Pros And Cons Of VNS? | MyEpilepsyTeam

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Pros And Cons Of VNS?
A MyEpilepsyTeam Member asked a question 💭

I have maxed out on all my medications, and they do not help my seizures. My seizures have been getting worse and more intense. My neurologist said my last option is the VNS, but I want to learn more about it before I go through with it

posted June 1, 2023
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A MyEpilepsyTeam Member

They wanted me to do that it can change your voice

posted June 1, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , You can reach out to team member @A MyEpilepsyTeam Member & he can tell you the experience he had with the VNS & how it didn’t help him & so he got the RNS. Some have said the VNS hurt. I think our other Texas friend, @A MyEpilepsyTeam Member , had the VNS but if I remember correctly, she said it hurt & had it removed & had surgery & has been seizure free & so you can read her story. You might find comments about the VNS also by going to the Q & A section & clicking on circle ⭕️ with the little line attached to it & type in “VNS” or whatever topic you want to look up & past questions & comments will come up in reference to that topic. Good luck & Welcome. Your friend in Austin, Texas, Becky

posted June 1, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
It only changed my voice while it was going off. It added a little vibration but I think I eventually got used to it and it didn’t affect my voice as much. It had no positive results for me so I got taken back out.

posted June 1, 2023 (edited)
A MyEpilepsyTeam Member

I have had my Vns for about 11 months now so it is still fairly new. It is different for everybody and can take a while to see if it working to stop/shorten seizure length. I have yet to see any positive results and still have seizures but am hoping that will get better with time. I do have to say that for me it can be a little uncomfortable at times. Some of the main side effects that I have experienced so far are
-shortness of breath
-voice change when going off (yes your voice can change which is not a big deal for me but it can make it a little harder to catch your breath when speaking)
-when going off it can sometimes feel like something pushing on your neck
- my main issue has been jaw pain. It feels like an on and off toothache. I have been to the dentist and have no cavities or anything else that could cause this. The pain comes and goes as the battery goes on and off

This is still new to me and am still learning and hoping that these side effects lighten up over time. I hope this helps!

posted June 2, 2023
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