Temporal Lobe Epilepsy: what does it feel like?

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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

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

Submitted by CynthiaJanuary on Sun, 2013-11-10 - 07:27

Dear RokChik1,

I've also been diagnosed with temporal lobe epilepsy. My symptoms were prominent in my childhood and teens, then they got less noticeable and troublesome until I went through menopause. I'm 61 now. I had been diagnosed as having a psychotic disorder (by shrink I went to for help with an occasional delusionary state and perceptual disturbances.) He put me on some meds, for psychosis, that made everything worse. So, I know what you mean by having bad reactions to meds.

i eventually told this shrink that I felt I was having seizures, because I was losing consciousness for brief periods, and afterward I would have a loss of short term memory and feelings if mental fatigue. I gave this shrink too much power over me. When he finally said "well, go see a neurologist then," I found a neurologist who is also an epileptologist. He figured me out right away. CT scans show lesions all around the outer cortex of my brain. He says I also have migraine, though I rarely have a headache. Non-headache migraine.

My primary symptoms are déjà vu and jaime vu experiences. That is (sorry for the probably wrong spelling) feelings of "damn, I know what's gonna happen, because I've done this already." The opposite happens a lot, too. "Holy crap, I don't really know where I am or even kinda who I am."

I take lamictal and it's been very helpful. I don't like being dependent on a medication so occasionally will wean myself off if it. This has ALWAYS led to horrible results - confusion, fear and anxiety attacks, slight delusional state, can't drive, an eery feeling of "where the heck am I; who are these people,?" even amongst my family. I did this as recently as last summer. Stupid head that I am. I go into denial easily and start to think that I've kicked this thing. But I haven't, and probably never will.

I hope that this has helped you not feel so alone. I feel very alone and have not done well holding a job. My brother also has TLE but he doesn't even try to live a normalized life, just stays in the house and gives in to paranoia.

i wish you well and hope that you will keep writng of your experiences with treatment.

CynthiaJanuary

massachusetts USA

Dear RokChik1,  I've also been diagnosed with temporal lobe epilepsy. My symptoms were prominent in my childhood and teens, then they got less noticeable and troublesome until I went through menopause. I'm 61 now. I had been diagnosed as having a psychotic disorder (by  shrink I went to for help with an occasional delusionary state and perceptual disturbances.)  He put me on some meds, for psychosis, that made everything worse. So, I know what you mean by having bad reactions to meds.  i eventually told this shrink that I felt I was having seizures, because I was losing consciousness for brief periods, and afterward I would have a loss of short term memory and feelings if mental fatigue. I gave this shrink too much power over me. When he finally said "well, go see a neurologist then,"  I found a neurologist who is also an epileptologist. He figured me out right away. CT scans show lesions all around the outer cortex of my brain. He says I also have migraine, though I rarely have a headache. Non-headache migraine.  My primary symptoms are déjà vu and jaime vu experiences. That is (sorry for the probably wrong spelling) feelings of "damn, I know what's gonna happen, because I've done this already." The opposite happens a lot, too. "Holy crap, I don't really know where I am or even kinda who I am." I take lamictal and it's been very helpful. I don't like being dependent on a medication so occasionally will wean myself off if it. This has ALWAYS led to horrible results - confusion, fear and anxiety attacks, slight delusional state, can't drive, an eery feeling of "where the heck am I; who are these people,?" even amongst my family. I did this as recently as last summer. Stupid head that I am. I go into denial easily and start to think that I've kicked this thing. But I haven't, and probably never will.  I hope that this has helped you not feel so alone. I feel very alone and have not done well holding a job. My brother also has TLE but he doesn't even try to live a normalized life, just stays in the house and gives in to paranoia.   i wish you well and hope that you will keep writng of your experiences with treatment.   CynthiaJanuary massachusetts USA              

Dear RokChik1,

I've also been diagnosed with temporal lobe epilepsy. My symptoms were prominent in my childhood and teens, then they got less noticeable and troublesome until I went through menopause. I'm 61 now. I had been diagnosed as having a psychotic disorder (by shrink I went to for help with an occasional delusionary state and perceptual disturbances.) He put me on some meds, for psychosis, that made everything worse. So, I know what you mean by having bad reactions to meds.

i eventually told this shrink that I felt I was having seizures, because I was losing consciousness for brief periods, and afterward I would have a loss of short term memory and feelings if mental fatigue. I gave this shrink too much power over me. When he finally said "well, go see a neurologist then," I found a neurologist who is also an epileptologist. He figured me out right away. CT scans show lesions all around the outer cortex of my brain. He says I also have migraine, though I rarely have a headache. Non-headache migraine.

My primary symptoms are déjà vu and jaime vu experiences. That is (sorry for the probably wrong spelling) feelings of "damn, I know what's gonna happen, because I've done this already." The opposite happens a lot, too. "Holy crap, I don't really know where I am or even kinda who I am."

I take lamictal and it's been very helpful. I don't like being dependent on a medication so occasionally will wean myself off if it. This has ALWAYS led to horrible results - confusion, fear and anxiety attacks, slight delusional state, can't drive, an eery feeling of "where the heck am I; who are these people,?" even amongst my family. I did this as recently as last summer. Stupid head that I am. I go into denial easily and start to think that I've kicked this thing. But I haven't, and probably never will.

I hope that this has helped you not feel so alone. I feel very alone and have not done well holding a job. My brother also has TLE but he doesn't even try to live a normalized life, just stays in the house and gives in to paranoia.

i wish you well and hope that you will keep writng of your experiences with treatment.

CynthiaJanuary

massachusetts USA

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

Submitted by CynthiaJanuary on Sun, 2013-11-10 - 07:27

Dear RokChik1,

I've also been diagnosed with temporal lobe epilepsy. My symptoms were prominent in my childhood and teens, then they got less noticeable and troublesome until I went through menopause. I'm 61 now. I had been diagnosed as having a psychotic disorder (by shrink I went to for help with an occasional delusionary state and perceptual disturbances.) He put me on some meds, for psychosis, that made everything worse. So, I know what you mean by having bad reactions to meds.

i eventually told this shrink that I felt I was having seizures, because I was losing consciousness for brief periods, and afterward I would have a loss of short term memory and feelings if mental fatigue. I gave this shrink too much power over me. When he finally said "well, go see a neurologist then," I found a neurologist who is also an epileptologist. He figured me out right away. CT scans show lesions all around the outer cortex of my brain. He says I also have migraine, though I rarely have a headache. Non-headache migraine.

My primary symptoms are déjà vu and jaime vu experiences. That is (sorry for the probably wrong spelling) feelings of "damn, I know what's gonna happen, because I've done this already." The opposite happens a lot, too. "Holy crap, I don't really know where I am or even kinda who I am."

I take lamictal and it's been very helpful. I don't like being dependent on a medication so occasionally will wean myself off if it. This has ALWAYS led to horrible results - confusion, fear and anxiety attacks, slight delusional state, can't drive, an eery feeling of "where the heck am I; who are these people,?" even amongst my family. I did this as recently as last summer. Stupid head that I am. I go into denial easily and start to think that I've kicked this thing. But I haven't, and probably never will.

I hope that this has helped you not feel so alone. I feel very alone and have not done well holding a job. My brother also has TLE but he doesn't even try to live a normalized life, just stays in the house and gives in to paranoia.

i wish you well and hope that you will keep writng of your experiences with treatment.

CynthiaJanuary

massachusetts USA

Dear RokChik1,  I've also been diagnosed with temporal lobe epilepsy. My symptoms were prominent in my childhood and teens, then they got less noticeable and troublesome until I went through menopause. I'm 61 now. I had been diagnosed as having a psychotic disorder (by  shrink I went to for help with an occasional delusionary state and perceptual disturbances.)  He put me on some meds, for psychosis, that made everything worse. So, I know what you mean by having bad reactions to meds.  i eventually told this shrink that I felt I was having seizures, because I was losing consciousness for brief periods, and afterward I would have a loss of short term memory and feelings if mental fatigue. I gave this shrink too much power over me. When he finally said "well, go see a neurologist then,"  I found a neurologist who is also an epileptologist. He figured me out right away. CT scans show lesions all around the outer cortex of my brain. He says I also have migraine, though I rarely have a headache. Non-headache migraine.  My primary symptoms are déjà vu and jaime vu experiences. That is (sorry for the probably wrong spelling) feelings of "damn, I know what's gonna happen, because I've done this already." The opposite happens a lot, too. "Holy crap, I don't really know where I am or even kinda who I am." I take lamictal and it's been very helpful. I don't like being dependent on a medication so occasionally will wean myself off if it. This has ALWAYS led to horrible results - confusion, fear and anxiety attacks, slight delusional state, can't drive, an eery feeling of "where the heck am I; who are these people,?" even amongst my family. I did this as recently as last summer. Stupid head that I am. I go into denial easily and start to think that I've kicked this thing. But I haven't, and probably never will.  I hope that this has helped you not feel so alone. I feel very alone and have not done well holding a job. My brother also has TLE but he doesn't even try to live a normalized life, just stays in the house and gives in to paranoia.   i wish you well and hope that you will keep writng of your experiences with treatment.   CynthiaJanuary massachusetts USA              

Dear RokChik1,

I've also been diagnosed with temporal lobe epilepsy. My symptoms were prominent in my childhood and teens, then they got less noticeable and troublesome until I went through menopause. I'm 61 now. I had been diagnosed as having a psychotic disorder (by shrink I went to for help with an occasional delusionary state and perceptual disturbances.) He put me on some meds, for psychosis, that made everything worse. So, I know what you mean by having bad reactions to meds.

i eventually told this shrink that I felt I was having seizures, because I was losing consciousness for brief periods, and afterward I would have a loss of short term memory and feelings if mental fatigue. I gave this shrink too much power over me. When he finally said "well, go see a neurologist then," I found a neurologist who is also an epileptologist. He figured me out right away. CT scans show lesions all around the outer cortex of my brain. He says I also have migraine, though I rarely have a headache. Non-headache migraine.

My primary symptoms are déjà vu and jaime vu experiences. That is (sorry for the probably wrong spelling) feelings of "damn, I know what's gonna happen, because I've done this already." The opposite happens a lot, too. "Holy crap, I don't really know where I am or even kinda who I am."

I take lamictal and it's been very helpful. I don't like being dependent on a medication so occasionally will wean myself off if it. This has ALWAYS led to horrible results - confusion, fear and anxiety attacks, slight delusional state, can't drive, an eery feeling of "where the heck am I; who are these people,?" even amongst my family. I did this as recently as last summer. Stupid head that I am. I go into denial easily and start to think that I've kicked this thing. But I haven't, and probably never will.

I hope that this has helped you not feel so alone. I feel very alone and have not done well holding a job. My brother also has TLE but he doesn't even try to live a normalized life, just stays in the house and gives in to paranoia.

i wish you well and hope that you will keep writng of your experiences with treatment.

CynthiaJanuary

massachusetts USA

Wondering what anyone thinks

Submitted by KTNCL on Sat, 2014-04-19 - 13:23

Wondering what anyone thinks about my experience and possible underlying causes besides the accidental overdose: In the past 2-3 years: Major stress 3 visions/ hallucinations Some sleep deprivation Some hypoglycemia Some migrains (seem to be related to caffeine or menstrual cycle) Small doses of Wellbutrin/ Adderall for depression/ ADD/ sleep issues (Off for a few month here and there but mostly on. Past few weeks: Feel like I'm having tiny conscious seizures where I go into deep thoughts that I can't break free of and usually have some insight, sometimes fearful, sometimes joyful. When I do break free of them, I feel Like I've been unfrozen. On my last refill of Wellbutrin, my doctors Office changed the type of pill from Regular to 12 hr without telling me, but Still said to take it 3x day. It said to take One pill, but I kept taking 2 3x day Because I didn't realize they'd given Me something different. After about 2 Weeks, I had an extreme overdose reaction in which I hallucinated that I'd died and heard my son's voice crying and saying "no! no!" I was telepathically communicating with angels but couldn't see them. Everything got brighter, I felt like I was in another realm Although I still saw everything in the room. I could communicate but when someone said something I Had to ask them to repeat it because I couldn't Remember what they said right after they said it. I felt tingly and tired and felt I would die at any moment Or had already died. U was staring off into space for a few hours, But could still sort of communicate although I didn't feel like I was there. My blood sugar was in the 60's When the ambulance came. They told me to eat Something and that it would wear off in a few hours. However, none of us realized I'd been given Sustained release pills so after it started Wearing off, it started again shortly afterward. I ended up spending 3 days in the hospital being treated Like I was psychotic and suicidal because of The things I told them (at this time they did not Realize I had overdosed.) when they Found that out, they sent me home the next day. I'm taking The normal amount of med now, but still feel There's something wrong in my brain. I'd like to get EEG's, etc. to see if there's more involved Than a simple overdose. They didn't do any brain Checking in the hospital, only blood tests. Please give me your opinions on what else may be wrong with me if anything and how My experiences relate to anyone's, thanks.

Temporal Lobe Epilepsy: what does it feel like?

Comments

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

Submitted by CynthiaJanuary on Sun, 2013-11-10 - 07:27

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

Submitted by CynthiaJanuary on Sun, 2013-11-10 - 07:27

Wondering what anyone thinks

Submitted by KTNCL on Sat, 2014-04-19 - 13:23

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