Temporal Lobe Epilepsy: what does it feel like?

Re: Temporal Lobe Epilepsy: what does it feel like?

Submitted by Shakey Mom on Thu, 2010-03-18 - 12:04

I am 33 year old and have had Temporal Lobe Epilepsy most of my life, but was not diagnosed until I was 21.  As a small child I had a hard time trying to describe "that weird thing that happens to me"... so eventually I just stopped trying.  I thought I was re incarnated until I was 13 years old.

Your temporal lobes control memory, taste, smell, sight and emotions.... 

I have always had seizure activity in my temporal lobes, but never lesions.

When I have my auras, I have symptoms that affect my memory, taste and smell.  I get a deja vu feeling, smell and taste the same unrecognisable smell and taste everytime.  I feel a kind of light headed dizziness.... not a spin in circles dizziness.  It is so hard to describe..  Almost like I am in a weightless bubble.   I lose all track of time.  When I come out of my 'trance' I have no idea whether 15 seconds or 15 minutes have passed.

When all is over, I have a headache and stomache ache and I am exhausted.

My husband tells me that it sounds like a scene from a sci fi flic!!

Hope this helps.

Re: Temporal Lobe Epilepsy: what does it feel like?

Submitted by EmilyConfused on Sat, 2010-07-03 - 17:14

I have a problem. I think I have TLE, I have all of the symptoms including fear which is keeping me from my doctors. When i go into the office I am too scared to tell them what is going on even though I know they can help the fear paralyzes me and I can't tell them everything I need to. I also had a traumatic childhood, though I have moved on the doctors continue to think the déjà vu symptoms (more like feeling of being in a dream while I am awake) and crippling fear are symptoms of a panic disorder, but my symptoms do not always happen when I am panicked sometimes it happens for no reason. I am scared they will not come up with the right diagnoses. It has been 3 weeks since my epilepsy sleep deprived study and I have not been contacted by the doctor. Is this normal? Also the déjà vu does not happen frequently the last one I had prior to the resent times, was 3 years ago; though I regularly have the other symptoms, smell, taste, fear, rising feeling in my stomach, dizziness, and frequent migraines. I also have an extreme fight or flight response, I get irritable for no reason sometimes, and I heard excessive water drinking was a symptom, I drink about a gallon a day, I feel like I am addicted. I seem to have more symptoms, not just the drinking water, when I am hot or tired.I thought the dream feelings were gone until I was in lecture a few months back and I sneezed, then had the dream feeling, I laid my head on my desk and the next thing I knew the professor was asking me if I was okay.I fainted several times as a child, though I don’t remember have a dream state before I fainted I do remember that while I was passed out it was always a dream that I was just about to die. One time a tiger was in my face and another there was a train coming right at me. Is this common? Have others passed out after a dream state or déjà vu without the convulsions that other epileptics have?Is random twitching in the body normal for everyone? What if it is in the same place every time for me the back of my thighs usually the right? Also sometime my legs want to twitch I try to stop them but it hurts to try and stop them as if they just need to be swayed back and forth, this is not always a symptom just something that happens when I am tired.They want to label me as crazy and I just want them to really listen to my symptoms without thinking of my past childhood experiences, but I can’t tell them my symptoms because I am afraid they will think I am crazy. What should I do, I am so tired and scared.

I only get to blog here once and I need support please email if you would like to help me through this process emilyobert@hotmail.com and put “Epilepsy Answers”  as the subject. Thank you for any help or encouragement you can provide.