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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 Wed, 2008-01-30 - 12:25
hi, i have primary generalized seizures though its not unsual for a limb to occasionaly jerk or my left leg to to turn to jello under me. epi doc said not unusual to get with generalized as well. lamictal has made me think and speak clearer too, but the changes in siezure activity on when in the day or night and number of seiures i was having changed before i got on lamictal. so i think that part is definitetly a coincidence. you can check under treatment and click on vns. then go thru all the different screens and read them. also check with your epi spec. to see what he says. vns was originaly approved for partial brain only, but they have had some good sucess with whole brain treatment. i have constant seizure activity in my brain beside siezures so its worth the chance to try the vns, i am scheduled for surgery on 2/7. i have a 50/50 chance of it working but when your desperate its worth it.
good luck,
banffgirl
hi, i have primary generalized seizures though its not unsual for a limb to occasionaly jerk or my left leg to to turn to jello under me. epi doc said not unusual to get with generalized as well. lamictal has made me think and speak clearer too, but the changes in siezure activity on when in the day or night and number of seiures i was having changed before i got on lamictal. so i think that part is definitetly a coincidence. you can check under treatment and click on vns. then go thru all the different screens and read them. also check with your epi spec. to see what he says. vns was originaly approved for partial brain only, but they have had some good sucess with whole brain treatment. i have constant seizure activity in my brain beside siezures so its worth the chance to try the vns, i am scheduled for surgery on 2/7. i have a 50/50 chance of it working but when your desperate its worth it.
good luck,
banffgirl
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by RJQ on Sat, 2008-02-09 - 23:43
Hi, my son has generalized siezures and is now on zonegran and topamax. He also needs ativan for the break thru siezures. He's 18 and has severe Autism. On the 11th we are scheduled to meet with cypertronics rep for vns. I'm wondering how your surgery went on the 7th and how you are feeling so far. I'm sure you're not at the computer yet, but when you get a chance, could you please reply? We have been thru years of different drugs (since 1999 first grand mal) and combinations. I don't even remember them all. Some didn't work right away. I know the first was Depakote. It worked but he gained massive amounts of weight and as he got older and heavier it stoped working. So then the parade of drugs began.
I hope you're doing well and are finding some relief. Please let us know.
Thanks!
Hi, my son has generalized siezures and is now on zonegran and topamax. He also needs ativan for the break thru siezures. He's 18 and has severe Autism. On the 11th we are scheduled to meet with cypertronics rep for vns. I'm wondering how your surgery went on the 7th and how you are feeling so far. I'm sure you're not at the computer yet, but when you get a chance, could you please reply? We have been thru years of different drugs (since 1999 first grand mal) and combinations. I don't even remember them all. Some didn't work right away. I know the first was Depakote. It worked but he gained massive amounts of weight and as he got older and heavier it stoped working. So then the parade of drugs began.
I hope you're doing well and are finding some relief. Please let us know.
Thanks!
Re: VNS FOR ALL OVER BRAIN SEIZURES?
Submitted by willsmom on Wed, 2008-01-30 - 11:09
Hi Banffgirl. I am interested in the fact that your doctor has recommended VNS. Is your condition Generalized epilepsy or JME? I have cruised through linked comments and see that the combination of Topamax and Lamictal can be a good one. My Son is on both as well as Zonegran. He has been struggling with T/C seizures for 4 years now. He was on monotherapy of Lamictal for 3 years with no T/c seizures at all. He did have an increase of Myoclonic Jerks and Absence during this time so his neuro decided that he would take care of that bytaking him off of Lamictal and replacing it with Topamax. For my son the Topamax on it's own began the trend of T/C seizures. Since that time he has tried Keppra ( Bad on it's own) Phenobarb.. super bad, and Zonegran. The Lamictal has made it much easier for him to think and speak. But the seizures which used to happen only in the morning or nocturnally have now begun to happen in the afternoon and evening. I was cruising this site to see if anyone else was experiencing the same problems and it seems that there is a trend with lamictal to change the nature / timing of seizures. He does stil have Jerks occasionally and Absence once in a while. The T/C's attack him regularly from once a week to once a month. Quality of sleep and regular eating patterns do have an effect on the number of T/C seizures... thank you all for your comments on this site it is good to know that he is not alone in his struggles with this condition and the drug dance.
I wonder if my son is a candidate for surgery as well. My understanding is that JME is not corrected with VNS... that is why I am interested in your diagnosis.
Hi Banffgirl. I am interested in the fact that your doctor has recommended VNS. Is your condition Generalized epilepsy or JME? I have cruised through linked comments and see that the combination of Topamax and Lamictal can be a good one. My Son is on both as well as Zonegran. He has been struggling with T/C seizures for 4 years now. He was on monotherapy of Lamictal for 3 years with no T/c seizures at all. He did have an increase of Myoclonic Jerks and Absence during this time so his neuro decided that he would take care of that bytaking him off of Lamictal and replacing it with Topamax. For my son the Topamax on it's own began the trend of T/C seizures. Since that time he has tried Keppra ( Bad on it's own) Phenobarb.. super bad, and Zonegran. The Lamictal has made it much easier for him to think and speak. But the seizures which used to happen only in the morning or nocturnally have now begun to happen in the afternoon and evening. I was cruising this site to see if anyone else was experiencing the same problems and it seems that there is a trend with lamictal to change the nature / timing of seizures. He does stil have Jerks occasionally and Absence once in a while. The T/C's attack him regularly from once a week to once a month. Quality of sleep and regular eating patterns do have an effect on the number of T/C seizures... thank you all for your comments on this site it is good to know that he is not alone in his struggles with this condition and the drug dance.
I wonder if my son is a candidate for surgery as well. My understanding is that JME is not corrected with VNS... that is why I am interested in your diagnosis.