Hello everyone... I am new here and I am looking for some answers. I live in a fairly small town with limited neurologists. I have had the same doctor since I was 13 and am now 37. I used to take depakote but when I got married at 17 my neurologist put me on dilantin. He said this was in case I got pregnant, dilantin doesn't cause as many birth defects as depakote does and he also put me on folic acid to keep as much dilantin out of the babies system as possible. I have since had 4 children, all very normal with no issues. Over the years my levels have gone up but mostly down causing seizures. When the level is up, I feel so weird. I almost feel like a drunken sailor! I also get this feeling that I cant breath very well. I try so hard to get a deep satisfying breath but I can't. It sometimes makes me really scared and it even makes me cry because I cannot control it. I just want to feel normal and my doctor is old, I think he is going senile! On Sunday July 22, 2012 I woke up, did normal daily duties, went for a walk with a friend and when I came home, I felt like I was going to die! I was suddenly confused, couldn't breath, and very dizzy. I even threw up. I went to the E.R. and they checked my level. It was at a 33. Normal is between 10-20 (I am sure you all know this
). The E.R. doc told me to skip 2 days of dilantin and come back for a check on Tuesday July 24, 2012. It was 26.7. My regular doc was out of town til Thursday July 26, 2012 so I called the E.R. to find out what to do. Well, they are pretty much useless at the E.R. when it comes to finding something out over the phone so I made the decision to not take my dilantin for 2 more days since that was when my doc would be back and my level was still above therapeutic. For me, I work really well when my levels are around 10-12. It took 2 days to go from 33 to 26.7 so I figured 2 more days and it will probably be around 18 to 19. Even if it went a bit lower, I would be ok. My doc finally called me and I told him what I did and he said that was fine. He lowered me from 500 mg a night to 400 mg a night. This was last Thursday July 26, 2012. I have been taking 400 mg a night for 4 nights now. I felt great yesterday and the day before. I woke up this morning feeling like it has shot way up. I called my doc and he still has not returned my call. I am so frustrated! I feel horrible right now. I just don't know what to do anymore since my doctor should have been in the grave 20 years ago and I don't have any other options until a new one comes to town!