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I’ve tried the VNS . It didn’t work well for me. But there are many people it has worked for
So I have a VNS and RNS...both don't help anyone have similarities
@A MyEpilepsyTeam Member
I chose to have my VNS completely removed when it didn’t help me. I could have just had it turned off too.
Cause I was told that the battery in my vagal nerve stimulator is low , anyone had a battery replacement?
Yes. I just had mine replaced last year. It is the same experience as getting the first one. It’s nothing bad at all. They do it really quick.
Im on my 4th drug and the side effects seem to be a big problem for me. I get there are effects with every drug but these problems i have arent the ‘barable’ type shall i say! What are my options that arent drugs? I asked about brain surgery and neurologist says it isnt really for me. I feel at dead end... i feel like id rather go back to seizures than have all these other problems? I know it sound ridiculous! Help!!!
It your life you have to be happy in any decisions that you make prayers for a clear path to follow
He's getting up to 14 seizures a night he's no quality of life he's down for vagus nerve simulation but I don't want him to get it because I've read too much stories about how it doesn't work and some horror stories there's limited options in ireland for epilepsy has anyone ever went overseas to UK or Scotland or anywhere without doctors referral an in go private with self referral for treatment I can't bear to c my beautiful son suffer anymore its not fair n him I'm willing to pay whatever I… read more
Jen did you see the link I posted for you Ireland epilepsy foundation etc?
If you're trying to keep track of seizures, being on known having one. I just saw this device, THE EMBRASSED 2 SEIZURE WATCH, it can set an alarm if needed, can send a text, and other for safety… read more
Does anybody have a VNS and an RNS that work together? Im trying to get the RNS but at a Previous meeting my dr said they were unsure because i already have a VNS. The last time we spoke to her she said shes spoken to other dr’s and they do have patients who have both and that they work together somehow? My VNS doesnt help me thats why she told us that, i told her we can turn it off and she gave us that info. I’d like to know if there’s anyone on the app who has both and how they work for… read more
It's time to talk to your Dr about trying a new seizure med.