Post Edited (Phoebe) : 1/27/2005 11:28:44 PM (GMT-7)
((Hugs)) I can relate to your frustrations. I'm 34 and had my first grand mal when I was 1 that ended me up in the hospital. I had no other sz's until I was 6 and started having complex partials. Mine went years untreated because the neuros my mom took me to could never catch any sz activity on an eeg and they were hesitant to prescribe any meds without an abnormal eeg. So I went years suffering sz's without any treatment. When I was 19 I had another grand mal sz and finally got on meds. When I was 22 I had my third grand mal and ended up in the hospital again. At that point they took my license. That was awful. My husband had to drive me around everywhere and I had to rely on friends and family for everything. I've had two brain surgeries to control my sz's and as of yet nothing medically has been able to get my sz's under control. I also have 3 girls who are 10,7 and 4 and it makes life difficult sometimes because of my inability to drive. And an Epileptologist is definitely something you should look into. I never got any help until I found mine 7 years ago. He was a lifesaver. He's the first Dr that ever aggressively pursued getting my sz's under control. He recently retired and til the last day he saw me he continued to want to help get my sz's under control. There are so many more treament options available now but alot of times it takes getting the right Dr to make those options available to you. I hope you're feeling better and just know that we all can definitely understand what you're going through.
I just wanted to add that I too never knew there were special docs that only delt with this problem. I have went for years with nuroligist's just saying I don't know why you have seizures, here take this..... Well 4 docters later and 5 meds and lots of years, I have a nuroligist that has helped me more than ever. First he to has taken his turn putting me on diffrent meds, but my apt last week he said that we have pretty much tried all the meds we can try, right now all we are doing is ruining my memrey( i can't spell either)!!!!!!So he said he was sending me to a specialist!!!! I was shocked, he said that nuroligist can only give you meds, they really can't go farther that that. So I have an apt with a specialist on feb. 17th, to discuss vns theropy and surgery. So maybe you should ask your docter @ vns theropy... if you look it up on line there is even a phone number for a consult and info on vns theropy.
lots of huggggggggggggssssssssssssss..........................