I think a little background might be useful. I'm 23 and I haven't been on Tegratol (sp?) for 10 years and I have been (apparently) seizure free. They think the cause of my seizures had been from a fever I had as a child of around 106 and I was put on Depakote (sp? sorry) first for a year at age 5 and then Tegratol through age 13. I say all of that to get to my concern.

Starting in high school I noticed my heart would "skip beats" or race while sitting in class for no apparent reason. With exercise it only got worse, causing fainting spells in gym and an abnormal rhythm for hours later. I've been to cardiologists but my EKG's are always normal. Starting around senior year it disappeared and I never thought much about it again until now. I'm a junior in college and the palpitations have come back. I feel no more "stressed out" than any normal college kid, in fact I'm getting an A in organic chem which makes me less stressed about my classes. I'm really tired of the diagnosis being "it's just stress".

Last semester it got to the point where I saw a cardiologist again because I was fainting in my tae kwon do class (which I had to drop because of it and am really missing). Finally they ran a test that didn't involve another useless EKG. The Echo Cardiogram turned out clean so there's nothing structurally wrong with my heart (which is good to know). I was hooked up to a 24 hour heart monitor but wouldn't you know it my heart behaved like a saint for those 24 hours resulting in little to no data and another diagnosis of "you're just a college kid and it's just stress".

I gave up and things seemed fine but now it's back again and worse than before. I got so dizzy from a spell of palpitations while driving that I very nearly ran into the back of an 18-wheeler driving home this evening. I'm wondering if the medications may have caused some kind of brain damage that makes my heart misfire, because frankly it feels like the heart muscle is trying to beat without getting a coordinating signal to do so. What it really feels like is my heart training for the next Summer Olympics by doing flips in my rib cage. Or maybe my heart is having seizures? I just don't know and I'm looking for anyone with similar symptoms who might have an answer, or who can at least validate me by saying it's not just stress and that what I'm feeling is very real.

I'd say thanks for letting me get that off my chest but I'm not a big fan of puns. (or am I?) Though in sincerity, thanks in advance to anyone who takes a moment to read this.

-Brian.

Hi Brian

It's completely possible that the tegretol isn't fully controlling your seizure disorder. I'd recommend talking with your epileptologist (or neurologist) and tell him/her about the frequent experiences. Be descriptive, open, and honest.

I did see a psychologist weekly for 3 years in hopes of gaining control of my intense anxiety. Panic barely describes the feelings that overcame me. After my 3 years of pointless therapy, I had a nocturnal seizure secondarily-generalize and become tonic-clonic. THAT is when I began to see the light. It took another 2 years for me to realize that I'd been having seizures for many years. Even longer for me to see that my seizures dated back to very young childhood, but they were never recognized by others until I had a "typical- grand mal" seizure. That's when proper treatment began for me. It has been a very long & windy road!

Best wishes to you!
Shez

Hi Brian,
Welcome to the forum! I've had epilepsy for 37 yrs. now and just like you I will be sitting still doing nothing and all of the sudden I will get a rapid heartbeat for no reason I've told my Epileptologist about this and just like you I was checked over for heart problems but everything was fine. I found out it was all related to stress which lead to panic attacks for me and that in turn led to seizures. I took tegretol for many yrs. and it worked great for me but then right out of the blue I became allergic to the med. I also took Depakote and that was one of the best meds to control my seizures (sz.) but it lowered my platlet level so low that the Dr. thought I was bleeding enternally. check your body over and if you see bruises on you skin get a complete blood count done it could be that your platlet level is low from you med and that's what is causing the problem. Also stay away from nutra sweet or any artifical sweetner and cut back on the caffeine because that can cause problems for you while taking depakote. My best advice to you is to see a Epileptologist at an Epilepsy Center which are usually at University Hospitals I got the best help there and took the least meds seeing an Epileptologist compared to seeing a neurologist. Here's wishing you well and May God Bless You!

Sue P.S. Try taking vitamin B12 1000 mcg. a day it calms the nerves
down and reduces seizures.

[QUOTE=Porkette;486063]Hi Brian,
I also took Depakote and that was one of the best meds to control my seizures (sz.) but it lowered my platlet level so low that the Dr. thought I was bleeding enternally. check your body over and if you see bruises on you skin get a complete blood count done it could be that your platlet level is low from you med and that's what is causing the problem.
Sue

Interesting Sue. Depakote worked great for me for 2-3 years and then I suddenly had to be pulled off and put onto it's opposite (phenobarbital) due to extremely low WBC levels. My neurologist, at that time, said that it was very uncommon, but I've met a few others who've had the same thing occur.

Shez

Hi Brian, and welcome to NeuroTalk! This is such a great place to hang out with many caring and helpful people.

Here is a link to the Epilepsy and Seizure forum.

http://neurotalk.psychcentral.com/forum11.html

[QUOTE=shezbut;486170]

Hi Shez,
I'm sorry to hear that you had to go off the Depakote also. I also had low white blood count level and when I was put on Depakote it had just come out and I was like a guniea pig so the Drs. could see how it would effect me. It was later that I found out that it could get into the liver and 43 people passed away from liver failure. Depakote also caused me to have a medical form of anorexia I would eat 3 meals a day along with snacks but the drug caused me to lose 70-75 lbs. in just 4 months and I went from 145 down to 80 lbs. Ever since then back in the 1970's I've had a hard time keeping my weight up to normal no matter what I eat. Just this past month I've lost 8 lbs. and I haven't even tried to diet at all. Here's wishing you well and May God Bless You!

Sue

[QUOTE=Porkette;486612](((Sue))) I'm sorry The Depakote had a lasting effect upon your liver?

I was taking senior finals in college during my med change. I felt fine, and practically begged my neuro to let me stay on Depakote for just another week. He said, "Fine, if you want to end up in the hospital!". Errrgh - I made the switch as recommended. But I always wondered if he was just completely paranoid or if they had the wrong blood !

Many years later, my epi confirmed that my WBC level was very low & the change was necessary. But I still wonder why I felt fine when my level was checked, if the WBC count was SO low?? Not that you have the answers, but you probably know a heck of a lot more on that med than I do!

Best wishes!
Shez