guineapig

rocket56,

31 year old male, right temporal lobe surgery to remove 'gliome' (age 7), Tegretol age 7-18. Medicine free and SEIZURE free age 18-25. Seizures came back again, ranging from abscence (the kind your daughter has) to occasional gran mal siezures. I work at a place with children with mental retardation/autism, so I'm NEVER left alone and always in the good company of people who I can relate to and THEY can relate to me (about having limitations, of course). Colleages have found me in blank stares, moving my hands around in continuous motions for four minute blocks (sometimes I fear what I might REALLY be doing/saying, for fear of some REAL embarassment, but my trustworthy colleagues have told me otherwise). They are very understanding to my condition, because they work around children, some of who are even WORSE off than I.

I have been renting a room from an understanding person who gratiously gives me a living situation where I can live simply and well within my means, until perchance 'the big one' (status epilepticus) occurs. I lack the benefit of having any substantive ties that others enjoy (support systems through family, etc.), but I keep going, as long as God wills it to be. I believe that, due to this person's age (relative to mine), he might not be around as long as I may, so I stash and save what I can, to hopefully be prepared if/when this support system (living arrangement) might fizzle out (due to my own health, inability to work in the future, or perchance something happens to my 'landlord'). Perhaps I might find another support system via the net (when I need it), who knows.

SSI? PLEEEASE! I forsee using up any reserves to support myself for a year or two (if/when seizure frequency/severity becomes such that work is no longer an option) while I hire an attorney to sue the Fed for SSI denial (then maybe, just MAYBE, I could sue the Fed for court costs, back checks, and damages done by their refusal, and recoup my expenses, right? Maybe, maybe in a PARALLEL UNIVERSE somewhere! ). They promptly TAKE from me, every time that I have a work check sent to ME, and a notice twice yearly telling me that SOMETHING is there, if/when I need it (they call it, 'social security'). But when I need it, they will fight me, tooth and nail, guaranteed! What to do? It might be the only possible avenue of support in the future, just plan and prepare (if you have the chance) for an uphill battle all the way, for it WILL be made difficult for you, despite the promises made! I, personally, have decided that there ARE generous and benevolent INDIVIDUALS willing to help, and internet might make for a good place to find them. The LOCAL Social Security Office OR the AVERAGE local church? FORGET IT, until other avenues have been COMPLETELY exhausted. They can send their 'there, there' words over deeds to the eternal hot , I'm tired of it! Acceptance of notions of 'fate' does not mean giving up! Do not go gentle into that good night, I say!

I don't worry about the 'image' problem w/ my seizures, so much as the safety issue. To that end I own no car and commute 8 miles twice daily to-and-from work by bike, and stay in GREAT shape, as a result. I HAVE had a 'passing out' twice on bicycle, fortunately one occurred by an understanding passerby (medical dog tags help, too!). I understand your daughter's situation of friends, many people would rather not be bothered with persons of our kind, out of misunderstanding or ignorance. Daily I see/hear the same kind of treatment toward students with autism, and if perhaps I can't symp/empathize enough with them, I can most ASSUREDLY relate. I, too, am a 'homebody', a reclusive person with no ties outside of work. Sometimes I think that it came from the 'doping up' on medication in my primary years that psychologically helped lead me into behaviors of a private person (abuse done to me as a child probably helped then, as well), who knows. I just thank God for the chance to add four years of college to broaden my mind enough to rationally manage the lifestyle that both my past and epilepsy has dealt to me, to learn to be a little more understanding to persons in plights. It happened within a relatively narrow span of time when I could think better, when I wasn't doped up on anti-sezure meds. Gee, I miss those days !

You might find better help on internet, better than any stonewalling HMO neuro like I have presently (good for, say, writing up drug scripts and using epileptic patients for DRUG experiments, but say the word, "MRI", or "SPECT", and they promptly tell you how the presence of metal from the previous surgery takes away those options. III say, take the metal out, seek out this elusive 'scar tissue' that he refers to as a cause, and 'zap' it with a gamma knife, and say NO to drugs, if I CAN!)

I, too, have considered pseudoseizures, as well, but if HMO neuros are not willing to investigate with VEEG's, ambulatory EEGs, SPECT scans and the like, then they surely will not consider any thorough investigation into pseudoseizures as a possibility, just the standard 'hit-and-miss' drug dance. My latest trick? When the doctor asks me how I've been, I start out with a sarcastic, rhetorical answer like, "I donno, YOU tell ME, doc! " It's proof in the pudding the fact that many examinations have been refused to RULE OUT differing possibilities! If their idea of 'ruling out' is to ask close-ended questions, then they are NOT being thurough!

Best wishes and blessings for you, your daughter, and your grandkids.