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Has Anyone Tried VNS?
A MyEpilepsyTeam Member asked a question 💭

My son can no longer take Depakote as it’s destroying his liver. So his Dr is recommending VNS (after trying 3 diff meds for his grand mal seizures but they have all failed) but I’m hearing many conflicting stories about its effectiveness. Any advice? Thanks!

posted March 12, 2023
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A MyEpilepsyTeam Member

Hi, I failed 20 meds before my neuro recommended the VNS. I have bi-lateral TLE. I waited 3 years before saying yes to the VNS. It minimally helped me. Last Nov/Dec I got the DBS implant also. Now both of these are running together. The DBS has been a lifesaver for me. (check out Deep Brain Stimulator)

posted June 3, 2023
A MyEpilepsyTeam Member

I will pray for him. Poor guy. If I had it to do over again I would do it. My VNS has helped me a lot. I haven't had a grand-mal in years and I feel that it is partly due to it.

posted March 30, 2023
A MyEpilepsyTeam Member

Wow. That's a lot of meds. Yes, he has tried Lamictal and the side effects were awful (dizziness, lightheaded, and blurry vision, to name a few)...but I was also told that was because Lamictal and Depakote are not friends. He was taking both together, so that didn't work for him. He's tried multiple meds but only Depakote has worked for him. However, after 5 years on Depakote, now I'm told the prolonged use is affecting his liver negatively. His liver enzymes are up and he is at risk of hepatitis and Lord knows what else. We are going to try switching to a different med after his 5-day EEG is complete but I am really worried as he needs to stop meds for that study so they can see how severe his seizures are. They are soooo bad - he only has grand mal seizures now and they can go on for 7-8 minutes at a time with no relief until paramedics are called in. It's a scary sight, and totally freaks me out. He currently qualifies for VNS so we may have to go that route. Keep him in your prayers.

posted March 28, 2023
A MyEpilepsyTeam Member

I am currently taking Vimpat 300mg Lamictal 200mg and Topamax 400mg. I have tried over 12 or 14 different meds.

posted March 14, 2023
A MyEpilepsyTeam Member

Thanks for your reply. What other meds are you taking?

posted March 14, 2023
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