I have refractory epilepsy also. I have tried 8 different medications and a IVIG tmt. Now I’m on Xcopri along with 2 other medications.
That has helped me have less seizures

I'm looking forward to my next apt. I think they have gotten better. Just not sure I'm supposed to feel anymore. But I'm alright. For now. It will be my first time asking to see what they see. All I know is hes been seeing seizure activity. Which I think are focal aware now. Haven't blacked out in 5yrs since battery change.

I've been on everyone there is. After constantly waking in the ICU I let them give me an rns in 2016. I'm only down to 2 meds aptiom and onfi. Same setup past 4years and they only see seizure activity which means my rns is doing its job by stopping seizures before I even notice them.

Yes . I went through many Medications and non worked 100%. In 1998 I went in for my left temporal lobe brain surgery
In 2005 I got the VSN put in.
The VNS didn’t work well in my case.
In 2022 I got the DBS put in . I still have seizures . But , my seizures are much better control and have much less seizure .

I did all of these in the name of Seizure Control

@A MyEpilepsyTeam Member
Doctors can even see our auras on the RNS. Anytime I have an aura I touch my head with a magnet 🧲 . When we go see the RNS doctors and neurologist they will find seizure activity sometimes where I had marked an aura. One time I was at the neurologist and they were looking at my brain waves on my RNS. I started to feel an aura but didn’t say anything. The doctors then looked at me and said “You’re having an aura aren’t you?” I told them yes.

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