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Old 02-14-2005, 03:19 AM   #1
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takiteasy HB User
temporal lobe epilepsy and memory

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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Old 02-14-2005, 02:14 PM   #2
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Join Date: Oct 2004
Location: Brisbane Australia
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TanyaWatson HB User
Re: temporal lobe epilepsy and memory

Hello, welcome to the board and sorry that you are going through all of this, but you have definitely come to the right place for understanding and support.

Firstly, you are not going crazy. I don't think there is a person here that hasn't wondered the same thing at some point. Particularly with temporal lobe epilepsy (TLE), it affects the emotional centres of our brains, producing at times some frightening emotional variations.

Some of the things you describe are very much what I experience. Although I haven't lost my memory over a large period as you have, I definitely have a poor memory. I get the tingling sensation, the panicked feeling, the angry thoughts. Others will probably respond with other similar experiences to yours.

Be aware that you are not alone and keep fighting to find a good doctor. Epilepsy often will not show up on EEGs etc. so you really need a good doctor (Neurolgist or Epileptologist) to diagnose you correctly. You should keep a diary of all of your experiences (including time of day, any other unusual circumstances) as they are difficult to remember when you are sitting there in front of a doctor.

You are not alone. Good luck and remember that we are always here when you need support or somewhere to vent your frustrations!

Tanya

 
Old 02-15-2005, 04:29 PM   #3
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takiteasy HB User
Question Re: temporal lobe epilepsy and memory

Hi Tanya, thanks for the welcome

How long does the 'tingle' sensation usually last for you and is it a prelude to an episode? I've been getting it from Sunday through Monday.
I think I have most of mine at night when sleeping, I often wake up in the morning really tired like all I want to do is sleep.

I wonder too, my doc tells me it may be something that I've had all my life and it's just a case that the change in circumstances of life (I moved, got a new job, a new partner) might have aggrivated it somehow and it's now getting worse - is this someting that anyone knows to be possible?

 
Old 02-15-2005, 05:06 PM   #4
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TanyaWatson HB User
Re: temporal lobe epilepsy and memory

Hi again,

Tingles - each time I get it, it lasts less than a minute. It can happen just once out of the blue, or many times a day. These are not preludes to an episode for me - just simple partial seizures that go no further thank goodness. Any type of siezure will leave me feeling very listless and sleepy though. My preludes (auras) are dizzy spells that are unlike normal dizzyness but difficult to describe.

Reading between the lines of your last post, it sounds like you are under a LOT of stress. This is a biggy with E and should avoided as much as possible - much easier said than done I know. I actually found out I had E from havinga tonic-clonic (grand mal) after a period of extreme stress. If what you are currently experiencing are partial seizures, then you run the risk of them generalising and becoming more serious. You haven't mentioned whether you have been put on any medication - have you?

Tanya

 
Old 02-16-2005, 01:50 AM   #5
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takiteasy HB User
Re: temporal lobe epilepsy and memory

Hi there, I'm not on any epileptic medication yet, still waiting for the neurologist to make me an appointment to discuss his findings, though he has written to my doc and told her things like there's a mal-rotated part of my hipocampus (neither my doc nor me know what that means!) and he suspect it to be TLE. I've been on efexor for a few months, before that I was on epilem from the doc for a few weeks, I had been passing out or feeling very dizzy.

 
Old 02-16-2005, 03:35 PM   #6
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takiteasy HB User
Re: temporal lobe epilepsy and memory

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?

 
Old 03-01-2005, 05:02 AM   #7
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GoAwayEpi HB User
Re: temporal lobe epilepsy and memory

[QUOTE=takiteasy]Hi folks,


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.

Takiteasy....................... I could have not written a better post describing what happens to me...I wish I could give some advice but my nuero talls me that I may have these from time to time even on meds...I take Lamictal, was on Topomax, started with Klonopin...I know this doesn't help but just know you have another who has the same symptoms!


Allison

 
Old 03-15-2005, 09:54 PM   #8
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Location: West Hills, CA USA
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HelloKathy HB User
Re: temporal lobe epilepsy and memory

I totally can relate. Luckily I have been seizure free for 5 months now but I spent the last 10 years of my life feeling the same way as you. It's like I was high. At times I'd feel so much passion about a post it note! And other times, I'd forget that post it notes even exist.

 
Old 03-17-2005, 08:26 AM   #9
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DianaF HB User
Re: temporal lobe epilepsy and memory

I have been reading your correspondence and picked up on the fact you are not taking medication. Before I was on meds, I had episodes ALL day long too. You need to get on medication ASAP! There will be something out there that will work for you. I have been on almost every medication out there. Nothing controls my seizures completely, but it has cut them down to every 8-12 weeks.

About that tingly feeling you get. I get the same thing when my seizures start. It starts in my head and travels all the way down my body to my toes. It feel so strange.

I don't know why you get that feeling all day unless you are having seizures all day.

I wish you a lot of luck!!

Diana

 
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