Please tell me your experience of TLE

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Hi I have recently developed what I am 99% sure is TEMPORAL LOBE EPILEPSY Can people with this please just tell me their experience of developing it, tests, treatments and progression? Would help me to hear other people’s experiences to see if mine is similar Thank you :)

Comments

Hi Emily,I already shared

Submitted by birdman on Sat, 2019-12-14 - 09:13

Hi Emily,I already shared some of my story with you. I'm glad to share but I was hoping you would get comments from some other people. I had febrile seizures as an infant and had the encephalitis at six months old. Sometime before grade school I started to have the "funny feelings". I really felt stupid sharing these with others as I knew this sounded so crazy. They came with a tickle in the stomach, a sour smell and taste, and a feeling like I had been in the exact same place before. These were hard to describe and then the doctor would often step out of the room with my mom to have a short discussion. At those moments I wondered was my experience so bizarre that the doctor didn't want me to hear about how crazy he thought I was? I think my pediatrician attempted to treat these with medications. By the time I was in first grade I started to experience the staring spells where I became unaware of what happened. I was told I picked at my chest and made chewing movements. Afterward I was hurt to be told that I wasn't all there for a while. Sometime around then I was referred to a neurologist. He sent me in for my first EEG and got me on more medications which didn't stop the seizures and often made me more irritable. Social problems and controlling my anger continued to be a major problem. By fifth grade I was transferred to another school. Through my teens I continued to be switched around to different schools. I also started to have grand mals. I was sick of the pills and wanted to have brains surgery. But in the late seventies and early eighties there was not epilepsy surgery center for a thousand miles. More pills, seizures, increase, seizures, increase.....Finally at age fifteen I was free from seizures for many months. My doctors promised that many children outgrow there seizures so we agreed with doctor that it would be worth a try to get off the pills. Life was wonderful for a few weeks but then BOOM. Status epilepticus--non stop seizures and intensive care unit. This happened again at age 21 and so I have never been off pills again.I was referred to an epilepsy center to be considered for surgery. The first step to qualify was that I needed to fail three drug trials. Before doctors will do brain surgery they want to be sure patient's seizures cannot be controlled with meds. That was a lengthy process. I started to keep track of all my seizures and medications on my computer then because I did not want to have to go through any of this again. In 1993 I had a portion of my right temporal lobe removed. The seizures continued. in 1999 I had VNS implanted. I was treated with it for 5 years. The seizures continued. I tried many more new meds since that brain operation. Seizures continue and the side effects of many of the pills left me more aggressive I could kill. Not worth the control. Just this year I got the RNS unit implanted and it offers the greatest hope.Many years ago when I was looking for support if there was anyone else like me. There were no support groups around in the rural area I live. But I found great encouragement reading books like Schachter's book, Epilepsy in Our Words. I'll bet you'll love it.Mike

Hi Emily,I already shared some of my story with you.  I'm glad to share but I was hoping you would get comments from some other people. I had febrile seizures as an infant and had the encephalitis at six months old.  Sometime before grade school I started to have the "funny feelings".  I really felt stupid sharing these with others as I knew this sounded so crazy.  They came with a tickle in the stomach, a sour smell and taste, and a feeling like I had been in the exact same place before.  These were hard to describe and then the doctor would often step out of the room with my mom to have a short discussion.  At those moments I wondered was my experience so bizarre that the doctor didn't want me to hear about how crazy he thought I was? I think my pediatrician attempted to treat these with medications.  By the time I was in first grade I started to experience the staring spells where I became unaware of what happened.  I was told I picked at my chest and made chewing movements.  Afterward I was hurt to be told that I wasn't all there for a while.  Sometime around then I was referred to a neurologist.  He sent me in for my first EEG and got me on more medications which didn't stop the seizures and often made me more irritable.  Social problems and controlling my anger continued to be a major problem.  By fifth grade I was transferred to another school.  Through my teens I continued to be switched around to different schools.  I also started to have grand mals.  I was sick of the pills and wanted to have brains surgery.  But in the late seventies and early eighties there was not epilepsy surgery center for a thousand miles.  More pills, seizures, increase, seizures, increase.....Finally at age fifteen I was free from seizures for many months.  My doctors promised that many children outgrow there seizures so we agreed with doctor that it would be worth a try to get off the pills.  Life was wonderful for a few weeks but then BOOM.  Status epilepticus--non stop seizures and intensive care unit.  This happened again at age 21 and so I have never been off pills again.I was referred to an epilepsy center to be considered for surgery.  The first step to qualify was that I needed to fail three drug trials.  Before doctors will do brain surgery they want to be sure patient's seizures cannot be controlled with meds.  That was a lengthy process.  I started to keep track of all my seizures and medications on my computer then because I did not want to have to go through any of this again.  In 1993 I had a portion of my right temporal lobe removed.  The seizures continued.  in 1999 I had VNS implanted.  I was treated with it for 5 years.  The seizures continued.  I tried many more new meds since that brain operation.  Seizures continue and the side effects of many of the pills left me more aggressive I could kill.  Not worth the control.  Just this year I got the RNS unit implanted and it offers the greatest hope.Many years ago when I was looking for support if there was anyone else like me.  There were no support groups around in the rural area I live.  But I found great encouragement reading books like Schachter's book, Epilepsy in Our Words.  I'll bet you'll love it.Mike

Hi Emily,I already shared some of my story with you. I'm glad to share but I was hoping you would get comments from some other people. I had febrile seizures as an infant and had the encephalitis at six months old. Sometime before grade school I started to have the "funny feelings". I really felt stupid sharing these with others as I knew this sounded so crazy. They came with a tickle in the stomach, a sour smell and taste, and a feeling like I had been in the exact same place before. These were hard to describe and then the doctor would often step out of the room with my mom to have a short discussion. At those moments I wondered was my experience so bizarre that the doctor didn't want me to hear about how crazy he thought I was? I think my pediatrician attempted to treat these with medications. By the time I was in first grade I started to experience the staring spells where I became unaware of what happened. I was told I picked at my chest and made chewing movements. Afterward I was hurt to be told that I wasn't all there for a while. Sometime around then I was referred to a neurologist. He sent me in for my first EEG and got me on more medications which didn't stop the seizures and often made me more irritable. Social problems and controlling my anger continued to be a major problem. By fifth grade I was transferred to another school. Through my teens I continued to be switched around to different schools. I also started to have grand mals. I was sick of the pills and wanted to have brains surgery. But in the late seventies and early eighties there was not epilepsy surgery center for a thousand miles. More pills, seizures, increase, seizures, increase.....Finally at age fifteen I was free from seizures for many months. My doctors promised that many children outgrow there seizures so we agreed with doctor that it would be worth a try to get off the pills. Life was wonderful for a few weeks but then BOOM. Status epilepticus--non stop seizures and intensive care unit. This happened again at age 21 and so I have never been off pills again.I was referred to an epilepsy center to be considered for surgery. The first step to qualify was that I needed to fail three drug trials. Before doctors will do brain surgery they want to be sure patient's seizures cannot be controlled with meds. That was a lengthy process. I started to keep track of all my seizures and medications on my computer then because I did not want to have to go through any of this again. In 1993 I had a portion of my right temporal lobe removed. The seizures continued. in 1999 I had VNS implanted. I was treated with it for 5 years. The seizures continued. I tried many more new meds since that brain operation. Seizures continue and the side effects of many of the pills left me more aggressive I could kill. Not worth the control. Just this year I got the RNS unit implanted and it offers the greatest hope.Many years ago when I was looking for support if there was anyone else like me. There were no support groups around in the rural area I live. But I found great encouragement reading books like Schachter's book, Epilepsy in Our Words. I'll bet you'll love it.Mike

HiMy seizures started when I

Submitted by Meggo on Tue, 2019-12-17 - 23:39

HiMy seizures started when I was 8, I was 9 when I was diagnosed a few months later. They last about 10 secs to a minute and I feel as if I am in a dream but usually I am still aware of what is going on around me (before I was medicated they were stronger and I blanked out with them). They are never convulsive. I can usually feel the seizure coming on a few moments before it happens.The aura feels like an extreme sense of unprovoked dejavu and random emotions eg scared or excited, and often I feel like there are other (imaginary) people around. While this is happening I know that it is not real. Often my eyelids twitch a bit or shoulders jerk slightly and breathing quickens. I am on topirimate and oxcarbazapine however I still get several seizures a week. My TLE is more complicated than most because it's autoimmune and so I also go for a drip every 2 months (IVIG). I am starting to look into autoimmune specific medications with my consultant.