temporal lobe epilepsy?

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New Member

Date Joined Feb 2005
Total Posts : 4
   Posted 2/15/2005 3:33 PM (GMT -7)   
Hi folks,

This is my first posting on here. Found the site last night and gotta say what a relief to read other people say the things I feel. I'm also glad to know - well, maybe glad not the right word - but glad I'm not the only one who feel like banging their fists on the table and saying ' just bloody fix me!'

I've not been diagnosed with TLE yet, it's a prelimenary, could be, maybe, possibly, we'll not tell you just yet scenario which I'm finding very frustrating to deal with.

I've been having EEGs MRIs and various other tests for just over a year now, in that time I've only seen a neurologist once.

My doc is very supportive and helpful to a point, but not enough that I'm still left feeling frustrated and angry at not getting answers to what I feel are simple enough question. I'm hoping I can throw myself to you guys for some support, advice and opinions.

I've never been aware of having any kind of epilepsy before and have to say in my own ignorance I always thought epilepsy was the sudden jerking movement, I never realised there were so many different variations. I always put the forgetfulness and confusion down to me having the odd 'blond' moment.

In June last year I had an episode, the only thing about it I remember is waking up and wondering where I was. The last three years have been wiped out. The worst part of that is, in the last 18 months or so everything in my life has changed. Sold my house, moved away from my friends, left my job, and moved in with a man who is my partner. I don't remember any of these things, it makes life very confusing.

I'm not really sure what a fit is for me or how to know I'm having one, one of the major worries is that when I have a fit I'm terrified I am I going to wake up with more memory missing? My doc response to most of my questions has been 'I can't be certain'
has anyone else had experience of losing memory in this way? Is it someting that might happen again?
these are the feelings I get, again my docs not saying yes or no, so I wonder if anyone can advise me are these things related to epilepsy?

I get a tingle sensation. the only way I can describe it is if you've ever put your tongue to a 9v battery it's that tingle, though it happens elsewhere and in small areas, an ear, my neck, my head, elbow, leg. arm. chin. nose - wherever it's happening that part of me feels somehow disjointed from the rest of me.
I get a head sensation, not like a headache more like my brain's busy doing something else and I'll have to wait til it's finished before I can use it.
I get a sudden panic feeling, wherever I happen to be I just need to not be there, whether that's getting off a bus in the middle of no-where or abandoning the trolley in the supermarket.
I get very sleepy like I need to go to sleep right now this second.
I get an angry feeling for no reason and with it very violent thoughts, I'm actually scard I might hurt someone.
The strangest feeling I get is the 'have to do' feeling. There's something comes into my head whether it be buy that newspaper or write that word down, whatever it is until it's been done, that thing is my reason to exist, my sole purpose in life.
I get very focused on the most stupid thing, it can be like the pencil I'm holding is THE most fascinating thing in the world and I just have to stare at it.

I find it all very frustrating, mostly because my body is doing things that I can't make it not do. At the same time as having these thought I feel a sense of awareness about what I'm doing and how silly it is but I still can't stop doing it.

Are these things typical of epilepsy?

thanks for reading this, I hope to hear from some of you with advice and opinions even if you just want to tell me I'm not crazy ;o)
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Veteran Member

Date Joined Jul 2003
Total Posts : 585
   Posted 2/15/2005 8:17 PM (GMT -7)   
Some of it sure sounds familiar. I am glad you have such a supportive doc! YOu will find others here who deal with TLE as well. Helps to know you are not alone!!

Welcome Gordee

Veteran Member

Date Joined Feb 2003
Total Posts : 668
   Posted 2/15/2005 10:13 PM (GMT -7)   
Re memory loss - This could be related to epilepsy or the meds used to treat it (are you on meds ?).
My short term memory is almost totally gone and my recall isn't much better.
It's caused problems with my job too but that's a whole other story. Besides this I have slurred speech and very poor gait and coordination(as well as several other side effects from the meds), people think I'm drunk. I've even been pulled over by the police as DUI until they saw my medic alert bracelet.
Lots more to say but I don't want to bore you all.
Re: MRI,EEG,CAT SCAN, blood test etc, it is normal for these tests to come back "NORMAL" as the epilepsy can stay dormant in your body for up to several years and then something may trigger another seizure.
Randy (ontario, Canada)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

New Member

Date Joined Feb 2005
Total Posts : 4
   Posted 2/16/2005 2:40 AM (GMT -7)   
I'm not on meds yet as not been fully diagnosed, still waiting on the neurologist - who I've only seen once - sending me an appointment to discuss his diagnosis. All I'm takin just now is Efexor from doc, before the memory loss I'd been taking Epilem for a few weeks prescribed by doc though no epilepsy diagnosed at that point.

Veteran Member

Date Joined Sep 2004
Total Posts : 775
   Posted 2/16/2005 7:09 AM (GMT -7)   
You should cross reference that Efexor in the PDR. SOmthing tells me that may not be the best drug for someone with a possible seizure disorder. (ginny what do you say, you have learned alot from Lindy, no?)

Alot of it sounds familiar to me. You also have had alot of life changes in the past few years. Another reason to set off your seizures. Stress is one of the BIGGEST trigger factors in any seizures.

Believe it or not, I was supposed to start Nursing school in Sept 04, the same month of my diagnosis. I had a TC (grand Mal). THat is what helped dx me. Even though I was so into the medical field, I had no clue about all the different seizures there are. Please read this link below. It was a great deal of help to me when I was dx'ed .. THere are so many seizure types it is incredible. And if your insurance will allow, see an epileptologist, one who is a neuro, but speacializes only in epilepsy.

take care and hope to hear from you soon. Tracy

New Member

Date Joined Feb 2005
Total Posts : 4
   Posted 2/16/2005 4:37 PM (GMT -7)   
Hi again, couple of things I forgot to ask ....

Neurologist said from my first MRI I had a 'mal-rotated hipocampus' anyone know what that means?

and bit of a long shot, I gather it's different for all but, can something like repetitive sound act as a trigger?

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