Sami,
it does stink when the testing we go through don't find the cause or reason why.
But you can't let that upset you so much, alot of others that I personally know have and are going through the same thing. You just have to keep on the doc to figure out why. Or find a new doc.
When this first started happening to me I went through several docs. I was told so many differnt stupid things until the night I finally had a grand mal that was so bad that I had to have stitches in my tongue and side of my mouth.
Then the docs started to listen and I was labled epileptic.
And for years now all they (many docs) have told me is that my seizures will probably never be controled because the birth defect I have on my brain. And surgery is not an option for me, to many risk.
So it does stink big time when your dealing with this. But you can't let it get you down. Its hard though, and that is why this site is so good to have.
Write me anytime...
Jill

So its still ok.
That no abnormalities have ever shown up. Except for severe stress on my brain during one eeg test. I am just confused. My heart is normal, I have been tested for everything from head to toe and still no propper answers. But yet I am labled and epileptic. These tests were done to rule out temporal lobe epilepsy. So does that mean that I could have another type of epilepsy that isnt temporal lobe? I have read that tle is the most common.
The seizures that I have, the neurologist describes as grand mal, complex partial, simple partial, petit mal, so I guess I fit into the category of secondary genralised tonic clonic seizures.
Because what might start as an automatism(repeated speach), quickly turns into a mumbled speach(at this time I am hitting my self ) then me falling over, to me having a grand mal. In total the seizure lasts 15 minutes.

Sorry to hear things are tough right now. Be sure to go find a really good doctor or medical group who is proactive and specializes in seizure control. I know of someone who had terrible problems and it was finally discovered that it was his heart causing the seizures. Keep your hopes up and i'm sure you'll get to the bottom of things with the right help.

Hi there,

if u are so upset with the drugs and they cause u lots of side effects...

Why not trying other alternatives? Such as vagus nerve stimulator therapy?

Hope you doing well...

First off, I hope you are doing okay, and you are getting the answers you need.

I know exactly how frustrated you are, as I have been through the exact same thing. When I was 20, I had a gran mal seizure in my sleep, and woke up in the emergency room. After a myriad of tests, all coming back normal, I was put on dilantin for a week. The neurologist I had at the time decided that the dilantin wasn't the right drug for me, and changed it to tegretol, which I was taking up very much against my will until last october.

I have had five seizures in my life-one of which I had after I begged to be taken off the drugs. I thought since I felt fine and hadn't had any other seizures I was fine. I had been tested all over again for everything under the sun, and since all came back normal, my doctor weaned me off the tegretol. Exactly one month to the day later, I had another seizure-in the car, right after picking my husband up from work (he was driving, thank god) in front of my then two year old daughter-who is now seven and still remembers what happened-which I don't. Needless to say, I was put right back on the tegretol.

I had been on a low dose of tegretol for years with no gran mal seizures until this last october, when again I woke up at three in the morning to find myself surrounded by paramedics. That was when my doctor decided to change my meds back to dilantin. I feel great now, as long as I get enough sleep. I hadn't realized before how loopy and out of it I had felt for years, and I think that a lot of that had to do with the meds and the dosage I was on.

I have even had two healthy daughters.

all I can say is listen to the advice you get from your doctors and hopefully you will do okay. It's tough to not get any answers you want as to why and how this all came about, I know. I still don't know why or how I ended up epileptic and it has taken me years to accept the fact that I can't do anything about it. I really only have begun to accept it, and here it is nine years later.

Hopefully, this site will help you. I know I wish I had found it when this first all started with me, rather than an hour ago!