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VNS FOR ALL OVER BRAIN SEIZURES?

well 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?

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.  

Re: VNS FOR ALL OVER BRAIN SEIZURES?

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?

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?

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.   

Re: VNS FOR ALL OVER BRAIN SEIZURES?

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?

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?

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.

Re: VNS FOR ALL OVER BRAIN SEIZURES?

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?

 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?

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

Re: VNS FOR ALL OVER BRAIN SEIZURES?

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?

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?

 I am in a similar situation that your daughter is in.  I've had complex partial epilpesy, for 29 yrs now, have tried the modified atkins's diet, all the available dugs-am now on trileptol and keppra and had the VNS put in in Dec,2005.  I thought it would reduce the seizures, but it hasn't.  The only thing my husband and I have noticed is that it helps the recovery time after a seizure.   There are some seizures where there is no warning so I can't use the magnet.  I decided to do the VNS surgery because I felt the same way....maybe this IS the answer.  I had to give it a shot, or I'd never know.

I hope Mol finds something that works.  How old is she? I've often wondered if different combos of drugs and food could make a difference.  But then again, how long do you have to try the different combos to see if it  does reduce the seizures??. Years/  I'm running low on them.  I truly hope you and your daughter find something that works.  I know what it feels like.

God Bless. 

 

Re: VNS FOR ALL OVER BRAIN SEIZURES?

My Epilepsy is Generlized Tonic-Clonic seizures. This was diagnosed 4 months after a brain aneurysm rupture in 2005. I have been living with E since then. 6 to 8 sz each day. Been on every med possible. Every test. Sent to all kinds of head shrinks.. etc. Finally thought I found a neuro who cared. He suggested VNS. I discussed it with my husband and Adult children. We all voted..... One last Hope! What do we think now that it was done Oct. 2007???? Why? Why? Why? It does nothing but interupt my voice. While you have a seizure and you are alone. (they give you this little special magnet to use to stop your sz) there is no way for you to stop your own sz if you are having a G/M! If I do have a sz while my family is with me the magnet does not stop my sz. If in public alone (which I am never out alone) not one person would know where to look for a magnet or where to swipe it unless I had a user manual strapped around my neck! Sorry but in my case it has not stopped my seizures. This is just my story. One person, One story! Keep an open mind and continue to ask others about their implants. Oh yeah one last thing. My scars are pretty big on my neck and chest. the implant sticks out and looks like a pocket watch just below my collar bone. Nina 

Re: VNS FOR ALL OVER BRAIN SEIZURES?

hi nina,

i am sorry you had a really bad experience with your vns. did your aneurysm cause the epilepsy.? i dont know if that makes a difference in how hard it is to control or not. i had a small tia in oct 07 which isnt unusual for patients with e. my epilepsy is genetic though and have had it all my life. it has gotten worse over the years in stages. the vns is working thankfully. as of today it is 2 week no t/cs. i am still having abscence and am back to having partials and complex.  those i can put up with. my scars are pretty big too, ecspecially the neck one. my epi doc told me only some people have luck with stopping siezures with the magnets but it will turn it off if neccessary. but we havent ever tried it for the small ones. i kind of throw it in the closet cuz if all the warniings about credit cards , computers, etc. so where would i put, them? the only time i had trouble with my voice is the last time he turned it up because it was turned up a little more than usual.

there seems to be good and bad experiences out there. i guess it depends on your body reacts to it and the history and types of siezures. i dont know if me having genetic was a plus or not? i pray they find some thing else that will work for you. i know my epi doc said there is a chemical reaction between lamictal and topamax that works well with t/cs. if you havent tried that, ask your doc about that. would hurt and it slowed mine down before the vns kicked in. good luck.

  

God Bless,

banffgirl

life is fragile, handle with prayer.

Re: VNS FOR ALL OVER BRAIN SEIZURES?

Well I don't know about other people but I have had nothing but bad luck with the device except for one thing, and that is the ability to to get some sort of warning that I am going to have a seizure. Other than that it has been nothing but a but a pain in the neck (pardon the pun) :) I have had the surgery twice (the first one burned the nerve) and have turned it off now. We had to do that because when we replaced the first one my doctor had to move the lead closer to my voice box. When he did that it was next to impossible to speak. I am happy for and jealous of the people that the device worked for them. I have seizures that the doctors can't find a ffocal area for and I have been through all the meds that are available to me including some experimental ones. Then last month my doc started me on Lyrica and I ended up in the hospital with pancreatitas. The emts and people at the er know me by site now. I constantly wonder when this will stop if ever. Good luck to you and to everybody else out there, and if you are considering using this device because it does have some serious side effects and you just can't stop using it as it is inside of you. Oh sure you can turn it off but it doesn't go away you get to keep it. So good luck.

Re: VNS FOR ALL OVER BRAIN SEIZURES?

My daughter was diagnosed with intractable generalized seizures, comlex partial seizures, atypical absence seizures, possible LGS, developmental delay (after she had medically induced pentabarb coma for one month) tonic-clonic seizures.  Her onset was age 7, we have tried just about every medication (non-responsive), In Feb 2008 we opted for surgery for the VNS, the surgery went well and she has had minimal side effects moderate fatigue at times (could be the meds tho) clearing of her throat which has stopped over time she does have itching of her scar at times and shortness of breath during walking or outside activity (reported this to her dr. dont kno if its related to her vns or not)  Did not think it was working at first so we found a dr that has dealt with the vns/patients and she adjusted the vns settings appx 3-4 times over the past 8 months.  No other surgery is an option for my daughter because of her all over seizures.  I thought about what if it doesnt work then she would be stuck with this foreign object in her chest/neck,  but then again what if it does work she deserves a better quality of life.  Our options for her are limited anything is worth trying.                   I wish the best for you and hope you find the answers to your questions and concerns.  Take care :)  

Re: VNS FOR ALL OVER BRAIN SEIZURES?

Hi all, first time posting on this site, but love reading it. I had the vns implanted in 2007 now, 4 years later I am still having seizures, still changing my aed's constantly, just had my vns uped a little and still have "flashies" as I call them that sometimes I can "talk myself out of" but often have to swipe my magnet, if you catch the aura soon enough it will stop the seizure, but in my case weirdly, if I accidentally get to close to my magnet when I am not having an aura, it will close  my throat make me cough and gasp until the pulse is over, much like if I feel an aura and swipe it too soon, I almost have to be in the "beginning to tunnelvision" stage of aura for it to be safe to swipe without gasping for air. We have used it during a few seizures yes it brings you out of the seizure but the feeling of being snaped out of a grand mal seizure when your brain isnt ready is hell, I would almost rather finish having the seizure than deal with the fear, trauma, pain, ect that you get when you are riped out of a seizure. When we have grandmal seizures we black out, don't remember the seizure and feel like hell when we come out of it, when you swipe during a seizure it makes me cry like a baby still feeling the aftershock and trying to understand "im okay im comming out of a seizure". As far as swiping the magnet during a seizure, I don't like it I'd rather finish having the seizure, deal with the headache that feels like the back of your brain is blowing out the back of your head, sick to your stomach where you think "god if I could throw up i would feel so much better" and the countless holes bitten in the cheek and tongue they take days to heal, but the feeling of being riped out of a grandmal seizure is scarry!!! The last seizure I had my hubby swiped my magnet, I came out of it and found blood all over the floor, when I was alert enough my husband told me while I was coming out of the seizure I grabed at my sholder where I have a mole, I ended up tearing half the mole off (I always wanted it removed but NOT like that lol) and I had ended up biting BOTH sides of my cheek and 2 places through my tongue. Normally I only bite one side ironically the mole is on the same side my implant is. So what I was doing was comming out of the seizure, half in half out, knowing it had been swiped and tried to stop it. In summary, vns helps  me IF i catch the aura at the right time, they will bring me out of a seizure but I would rather just finish haveing the seizure than the feeling of being stoped in the middle of one. which was one of the major sellers to me when we first discussed it the fact that i could stop them, just not worth it to me, i have changed the pulses as much as i have changed the meds. much like most of you it was a well its worth a shot kind of thing, but now still I kind of regret it, the horseness, and scars are almost not worth it. The whole intention of me getting the vns was to cut down on my aed's but still 4 years later I am still on 3 meds and still have seizures. The thing that kills me is like many of us, they run all kinds of tests tell you where the seizures center from but they can't find what causes them. SOMETHING has to be causing them. The closest I ever got to an explanation was before I got the vns, they did the video eeg and said they found 3 little granules (about the size of a ball point pen) and gave me the option of brain surgery that was risky for such small granules or vns, I was afraid of the brain surgery so I took vns, now 4 years later I wish I would have tried the brain surgery first. Good luck to you all, as far as a child dealing with the vns, I wouldn't let my sons do it, I as an adult have trouble with it, imagine a child who still lives in fantasy land having to deal with a robotic implant they don't understand no more than understanding how computer chips work. You think figuring out how to explain santa to a child is tough, try to explain how putting an implant in makes them kind of a robot, but no special powers, I think they will be confused, and if it doesnt work and causes the trouble it has me, the child will eventually grow up and say "why the hell did you let them do that to me" I would try any other methods first, then discuss with them the best way to explain it to a child and see if they understand enough to explain what it actually does, if not, they are just gonna think they are electronic superman, and not understand where the kryptonite is comming from when it doesn't work!  GOOD LUCK TO YOU ALL, let me know if you have any insight, suggestions ect as my e has left me feeling like a walk down a long road youve never been on in the dark.  THANKS ALL!

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