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Trileptal or Tegretol

Sun, 08/06/2017 - 16:00
I know it's a long post but please bear with me... I took Tegretol for 25 years and during that time I had a total of around 5 full seizures. I had frequent auras, about once per month and I would have several in one day, but I didn't know what they were or that they were caused by the epilepsy. They were just a funny feeling that I would have, but I thought they were common. I made the connection to the epilepsy when one of those "funny feelings" led to a full seizure for the first time. When I went to the neurologist, I described what I felt which is nearly impossible to do, and it was by-the-book identical to what a partial seizure is. Because I didn't know what these were for so long, my dosage had never been increased to address it. When I had that seizure that was the wakeup call, my doctor put me on Carbatrol and increased my dosage. The auras would come and go, but they did get better and I didn't have seizures in a very long time. About 5 years ago I had my first seizure in a while. I admit that for several months, or maybe over a year, I wasn't being very good about taking my medication. In addition, because of insurance issues, I got this generic brand from a pharmacy I hadn't used before. I took those for about 2 or 3 years. One day at work I felt an aura coming, I went to hide in the bathroom in order to avoid interaction and woke up in an ambulance some time later. I went to a neurologist about a month later and the first thing he did was switch me to Trileptal, claiming that it was a more "modern" version of Tegretol. The seizures didn't go away. In fact, in the last 5 years I have had about 4 or 5 more seizures; more frequently than I ever did before. Every time I go to the neurologist they increase my dosage, they added Keppra to the list, and are trying to convince me to have surgery. I wonder what has made my epilepsy progress so much in the last few years. What could be the trigger? About a year later I had another seizure. To make a long story a little shorter a lot had happened that year and I was depressed, and in addition that day I was stressed out because I had a lot of work and was traveling two days later. I went back to the neurologist when I got back and everything seemed fine; the only explanation that they had for me was that it was caused by stress and anxiety due to everything that was going on. They recommended to leave the job that I didn't like and was stressing me out so much. I've been trying to find a pattern to see if there is something that triggers the seizures but I can't find one. They seem to be pretty random. Just recently I was thinking about it again: what has changed in the last 5 years that is causing this to happen? Well, I'm living on my own, but I didn't have seizures when I was in college also living on my own. I'm working full-time, but my whole life before that I was in school doing homework and studying until midnight. I go out late once in a while, but not every weekend and the seizures don't occur when I go out; I've had them on a saturday after going to bed at 9pm the night before and just relaxing at home all day. Something has changed... Then it occurred to me that one of the changes that took place 5 years ago was switching to Trileptal. My doctor changed my medicine after just one seizure, and since then I have had more. They claim that since they are essentially the same type of med, if Trileptal doesn't work then neither should Tegretol. Then why is it that during the 25 years that I took Tegretol did I have fewer seizures than I've had in the last 5 years? Is it a coincidence? Is there a chance that my body actually responds differently to Tegretol? I haven't brought this up to my doctors, but I'm sure they'll say that it is unlikely. There has to be an explanation. Maybe I should give Tegretol another shot to see what happens.

Comments

I say give the tegretol

Submitted by Epilepsy_Warrior on Sun, 2017-08-13 - 04:00
I say give the tegretol another shot! That, and look into seeing an epileptologist maybe? Neurologists have treated me like a guinea pig my whole life and didn't really know what they were doing. That's when I found out they really dont know.. They're just general brain doctors. Not seizure doctors. I've been on 14 different meds in just these 23 years of my life.. Until I saw an epileptologist who recommended surgery and it was the best decision I've ever made. Now I'm only on lamotrigine XR and I have virtually no side effects :) although I do have a seizure like once every few years like you kind of. But before the surgery it was way worse. You should definitely look into seeing an epileptologist instead of a neurologist! I wish you the best of luck and God bless :)

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