Evoked Potential(s)., Curious if others have had htis test

My official diagnosis is nonspecific familial epilepsy. IOW it's inherited, boy howdy is it inherited, but there is nothing according to an epileptologst we all see, and a geneticist that can tell us why we have such a heavy incidence. My 9 daughters either have had or most of them are of child bearing age and this is of course an issue to them. Not that they won't have children because of this but responsibly to me, it is something to think about We also have other inherited condnitions so the soup thickens. I frankly sz a lot. I'm also unable to take AEDs except for the ones I'm on because of severe side effects. This is listed as one of two reasons people are refractory. They are very severe side effects too, intolerable. All of them but the 2 I'm on and obviously they don't control me and now they can't stabilize my blood levels for some reason. Thankfully I have two terrific doctors so I'm covered there. I think at most my AEDs slow things down. Finally on trial No. 15 all decided, which I couldn't seem to start with my husband's very bad health, after I had a near nervous breakdown thinking what I'd go thru again, my neuro said no more. My epileptologist had 2 years earlier. I've had a lot of unanswered questions. I haven't minded so much but my children, now a grandchild and cousins have wanted answers because they're affected with the same questions. About a year after I was diagnosed I had cluster dropping for about 2 days and smacked my head on hard objects enough I got two skull fractures and my brain bled and swelled. As it happened my platelets, which help you clot blood were extremely low, probably from one of my AEDs. I had 2 repairing surgeries to fix the fractures, stop the bleeding, tense moments wheb my brain swelled and lost a tremendous amount of function. But with dedicated therapists such as physical, speech, occupational I regained almost all of it back,not quite all but I'm satisfied. Two years later I started having troubles again and had to have another surgery - making three. That wasn't lost on me. The first time I was in a coma, or in and out, and it was harder on my family than me I know, but the third time I definitely felt like sh**. It helped but without going into all the physiology, it didn't "cure". It did help alot. Now? That kind of sz is coming back strong and it's intolerable. It's not just the sz too. I feel excessively weak, nauseous and it occurs every evening for about 3 hours, then it subsides. Why, no one knows. That is a LONG 3 hours tho. I'm washed out all the time and that really bugs me besides the implications of it. I have been resistant to testing but finally it got so bad -I've either started testing to see why I have these again or maybe I just had one test. I'm not sure at this point how much info they got, a lot I know, but will it be enough? I KNOW I'll have to have that scar removed tho. It's not a for sure,but nearly so and I think I'm fortified for it. What I dread is the WADA test I was told I have to have first. I doubt it but I'm determined this time not to duck and run - I think. Anyway I had a noninvasive test,3 ouit of 3 EP's VERY PI, preceeded by an EEG (don't the "oldies love that new glue?) by specially certified EEG techs certified in Evoked Potentials. Gosh they were good, also preceeded by an MRI and CT scan to visualize this scar whiuch frankly they say is large. The question is, does this scar which is large, cause the seizures. They think so, but the last surger was not totally successful and now it could be something elsealtho nothing else showed up. Thus, I had the PE tests, all normal. The only other thing is my blood levels are perilously low. That's been adjusted and will be watched fornow weekly. Usually,or for at least 2 years constantly they were lethally high, always tended to be too high and I take a subtherapeutic mg amount of this medication. All EP's were normal BTW but my EEGwas not. They found at last my focus and got a lot of info from that. The scar was that was operated upon the third time? It established a blood supply with my did and has again established a blood supply that interacts with my bra8n brain in a very bad spot. That's what they think the problem, might be. They got most of it stopped on the third surgery, or I should say enough to stop my symptoms, or slow them way down most accurately, but wanna see me bald after 3 surgeries? Me neither.This somewhat jumped on me. I was going in for my annual EEG when I was called and given new instructions and told why. There are 3 tests I believe to the Evoked Potentials test and I had all 3 which I'm now thinking is unusual but I had reasons to have all three. The most uncomfortable thing about it is I'm so photosenitive but it was decided to do the strobes for as long as I could take it, which really I produced,predictably,an instant sz and thinking aboutit maybe they left it on longerthan I thought but they got a lot of info from that so maybe I can rid myself of this damnable, pardon me, photosensitivity. For the FI0RST time they found my focus. They've never found it before, except my last clunker of a neuro thought he saw it- and it turned out to be in the wrong place. From that they could extrapolate a lot of data and again the worst of it was I was bored to tears. It's not invasive IOW. However I had a not long but I think very deep t/c before the test. My husband took copious notes. I talked to my neuro several hours later and they gave me a little sedation to get through it. Today I talked to my epileptologist who is going to read it. He was consulted often on the telephone during it or it might have been the neurosurgeons of his too. What I'm wondering is if anyone else has had this noninvasive test and if so, did you too find out a lot of unknown information. At least it was to me and directs my doctors where to go from here. They decided it was topo dangerous to hypventilate,so I didn't do that. From what I described did you have similar experiences? I reallky sz'd and sz'd with those blasted strobes, usually they skip those. Did you find out useful info? I'm nearly sure I'm going to have to have that scar removed but it's over my speech/writing center it's thought and that is a problem. If anyone still knows me when I was recoring from that you'll remember 2-3 word sentences at best and I still have problems with syntax but I consider that a small price or it could be a result that English is not my first language. I choke at times but still there was a time I dreaded drinking anything so I came a much longer way than anyone thought but will I again? That really scares me. OR, maybe for those around me it isn't so bad if I can't talk -lol. I'm ready to get this fixed I really feel cruddy every single evening and have for a month but it's been building up to this. I'm sure others have seen my PI posts and I know this evening I attempted,unsuccessfully to join chat. If you have had it, and I've never heard of anyone mentioning it,would you mind at least stating it did or did not help you get useful info. also if yoiu found tghe test noninvasive,more boring for hours as I did or was it different? I don't know why I need to know. It did prove or show maybe that my EEGs prior to my accident were either false (probably) or changed. Thank you for any info if you have it. Gretchen ]