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Old 02-17-2008, 09:24 PM #1
WordsnNumbers WordsnNumbers is offline
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Quote:
Originally Posted by Ronco3765 View Post
I have temporal lobe seizures plus a host of other kinds also. If you don't have spells I see no reason to medicate unless something aggravates your condition. I had so much trouble with meds when the docs were trying to stabilize me I wanted to crawl in a hole and die. Thankfully they discovered my system could only handle very low dosages of pheno and valium 4X daily and at bedtime. Meds can be horrible, especially if you have ms on top of epilepsy.
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.
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Old 02-26-2008, 02:29 PM #2
Tattoo Tattoo is offline
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I have some of the same characteristics but so does my nephew who does not have any sort of neuro condition. Also, some of these abilities I have are in my family background, so I feel like due to the fact that there was an area in my brain that suffered damage due to high fever as a child, other areas may have compensated making them possibly more adept at their fuinction. That makes senser to me since the body does that sort of thing and the brain is no exception. That area is the epileptogenic area where the seizures originate in my case. None of that is even important in the grand scheme of things. What is important is to keep myself moving forward with my life as I choose and to make every effort to keep myself from gong backward. Not taking my Keppra is floolish for me to do since these gifts I have may or will eventually disappear if I lose cognitive abilty or memory which will happen if I were to continue to have uncontrolled seizures no matter what type they are. I have simple and complex partials, but since I had surgery, my life is so much better. No complex partials, only an occas to rare aura and I still take Keppra. I have taken meds since I was 14 years old and always will. No biggie! I want to reach my full potential and always enjoy these gifts I was given so I will do my part and take care of myself. Tattoo
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Old 10-11-2008, 10:07 AM #3
Tattoo2 Tattoo2 is offline
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Bumped up for newcomers. Tattoo
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Old 01-28-2010, 01:25 PM #4
Morganomics Morganomics is offline
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Default Tle

I was diagnosed with TLE this past September, two psychiatrists have come up with the same dx so I think I'm coming to accept it, but at the same time I'm quite sure I need treatment (therapist and anti seizure meds) because my thinking is really compromised at the moment. TLE manifests itself with mood and cognitive disorders.
The symptoms that you've described that seem striking to me is the fact that you are left-handed and have a knack for numbers. I have an intense visual memory that can play in my head when I'm feeling strange, in fact my visual memory is so strong my family and friends depend on me to ask when photos were taken. In most cases I can pinpoint the year, month or even week. Its kind of a parlor trick, but as an artist I find it useful. I'm assuming that the focus of your epilepsy must somehow extend to the auditory area. Does the music ever become unpleasant as if somebody has a radio on while you're trying to do something important? Do you have a history of depression/anxiety or memory problems ? As these might be a symptom of your epilepsy. For myself my mood is intensely affected by the aura seizures, intense euphoria usually accompanies the event and then grumpy depression follows. I know I've wrote about myself, but I'd like to compare notes and see what symptoms we have in common.
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Old 03-02-2010, 06:21 AM #5
mel239 mel239 is offline
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Music,words that people say and things Ive read just become stuck in my mind and twist and turn and change themselves into new and bizarre phrase that are unrecognizable and usually more intense than their original counterpart. Of course,I then have this compulsion to sing these words out loud and LOUDLY in an attempt to exorcise them out of my brain which does work.I also have an extreme attachment to Christmas.My living room is decorated with Christmas decor,Every year I only halfway put away decorations,leaving most of it out all year and purchasing more.I listen to Christmas music most of the year and have miniature trees and lighting up all year.With all my weird psychotic actions I fear that once my children are gone and I hit 70 or so i will be known as that weird Christmas lady at the end of the road.
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Old 05-03-2010, 04:28 PM #6
Tattoo2 Tattoo2 is offline
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Bumping up for a newcomer.

Last edited by Tattoo2; 05-03-2010 at 06:26 PM.
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Old 10-23-2011, 07:33 AM #7
Tshelbie Tshelbie is offline
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Default Geschwinds syndrome

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 View Post
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.
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