BabyJayne... I relate to your symptoms very much. I take meds, but I have tried many that make TLE worse, so it is difficult to trust. Truthfully, I was diagnosed with bipolar d/o w/psychotic features up until a few years ago when I KNEW it was wrong, the meds, the treatment, etc. I went to a neurologist, who is an epileptologist and he's been my safety net.

But, people around me often think I am a hypochondriac, making up bizarre symptoms - because they don't "see" me going through them. It's not easy. My worst outcome is that I no longer can work, which locks me into my head all the more.... isolation, sterile environment, loss of self-esteem related to work and usefulness in society.

Thanks for speaking up. Cynthia in MA

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

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

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.

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.

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.

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.

Bumping up for a newcomer.

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

I was diagnosed with grand mal epilepsy back when I was 18 years old in the Army stationed at Schofeild Barracks HI. I am now 51 years old. I remember the first seizure I ever had, I was with a buddy down in Honolulu and we were about to get on a city bus and go back to Schofeild. I stepped up in the bus and fell back out on the sidewalk. Next thing I knew, I was awakened by a doctor at Tripler Army Hospital and had no idea as to how or why I was there. This was in the late seventies so army hospitals were not that well equipped. The army doctors did not have a clue what had happened to me. I guess just in order to get me out of their hair; they decided it was drug related. I had never touched any kind of drugs, legal or not, I didn't even like to take aspirin. No drugs were found in the blood test they did either. Anyway, my company commander decided that I needed to volunteer for drug rehab. My therapist at rehab sent several messages to my captain telling him that this was wasting their time. I passed every drug test the army could muster. Well, in the mean time; the seizures continued at least twice a month and sometimes more. They even sent me to a psychiatrist. They finally sent me to a neurologist at Tripler. He did several tests and decided that I had Grand Mal Epilepsy from a temporal lobal sclerosis. He said this was probably caused by a head injury I got when I fell and destroyed my knee. I have taken every kind of seizure prevention medicine you could think of, so many I can’t remember the names of them. Finally the doctors at the VA in Birmingham Al decided to try Depakote at 3500 mg a day (7 pills). This got the seizures down to one every 3 or 4 months. I even went 8 months one time without one. Last year in August, I had to have a total knee replacement in my left knee. The surgeons had to stop the operation and wait for a pint of blood platelets to be pumped into me. They said the count was below 50,000 whatever that means. After the surgery, they had to give me more. They all put their heads together along with my neurologist and decided the Depakote was causing this loss of platelets. My neurologist decided then to take me off the Depakote and put me on Levetiracetam, 1500 mg a day. Guess what, they are back. I have averaged 1 to 2 seizures a month sense the change in meds. I do know this, it’s very, very true that seizures get worse with age. Now it takes me a week to 10 days to get over one. I have read that the Depakote is physically worse on the body than Levetiracetam, but the Levetiracetam has some pretty nasty side effects also. I get fighting mad about the least little thing that used to didn’t bother me at all. My wife says that if this medicine is causing this, it has got to go or she will go. She did say it was my choice. Anyway, I have an appointment with my doctor in a week.
My Lord, I didn’t realize this post had gotten so long. Sorry!