KarenB
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Cint -- as usual - full of good, no-nonsense advice.
I concur about seeing an epileptologist, not just a neurologist. I didn't even know what an epileptologist was, until our neurologist referred Jon to one, but the guy certainly knew his stuff.
I think it's awful that doctors sometimes assume that epilepsy with no apparent cause could be caused by childhood trauma. I would think that idiopathic epilepsy is more likely caused by either something in the brain that cannot be picked up by current brain testing (think about all that we now know from MRIs -- info we didn't have 20 years ago), or by some sort of metabolic disorder or gut issues or autoimmune disease or something along those lines -- would like to see serious study into the causes of what is now considered idiopathic epilepsy, because I suspect that effective treatment might involve treating below the neck.
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I did want to add that when Jon has these "episodes" that don't register on the EEG, but do lead into a "real" seizure -- his oxygen levels drop into the 60 to 70 range when that happens. Would be interested in knowing if that happens with psychotic episodes.
I concur about seeing an epileptologist, not just a neurologist. I didn't even know what an epileptologist was, until our neurologist referred Jon to one, but the guy certainly knew his stuff.
I think it's awful that doctors sometimes assume that epilepsy with no apparent cause could be caused by childhood trauma. I would think that idiopathic epilepsy is more likely caused by either something in the brain that cannot be picked up by current brain testing (think about all that we now know from MRIs -- info we didn't have 20 years ago), or by some sort of metabolic disorder or gut issues or autoimmune disease or something along those lines -- would like to see serious study into the causes of what is now considered idiopathic epilepsy, because I suspect that effective treatment might involve treating below the neck.
***
I did want to add that when Jon has these "episodes" that don't register on the EEG, but do lead into a "real" seizure -- his oxygen levels drop into the 60 to 70 range when that happens. Would be interested in knowing if that happens with psychotic episodes.