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Old 03-06-2005, 01:04 AM   #1
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367cat HB User
Temporal Lobe Epilepsy

Hi
Just found this site. I have just been told I have TLE and have been taking Tegretol for it. I dont really understand why how or when this happened to me. The neurologist said maybe from having a traumatic birth & maybe from a violent ex partner. I have had 1 big seizure what he called a grand mal and alot of other little episodes that he called petite mal and absence seizures. Has any one got any ideas or does anyone know anything about Tegretol.

 
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Old 03-06-2005, 05:05 PM   #2
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Re: Temporal Lobe Epilepsy

Hi 367cat,
I have been diagnosed with TLE also. I have been on tegretol for about 17 years now and it has seemed to be only med that works for me. I've been put on dilatin and others and they didn't work. I too, also have had only one grand mal and that happened during the birth of my second child. Tegretol has worked well for me, but I guess depending on the dose you are taking, it can make you sleepy and constipated. The doctor has recently increased my dosage to 1100 mg a day because I have been having break through seizures. So far so good.

Take Care,
"TXLADY"

 
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Old 02-06-2006, 06:46 PM   #3
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FEDX HB User
Re: Temporal Lobe Epilepsy

I recommend that everyone diagnosed with this type of seizure visit the Rochester (Strong Memorial) or John Hopkins WEB sites re the surgical intervention now available. My surgery was 5 yrs ago, it was completely successfull.

 
Old 02-06-2006, 07:15 PM   #4
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Re: Temporal Lobe Epilepsy

I"ve got complex partial seizures/temporal lobe seizures- and a lot of the time, there is no definite cause found- for some reason, the brain's electrical system just gets weird, and seizures result. I've been on Tegretol (or the generic, which is one of the few generic sz meds that has been ok for me) on and off for years- was on others. I also take Klonopin. You might look up Tegretol on the search, by itself, and you will probably get info from the pharmaceutical companies. Also, the Epilepsy Foundation has good info. Looking up temporal lobe seizures/epilepsy will also lead you to a ton of information. There is also a book on partial seizures, that I found marginally helpful, but other seizure books- often available used, and very inexpensive, have sections on temporal lobe seizures.

 
Old 02-07-2006, 03:04 PM   #5
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Re: Temporal Lobe Epilepsy

hi I'm new to this but am looking for information on temporal lobe surgery. It is for a friend of mine who has just been told she should think bout surgery. One of her fears is how it will affect her memory. Please can anyone shed any light on the good and bad points of surgery and any experiences would be good
thank u all
KK

 
Old 02-12-2006, 08:51 PM   #6
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Re: Temporal Lobe Epilepsy

Temporal lobe epilepsy is most often caused by something called Hippocampal Sclerosis. It has no reason for happening but it's the one form of epilepsy that is very succesfuly treated with surgery. You have to go through a bunch of testing to find the focal points of the seizures. They can get an idea from MRIs but need to make sure it's the only focal points. Also have to make sure it's only one temporal lobe. They have to make sure removing that lobe won't mess with the speach centers or too much of the memory center. From what I remember the first test was a neuropsycological test. They ask a bunch of questions and you have to write answers on paper. Next was in the hospital, it's called a VEEG. It's a video electroencephlegraph. They want to see you have seizures and locate the focal points during a seizure. The next test was called a WADA test. They put a cathador in an artery in your leg and feed it up to your brain. They put the part of the brain they want to remove to sleep and ask questions. They can see how well you can function without that portion of the brain. I couldn't have a WADA test so I was bumped out of the surgery program in 99. I went through all the testing again in 04 and had an FMRI, functional MRI test instead of the WADA. Because of my health I had gamma knife surgery. The problem with gamma knife surgery for epilepsy is that it takes up to 3 years to show full results. Good luck to all and you'll be in my prayers tonight. Jeff

 
Old 02-13-2006, 05:56 PM   #7
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Re: Temporal Lobe Epilepsy

Mesiotemporal sclerosis from childhood febrile seizures is another cause, but many people never know for sure what causes their seizures, unless they have the MRI,and something shows up- like a sclerotic area.

 
Old 05-01-2006, 06:01 AM   #8
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Re: Temporal Lobe Epilepsy

I was wondering if anyone got back to you with resources about temporal lobe epilepsy?

thanks,
Chris

 
Old 05-02-2006, 10:30 AM   #9
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Re: Temporal Lobe Epilepsy

Hi, My husband had temporal lobe epilepsy on the left side of his brain. He didn't start having seizures till he was 29. He had been on many different kinds of medications, but break through seizures always started again. So we asked a Dr about the vns surgery and he sent us to the U of Michigan. After questioning us about his seizures and auras and past history. (he had one fibral seizure at 6 months old from a high fever) he suggested my husband could be a candidate for surgery. This was never presented to us before. After all the testing, it showed his seizures had one focal point which was the scaring in the hippocampus from the fibral seizure. He had the surgery and has been seizure free for 2 years. They are slowly, (and it is always recommened slowly) weening him off his meds. His only side effects are some short term memory, but that was already damaged as that was where his problem was. He is driving again and his only regret is he wished it could of been done sooner as he was 57 years old by then. I am sending this message to say this was confusing to us as a family, as I am sure it is to all of you, trying to figure out where and why this happened to my husband. We thought we had looked at all the solutions that were out there after almost 30 years. I would recomend anyone with temporal lobe epilepsy to at least get evaluated to see if you can be a candidate. It could change your life.

 
Old 05-04-2006, 06:12 PM   #10
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Re: Temporal Lobe Epilepsy

I had temporal lobe surgery Aug/2002 and my seizures are now under control. I did it as a last resort because I had tried at least 10 different medications and nothing worked. I was 46 years old and in pretty good health but the surgery really took its toll on me both physically and mentally. I have been in a depressed state of mind ever since the surgery. I think I feel that way because I feel like most of my life has been wasted with this terrible condition. If you are 20-30 years old I say have the surgery and have a full and good life! If you are older you can still have surgery but join a support group or seek counseling because brain surgery can really mess up your brain's chemical balance. Good Luck!!!

 
Old 05-06-2006, 09:59 AM   #11
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couldbeworsaspose HB User
Re: Temporal Lobe Epilepsy

I also have Temporal lobe epilepsy, and although having it all my life, I was not diagnosed until a few years ago. I was originally given Tegretol, also known as Carbamzapine, but this made me ill. I was then given Lamictal, which works very well. The only trouble I had was when (without my knowledge) they changed me from Lamictal to the generic Lamotrigine. I'm not saying there is anything wrong with Lamotrigine, but I was told later that once you are prescribed a drug, it shouldn't be changed.

 
Old 05-07-2006, 09:07 AM   #12
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Re: Temporal Lobe Epilepsy

It's been out in the US for 12 years; since 1994. I don't THINK they are allowed to make generics on the market yet. but cannot verify if generics are out over here for Lamictal/lamotrigine.

The problem when changing from Brand Name to Generic in some instances is the inert, or non active ingredients contained in the tablet or capsul. Those are the variable. They can cause a patient to have reactions. Also generics have a +/- range for how much they contain of said amount of drug. So they can be within 10-15% of said amount for example; where as the brand name has the solution down pat.

A good example I use, I went from Tegretol generic1 at a chain store. Moved, brought my scripts to the same chain store 15 miles away. They carried Tegretol generic2. THAT second party drug maker caused seizures due to the non-active ingredients. BOTH were Generics of Tegretol tab (brand name) that worked fine for me before when I could pay the costs of brand name.

--Travis

 
Old 05-07-2006, 03:09 PM   #13
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Re: Temporal Lobe Epilepsy

Also, the coating on generics vary- I can take the 'white' generic Flexeril, but not the 'mustard' colored one (probably because it's such an ugly color with the rest of my meds - lol)....had to change meds entirely one time because the pharmacy changed vendors/suppliers. Most patents go for 7 years (I think), but if the company files for an extension, OR, like Clarinex - a variant of Claritin, and Lyrica, a variant of Neurontin, they can keep a brand name med out there when the generics start showing up. It's pathetic. I'm all for new medications, but also being able to afford them.

 
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