Here I finally am

[motorbill66]

I'm new, of course, to this forum, but I'm certainly not new to epilepsy. I've been "experienced" with it since 1988, after seizing as a reaction to a couple of stupidly prescribed medications. I was transported to the Hospital after that first episode and given every test from a spinal tap to a catscan and sent home with the explanation that I may have had a "bad reaction" to the drugs I'd been given (Naproxyn and Amantadine;I suggest avoiding these if you can.). That seemed to be the end of it. Then, a year later, almost to the day, I had another. After that they began coming thick and fast. My first neurologist prescribed Tegritol and it seemed effective for a while. Then I began to break through. Each time this happened my dosage was raised until I eventually could actually taste the stuff. I still remember, it tasted almost like that effect you get when you put the terminals of a nine volt battery on your tongue. Just about all of us tried this as a kid! Anyhow, the neurologist said that I was going toxic on the stuff. Over the next several years we tried all kinds of drugs that didn't seem to do much. I was having monster attacks every month or two. Then we found Depakote.

Depakote really seemed to work once the theraputic dosage was found. Of course the side effects were not too pleasant. Hand tremor, shedding of my hair (I swear it looked like we were building a cat in the shower drain!), and big time weight gain. Still, the seizures were pretty much under control.

The difficulty was, the tremors were slowly but surely getting worse. My occupation at the time was as a self employed modelmaker, doing locomotives and buildings for collectors. I also did fine line landscape drawings and small watercolors. I was actually paid at one time for doing caligraphy for various documents and diplomas. That stuff is now gone, as I tremble way too much to do much of it anymore. Because of the epileptic condition I had to forget my dream of getting a pilot's liscence and to eventually give up driving racecars. I eventually quit Depakote since I had begun to break through that as well, and was sick of the tremor. Well, that was about a year and a half ago and the tremors have remained and intensified. I'm now on 375mg of Lamictal and I can't say I'm in love with it, but I have lost fifty pounds. I'm seeking further help with the tremor situation in the form of Deep Brain Stimulation surgery. I've been through loads of exams and tests, and should get the word on whether I'll be allowed this procedure in the next week or two. I've been persuing this for about nine months and it has been a genuine trial, with about fifteen appointments at a university hospital seventy miles from home. The concern, of course, was about the surgery. To see where the epileptic focus was located I was subjected to what I bet a number of you people have had. I was given a four day continous EEG while my meds were withdrawn completely. I did just what they wanted and produced three giant seizures. They then delivered the startling news (NOT!) that I had epilepsy. Thanks a lot, Professor Obvious, was all I could think. But, at least they located it in the upper right area too deep to do much about at this time. You folks don't need to hear any more of this 23 year adventure because each of you has had his or her own.
Sometimes it just seems good to unload, and I guess that's what this forum is about. So, thanks for listening. I hope I can be an asset instead of a load in the future...

Bill

[Nakamova]

Hi motorbill, welcome to CWE!

Your experiences seem to have run the all-too-familiar gamut of epilepsy frustrations -- seizures, meds, side effects, doctors... I hope you get good news about the DBS, and feel free to unload as the mood strikes.

Best,
Nakamova

[Rae1889]

Welcome!
I just wanted to mention that my simple partial seizure come with a taste in the mouth that is like licking a battery! When I said this the first time, people thought I was nits for knowing what a 9 volt battery tasted like. So that might not have been tegretol taste, but a seizure.

I'm not on, nor ever have been on tegretol so I know its not that for me.

[Cint]

Hi Bill and Welcome,

I, too, live in Colorado and have had my trials and tribulations with epilepsy for nearly 30 years now. I also see an epileptologist at University of Colorado in Denver.

Feel free to unload any time you need to. Let us know the final word on your DBS trial.

[momof3boys]

Hi and welcome to CWE! Im in the state next to you.... Good Old Nebraska!

Ive had seizures since I was an infant. I also had a 4 day video EEG and was taken off Carbatrol, but kept on Keppra XR. I have left temporal lobe epilepsy. Ive had to deal with this my whole life, so other than that, I dont know what its like not to have epilepsy.

[motorbill66]

I want to thank you and say that I truly appreciate the support you have shown virtually immediately. I feel less alone already. I only just realized that in all my years of dealing with this curse, I have never really been in contact with another victim. Wow!

Twenty three years ago when this all began I was "only" 40 years old. At that time I suppose I thought I could tough it out and that eventually I would "recover". Well, it's pretty obvious, and has been for quite some time now, that's not gonna happen. Yesterday was my 63rd birthday and I'm still fighting. I won't give up, but sometimes, like all of you, I do get weary of the the battle. But, there is always this thought which occurs when I sink towards self pity or find myself describing it all to someone, who inevitably expresses curiosity caring and sympathy. I always find myself saying, "Hey, everybody's got somethin'. This is just mine. Everybody's got some mountain to climb. Everybody's got a challenge in life. It's all about how you face it. It's about learning."

There are greater difficulties than I have to overcome. Some are physical. Some are emotional. Some, of course, are simply mental. Some people are in the grip of things like intractable greed, or fear. Some must rise above seemingly endless poverty. Worst of all, many must live without someone who truly loves them, or don't have anyone to love. That's the worst condition of all, isn't it?

I am incredibly fortunate in that way. I have many friends who care deeply and who express their concern and sympatic feelings often. Mostly, I have the best wife any guy could even imagine they'd be downright lucky beyond anything they'd posibility deserve to have. She has stuck with me and supported me through many difficulties inmy life for forty three years. Who could ever ask for more than that? Still, there is a kind of isolation and a sort of loneliness to this thing. Have you ever tried to explain the anatomy of a seizure, right down to the strangeness and misery of the post-ictal state, to anyone? Or have you ever tried to describe your aura? I nearly always get blank stares and incomprehension. It's the ultimate "You hadda be there" kind of thing, at least for me.

So once again, thanks so much for lending an ear and describing your own feelings and experiences. It just plain helps.

[Nakamova]

Happy (belated) birthday!