Temporal Lobe Epilepsy -- anyone else here?

Tattoo · 02-26-2008, 02:29 PM

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

Tattoo2 · 10-11-2008, 10:07 AM

Bumped up for newcomers. Tattoo

Wiix · 10-11-2008, 10:26 AM

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?

Yea, me. You sound JUST like me. The hypergraphia thing usually just happens after some sort of trauma, mental or physical.

I chose NOT to be medicated since I found the side effects of the meds were worse than what they were supposed to control.

I have just learned to live with it all. Afterall, I wasn't diagnosed until I was 50 and worked around my problems all my life.

One of the meds, I can't recall the name of, sounds like Neurontin, was the worst. I had 3 friends who all took this med and are now dead. Way before their time IMO.

I don't think doctors really KNOW what they are doing. They throw all these drugs at you in sort of a shotgun approach and IF there is some improvement somewhere, well, you just lucked out, but I really have no confidence in the medical Mills. I'd rather just be drug free and be the way God made me, problems and all. I tried the doctors ways and found it extremely debilitating. I am better off without them.

cmariano117 · 01-13-2009, 12:35 PM

Hello 'words and numbers' person~ I have TLE also and am of the visual/literary type. My neurologist says both sides are involved with seizure acitivity. I also was diagnosed recently and mis-diagnosed and mis-treated with the wrong meds... for bipolar disorder, which never quite fit.

I'm very interested in meeting others with TLE. My brother also has it but aside from him I only have one friend who can tell me about it second hand. She says her mother had TLE and later in her mother's life she was not able to go anywhere for fear that she would become disoriented and do something crazy like take her clothes off in public, which she did once in church.

I have religious experinces... thought I was a mystic. I also have had out-of-body trips that had me beleiving in the paranormal more than I would ordinarily. I am in my mid 50s. My family is somehwat ashamed of me becasue I quit working as an art therpist and have been on disability for 7 years. Often I am not able to drive and often I don't remember what I say or do for days on end.

It's quite an interesting (for lack of a better word) case of mal-happenstance.

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?

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.

southie · 02-22-2009, 02:34 AM

I thought I would chime in and imply I've had TLE
which is mitochondrial since birth - and I have had
several neurologists whom have disclosed that my
case has nearly fit almost ALL of the classifications
of the Gerschwin's classification, sans a few.

Hypergraphia does seem to have an influential issue
with those with TLE, but the good news is, Neuroscience
today is now taking another look at the Gerschwin's
theory again; at another perspective ---> that there
very well might be a TLE personality, but not necessarily
"one size fits all" nor "do all people have all traits".

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?

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