Wow! Thank you for sharing. I really really do appreciate this. As I mentioned before, I think there are some decisions to make and I hate being here. In the surgery shoes especially being a stroke survivor. I do want to also mention that I was on the list using Xcopri. Meds do work differently for EVERYONE. Number one, I had two seizures and a serious Grand Mal. Two, and what frustrated me even further was that they wanted to charge me $800 per month. I did not fit certain requirements for help with that they thought because of many stupid criteria. So.

What were you being tested for, and why were they trying to create seizures? The only time that I was taken off seizure medication, was to do video EEG, as the doctors were preparing me for a right temporal lobectomy, brain surgery.

If the previous medication was controlling the seizures. I would ask for that specific one again and stop taking the new one. Doctors always switch medication thinking than guess what will stop you from having seizures all together. But more the actually make matters worse when they this.

I wish I had gone to John Hopkins first! Their MRI got the true focus.
I have had similar problems in the 90’s second surgery but they put me on the correct medication. Seizures were occurring still. The first surgery they felt my focus was was in the temporal lobe. Still having seizures.
John Hopkins found a deep focus. They told me if I was there first I would be seizure free. Now I have more sz foci in hippocampus and temporal lobe. I went to UCSF and now on Xcopri and Onfi. Seizures controlled!

Thank you for asking. Even being on meds, I’m having seizures at least every other day. Sometimes it can be four or five a day and they are not small. They were trying to create seizures to map exactly where they started on the brain. This way they new two things. Options that they had to handle the seizure, and if in fact any of those were going to work. So……. There is more data that came from this though and I would HIGHLY recommend this past procedure.