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About MyEpilepsyTeam
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Who Has Had The VNS Surgery? How Have You Felt About It?

Who Has Had The VNS Surgery? How Have You Felt About It?

Please helppp I just saw my new doctor and he is recommending this for me. We’re trying a couple of medication changes before this but he’s seen that nothing has been working and i’m having way too many seizures so any input would be greatly appreciated thank you..

posted 3 months ago
A MyEpilepsyTeam Member said:

I've been on Keppra (8) per day for years, now only 3 tiny ones. Had a bad seizure and the hospital referred me to another Dr. who put me on "Onfi" and I haven't had seizures for a few months. One thing this past week I spaced In and out for three days but I'm under severe pressure. I've moved back home (was helping my daughter she had a baby) and my husband is a hoarder and I am supper stressed.

posted 3 months ago
A MyEpilepsyTeam Member said:

This is what you do. Get rid of anyone or anything that is causing u drama. If ur married or have a boyfriend or kids. Take a time out from them and go somewhere peaceful thst u like. Meditation helps relax the brain a great deal, candles aromas, soft lights that change colors. Train ur brain to relax while staring at them and smelling the scents of the candles or watching the lights change color. Most importantly u have to bring down ur everyday stress level. Don't hang out with people who will hurt u mentally physically or any kind of way. NO DRAMA! What so ever. I did all this and I'm happier for it. Make friends who are drama free.

posted 3 months ago
A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member oh i’m definitely researching. I wanted to come on here for more answers from personal experiences because i figured it’d be more accurate advice that could help me some more. And i will ask my doctor about that at my next appointment

posted 3 months ago
A MyEpilepsyTeam Member said:

I was having temporal lobe epilepsy 60+ seizures a week. I was told there was nothing left to try I had tried all the medicine classes available and nothing was working....I finally agreed to try VNS. It was done in January of 2011 now the temporal lobe epilepsy is undetectable they can only record the Frontal lobe epilepsy and that is new to me. Hopefully with the new meds I will be able to control this as well. I am not saying this is an answer for everyone but it is a true blessing for those with whom it works for. Do your due diligence and research before you make any decision but don't allow one or two voices change your mind pro or con

posted 3 months ago
A MyEpilepsyTeam Member said:

I had the VNS surgery done about 7 years Years ago but who's counting as it did nothing to stop or control my sezuires. I was told it would take 4 years even before the VNS would be set up to control my sezuires because it had to be dieled in to the right frequency to detect my sezuires and interrupt them and 7 Years later and down from 3 from 5 and they said I'd be off all my medications and with the 3 am on and my sezuires aren't controlled they want to add more and am still taking 60 pills a week. The only thing it did for me was change my sezuires from so many monthly to nocturnal so now am having them daily when I take a nap in the afternoon because my meds make me so tired and fatuige and when I go to sleep at night. My best medication and what I've tried is CBD oil in my coffee in the morning and smoking THC before I take a nap in the afternoon and before I go to bed at night as they control my sezuires while am sleeping.

posted 3 months ago
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