I am 33 years old and writing from the UK in the hope of possibly gaining some progress/information in the treatment of what appears to be drug resistant epilepsy.
Since June 2010 I have been diagnosed with epilepsy due to suspected encephalitis. (However this was never confirmed and no autoimmune virus found )
The frequency of my seizures is between 1 and 4 a DAY.
The types of my seizures vary anything between conscious, semi-unconscious and unconscious. Left side, right side. Partial and generalised. They last sometimes 30 seconds, 2minutes 4minutes. Sometimes requiring oxygen and hospital treatment.
However, not photosensitive or absence types.
I have had all the scans available. All of which have shown no evidence of tumour etc.
There appears to be no focal point (which is why I didn't really want to look into surgery).
I am currently taking Lamotrigine, Zonisamide and Clobazam. All of which I have decided to slowly come off and see what happens because no progress has been made.
I would really appreciate any feedback or information on research from anyone.
I believe I am a bit of a special case!!