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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.

Does Anyone Have The VNS?

A MyEpilepsyTeam Member asked a question 💭
Bowdon, GA

I have had epilepsy 52 yrs. I have taken more seizure meds than I can remember and am allergic to over 10. I am currently on 4 AED’s( Dilantin, Vimpat, Zonegran and Klonipin) along with CBD and THC oil. Can someone please give me info...pros and cons? Thank you.

April 23, 2018
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A MyEpilepsyTeam Member

If you have generalized, then it will work. Unfortunately (at the time) my doctor assumed I had that type, so it didn't work at all....in terms of side effects, I was always out of breath. Working out, walking up stairs, or even sprinting for a bus. You also get a little change in your voice (kinda sounds like your about to cry every few minutes).

April 30, 2018
A MyEpilepsyTeam Member

I will have mine in 12 days.

April 25, 2018
A MyEpilepsyTeam Member

I've have a VNS for a good while now and it has cut my seizures way down in number. The only problem I've had with it is,that it can cause you to be hoarse or not able to speak the moment it comes on but that only lasts for a few seconds . The only other thing you can't have an MRI. Other than that I like mine.

April 24, 2018
A MyEpilepsyTeam Member

Best thing I ever did was agree to surgery. 5 months now.
3 yrs ago i was afraid and said no.

April 23, 2018
A MyEpilepsyTeam Member

I've had mine since 2001. Every time it goes off I sound like Kermit the frog, which is kinda funny... But even getting R+R when the battery is dying is no biggie. Your medical team will check it periodically and adjust the duty cycle if needed. Before you get the device, you will receive a lot of information about it. For me, it was the best thing since hot buttered popcorn!

December 7, 2018

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