Hello! I have made a few posts, but I wanted to introduce myself and see if I'm the only weird case on this board. I have only found 1 person so far that is similar to my case.

Here goes...I just turned 21, and I just had my first seizure in June 2000. However, it was status epilepticus. I was in the hospital on a respirator. I do not remember anything that happened, and I was unconcious and unresponsive for about 15 hours. Since then, I have had only 7 more seizures, all of about the same seriousness, minus the respirator. I have not gone to the hospital every time. But all my seizures have left me unconcious for at least 12 hours. I had my last one on Thanksgiving Day (Nov. 23) and I was out for 21 hours. I was in a haze for about 4 days, though. I have been on Dilanton, Trileptal, Lamictal, Depakote, and I am allergic to them all. I have been seizure free for almost 3 months. I am now taking Keppra 500mg twice a day and Topamax 50mg twice daily, though I am in the process of increasing to 100mg twice a day. All the EEGs, MRIs, and CATscans came out normal, and there has been no cause found for my seizures. No head trauma, no tumor, no cancer. I'm sorry this is so long, I'm just curious if there is anyone with a similar case, or am I just a freak?

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"Life is what happens to you while you're busy making other plans."

~Beth

LOL. :-) Why do you think your case makes you "a freak?" Your seizures are pretty severe, that's for sure, but there are many, many in this country with similar stories, if not worse stories. You are definitely not alone.

What are you doing to figure out what went wrong? Other than taking a (large) handful of pills every day, are you trying to do anything to prevent the seizures?

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Mark Yannone
mjyannone@aol.com

Oops....let me correct that typo. I meant a freak case. LOL. I can imagine I'm not the only one like this, and I'm looking for those "similar stories". Someone I can relate to.

As I mentioned, I have been seizure free for about 3 months, and believe I am controlled. Besides just taking the pills, I have been trying to beat the side effects. About 6 weeks ago was the first time since June that I actually have felt "good". Definition of "good" to me is getting off the couch, washing dishes, and actually leaving my house to do something other than go to the doctor or hospital. I am currently looking to go to summer classes for college to catch up and perhaps seek a job again come August. The intensity of my seizures and the side effects of the meds have cost me my "life" as we call it. Hopefully I will get my drivers license back end of May. I am even going for a second opinion after all this time in a couple weeks to see if someone else can see something my doc might have missed on all the tests I have had done. I don't know what else to do, as I have no idea where the seizures come from. They have never happened in the same way or in the same place. Any suggestions?


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"Life is what happens to you while you're busy making other plans."

~Beth
Babyruth80@aol.com

Before your first seizure, was there anything in your diet or lifestyle that was not healthful? For instance, were you sleep-deprived? Did you eat a lot of junk food (what kind)?

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Mark Yannone
mjyannone@aol.com

I had epilepsy for over 27 years. I always have had normal eegs, cat scans and mris excepts for one eeg a couple of years ago. I have always been told it is not a big deal if your tests come back normal. Many epilepsy patients don't know where there epilepsy came from. I never knew where mine came from. No birth injury, no head injury, no accident etc.
I to am also alergic to dilantin, depakote, and tegretol. I am on topamax. I have been on neurontin before also. 10 to 15 years ago when I had my alergies there was no neurontin or topamax and I had to live with 30 complex partial seizures a day because the drs. felt any drugs on the market would be more harmful to me than the seizures. Then I started having grand mals. Neurontin was invented then so I was lucky. I know it can be frustrating with a lot of unknowns. The thing that always kept me going was to put the unknowns into the Lords hands and the rest into the Drs. hands and pray between the two I will be taken care of.