In a quandry and fear - AED trials

I would really appreciate some input. I've vascillated over this problem off and on for several years and here I am again facing it. I'm on both the sides of the fence. Today my neuro called me and made me reschedule my last cancelled appt. I cancelled it in part because I just don't know what to do. My BIG problem is first I'm not controlled and I sz frequently. Worse probably I have a lot of status sz's. Just to give even a fuller picture I don't breath well or at all during status sz's, even nocturnal sz's, and my 02 saturations get dangerously low. I've also had full resuscitation twice. Parke-Davis who is the manufacturer of one of my two AEDs has told me that they no longer recommend it for long term use, and it's my primary AED. Long term use wasn't defined but I've been on it now for I think 8 years because I'm not able to get on anything else due to side effects. I've read several places that one of the two reasons for intractability is inability to take AEDs due to severe side effects. That would be me. And for all I know no AED can get me better but so far I can't know that because I can't get even close to therapeutic level on any other AED because I start experiencing severe side effects on every single one I've tried. About 2 years ago after exhausting everything else my epileptologist had a sit down with me and told me he was no longer going to put me through AED trials. He said or maybe I read this, that if 3 do this to you, then the rest will too. I know more have come out since then so I don't know if that still holds. I was relieved beyond relief when he told me that tho. I hope to not sound like a whiner or being in the pity pot but the reality is I don't just feel uncomfortable on other AEDs and I don't get used to the side effects, they intensify plus I have experienced horrid things on many of them,which continues the longer I'm on even a very low dose. I've developed a real AED trial phobia. I'm seeing what I think is an excellent neuro now but once again, he's telling me I just can't continue sz'ing like I am particularly with the dangeorus nocturnals I'm having and blah blah. I KNOW it but dog gone it, what are my options? I just failed my 14th AED trial. It took me weeks to get over some of the problems I had on this one. But now he wants to start me on the 15th and told my husband there is this huge amount of AEDs I can still have trials with which to me sounds like torture, I mean what kind of life is that? But I pledged to him I'd hang in with all of this several months ago and I had the strength to battle through these side effects and I meant it but after that last round, my resolve is dissolving. On the other hand what if there is one out there that can help me? Or, I read what the mechanism of action on a lot of these drugs are and it's states - unknown. Well, good grief these are strong brain drugs and they effect my coordination, psychologically, sometimes have increased my sz'ing, I've had hallucinations, can't wake up, can't stand up, it's a nightmare. But then I start thinking I owe it to my family to keep trying because they've been so supportive and I know how hard this is for them too. I also feel though that what I'm taking is as good as it gets and I accept that, whatever comes around. That's taken me years to get to that point too. My epileptologist and neurologist work together as my epileptologist is too far away to see regularly. I've called him and talked to him about it and he's said, there's no question I sz too much, he hasn't been able to find a way to slow it down but he felt it should be up to me if I want to go through anymore trials because he couldn't say if any of them would help me. I asked him if he could give me some idea what I should do and he said no, there were too many factors to consider. I don't want to alienate my neuro by saying I can't take this any longer and there is a psychological component here too. I'm really afraid what these horrid side effects I have are caused from and what they might be doing to me. Plus, I'm really afraid of what side effects I'll have next. The last two I've tried I refused to think about side effects and I do think I had a real "can do" attitude as much as I could and put up with the beginning side effects, didn't complain but both times when the dose was raised it was a nightmare. I barely remember two whole days, the last two days I took Topomax at only 50 mg. Any suggestions? Now I'm stuck, I have to go to this appt and I know I have to decide do I stay where I am, in a constant dangerous zone or keep trying things that are frightening me and make me so ill? I don't know what to do and the whole internal debate is making me very anxious,all the time. Plus, just to add in, I am so sick of having to explain, I sz every day, I have a lot of status sz's and all of that. And it chronically comes up, that I feel like I have to defend what I've accepted, but I don't know how to say to any others - it's not you, it's me, and I'm okay where I am. Darn't. Gretchen