Maybe this finally my cocktail that works.

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Belinda5000

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I started going over my records for my seizures and my last one was 12-26-13
I see my neuro next month with my DH since we see the same one.

I was going to talk to him about coming off the Phenobarb, but I don't think I would want to touch that now.I'd even leave the Onfi alone and the Tegretol.,the Topamax I'm not sure about.


I went 41/2 months seizure free in 2013 and than all of a sudden my seizures started back as bad as ever.

After 50 years I'm just here guessing ,I'm Refractory and I had RTL in 1982 didn't help.I got a VNS in 2000 and it worked great for awhile but after awhile my seizures started back worse.:agree:
 
If its working good right now, maybe its best not to touch it at all. I'm glad you have been able to go this 2 months seizure free. I can only imagine how you feel. That's great that your DH goes with you. What a blessing!!! :)
 
How long did you have your VNS before your seizures started to get worse again?

I got mine in 2007. At the end of last year I started having more seizures a month than I usually do. At my neuro visit in Jan and he checked my VNS (which he does every visit) he saw that the battery was dead and this was why I was having so many seizures. I had to have it replaced. Been doing good since. Still having seizures but I still had them after I got the VNS, it just lessened the amount that I have a month and how bad they are.

They may tell you the battery will last over 10 years but depending on what the settings are on your VNS will determine on how long the battery life will be. If it's on higher settings it won't last as long as it will if it's on lower settings.
 
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my battery wasn't dead on my VNS I had a doc for my VNS and a doc who took care of my epilepsy.

My seizures started increasing with my VNS when I had the battery changed for the VNS the first time. The 2nd model for the VNS came out 2 weeks after I got my VNS and I had to get same model when battery was changed.I've had 3 VNS surgeries and wouldn't have a 4th.
 
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