Temporal Lobe Epilepsy -- anyone else here?

shezbut · 01-18-2009, 02:47 AM

Hi cmariano117,

When you have TLE, complex partial seizures are very common. Complex partials do affect both sides of your brain, the hippocampus (which in charge of storing memories) on each side of the brain fire off speedy activity. That's why when one comes to, after a c.p., they have no memory of the event.

Usually an aura warns people that the c.p. is coming. My aura happens only seconds before, which gives me no time to react or protect myself. Some people have auras hours before! I don't know anyone who does, but all literature talks about the aura usually giving people minutes to hours to prepare for the c.p. How one prepares for a c.p., I have no idea.

I'm curious what medication/s you take to prevent seizures? When were you finally diagnosed? It can take a long time to finally find medication or treatment that adequately controls the epilepsy. I do know a couple of people who've had the vagus nerve stimulator implanted. That helps a bit. Of course, surgery is becoming more popular for TLE - as this type of epilepsy is most difficult to control & they can work around speech and memory areas. In many cases, the hippocampus is largely (and completely) removed, since we have another hippocampus on the other side of our brain.

Shez

LTL resected 3/06

Wren · 01-18-2009, 07:36 AM

Hi ~ I have TLE with complex partials that started when I was 46 years old.
Well, they started several/many months before that but no one, even a doctor, would believe me.
Nov. 1, 1990, I went to sound to sleep and quickly had a massive tonic clonic ... I was diagnosed with epilepsy.

After that I continued having the CPs - a nice warning aura maybe 30 seconds before probably saved ......

long story But I did amost always have a memory of what happened during the event.

I took all the meds and almost all combos of the meds - the CP seizures continued. The only change was I lost my precious aura and went unconcious during the seizures.

July 2005 finally it was learned that a small grade 2 oliogodendroglioma tumor in my left temporal lobe was what had started this for me ... Feb 2006 it was removed.
May 2007 seizures returned so I had more surgery and I have not had another sz since then.

Porkette · 01-18-2009, 02:27 PM

Hi,
I've had TLE for 37 yrs. I started having absence (petit mal) sz. when I was 10 yrs. old and then the complex partial sz. began. I have never been able to drive in my life but I won't let Epilepsy stop me from working full time teaching kids in Special Education who have both physical and learning disabilities. I had 2 brain surgeries to help reduce my sz. and I've found taking vitamin B12 once a day along with my sz. meds has been a big help stopping a lot of the sz. Also right before I have a complex partial sz. I get an aura sz. also known as a simple partial sz. when this happens I get a nervous feeling in my stomach for a few seconds and see colors flashing back and forth in my eyes. The moment this begins I tighten up all the muscles in my body and make my hands into tight fists by doing this it stops the aura sz. from going into a complex partial sz. You might want to give it a try and see if it helps. Here's wishing everyone here well and May God Bless All of You!

Sue

Mark1974 · 02-16-2009, 01:19 AM

I've been diagnosed since my 2002 major episode that probably would be called a complex full out my mind. sorry it is late and I have not read the terms of TLE fully, but after 2002 I jumped on the meds and stabilized and didn't have any issues for awhile. However, the meds prevented me (28 at the time) of going out and having a social life or so I thought. It was hard for me at that age after being social, drinking, and other activities to stop them all together.

After my second full blown hospital trip, I got serious fast. No booz or other "things" and have stayed on the meds. Obviously I miss a few things, but I've learned to love N/A beer made by the dutch!

In short, I think people on this list read your words and feel like they can help. Obviously you are on the other side of the country probably and we can't see you up close to know if you are/are not tricking yourself as I had tricked myself. I totally thought I was in control, even after my first full blown episode that made me think aliens and/or religious blah blah was going to occur. Regardless, I'm living a full life and all it took was saying yes to the meds and no to the other stuff.

cmariano117 · 02-25-2009, 12:01 PM

Hi Shez, only diagnosed here in my 50s. I take Lamictal which doesn't cut down on seizure activity but it does keep the ebb and flow of my emotions more manageable. Without this med I am a basket case of emotions and hallucinations, fears, obsessions with words and numbers, etc.

The worst thing is I had to stop working and that is killing my spirit. The med works so well on those symptoms I mentioned but the down side is that my creativity is squelched. I barely do anything creative and now that I don't work I ahve all the time in the world but no creative drive, kinda numb.

It's a give and take. Cynthia

cmariano117 · 02-25-2009, 11:31 AM

Hello, I sympathize/empathize with everything you say here. But, I must say that the seizures are the least of my worries. I have been an odd ball since I was very young, and lost in my own world of hallucinations, that "Alice in Wonderland" thing they speak of, an excess of creativity. It's no fun. It's gotten worse for me over time and now I do take meds... Lamictal. I haven't been able to work for a few years ... too much stimuli of light/sounds and people-chaos make me seize.

It's more of a lifestyle problem for me. Feeling like a freak of nature, knowing that, as you say, it's only a slight touch away from madness in the psychiatric sense. My world has become closed off, lonely and unproductive. I make prayer beads now. Lots of quiet. Contacts over the internet, walking my dog, not supposed to drive until after 6 months with no seizure which hasn't happened yet.

I need to know I am not alone. It's good to read what other TLE people have to say. Cynthia in Massachusetts

Quote:

Originally Posted by WordsnNumbers

Hello! I just joined now after finding this forum when googling Gerschwin's Syndrome.

I found out, after a lifetime of having weird spells, that I have Temporal Lobe Epilepsy (left-side) very recently, like a year or so. I'm not taking medication since I haven't had one for a long time, but I've had them since I was a very, very young child. Except for the hyper-religiosity, I've got every single personality marker as well. Lousy memory, olfactory hallucinations and a very precise and vivid sense of smell, lefthandedness, synaesthesia (scent/taste/color), enhanced abilities with mathematics and numbers, enhanced creative abilities, hypergraphia, the works. (I'm a bit weird in all senses, though -- I've been tested at 0.375 Hz tonal discrimination as well and have to plug up my ears to sleep, and while I'm nearsighted, I can color-match to an almost creepy degree.)

It's reassuring to find out that there might be other people out there with it, but I've never met any in person, and I'm worried about trying to since publicly claiming the Big-E word freaks people out. I was terrified when I started realizing that I needed to be evaluated for it that I would be legally forced to be medicated or lose my driver's license, and that the medication would make me lose the abilities I have that seem to be related to TLE. (I became functionally literate in Welsh in about three months and have always been able to learn languages and math like drinking water, effortlessly.) I was scared out of my mind that I'd have to choose between that and working for a living, and it effed me up for a few months before I finally decided I had to get evaluated. Like I said, employers and doctors freak out when they hear the E-word, and I was scared even to mention it for fear I'd lose my rights. This is on the borderline of a "mental illness" in a lot of people's eyes, and mental patients often lose a lot of rights and privileges.

The story of how I realized I had it is its own tale, but for the moment, I think I'd just like to connect with other people who have it and learn a bit about you. This looks lots better than the last epilepsy forum I found which was run by a guy who didn't have it but whose kid had it, and while I admire parents with special needs kids, they can be incredibly condescending when they try to adopt the "because I'm daddy and I say so, honey" tone of voice with total strangers. I'd really like to hear from people who HAVE it, and not people who have kids who have it. I want to talk to others like myself.

Anyone else out there?

shawn33 · 03-27-2009, 06:48 PM

Hi there,
I have TLE too. I have it on both ends, so it's basically tossed my memory into the toilet and it's as if my mom or a friend has flushed it. Up until 1998 i was prescribed EVERY med that was out on the market for E. But since that and the right temporal lobectomy, and the VNS didn't stop my seizures. My neuro told me that I have SEVERE epilepsy. They don't know if I was born with it, or if I got it from being in Desert Storm. I'm a Marine war vet. After the right temporal lobectomy, in the early 90's, i got the VNS in 95. For 11 years that didn't do anything for me. Than in 2006 i entered the RNS medical research study. that's helping me moderately well. I'm dying to get the seizures under controll because of the job offer that I got a couple years ago. Here in southern CA. NASA offered me a job to be a security guard at their offices at JPL (Jet Propultion Laboratory). The starting pay is $45,000 per year. But i must have a drivers license. If you ever want to talk about the seizures, the VNS, or the RNS, let me know. We can either do it on the live epilepsy chat at www.epilepsy.com or i can call youif you live any where in the USA, since I have unlimited nation wide calling with AT&T.
Sincerely
shawn33

Quote:

Originally Posted by WordsnNumbers

Hello! I just joined now after finding this forum when googling Gerschwin's Syndrome.

I found out, after a lifetime of having weird spells, that I have Temporal Lobe Epilepsy (left-side) very recently, like a year or so. I'm not taking medication since I haven't had one for a long time, but I've had them since I was a very, very young child. Except for the hyper-religiosity, I've got every single personality marker as well. Lousy memory, olfactory hallucinations and a very precise and vivid sense of smell, lefthandedness, synaesthesia (scent/taste/color), enhanced abilities with mathematics and numbers, enhanced creative abilities, hypergraphia, the works. (I'm a bit weird in all senses, though -- I've been tested at 0.375 Hz tonal discrimination as well and have to plug up my ears to sleep, and while I'm nearsighted, I can color-match to an almost creepy degree.)

It's reassuring to find out that there might be other people out there with it, but I've never met any in person, and I'm worried about trying to since publicly claiming the Big-E word freaks people out. I was terrified when I started realizing that I needed to be evaluated for it that I would be legally forced to be medicated or lose my driver's license, and that the medication would make me lose the abilities I have that seem to be related to TLE. (I became functionally literate in Welsh in about three months and have always been able to learn languages and math like drinking water, effortlessly.) I was scared out of my mind that I'd have to choose between that and working for a living, and it effed me up for a few months before I finally decided I had to get evaluated. Like I said, employers and doctors freak out when they hear the E-word, and I was scared even to mention it for fear I'd lose my rights. This is on the borderline of a "mental illness" in a lot of people's eyes, and mental patients often lose a lot of rights and privileges.

The story of how I realized I had it is its own tale, but for the moment, I think I'd just like to connect with other people who have it and learn a bit about you. This looks lots better than the last epilepsy forum I found which was run by a guy who didn't have it but whose kid had it, and while I admire parents with special needs kids, they can be incredibly condescending when they try to adopt the "because I'm daddy and I say so, honey" tone of voice with total strangers. I'd really like to hear from people who HAVE it, and not people who have kids who have it. I want to talk to others like myself.

Anyone else out there?

Morganomics · 10-27-2009, 05:12 PM

I understand now at the age of 26 how difficult the diagnosis of TLE can be. I'm only now starting to accept the new diagnosis. In the pasts I had been labeled and unsuccessfully treated with SSRI's and other drugs, which didn't help me. I first heard of TLE in the summer of 2007, I thought everybody had little de'ja vu episodes. Mine happen specifically at night although the confusion, memory, mood and perception problems remain throughout the day. My biggest question right now and biggest concern is does any body else experience "Forced Thinking"? I have behaviors and thoughts which seem to be intrusive and create a membrane of wire around my mind. The rigid thoughts are close to OCD, I feel compelled by an outside forced to complete behaviors as if I'm thinking and acting around the most logical and easiest way. The feeling is as if there is a headache on the left side of my head and both emotions and thoughts are frozen or flow very awkwardly. If anybody understands even a bit of this please reply. Thanks.

mel239 · 10-29-2009, 09:14 PM

Yes,only I sing my obsession in my head.its like it spends s much time in my head that it actually changes,and it is usually something ffrom the past or horrific news about children or the last word somebody says to me.I just know if i share too muchwith those around me i and Mmy kids will be hauled away.

shawn33 · 01-09-2011, 09:15 PM

Hi there, I have the TLE too. I have it from a traumatic blow to the head. It's scarring on the lobes.My doc's can't trace back how it started, so I was diagnosed idiopathic. My sense for scent, and sound has increased a good amount. But because of my meds my balance is screwed up a little. What greatly reduced the amount of seizures is the right temporal lobectomy. But I still have them because I have scarring on the left temporal lobe too. after the staring spell, I go into total confusion, and half the time during the confusion I'll hallucinate. I asked my doctor why is that, and he said. "that because if the length of time for the electrical activity takes longer than normal to get back to normal. It can cause bad confusion that leads into hallucination. So don't worry you're not a mental case." If a employer refuses to accept you because of seizures, or lays you off because of them. You can take them to court with the Americans with Disabilities Act (ADA). The National Epilepsy Foundation will help you with ALL the legal issues. So where are you at? I'm in Pasadena, California. If you ever need a person to talk to on the phone that has TLE, just let me know, I'll give you a call and some support.

You're right people are sensative to the word Epilepsy. I've been trying to find a girlfriend for the past 18 years. But when I bring up the seizures, I just get rejected immediately. So I'm 40, and have yet to have a wife and child. My seizures started up with deja vu the simple partial, and then went to petit mal. Now I have complex partial, and starting in 2006 grand mal.
Sincerely
Shawn

Quote:

Originally Posted by WordsnNumbers

Hello! I just joined now after finding this forum when googling Gerschwin's Syndrome.

I found out, after a lifetime of having weird spells, that I have Temporal Lobe Epilepsy (left-side) very recently, like a year or so. I'm not taking medication since I haven't had one for a long time, but I've had them since I was a very, very young child. Except for the hyper-religiosity, I've got every single personality marker as well. Lousy memory, olfactory hallucinations and a very precise and vivid sense of smell, lefthandedness, synaesthesia (scent/taste/color), enhanced abilities with mathematics and numbers, enhanced creative abilities, hypergraphia, the works. (I'm a bit weird in all senses, though -- I've been tested at 0.375 Hz tonal discrimination as well and have to plug up my ears to sleep, and while I'm nearsighted, I can color-match to an almost creepy degree.)

It's reassuring to find out that there might be other people out there with it, but I've never met any in person, and I'm worried about trying to since publicly claiming the Big-E word freaks people out. I was terrified when I started realizing that I needed to be evaluated for it that I would be legally forced to be medicated or lose my driver's license, and that the medication would make me lose the abilities I have that seem to be related to TLE. (I became functionally literate in Welsh in about three months and have always been able to learn languages and math like drinking water, effortlessly.) I was scared out of my mind that I'd have to choose between that and working for a living, and it effed me up for a few months before I finally decided I had to get evaluated. Like I said, employers and doctors freak out when they hear the E-word, and I was scared even to mention it for fear I'd lose my rights. This is on the borderline of a "mental illness" in a lot of people's eyes, and mental patients often lose a lot of rights and privileges.

The story of how I realized I had it is its own tale, but for the moment, I think I'd just like to connect with other people who have it and learn a bit about you. This looks lots better than the last epilepsy forum I found which was run by a guy who didn't have it but whose kid had it, and while I admire parents with special needs kids, they can be incredibly condescending when they try to adopt the "because I'm daddy and I say so, honey" tone of voice with total strangers. I'd really like to hear from people who HAVE it, and not people who have kids who have it. I want to talk to others like myself.

Anyone else out there?

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