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four years and still having sez. HELP!!

Thu, 06/07/2007 - 15:17
I don't think I can take one more day of this. I was diagnosed with tonic-clonic and absance sez. four years ago and we have yet to find a combanation of drugs that stops them completly. My docters seem to be okay with this, now am I crazy or just selfish to want ALL my sez. gone not just some of them?! I thought I was getting better and was trying to go back to school, but the other day I was walking home and one seconde i'm on the sidewalk the next thing I know I'm in the middle of the street with a car coming at me. ahhhh! this is just to much, I have been serisoly considering suicide for the past month, I know thats not the answer, but I can't take the headaches, the blackouts, the bruises, sore muscles, and just overall tierdness anymore. So I guess basicly what I'm asking is does anyone know a specalist willing to get to the bottem of these sez.?! not just say "well, sometimes we don't get full control" and leave it at that? Thank you, Janice

Comments

Re: four years and still having sez. HELP!!

Submitted by SunflowerPower on Thu, 2007-06-07 - 15:42
I’m sure that everyone at this forum can empathize with you. I’ve been struggling for 9 months to get a diagnosis, and I still don’t have one yet! In that time I’ve encountered neurologists who are compassionate, useless, rude, condescending, arrogant, paternalistic, knowledgeable, authoritative, mistaken, kind, and wonderful. They drive me up the wall! If you’ll notice, most of those descriptors are negative. But by far, the worst doctor of all is the one who gives up on you. If there is anything that I’ve learned though this frustrating and heartbreaking experience, it’s that you have to fight for your own health. No one will do it for you. You did not become a doormat the moment you took on the role of patient. You have to be both cooperative and assertive with your doctors. You need to make it clear to your doctors that your goal is to be seizure free. If they don’t listen to you, then find another doctor who will. Don’t worry about “doctor hopping.” You need to do what ever it takes to take care of yourself. It’s tiresome and exhausting, but you can’t quit, because your life depends on it. Contact your local epilepsy foundation chapter at http://www.epilepsyfoundation.org/ and see if you can get a referral from there. Pay attention to the doctors who serve on the advisory board. Those doctors are likely to be very proactive about helping those with epilepsy. You can also join a local support group, if you have one, and ask the other people in the support group who they see. In the meantime, please visit a psychiatrist and psychotherapist to find someone to help you deal with your depression. If you don’t like the first psychiatrist you see, then go find another one! The best of luck, SunflowerPower “Just when the caterpillar thought the world was over, it became a butterfly”

Re: four years and still having sez. HELP!!

Submitted by spaznurse on Thu, 2007-06-07 - 18:17
I feel very fortunate that since starting my meds I have no more TC seizures, only partials and auras. I also have some side effects to cope with (all the AED's are famous for these, eh?)There are lots of good folks here in this forum who are uncontrolled and my heart goes out to you all. At any time I know I may also be on the same road. The only advice I can I can offer you are likely already doing: look hard at triggers, excitotoxins and stimulants in your environment, challenge your epileptologist to the next level. If yours won't help you, ask for a referral. Usually the university schools (where the medical schools are) are up and coming with research, etc. so check our your local schools of medicine. Are you a candidate for surgical intervention?I have heard this can help some uncontrollables. My best wishes are with you. Spaznurse

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