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Very interesting info Cint and P-funk. Cint, if you don't mind asking - what exactly would the seizure frequency be for a doctor to determine that your epilepsy is refractory?
P-Funk, so you didn't literally SEE yourself sitting on the side of the road; you felt like you were? In terms of visual auras, I've heard about things looking bigger or smaller than they really are, lights in the corner of eye, flashing lights. I wonder about some of the other visual auras people get. Do people ever see objects that are not just distorted, but not even there? Aside from lights? The bad smells seem to be a MAJOR thing for people.
 
Ghost Writer said:
Very interesting info Cint and P-funk. Cint, if you don't mind asking - what exactly would the seizure frequency be for a doctor to determine that your epilepsy is refractory?
Click to expand...

I was told refractory E is trying two or more meds that failed and more than one seizure per month over a period of 18 months.

Mine were well over that. :( Nothing has stopped my seizures completely. I may go 6 months to a year without and then, out of the blue, they're back.
 
Some people with temporal lobe E have visual auras. I've had several auditory auras before I went into a bad TC seizure.
 
Yah, I didn’t literally see myself outside it was more a hallucination of my proprioception.

One sight related aura I had was when I was about 5 or 6. I took a baseball to the eye. On my drive to the doctors I noticed all the house looked small, really small. So small that a person could barely fit in one. It was like driving through a town for the vertically challenged/little people. Years later, I found out it was a type of aura. That experience fascinated me for years as did other childhood auras. I asked my doc if that baseball incident could have caused my E. He said maybe, but doubted it. Having E means you hear a lot of maybes. There just hasn’t been enough research done.
 
I bet that experience really threw you for a loop. It really does seem like there are always
maybes when it comes to this. The brain is such a complex organ Thank you so much for the info P-Funk.
 
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