MyEpilepsyTeam

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@A MyEpilepsyTeam Member I’m seeing a lot of negative answers but I have to tell you, my VNS is the best thing I ever did! Not only has it decreased my number of seizures, my recovery time is SOOO much faster, and VERY little, if any, aphasia.
My dr said the only requirement is that you prove to be ‘drug resistant’… which means they’ve tried 2. It has really changed my life for the better! I hope it ends up being an option for you!

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A MyEpile...

The first thing that happened to me was having the depth electrodes test. That was over three weeks long. The reason that happened is my Dr. wanted to know where my seizures were coming from in my brain, after getting those results my Dr. knew if some more options for more surgery were possible. Unfortunately more surgery is not possible. So the VNS was the only other thing to do along with taking medication. My VNS worked perfectly, slide the magnet 🧲 over the stimulator and it worked/turned on. The batteries 🪫 inside the one I have now are dead, so I have been told I will be getting a new model VNS in the future. I’m terribly sorry things did not work out correctly for some of You. Keep the faith-something good will come for all of us eventually!

VNS's help with grand mal, petit mal and partial seizures. BUT you have to stay on medication, also. I take very high doses of Keppra and Zonegran every day. Now, I was one of the first 1,500 people in the world to get a VNS implant done (and I LOVE it) and my best friend was one of the first 1,000 people to get one. December will mark the 25th anniversary of when I had my VNS surgery done. I haven't had a grand mal seizure since the implant was done (that wasn't induced in a hospital). And I just went three years without even having a simple partial seizure. Trust me---if your neurologist thinks that you're a candidate for a VNS, get it done.

Sorry that happened to you JoAnn. For starters, that's illegal. No Dr can tell you that you can't have a colonoscopy because you have seizures. Not only am I a medical professional in Neurology, but I've had sz since I was 10 and I had my first colonoscopy in my upper 20's within a couple of months of my last 2 brain surgeries. I now have to get them at least every 3 years and if they wouldn't allow me to have them, I might have colon cancer by now. I did have the same issue, when I had constipation, my GI Dr put me on polyethylene glycol which lowered my sz medication levels, basically because it was coming out of my system when using the washroom. When having my colonoscopies, I take an extra dose of my sz meds the day before and the day of my test so they wouldn't lower my levels too much. It's also good to know that benedryl and meds with benedryl can cause med levels to drop. This is why I take prescription allergy meds