Hi Garry,

I have also had TLE since childhood but wasn't diagnosed until I was 46.

I was wondering. Is there a possibility that your TLE has a hereditary component? It looks like that is a possibility for me. I have a brother who has had similar symptoms since childhood. I also have a great grandmother who (I'm told) from the time she was a young girl, would suddenly fall and stiffen. An uncle remembers that she was to be given medication by rectum if this happened to her. Her family said that she was having heart attacks - which doesn't make sense because she lived well into her 80s. I think maybe her family was afraid of the stigma of epilepsy.
Possibly she had epilepsy?

All my sibling and I (including my children) have great difficulty with temporal lobe dysfunction. I was wondering if that was true for you. It looks like possibly there is a hereditary component that is causing this dysfunction and when it is severe enough - seizures result. I say this because it seems to be on a continuum in my family. It looks like everybody is struggling with the same thing - that it is only a matter of degree. Therefor, I don't think that I should say that I have epilepsy and another sibling doesn't. But rather that that sibling and I struggle with the same type of temporal lobe dysfunction but that unlike the sibling, I also have seizures as a result of that dysfunction.

I am probably boring you big time.

I find the temporal lobe dysfunction to be more limiting than the seizures. I was wondering if you experienced a similar thing. I have great difficulty with my mind clouding when I try to concentrate and indeed, my first diagnosis before the epilepsy diagnosis was severe ADD. My mind fatigues rapidly and the fatigue does not go away with a simple break or nap. I have learning disabilities which include auditory processing and visual processing. I also have difficulties with memory which was confirmed by neuropsych testing. In one aspect of memory I scored in the 5th percentile. Do you also have learning disabilities? Trying to focus and pull things out of memory makes me more prone to seizing. Have you found that as well?

I don't know what kind of TLE you have. I was suprised to find that I did not have MTLE because of the memory difficulties. My brother who has had symptoms similar to mine also struggles greatly with memory problems. Do you have MTLE?

I have also found that sometimes my seizures cause problems for me 2 or 3 days later. I will become irritable and depressed. The epi said that seizures can cause changes in the levels of neurotransmitters but that these changes usually take 2 or 3 days to reach a degree that causes problems. Do you have this difficulty?

My temporal lobe dysfunction has greatly impacted my ability to be successful in school and to perform adequately in a work environment. I am currently putting in full-time hours at a low-paying job (but I am happy to have it) which has greatly over-taxed me and is taking a toll. Hopefully only a few more weeks and I can go back to part-time. Has your epilepsy created a lot of difficuties with regard to work and school?

It was very hard on me psychologically to be having difficulties when I did not know there was a reason for it. I didn't understand why I wasn't achieving the way other people seemed to be. At times I was quite hard on myself about it. My solution when I was young was to try harder and harder - often to simply feel like I was 'hitting a brick wall'.

I didn't find out about my learning disabilities until my early 40s. I also didn't have the neuropsych testing until I was 48. Have you found that you have been judged by other people? My IQ on testing was above average and I can carry on a reasonably good conversation so people's expectations of me have always been fairly high. So when I don't meet those expectations, I have been judged negatively.

It has taken a toll on me - the not understanding what was wrong until so late in life. Did you struggle with your own expectations in life? Were you ever hard on yourself if you did not meet them, because you did not understand what was wrong with you?

Well - enough questions. It has been a long hard path to understanding what was wrong. I just wanted to touch base with someone who probably understands.



[This message has been edited by rainonwindow (edited 08-24-2003).]

the way you say you feel , it is close to the way i am . do you have grand mals or simpal seizures ,i have only had one grand mal . but now i have simpal seizures and it starts those types of feeling, it takes 2-3 days before it hits me hard then it will take as long as 6 months or longer before i feel kind of normal .avm rupture in left tempral.

You didn't bore me at all. In fact it has sort of made me think about my own family history. My mother has had grand mal seizures since her early twenties. The doctors say there is no connection between my complex partials and her seizures since they are different. I don't buy that. The only EEG that ever registered anything for me showed a tonic clonic spike...In other words her seizure disorder showed up in my brain. Pretty weird, huh?

She also has migraines and suffered from severe depression all the years I can remember until FINALLY a doctor put her on paxil just several short years ago. What a wonder drug. I actually hear my mother laugh whenever I talk to her on the phone. My mother rarely laughed when I was growing up.

My brother is...I don't know what my brother is. He is usually homeless until my dad gives in and lets him live in one of his rental homes. He was very smart, but dropped out of school, got his GED and a scholorship to Purdue. He dropped out of Purdue because he couldn't handle being around other people. When he does work it is usually as a dishwasher, but that is rare and he usually gets fired because of his temper. He has cut all ties to the family except my dad. I haven't spoken to Scott in years, not that I haven't tried.

When I've been home for a visit I use to drop by his house and knock. He would open the door a crack so all I could see was one of his eyes. I'd say, hey Scott, come on out and lets talk. He'd say, "no, no I can't, I just can't", and shut the door. It was kind of creepy to be honest. After a while he wouldn't even answer the door, I'd see him peeking out the window though. Sometimes I thought my brother might be the unabomber until they actually caught the guy.

I was pregnant when my complex-partials began. The baby I was pregnant with at the time also had complex partial seizures and was on meds for two years. She seems to have outgrown the seizures themselves, but she seems to have some behaviour problems. I took a test on the internet once for ADD for her, instead of ADD a TLE disorder popped up as her diagnosis! I've never heard of such a thing and I can't find the test any longer..wish I'd printed it out.

This is her first year of kindergarden and I'm watching her very closely. The first sign of any problem and she will have the help that the rest of my family wasn't given.

As for myself, even though my seizures didn't begin until my mid 30's I can remember as a teenager having auras and wondering what was wrong with me. I thought I was crazy because of all the weird feelings that would rise up in me. Like an awful, intense feeling of revulsion that would come out of no where. I can still remember being puzzled by it and wondering why I would be feeling something like that. I always just chalked it up to teenage moodswings, but I don't think so anymore.

Anyway, I've kind of rambled, but I do know exactly what you are talking about.

[This message has been edited by kaymad41 (edited 08-24-2003).]

Hi,
I have a younger sister and she has epilepsy,she has grand mals.I don't see much of her as she lives on your side of the pond lol.I can also remember my younger brother having some kind of siezure when he was maybe 10 yrs old.It was crazy,as my dad was holding him upside down,panicking,as my brother had bit his tongue,and blood was pouring from his mouth.I will never forget that!.Whether it was epileptic,I don't know,my brother is a dark horse and not only does he not confide in me,but he locks himself away in his room at my mothers house (he moved back home after a failed marriage).But having said that,it's like me locking myself away when I don't want to see anybody because I am going through a period of self loathing.

My mother is in complete denial of my illness,she has never,ever spoken to me about it.My dad is dead now he was ex army,and was not a warm person,(Iam not saying that all forces personel are cold,it's just mine was),we didn't get on at all,he just threatened me a lot,you know belt off to me etc.So I grew up not knowing if It was normal to feel like I did,and to sit in class staring,while I came round,with my teacher pounding my back,and yelling at me to take notice.

I struggled greatly at school,I didn't mix much.My reports were not very inspiring,but my dad would just look for the part where he was to sign it,and give me it back thinking I was stupid.I don't know how normal people think,or what normal is.I can be a cold person myself sometimes,Is this T.L.E,or my upbringing?.

I can't be all that stupid though because I did work for 29 years,as a fitter,I can remember,one day taking notes,about the things I would need to do a repair at the week end.My mate just stood there smirking,as he thought I was pulling a fast one,to get some overtime,because and I still can't believe what he told me...we had already done the job.that scared me.The months after that,occasionally I couldn't read blueprints,and yet I had alway's worked with them.I started doubting my abilities,and feeling insecure.I used to miss the lathe handle and nearly fall into the chuck.I got claustrophobic.My tinnitus got worse,and my complex partial siezures increased.I had to sleep after a siezure,and so trying to get out of the way,when people were looking for was nearly impossible.Anyway I won't tell you everything about work because I could write a book about some of the things that have happened to me lol.But I will say something,My neuro say's people with T.L.E,think in a different way to anyone else (his words not mine),and when on a breakdown at work I alway's had a different approach to a conclusion.So maybe he's right,do you find that?.

I have a shocking memory,names,faces,dates,people get upset because I walk past them,not recognising them.I have a tablet dispencer cause I can't remember if I have taken them.
I get very depressed and definately irritable,I have been told I am like two different people sometimes,nice and then obnoxious.I generally get depressed just before a siezure.My siezures start with dejavu mainly,or a word or song etc,then the dizzyness,and then that awful sickness that can't be described to anyone (except us),then I hold my left arm cause it hurts like hell,then I slump to the floor.

About being judged...When talking to people,if it comes out in conversation that I am epileptic (and it does doesn't it?),they seem surprised that I have held a job for so long.That's because I don't fit into the category that someone like me should be in..epileptic!(sarcasm)When It got out at work what was wrong with me,some people said "oh that explains it",but not everyone.A lot of peole don't take time to educate themselves about epilepsy,they just blindly follow everbody else,and men are worse.We are non of us normal,I don't mean just us,I mean the Straights too.My doc alway's say's "what's normal Garry?".
So In my case it looks hereditary doesn't it?.And now as if that isn't enough,I am now hypothyroid as well lol.And No you haven't bored me,If It wasn't for these boards,I would have ended up not knowing there are other peole like me.
Take care
garry

Hello All,

I'm stunned... don't know how else to discribe it. Rain, Garry thank you so much for sharing this!!

Most everyone knows about Jake on this board. He's 20 mths with TLE, very classic CPs generalization with TCs just in case you missed the first half the show... He had his first seizure that we witnessed in Oct. 02.

Flash Back to March 01: My daughter Jenny, now 14, was diagnosed with ADD and being treated by a wonderful ped. On her first follow up visit the Dr is asking Jenn if the new meds have helped her at all. Jenny went from making D's and F's to making A's and B's (at first there was much tutoring involved to get her scores up - but not now). Anyway, she replys to the ped. that yes she is able to pay attention in class, grades have improved and she feels better about her self in general.

BUT... she said that she still "goes away" (her exact words). When asked to explain she told the Dr that there are times that she can tell someone is talking to her, but she can not tell who the person is especially in a crowd. She said that sometimes she can tell who is speaking and hear the words, but not be able to comprehind what was spoken. She also explained that sometimes when she's really tired that she can see everything going on around her but can not interact, she's gone away!

The ped sent Jenn out of the room and explained to me that she thought that she was having absent or simple particials seizures and sent her for an EEG that came back normal, nothing else was done, except for Momma slowly learning about ADD and even seizures to a degree (a lingering fear).

I found out a couple of months ago that there is a family history. I have cousins with E that no one ever mentioned when Jake first started seizing. My father has always had language disabilaties, both spoken and written. I see this same disfunction in Jenny. We caught Jenn's and got help. Dad's also been treated for bi-polar since 81.

Jenny has an appointment with Jake's neuro on 9/8. Rain, I'm with you on this one. I think it's a family disfunction and several of us suffer to different degrees. Jenn's had a few recent events that friends have noted and talked to me about since they've found out about Jake. Jenny doesn't remember them with much detail. Pretty scarry stuff. I want to address this for/with her before she starts driving. I know that the onset of her monthly cycles could make this worse as well.

Thanks again for sharing. I just kept thinking that there is a connection, there has to be. Now I know that my logic is just that LOGIC, not grasping for answers about one sick child, but maybe the whole family. (((big sigh))) My self included? Yes, the more I read the more I wonder...

Hugs to you both, I feel so much better, glad that I took a peek at this one.

Love and light

Lisa and Kids

[This message has been edited by LisaGuthrie (edited 08-27-2003).]