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What do you think about Vagus Nerve Stimulators??
Sat, 07/28/2007 - 00:45Topic: 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: What do you think about Vagus Nerve Stimulators??
Submitted by Boomers Mom on Thu, 2007-11-08 - 10:32
My son had the VNS implanted 18 months ago. It has cut down the number of seizures from 75 - 100 a year to 2 a year. He has had no problem at all with it. They have changed the levels on it a couple of times and have increased the frequency. For those who have had problems with the Topomax, my son had to be taken off of that because when it got to toxic levels, he could no longer talk. He knew the words in his head but he knew that he would not be able to verbalize them. His freshman year of high school, his teachers did not know he existed for the first three months of school. He never answered. When we took him off the Topomax, he suddenly was very verbal in school and the teachers could not believe the change.
Re: What do you think about Vagus Nerve Stimulators??
Submitted by bernardcwe on Wed, 2007-11-07 - 11:39
I think there are better options out there (aside from drugs) worth exploring than the VNS. Have a look at the chart in my signature. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Check out my chart of alternative epilepsy treatments.