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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 banffgirl on Thu, 2008-03-20 - 19:38
hi everyone!!! just a update. had my surgery 1 1/2 mon ago. go in every 2 weeks for voltage increase. it tickles in the neck on that day but then i dont notice it till the next time they increase it. i have started going down on my keppra today now that i increased my topamax up to the next level today. i still have quite afew weeks to go on that. the vns takes about 3 monts to see the difference. so far the new lamictal & topamax is helping, the topamax has made a big difference in my migraines with siezures that i get after wards and jt with constant seizure activity in my brain. so that is a big releif.
God Bless,
banffgirl
life is fragile, handle with prayer.
hi everyone!!! just a update. had my surgery 1 1/2 mon ago. go in every 2 weeks for voltage increase. it tickles in the neck on that day but then i dont notice it till the next time they increase it. i have started going down on my keppra today now that i increased my topamax up to the next level today. i still have quite afew weeks to go on that. the vns takes about 3 monts to see the difference. so far the new lamictal & topamax is helping, the topamax has made a big difference in my migraines with siezures that i get after wards and jt with constant seizure activity in my brain. so that is a big releif.
God Bless,
banffgirl
life is fragile, handle with prayer.
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by Seruzies on Sat, 2008-03-22 - 23:58
I recently started Lamictal, and if it doesn't successfully control my seizures, my Neuro is considering VNS. I'm doing well on Lamictal so far, so knock on wood, I'd rather not do VNS. Epilepsy is something that so many others can control with meds, I just don't think I've found the right drug. Wish me luck with Lamictal!
I recently started Lamictal, and if it doesn't successfully control my seizures, my Neuro is considering VNS. I'm doing well on Lamictal so far, so knock on wood, I'd rather not do VNS. Epilepsy is something that so many others can control with meds, I just don't think I've found the right drug. Wish me luck with Lamictal!
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by banffgirl on Sun, 2008-02-10 - 10:00
hi, the surgery its self went well, i am a bit sore but movinng around as much as posible like the docs told me to. i had a bad experence before surgery. went on mon to the office that does pre op blood tests, and you sign paperwork. well some time while i was there i had at/c and they called for emts, wwhn they arrived i had another, though i had not got out of being postical yet. so the took me across the street to where i was going to have surgery, i woke up with all these strange people over me asking if i knew where i was, i said yes at the pre op office, they said no you are at the er you had 2 seizures and your son is here to,(my driver) well they stuck me in aroom and called my neuro, my spouse came cuz my son called him and told him what happened. next thing i now i am being admitted. i had another t/c n the er, and they gave me ativan my hubby said. i had more t/cs on tues and they were going to postpone the sugery is what they said tues. weds i only had abscensce so thhey did the surgery. i was in alot of pain, but i was still suffering from migraines from t/cs, and thn the pain of the surgery, so they loaded me up with iv meds so ididnt hurt or get sick (migraines make you sick to your stomache) they kept me over nite since i was there and they were worryid about a t/c. had temp that night and next day so they took bllod and everything wasfine, sat no fever but took blood again still ok, and the neurosurgeon came by and took of the dreessing which stopped some of the pain. cuz it realyy pulled my sikn hard and hurt.i got to go home sat afternoon after seeing my regular epi spec. and wll see him on the 21 to turn it on. that is the sam date they said to wet the stuff on my incisions to remove. thy dont use stiches, its some kind of new stoff, that you cant get wet. looks like paper but sticky. it holds incisions closed. so they said spnge bathes and probably best not to wash your hair cuz to close to incision in neck. good thing i washed it the day of sergury. you also cant bend ovr, if you do just the slightest hold your insicion on chest, today it feels much better that yeserday. so until they turn it on thats it. and remember mine didnt go as planned since it was to be a 1 day outpatient surgery too. i will be up a full does of lamictal by the time i see the doc on the 21. then i will see him again on ist week in march on how its going and start changing my kepprar to topamax. i really hope this works well along with meds to keep my siezzures down cuz i want a normal life again.
hi, the surgery its self went well, i am a bit sore but movinng around as much as posible like the docs told me to. i had a bad experence before surgery. went on mon to the office that does pre op blood tests, and you sign paperwork. well some time while i was there i had at/c and they called for emts, wwhn they arrived i had another, though i had not got out of being postical yet. so the took me across the street to where i was going to have surgery, i woke up with all these strange people over me asking if i knew where i was, i said yes at the pre op office, they said no you are at the er you had 2 seizures and your son is here to,(my driver) well they stuck me in aroom and called my neuro, my spouse came cuz my son called him and told him what happened. next thing i now i am being admitted. i had another t/c n the er, and they gave me ativan my hubby said. i had more t/cs on tues and they were going to postpone the sugery is what they said tues. weds i only had abscensce so thhey did the surgery. i was in alot of pain, but i was still suffering from migraines from t/cs, and thn the pain of the surgery, so they loaded me up with iv meds so ididnt hurt or get sick (migraines make you sick to your stomache) they kept me over nite since i was there and they were worryid about a t/c. had temp that night and next day so they took bllod and everything wasfine, sat no fever but took blood again still ok, and the neurosurgeon came by and took of the dreessing which stopped some of the pain. cuz it realyy pulled my sikn hard and hurt.i got to go home sat afternoon after seeing my regular epi spec. and wll see him on the 21 to turn it on. that is the sam date they said to wet the stuff on my incisions to remove. thy dont use stiches, its some kind of new stoff, that you cant get wet. looks like paper but sticky. it holds incisions closed. so they said spnge bathes and probably best not to wash your hair cuz to close to incision in neck. good thing i washed it the day of sergury. you also cant bend ovr, if you do just the slightest hold your insicion on chest, today it feels much better that yeserday. so until they turn it on thats it. and remember mine didnt go as planned since it was to be a 1 day outpatient surgery too. i will be up a full does of lamictal by the time i see the doc on the 21. then i will see him again on ist week in march on how its going and start changing my kepprar to topamax. i really hope this works well along with meds to keep my siezzures down cuz i want a normal life again.