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Temporal Lobe Epilepsy: what does it feel like?
Sat, 06/06/2009 - 13:00Hi 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
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by laurapryor44 on Thu, 2010-09-09 - 16:05
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by Veete on Sun, 2010-09-26 - 14:20
I have right temporal lobe epilepsy. I get auras (deja vu, feeling of doom as if I am going to die). I do not get any of the automatic gestures (lip smaking, twitching) and during my seizures I can talk and walk. I just have no idea what is going on. I generally ask the same questions over and over. But I have had seizures where the person I was with had no idea that I was having a seizure until I told them. If I am with someone I do not know well, I never tell them. I just go to a phone and call my husband and tell him. In fact one of the hallmarks of my seizures is me calling my husband over and over to tell him that I feel funny. I have come out of a seizure to see a note taped to the phone telling me that I am having a seizure and to stop calling my spouse. (He told me that the note did no good, I still called him.)
My knowledge of my seizures comes from the observations of my family. I only remember the aura and coming out of the seizure. They tell me that my voice sounds different as if I were asleep. And I lose things in short term memory. I forget to go to appointments, peoples names, movies I have seen. It is all very weird and I would not think I was having seizures except they caught one on an eeg. I tend to have them only if I miss my medicine or if I do not get enough sleep (meaning if I lose a lot of sleep as in staying up all night or working over night or if I have several days of only a few hours sleep. missing an hour here or there does not affect me.)
I have right temporal lobe epilepsy. I get auras (deja vu, feeling of doom as if I am going to die). I do not get any of the automatic gestures (lip smaking, twitching) and during my seizures I can talk and walk. I just have no idea what is going on. I generally ask the same questions over and over. But I have had seizures where the person I was with had no idea that I was having a seizure until I told them. If I am with someone I do not know well, I never tell them. I just go to a phone and call my husband and tell him. In fact one of the hallmarks of my seizures is me calling my husband over and over to tell him that I feel funny. I have come out of a seizure to see a note taped to the phone telling me that I am having a seizure and to stop calling my spouse. (He told me that the note did no good, I still called him.)
My knowledge of my seizures comes from the observations of my family. I only remember the aura and coming out of the seizure. They tell me that my voice sounds different as if I were asleep. And I lose things in short term memory. I forget to go to appointments, peoples names, movies I have seen. It is all very weird and I would not think I was having seizures except they caught one on an eeg. I tend to have them only if I miss my medicine or if I do not get enough sleep (meaning if I lose a lot of sleep as in staying up all night or working over night or if I have several days of only a few hours sleep. missing an hour here or there does not affect me.)
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by nd2sng on Sat, 2010-07-31 - 23:03
Hi...
I know you have tons of people telling you what it feels like to have TLE, but I thought I would share my experience anyway. I was diagnosed with TLE in January after a Tonic-clonic seizure while pregnant. The EEG and showed abnormalities consistent with TLE. Since that seizure, my seizure activity has been higher. After learning about TLE, I recognize that I have been having symptoms since I was a teen.
I experience simple and complex partial seizures. It is possible that I am experiencing larger ones during my sleep, but that is whole other issue right now. My seizures start with an aura that affects my hearing. Suddenly I cannot hear out of one of my ears as though i stood in front of a loud speaker for 2 hours, then it turns to a ringing that is just a single tone. Sometimes it ends there with maybe a little dizziness. Sometimes it develops into something bigger. I am filled with a sense of dread and then I feel like I am being pulled into myself, at which point I feel nauseated and cold sweats. Then i enter a waking dream. The contents of the dreams are rarely anything I remember except for about 15 min to an hour after the seizure. During the dream, i know I am not asleep, and I can feel myself sitting or whatever, but I cannot tell what is real or what is the dream. Sometimes I will respond to a question in the dream... out loud. That is the weird part, cause no one knows what I am talking about, or even saying. When I come out of it, I am confused and have weird flashbacks to the dream. I am never able to discern even afterwards what was real and what wasn't. I am exhausted and my head often hurts. I have always experienced simple partial seizures as an aura before a migraine, I just didn't know it wasn't true migraine aura.
I am still working with my neurologist to find a regime of medications that will control my seizures without rendering me unable to function. I wish you luck in your endeavors. Hang in there and don't give up. Even though its tough, life is always worth experiencing so don't let yourself miss out on it. :)
Hi...
I know you have tons of people telling you what it feels like to have TLE, but I thought I would share my experience anyway. I was diagnosed with TLE in January after a Tonic-clonic seizure while pregnant. The EEG and showed abnormalities consistent with TLE. Since that seizure, my seizure activity has been higher. After learning about TLE, I recognize that I have been having symptoms since I was a teen.
I experience simple and complex partial seizures. It is possible that I am experiencing larger ones during my sleep, but that is whole other issue right now. My seizures start with an aura that affects my hearing. Suddenly I cannot hear out of one of my ears as though i stood in front of a loud speaker for 2 hours, then it turns to a ringing that is just a single tone. Sometimes it ends there with maybe a little dizziness. Sometimes it develops into something bigger. I am filled with a sense of dread and then I feel like I am being pulled into myself, at which point I feel nauseated and cold sweats. Then i enter a waking dream. The contents of the dreams are rarely anything I remember except for about 15 min to an hour after the seizure. During the dream, i know I am not asleep, and I can feel myself sitting or whatever, but I cannot tell what is real or what is the dream. Sometimes I will respond to a question in the dream... out loud. That is the weird part, cause no one knows what I am talking about, or even saying. When I come out of it, I am confused and have weird flashbacks to the dream. I am never able to discern even afterwards what was real and what wasn't. I am exhausted and my head often hurts. I have always experienced simple partial seizures as an aura before a migraine, I just didn't know it wasn't true migraine aura.
I am still working with my neurologist to find a regime of medications that will control my seizures without rendering me unable to function. I wish you luck in your endeavors. Hang in there and don't give up. Even though its tough, life is always worth experiencing so don't let yourself miss out on it. :)