Yeah, I know what you mean about the memory problems and word recall. Before my surgery, it took a lot of effort and concentration for me to get my words out. But since the surgery, my speech isn't slurred or jumbled and I don't have to strain my brain to get words out of my mouth. My short term memory is still an issue though. I have to really concentrate before I can remember one thing that I did or that happened yesterday, and when it comes to me, what I did yesterday feels like it happened last week. What happened last week feels like it happened last month.... etc, etc.
Tristin :)
--- On Thu, 6/11/09, TIMOTHY BALDWIN <tbb1@prodigy.
From: TIMOTHY BALDWIN <tbb1@prodigy.
Subject: Re: [epilepsy] Guinea pigs.
To: epilepsy@yahoogroup
Date: Thursday, June 11, 2009, 11:26 AM
Tristin,
My seizures are intractable. Refractory is also used to describe my seizures, (meaning: not readily yielding to treatment). Not only have I tried allot of medicines without ever receiving full or enough of control to drive, but in '96 I had an unsuccessful left temporal Lobe operation. This slightly reduced from 1 per 3 wks. to 1 per 3-4 wks., but it was very successful in the development of temporal/memory loss. I still remember the first time I noticed this. It was when asked a question at work and thought that I knew the answer but wasn't able to produce I from my memory. After finding it, then my brain didn't sent the message to my voice-box, it probably took a few minutes before I could speak it. But by then the person who asked the question had asked someone else, I felt like a A*% hole. Now I know that my memory is terrible. But my seizures still there, so I can be confident of that. The worst thing about them is that the frequency of
them is only for the ones that I'm conscious of, there are plenty more that never aware of. I have no aura. If one happens, it's instantaneous and afterward if I didn't injure myself to where I'd see blood on me or if I was sitting watching TV, I wouldn't be aware that it at all unless I was holding a soda or food in my hand and dropped it onto my lap. I'd then notice allot of mess all over my lap and thick of the cause.
Tim < tbb1@prodigy. net >
____________ _________ _________ __
From: Tristin Seagraves <tristinspike26@ yahoo.com>
To: epilepsy@yahoogroup s.com
Sent: Tuesday, June 9, 2009 8:41:40 PM
Subject: Re: [epilepsy] Guinea pigs.
I know exactly how you feel Timothy. I was put on extreme dosages of many different AEDs..... Dilantin, Tegretol, Depakote, Zonegran, Keppra, Lyrica, etc, etc. About a year ago I read that once you've tried at least two different AEDs and your seizures still aren't under control, chances are that the epilepsy is "intractable. " definition= "two antiepileptic drug (AED) failures, at least one seizure per month for 18 months, and no seizure-free periods longer than three months during that time" (Epilepsy Foundation). When I realized this, I decided that enough is enough. I told my neurologist that I wanted to find out if I was a candidate for surgery. It took six months of testing, but on Nov 12, 2008, I had a left temporal lobectomy (my left temporal lobe was removed). I've been seizure-free since the surgery. If you go through the candidate testing, you'll probaby still feel like a "guinea pig" for a while, but it pays off in the
long-run. It worked for me.... so far. Surgery may be an option for you.
Hope this helps,
Tristin :)
--- On Tue, 6/9/09, TIMOTHY BALDWIN <tbb1@prodigy. net> wrote:
From: TIMOTHY BALDWIN <tbb1@prodigy. net>
Subject: [epilepsy] Guinea pigs.
To: epilepsy@yahoogroup s.com
Date: Tuesday, June 9, 2009, 6:18 PM
I've felt like a Guinea Pig since 1980, I was diagnosed with epilepsy in '74 but was on Dilantin & phenobarbital until visit to a neurologist then it changed. The pheno. was removed and after awail the dilantin was changed to Tegretol then Carbatal, Lyrica, Keppra, Neurontin, Tegretol XR, Topamax, Trileptal, Zonagran and lacosamide etc.. There has aways been changes in dosage of one medicine or another was being added to it to increase it along. For many years I was on three at once, now its only two Lyrica & lacosamide and a different neurologist. I hope that none of you have been though this, and still don't have complete control. I had my best before ever seeing my first neurologist in '80 but maybe I was only lucky before I visited Guinea.
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