Post Edited By Moderator (HALO) : 9/29/2006 4:15:53 PM (GMT-6)
Post Edited By Moderator (HALO) : 9/29/2006 4:20:10 PM (GMT-6)
it just, seems so useless. over the years, how many times have i called and told em this that and the other, and....nada. they'll send me for a blood test, or maybe an eeg. all of which will come up normal. atm, my neuro that i've been with since this started, is more and more of a house wife and less of a doctor. which is all well and good for her family, but kinda blows for her patients! there's no answering machine, only an out going message saying when the office should be open! lovely! hence the switch to the new guy, but i can't get in touch with him, untill i've been to that hospital. i don't have a hospital card or records there, and it's seriously out of the way...i can't even go untill i've gotten the apointment...no sooner than january. so no calling him either.
i can and will try to get in touch with the current one, but no luck thus far. and it seems useless on top of that, as such time has past and i can't even remember most of what i was feeling, or what have you. i don't even remember writting these posts in truth! which is odd as well. if anything, i have a great memory typicaly!
i feel like i'm spinning my wheels and have no one to turn to who can actually help me. in the nearly 13 years i've had seizures, i haven't even come close to a diagnosis. it took 8 years for them to say, yeah, okay, you have epilepsy. i'm terrible with meds. seriously. the side effects are often...seizures! and i can't stand having sz after sz on top of being shaky and tired etc. they play with my meds, doses, types etc, and it just continues.
i'm completely normal except for the seizures! my eegs, mri's ct's, blood work etc...normal.
i'm adopted w no medical history. i've had many concussions throughout my life, a drinking problem back in the day, issues with malnutrition .... lol in short, it could be any or all or none of those reasons, but for the moment, they know nothing and my quality of life slips a little bit each year. i'm ranting here lol i'm sorry. i dunno if i'm angry, tired, depressed, annoyed, frustrated, or all of the above. but i can't stand it anymore!
post edited due to rule #11
Post Edited By Moderator (HALO) : 10/1/2006 10:24:31 AM (GMT-6)
I know how you feel. I am also adopted with no medical background. trying to get seizure control is basically a game of russian roullette. It's trying to find the right combination and dosages of meds that work for you...and guess what? One of the side effects of moist AED's is seizures. Sounds weird I know. The drugs they give us to stop siezures may cause seizures. Give it time and be patient with the meds. If you can't get in touch with your new neuro or get to the hopsital. You might want to consider another neuro. I know that is inconvenient...again. But, if that's what you have to do....then that's what you have to do. Also, I suggest you keep a daily log of how you feel, what you eat/drink, when you have a seizure, If someone is with you when you seize. Have them right down what you were doing right before you seized and what the seizure looked like, and howlong it lasted. Do this every day. I suggest a pocket sized notebook. That way it is convient to take with you when you're out.