The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

New here

Mon, 04/24/2006 - 06:09
Hello everyone. My name is Rob. I'm in my mid 40's and I live in Germany. I was diagnosed at birth or shortly after birth as epileptic, along with my identical twin. We both took dilantin until we were 11 or 12 or so, at which time, we started to have siezures again. The problem was, no one knew that they were partial complex TLE that mimicked paranoid schizophrenia. My twin had it worse than I and ended up gettin put on thorazine, which led to a suicide. No one knows if it was intentional or if it was the drug. I didn't know that I was having seizures for the longest time. It wasn't until the Internet that I was able to start researching why I was eating those little pale yellow triangle-shaped pills every morning. The seizures started to get progressively worse as I got older. I'm not sure if this is common or not. Mine are triggered mostly by sounds. I would go into an aura state of deja vu that one time lasted nearly two weeks. I was seeing a psychologist at the time and he said "good for you." I've been kind of an outcast from family and an outsider at any jobs I've had. I'm fairly intelligent, so I've ended up doing a lot of university work, since university seemed to be the only place I could fit in. It is the strangest thing to experience schizophrenic symptoms but still be cognizant, and at least in university, all I had to do was take notes. The good news is that I have married a German lady and moved to Germany where the health care system is quite excellent. I've gone to see a neurologist who promptly put me on Ergenyl Chrono (1000 mg/day) and within 2 days I felt normal, which is kind of funny, since I didn't know what normal was to begin with. I have been taking it for a little over a week now and I am noticing some changes. I am having to deal with emotions on a completely different level, but it seems tiring at the same time. One of the major changes that happened almost instantly was that I no longer had paranoid symptoms. In fact, I was ready to be around people and actually make emotional contact with them. I'm not trying to make this out to be some kind of miracle; I know there's going to be some challenges, but I am amazed. That's my story. There's a lot more, but I will just wait to see who responds and what anyone has to say about my experience. Rob

Comments

Re: New here

Submitted by lilseizures on Mon, 2006-04-24 - 22:40
Hi Rob! My name is Brenda and I live in the U.S. I am 41 and started having petit mal seizures at 12 years old and generalized tonic- clonic at 28 years old. The only drug I have been on until about two weeks ago is Depakote 250mg 4xs daily. Now my doc has added Topamax because of breakthrough seizures. Your story is so bittersweet. I am truly sorry about the loss of your twin, but the successes in your life make me proud and I too am new to the board. Congrats to you, for your wife and what sounds to me like your first time being free. Enjoy your life and love your wife. Sounds as if you deserve the best.

Re: Re: New here

Submitted by andy m on Wed, 2006-04-26 - 09:42
Hi Rob, Welcome on board. I live in England and have recently joined myself. Check out my blog and you will see that I've been down the same route as you in a way, spending years feeling like an outsider and rebelling in stupid ways, booze, drugs etc. Although I haven't finished updating it I am very much at the same stage as you now. I have a clear mind for the first time ever. My anger and paranoia have gone and now I'm trying to claw back some of my life that I wasted for all those years, heck I'm even studying again to try a gain back some of the education I lost when i was kicked out of school. Like I say welcome and good luck with the rest of your life and it's nice to have someone in the same timezone as me (give or take an hour). Andy.

Re: Re: New here

Submitted by RANDYSLOVE on Fri, 2006-04-28 - 15:26
Hi Rob. My name is Wendy. I live in Mississippi and I started having seizures after I had my first child in 1997. Doctors now think I has them as a child and I didn't know I was having them. I have recently been forbidden to drive. I am now seeing a new doctor and hopefully will soon figre out the causes behind them. I am on 350 mg Dilantin a day now and have been on this for 8 years. I was taking Topamax last month but had side effects and am now taking Dilantin again. I am glas to meet you and wish you the best.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.