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What do you think about Vagus Nerve Stimulators??

Sat, 07/28/2007 - 00:45

Topic: Parents & Caregivers

We have had a very bad week. My daughter is not doing well and had an 18 hour visual seizure (please read my other posts) which is totally new for us. We saw an ophtamoligist and everything was normal. He is suspecting more seizure activity. Ugh!! My daughter does not handle most of the meds we've tried and is on Topomax and Celontin. She has been struggling with one form of epilepsy or another since she was 11 y.o. My daughter does sing and do music in our family band, but we are considering VNS, because she is sick most of the time. She feels like if she feels well, even though she probably will be unable to sing, she can focus in on her instruments and maybe get on with the other aspects of her life, if possible. From personal experience, what are the risks, successes, etc. She and I are researching this and trying to count the costs. I would appreciate any help you would be willing to share. Thank you so much!! Dorene

Comments

Re: Re: What do you think about Vagus Nerve Stimulators??

Submitted by bygrace11 on Sun, 2007-07-29 - 23:22

Thanks so much for your response!! Does it have to be a particular type of epilepsy for the VNS to work well, or is it just based on poor response to meds and individual response? My daughter started with what seemed like partial complex seizures. Her first episode that we really noticed lasted 12 hours where she was spaced out and could barely do anything. Her pupils were huge. She remained awake, but confused until bedtime and then awoke in the morning with and huge headache and no memory of the previous night. She went on Topomax and seemed better until a year later when she was basically unable to write or do any school work. We did the 24 hour EEG and found out that she was having thousands of absence seizures a day. It's hard to know what really is going on or has gone on. Anyway, thank you very much for your input. I am eternally grateful. Dorene

Re: What do you think about Vagus Nerve Stimulators??

Submitted by Tanya_sickofDoctors on Wed, 2007-11-07 - 07:04

Personally i think that the VNS therapy is just a mild form of electroshock therapy. My son had one implanted in Feb 2006 and still twitches a little when the thing comes on. It is just as ineffective at controlling his seizures as any meds we have tried. I am having his neuro shut it off this week. I would try other forms of nutritional and environmental intervention. Such as a GFCF diet. I have tried this with my son and it appears to help as well. I have also done a lot of research into Autism and am completely convinced that my son is Autistic and they are much more sensitive to things that most people are not. I have done all my research through Google and my sons own history. At 6 years of age we have been through a lot and still have a long ways to go! Tanya

Re: What do you think about Vagus Nerve Stimulators??

Submitted by babzy on Mon, 2008-04-07 - 00:55

hi tanya, i am checking out the vns for my own purposes and came across your response. i did read that the vns isnt an all around cure for seizures but over time it is suppose to help.maybe your son also needs to grow into a device like that as well considering his age, 6 seems young. did you try all meds and at his young age would there be any chance of surgery to repair the problem..?technology has made great progress ..good luck and i hope you and your son are seeing brighter days babz..

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