have been uncontrolable for 4 1/2 years and taken every med available. so since i was such a nervous nellie about commitig to the vns even if he said it would improve my quaility of life and keep me out of the er or at least cut it way back. that in its self sounds good, surgery doesnt. plus when my hubby asked what happens if it doesnt work, he said they remove the battery pack only since they dont like to take the chance with removing the wire and possibly damaging the nerve. right now i am being changed from zonegran and keppra to topamax and lamicital since together the chemical reaction works well for my type of e. took both of them in the past but not together.
what worryies me is i have primary generalized seizures which is all over the brain at once so does anyone out there have a vns with that type of e? i know it works for 1 lobe but my epi doc says there has been success with all over the brain now too. talking about starting out zapping me for 30 sec and off 3 min since i have so many t/cs. then we can adjust it with a computer in the office as needed. i am just scared but right now i take 800mg zonegran and 3000 keppra a day which he is changing to the topamax and lamictal. plus i take klonopin to slow my brain waves down to reduce seizures but that makes me sleep 16 hrs of my day, so i take a long after noon nap. please answer this forum if you have any answers. i am desparate to talk to people in my possition with all over brain seizures and vns.
thank you in advance for your help!!!!!!
banffgirl
Comments
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by tonialpha on Sat, 2008-02-16 - 22:14
There is another one at UCLA that they do not go inside the neck but the the trigeminal nerve. If you live in Southern California, you could find out about that, it is basically the same thing and not so invasive, initially. The Dr. is Dr. DeGeorgio, he is a great Neurologist.
VNS helps 1/3 of the patients completely 1/3 partially and 1/3 it doesn't help at all. With me it helped me partially . I have gen'l and partial seizures.
I have had 2 brain surgeries too.
I take Keppra, Zonegran, Klonopin and for Flurries I take liquid Valium .
There is another one at UCLA that they do not go inside the neck but the the trigeminal nerve. If you live in Southern California, you could find out about that, it is basically the same thing and not so invasive, initially. The Dr. is Dr. DeGeorgio, he is a great Neurologist.
VNS helps 1/3 of the patients completely 1/3 partially and 1/3 it doesn't help at all. With me it helped me partially . I have gen'l and partial seizures.
I have had 2 brain surgeries too.
I take Keppra, Zonegran, Klonopin and for Flurries I take liquid Valium .
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by tgbond on Thu, 2008-02-07 - 11:20
My daughter had VNS on June 1, 2005 and to date we have seen no success with VNS. Her diagnosis is generalized complex-partial seizure disorder. She has in excess of 300 absence per day and 1 to 4 generalized t/c per week. She has been on so many meds, diets, etc. and nothing has helped to date. Her seizures actually increased after the VNS implant. She is currently on a "rapid fire" cycle as her doc calls it. They won't remove it until the battery dies because they continue to hope that it may start to help. From the info that we received from her epi specialist and Cyberonics, I understand that very few people have increased seizure activity.
Sorry that I don't have more positive information to share, but our experience isn't typical. You can only do what you feel is right for you. We were hesitant because we had tried so much without success, but we finally had to take the chance. What if it was the thing that would work and we didn't do it because we were afraid? We couldn't take that chance. It didn't work for Mol by it might work for you.
She is currently taking Lamictal, ethosuximide and Keppra. She has also taken Zonegran, Trileptal, Topamax, Depakote, acetazolemide and various combinations of each. She is currently on a modified atkins, but no improvement yet. We are always hopeful.
I understand how difficult it is to make this decision, but trust yourself. You'll make the right one.
God bless you and your husband.
My daughter had VNS on June 1, 2005 and to date we have seen no success with VNS. Her diagnosis is generalized complex-partial seizure disorder. She has in excess of 300 absence per day and 1 to 4 generalized t/c per week. She has been on so many meds, diets, etc. and nothing has helped to date. Her seizures actually increased after the VNS implant. She is currently on a "rapid fire" cycle as her doc calls it. They won't remove it until the battery dies because they continue to hope that it may start to help. From the info that we received from her epi specialist and Cyberonics, I understand that very few people have increased seizure activity.
Sorry that I don't have more positive information to share, but our experience isn't typical. You can only do what you feel is right for you. We were hesitant because we had tried so much without success, but we finally had to take the chance. What if it was the thing that would work and we didn't do it because we were afraid? We couldn't take that chance. It didn't work for Mol by it might work for you.
She is currently taking Lamictal, ethosuximide and Keppra. She has also taken Zonegran, Trileptal, Topamax, Depakote, acetazolemide and various combinations of each. She is currently on a modified atkins, but no improvement yet. We are always hopeful.
I understand how difficult it is to make this decision, but trust yourself. You'll make the right one.
God bless you and your husband.
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by keekeeD on Thu, 2008-11-06 - 14:34
Hi Missy!
I just started here on the site today.
I am on the bigger E site, you would know me as Shay1C.
How is Keven doing theses days? and you?
So sorry to hear that he is sz again, you went for a VERY long time w/o sz.
take care
KeeKeeD
Hi Missy!
I just started here on the site today.
I am on the bigger E site, you would know me as Shay1C.
How is Keven doing theses days? and you?
So sorry to hear that he is sz again, you went for a VERY long time w/o sz.
take care
KeeKeeD