Topomax- AED intolerance

I have refractory E. I sz daily and have too frequent hospitalizations and status sz's. I have bilateral TLE's, right frontal E, and generalized. My two current AEDs are the only ones out of 12 that I've tried that I've been told are keeping me alive. I'm not a candidate for surgery or the VNS. Not a comforting thought. I have a problem tho. One of these AEDs is causing me to loose the nerves in my feet plus causing me bouts of pancreatitis. I don't want to loose my feet and eventually I will perhaps loose my pancreaus. I can't live without it. Often I have to take insulin because of pancreatitis. It is becoming more severe, bouts of it are becoming more often. I have other health problems also that are concerning but are not thought to be related. It is not a situation that I am uncomfortable with side effects, I'm a woose, or can't gut my way through. I have side effects on what am on now but I put up with it. The side effects I've had with all others are very severe, some are dangerous, some increase sz's, and my doctors have decided I should go off of them. I think I'm a strong person and some of the most miserable I stayed on for over 3 months but it is not a matter of getting used to them. I don't. The side effects got worse. It's not a matter of gutting my way through, I felt I was going crazy, maybe i was. The doctors said no more. I agreed until now. The only hope I have is to find an AED that helps me better. The axiom is that is if 2-3 don't help a person, then probably more won't help either. Yet I'm on No. 13. My AED trials lasted about 2 miserable years. I'm a strong person I think but too much is simply too much. I was relieved when the trials stopped until I started having peripheral neurapathy (dying of nerves) in my feet, which isn't reversable and frequent pancreatitis. My epileptologist hospitalized and sedated me trying to slowly reduce me from my primary AED, place me on another slowly but I had a status seizure every time that was severe. I went home trying on my own with a slower schedule but always it failed. Then no one did anything and I thought they had all given up. This week I met with my new neuro, I've recently moved, and my epileptologist who I trust implicitly. They had conferenced and decided they want me to try Topomax. I don't think I've tried it before but I'm not sure. It's not in my medical records tho. They told me they knew with my history this may not work but they are taking me up very slowly. Currently I'm on a sub therapeutic pediatric level - 25 mg a day. They wanted to put me on 15 mg a day in sprinkles but had none of those samples and didn't want me spending money on medicine I might have to stop taking. I have been very anti AED trial in my thoughts for years but I know now I can't afford that. And who knows, maybe something else will help me more. I doubt it and I don't count on that but I must make another try. My goal is to get on a safer AED for my primary one. I was very satisfied I was listened to and listened myself during my long appointment. I've now taken 2 days of Topomax, 25 mg, and will stay at this dosage for at least 6 weeks, to call if I have ANY side effects. The only thing I've noticed and it might be hypochondria or maybe I should say my imagination but if I move my head fast I feel a little woozy momentarily. But I'm looking for side effects too, so who knows. This is my problem. I have spoken to one person who works at an epileptic center who states that many of their patients take Topomax without problem except for excessive weight loss and if so, they are removed. I did read the entire crimp and several things alarm me. I know they have to list every single side effect that might occur too but they do not say what percentage have experienced these. A lot of the side effects listed are the same as the AED I'm on now. Am I going to deteriorate in my memory, word find? It's bad enough already. It may also be permanenet I'm told. It stated that some people become very cranky. I did tell my husband because there is a chance I won't notice this but I'd hate to have this happen but I don't know what percentage this happens to. So, I used "search" to see how others faired on Topomax but the way our forums work they are necessarilproblem oriented. IOW I didn't read about the people who do well on Topomax, what side effects they do have and that is what I want to know. Can anyone who can take this drug share their experiences with me? I really need and want to know and would appreciate your sharing if you successfully take it. I can take some side effects. I can't go through what I have with others though. I am afraid yet I know I must make a change. thank you. Gretchen