NeuroTalk Support Groups - Temporal Lobe Epilepsy -- anyone else here?

Hi, I saw your thread and decided to come out of hiding and join in. I too have epilepsy and recently had an episode of hypergraphia that came out of nowhere. I also have simple partials that are short and intense and seem to be increasing but just can't bring myself to meds again as I'm tired of the side effects. My hypergraphia came as a result of having several TL seizures and caused me to write feverously for about 72 days. It has resulted in a book that I hope to have published in a few months. When it happened I was treated like a psych person by some very ignorant people but luckily an informed doctor saw what was going on and treated it. It stopped the seizures but it also stopped the writing which sucked because it was a pleasurable experience for once. Its hard to explain this stuff to people, even professionals as anything that is brain related is so taboo with so many people in this country so you live in hiding and suffer. I'm hoping my book will shed light on what its like to live with seizures and in my case brain injury and let people know about this condition so it can be understood and not criticized. I'd like to meet others with similar experiences and am always looking for good true stories of other survivors who are brave enough to talk about it. A good book was "Midnight Disease" which is about a doctor who acquired this hypergraphia. It made me understand the phenomenum a little better. Hope it helps...

Quote:

Originally Posted by WordsnNumbers (Post 217977)

I remember being rather irked at the neurologist when he was trying to get me to take the Keppra. I can understand his apprehension; he's probably had to call the DMV on a few of his patients and doesn't care to do it. But it was like:

"We'll start you on Keppra."

"But I haven't had a full-on spell in years."

"You'll start with a low dose, and--"

"Doctor, I haven't -- "

"-- move up from there. There's also Lamictal, but that interferes with fertility -- "

"-- had a spell in -- "

"-- so we'll start off with the Keppra."

"-- years."

"What?"

"*sigh*"

He also told me nothing at all about signs to watch for that the stuff wasn't working well for me, until I asked him, "If this stuff makes my head go pear-shaped, what warning signs will I want to watch for?" That earned me a blank look.

And after hearing about the problems that people had had with settling on medications that work for them, I determined that I wasn't going to take a single one unless I had a damned good reason to do so, and given that it's been years since I've had a spell (and decades since what I've come to realize were complex partials), I'm not taking a thing. I'm not the denial type, so if it becomes evident that I need them, I'll take them. But until then?

Nope. Not unless it's needed.

Currently, the thing I'm the most interested in is actually Geschwind's Syndrome because I've been a very intense, hypergraphic person with unusual (and unusually distributed) skills for my entire life, and this is the first time I've ever seen myself described properly in a book of any kind. I'm 42 and I've never seen myself reflected so utterly anywhere before. It's an unusual experience to have for the first time in middle age.