Post Edited (Yung) : 8/5/2006 6:23:42 PM (GMT-6)
Ouch thats hurtful, I'm sorry to hear that. Not a single specialist could help you out? Man thats not right. I don't know what to tell you but you should keep searching, Don't give up. You have to come up with something.
Yung,
I just moved from Georgia, and I know it was really hard for me to get any help while I lived there. After a really bad night, followed by a few really bad days in the hospital, I ended up being sent to Emory hospital, up in Atlanta, for VEEG, and a better MRI. All my previous tests had come back normal, and though I tried several medications, I couldn't find a combination that would get the seizures under control. Well, the docs at Emory were finally able to catch something on the feed, and solve the mystery AND they ended up writing off the bill. They have a lot of patients who come in w/o insurance, and they have a financial counselor meet with you while you're there, so it can be taken care of before you leave. It might be a good subject to bring up with the neuro.
As for the fear of auras, I deal with that pretty much daily, too. I always worry when I'm out in public, that the auras will become full seizures, and my heart starts racing just thinking about it. When I have tonic-clonic seizures my heart rate will go up to 140 before I black out, so when my heart starts racing with an aura, it's easy to freak out. One thing I've found that helps is to kind of talk myself through it. I don't know if it will make any sense, but when I start to panic, I remind myself that I'm alright, that it's okay to have an aura. I try picturing a really peaceful place, like mountains or a lake, and make myself focus on walking around, looking at the different views. I guess it kind of takes my attention away from my heart racing, and once I'm through it, I know I'm okay for awhile. I can't handle living in fear, so I have to learn to work through it, and pay really close attention, so I can tell if a full seizure is coming on and be able to get somewhere safe.
I don't know if this will help much, but it's just an idea to try. Good luck with the neuro. 
~Heidi Hope~
Hi yung, I too have a sensation of fear as my aura. However, I typically will just have partial complex seizures rather than tonic clonic ones. In regards to your ?, any aura can theoretically spread to involve the whole brain and result in a genralized seizure(convulsions). Also the more seizures you have in a time period does decrease your seizure threshold and make another seizure more likely. It can also make generalization more likely as well. since you are having all these auras it is probably a good idea for the doctor to either increase the dilantin or add a second anticonvulsant.
Hope this helps, kurt
what do you mean "the more seizures you have in a time period does (decrease your seizure threshold)[?] and make another seizure more likely. It can also make generalization more likely as well." the more seizures you have, more seizures will occur? like if you go through it, it'll train the brain to find another way to have another seizure more easily? I'll check with the docs soon about dilantin increase. Oh by the way, They say dilantin is old and has quite alot of side effects. IS there any other than dilantin?
I'm glad it helped. Knowing you're not the only one who deals with something a certain way always helps. I know that's why I like coming to this forum.
~Heidi Hope~