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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 kkey on Wed, 2008-01-30 - 15:24
I know exactly how you feel!!! I have generalized epilepsy (JME) and I had the VNS surgery because my doctors didin't know what else to do. I've been on every drug imaginable with every combination. I'm on phenobarbital and klonipin and I sleep all day. I'm attempting to get my pre-med degree and nothing is working. The surgery isn't that bad. It took about a week and a half to recover and it was not invasive at all. You even get to go home the same night you have it! I would reccomend trying it because it isn't bad at all. You barely have any scars. However, mine hasn't done anything for me yet. My seizures just won't stop at all, but the surgery is for partial epilepsy. I'd say it's worth trying. Let me know if you have any more questions about the surgery.
Katy
I know exactly how you feel!!! I have generalized epilepsy (JME) and I had the VNS surgery because my doctors didin't know what else to do. I've been on every drug imaginable with every combination. I'm on phenobarbital and klonipin and I sleep all day. I'm attempting to get my pre-med degree and nothing is working. The surgery isn't that bad. It took about a week and a half to recover and it was not invasive at all. You even get to go home the same night you have it! I would reccomend trying it because it isn't bad at all. You barely have any scars. However, mine hasn't done anything for me yet. My seizures just won't stop at all, but the surgery is for partial epilepsy. I'd say it's worth trying. Let me know if you have any more questions about the surgery.
Katy
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by Missyat on Wed, 2008-01-30 - 21:45
My son can not have any resection for his seizure, his are all generalized. Docs can not find any focus and his seizures use his whole brain very quickly.
The ''brain split'' surgery will also not work for him either.
The VNS is the only thing that has helped my son's seizures. He went from 100's a day to 0 for 182 days!! but breakthroughs came and EX neuro sucked, so he is up to 15 a day.
I will still take 15 a day versus 100's??
Learn all you can about the VNS, know all the risks and weigh them carefully.
Missy, mom to Kevin 10 Years old, Doose or MAE Myoclonic Astatic Epilepsy
My son can not have any resection for his seizure, his are all generalized. Docs can not find any focus and his seizures use his whole brain very quickly.
The ''brain split'' surgery will also not work for him either.
The VNS is the only thing that has helped my son's seizures. He went from 100's a day to 0 for 182 days!! but breakthroughs came and EX neuro sucked, so he is up to 15 a day.
I will still take 15 a day versus 100's??
Learn all you can about the VNS, know all the risks and weigh them carefully.
Missy, mom to Kevin 10 Years old, Doose or MAE Myoclonic Astatic Epilepsy
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by banffgirl on Wed, 2008-03-26 - 20:59
the lamictal is a good drug, hope you have good luck with it and so is the topamax i am on. but am still having siezures. i had my vns turned up again on monday. i am a bit hoarse afterwards since he turned it up more than the 2x before. voltage wise i mean. i have noticed a slight improvement the last two days on abscences, which is good. so i think the vns is starting to do its thing. hubby has been teasing me though about the little cough every 3 min saying he could count 10 of them and know 30 mins has past. oh what a card!!! ya right, lol.
God Bless,
banffgirl
life is fragile, handle with prayer.
the lamictal is a good drug, hope you have good luck with it and so is the topamax i am on. but am still having siezures. i had my vns turned up again on monday. i am a bit hoarse afterwards since he turned it up more than the 2x before. voltage wise i mean. i have noticed a slight improvement the last two days on abscences, which is good. so i think the vns is starting to do its thing. hubby has been teasing me though about the little cough every 3 min saying he could count 10 of them and know 30 mins has past. oh what a card!!! ya right, lol.
God Bless,
banffgirl
life is fragile, handle with prayer.