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Temporal Lobe Epilepsy: what does it feel like?

Sat, 06/06/2009 - 13:00

Hi Everyone!

This is my first time on this site and I am glad to have found you all!  I was "diagnosed" with Temporal Lobe Epilepsy 18mths ago following years of strange symptoms, 3 abnormal EEG's and an MRI which showed a leision in the Lt T Lobe.  I was supposed to take Lamictal but so far am too scared to.  I have different symptoms including, fear, shivering, dizziness, visual disturbances, etc.

My neurologist now thinks because my symptoms have changed i.e. shivering and some twitching of limbs occasionally, and a weird feeling that my stomach is rising into my throat and choking me ( at night) that I should have a Video EEG to clarify things.  I really don't want to take Meds until they are SURE that the diagnosis is correct because I react badly to meds. 

I would be really grateful if anyone could shed any light on what TLE is like for them and also if you have had the Video EEG what it's like.

Thanks!

 

Comments

I have no idea how old this

Submitted by JazyFae on Sun, 2019-01-06 - 06:34
I have no idea how old this thread is but it's like reading my own story. Started having small episodes like this in 2014. Get this funny feeling rising in my stomach up to my chest. Then I get intense fear and feeling like im going to be sucked out of my body. Then my heart is pounding feel sick and I shake. Looks like my EEG showed spikes in my temporal lobe. Now I am waiting for 72 hour EEG.

I have not been officially

Submitted by SSgtJarhead on Mon, 2019-01-14 - 08:53
I have not been officially diagnosed with TLE, but I know I have it. Years ago while searching sites such as this I cam across the common symptoms everyone typically feels before, during, and after a TLE experience. Not everyone has the same symptoms, all depends on what part of the brain is the focal point. Mine are pretty much like this and am uncertain of the trigger, perhaps stress, but still can't remember after an event occurs.- A few images flash before me, never animated, just kodak moments of some point in my life. Typically when I was young and almost always a happy event. Doesn't have to be a picture of me, could be a picture of an inanimate object like a toy or something along those lines. When this 'slide show' begins, as I call it, I know its coming on and can typically warn others with a finger pointing to the sky as if to tell them 'hold one'.- The next thing I deal with is a smell and taste of something burning, normally like an electrical smell, like the remnants of a house fire days after.- The images, or slide show, then gets faster, to the point it is almost like if pictures were stacked like a deck of cards and flipped/shuffled. I rarely remember any of these pictures.- The images then slow down, come to a stop, and I realize what has happened. I can sometimes remember the last image, but not all the time.- A sense of deja vu occurs.- I get a sick feeling in my stomach, butterflies, etc.- I then will feel either a sense of euphoria or, as of late, a sense of terror. Euphoria as in wide awake, extremely happy, etc. Terror in the sense that I feel as though I am being watched, even though I know I am not, and afraid of dark places.During these TLE events, I feel I still am aware of my surroundings, as I have had them while driving, jogging, etc, but I know I am not 100% focused during those times, but at the end of an event, everything seems to rush back/catch up with me all at once, which may explain the sickness feeling.

I have not been officially

Submitted by SSgtJarhead on Mon, 2019-01-14 - 08:59
I have not been officially diagnosed with TLE, but I know I have it. Years ago while searching sites such as this I cam across the common symptoms everyone typically feels before, during, and after a TLE experience. Not everyone has the same symptoms, all depends on what part of the brain is the focal point. Mine are pretty much like this and am uncertain of the trigger, perhaps stress, but still can't remember after an event occurs.- A few images flash before me, never animated, just kodak moments of some point in my life. Typically when I was young and almost always a happy event. Doesn't have to be a picture of me, could be a picture of an inanimate object like a toy or something along those lines. When this 'slide show' begins, as I call it, I know its coming on and can typically warn others with a finger pointing to the sky as if to tell them 'hold one'.- The next thing I deal with is a smell and taste of something burning, normally like an electrical smell, like the remnants of a house fire days after.- The images, or slide show, then gets faster, to the point it is almost like if pictures were stacked like a deck of cards and flipped/shuffled. I rarely remember any of these pictures.- The images then slow down, come to a stop, and I realize what has happened. I can sometimes remember the last image, but not all the time.- A sense of deja vu occurs.- I get a sick feeling in my stomach, butterflies, etc.- I then will feel either a sense of euphoria or, as of late, a sense of terror. Euphoria as in wide awake, extremely happy, etc. Terror in the sense that I feel as though I am being watched, even though I know I am not, and afraid of dark places.During these TLE events, I feel I still am aware of my surroundings, as I have had them while driving, jogging, etc, but I know I am not 100% focused during those times, but at the end of an event, everything seems to rush back/catch up with me all at once, which may explain the sickness feeling.

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