a little about me

Hello, I'm a 36 year old Native American female. I've had a seizure disorder since I was about 7 years old. I really don't know what started it but it wasn't until I was 13-14 years old that I started having gran.mal seizures. At the time, I remember waking in an IHS ER. I was transferred to a more advanced hospital, got admitted w/no observed seizures. I was discharged with an order to get an EEG and MRI done. While sitting in the waiting room, I had another gran.mal. Started in Tegretol and was well controlled. Over the years I struggled with titration when I was given generic to brand, changing to Trileptal, then Kepra, and now Lamactil. I felt Trileptal worked the best for me. In hindsight, I really enjoyed life then. Kepra was the worst, It changed me, it changed my mind. I couldn't control my emotions and anger. I got off this about a two years ago. Things have slowly gotten better but Lamactil doesn't seem to be all that effective. I've been seeing a new neurologist for two years now. He seemed genuine until I asked him to fill out some paper work from this foundation. It was an application for a scholarship. You know what really bothered me about this doctor, it was his diagnosis of having... seizure like symptoms to being epileptic then to not having epilepsy. I asked why was I told I have epilepsy. He just basically said it was for insurance purposes and payment. I told him, that's not right. He told me he cant diagnosis me with epilepsy if I have never had any tests done or been observed having a seizure. I felt helpless once again. Well, he ended up ordering another EEG and MRI. I go back this Friday to go over my journal, discuss the results of my tests and decide what to do then. One option was to get admitted to Barrows Neurological in Phoenix, into the epileptic ward. I am super scared of going through with this. I keep remembering when I had seizures in the past.... first, my face starts to move right to left, then my whole head. I try real hard to sit it out and use all my strength to keep still. Eventually, I cant breathe. At this point, I can hear myself in my mind, saying help me help me i cant breathe. But all I hear is gargeling and groaning sounds. I try to get up but my arms and legs feel like stumps. Then everything goes dark. This is when I hurt myself by falling or hitting something. thankfully, I wake up a minutes later. I usually have a massive headache. and end up in the ER, sent home with some Adivan and told to get some rest. I really hope my meds get increased at my next visit, even if its at the cost of being foggy and sleepy all the time. So back to the epilepsy ward. If I go through with it, it'll be until the summer, after I finish my spring semester. The neurologist told me this is the only way to know for sure if I have epilepsy, to see exactly what type I have, and to find out what part of my brain is in disarray. Sounds deep right... well another thing on my mind and it seems this is the best place to discuss this....Do you ever have the thought that you may never wake up again after a seizure. Does anyone else have this fear. before I started going to this new neurologist, I was content with what was going on. I have lived half way through my life. I've done more than most people my age. I've had an awesome career. and I even got over the helpless feeling of not having children. Through self talk, meditation, traditional ceremonies, I've started to change my mind set. To accepting the way things are. As the months have gone by, I've been a bit more at ease with everything. Sounds strange but in a way I'm getting to be more content once again. Well enough of me. I wonder if anyone else out there feels the way I do with my symptoms, prognosis and future treatment. It'd be nice to hear some coping strategies that are out there. Thanks for reading my story.