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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 susibeee on Sun, 2009-08-23 - 08:49
Hi Lisa,
Have you made a decision regarding brain surgery???? I know exactly how you are feeling!!! I was diagnosed with Temporal lobe epilepsy in 2006 but it was caused by a tumour on my brain. I had been having the seizures for years before but suddenly they got out of control.
My neurosurgeon straight away wanted to do surgery instead of medication and it frightened me incredibly!!! It was a tough few weeks lead up to the surgery, exactly as u say -the thought of having someone cut into your head but! I am so so lucky to be able to say i am nearly 3 years seizure free. My last seizure was the morning of my operation.
It was a relief to have the operation behind me and i must admit the op wasn't as bad as i expected and the recovery was great, Easy for me to say now but i highly recommend it. I was also scared before i had surgery as i had hardly heard abouth anyone having brain surgery in the past but now it seems almost common and the surgeons are so experienced!! Best of luck decision making
Heres to good health!!!!
Susan
Hi Lisa,
Have you made a decision regarding brain surgery???? I know exactly how you are feeling!!! I was diagnosed with Temporal lobe epilepsy in 2006 but it was caused by a tumour on my brain. I had been having the seizures for years before but suddenly they got out of control.
My neurosurgeon straight away wanted to do surgery instead of medication and it frightened me incredibly!!! It was a tough few weeks lead up to the surgery, exactly as u say -the thought of having someone cut into your head but! I am so so lucky to be able to say i am nearly 3 years seizure free. My last seizure was the morning of my operation.
It was a relief to have the operation behind me and i must admit the op wasn't as bad as i expected and the recovery was great, Easy for me to say now but i highly recommend it. I was also scared before i had surgery as i had hardly heard abouth anyone having brain surgery in the past but now it seems almost common and the surgeons are so experienced!! Best of luck decision making
Heres to good health!!!!
Susan
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by ambdab01 on Thu, 2009-08-06 - 16:51
I am Lisa.
I have been feeling strange sensations for several years. I was origiannly told that I had migraines. The 1stmedicaine I took was Topamax. It is to control migraines and seizures. It controlled the symptoms for a while. It has a hal-life so if I missed 1 does I had a seizure. After 1 or so I aksed to chnage meds beacuse I did not liek the side effects. I did not feel like me. I forget things, I felt out of sorts and was slower to undersrand things. I statred Lamictal It controled the symptoms ome, but when under stress the seizures returned. I began having panic attacks. Some episodes were minor. At the time I did not know what o call them. I felt like I was going to vomit and could not communicae well. Mild ones included my right arm going numb and not be able to make since when I tried to talk. I finally had enough seizure taht my neuroligist had have seizure monitoring to determine the type of seizure I had. I was in the hospital for 3 & 1/2 days. Wouldn't you know it nothing happened to monitor. I was realesed from the hospital. I did not tak e medicine for a week. the next Monday night I had a bad occurance. I hyperventilated , blood pressure was up and I could not speak at all. My right are was numb. I went to the emergecny room . They conrolled the seizure activity and sent me home. My neurolgist schuled a nother seizure monitoring session a week later. Finnlay I had 2 seizures to monitor. They were identiacl. I was diagnosed with Temporal lobe Epileptic Seizures.
I feel better now that I know what I have. Upon release I had and MRI, and Pet scan and psychological testing. I will go tomorrow to see severalk dr.s to discuss whether I am a candidate for brain surgery.
It sacres me a lot to thing of my head being cut into, but I am leaning toward surgery.
I hope this help.
Good luck to all.
I am Lisa.
I have been feeling strange sensations for several years. I was origiannly told that I had migraines. The 1stmedicaine I took was Topamax. It is to control migraines and seizures. It controlled the symptoms for a while. It has a hal-life so if I missed 1 does I had a seizure. After 1 or so I aksed to chnage meds beacuse I did not liek the side effects. I did not feel like me. I forget things, I felt out of sorts and was slower to undersrand things. I statred Lamictal It controled the symptoms ome, but when under stress the seizures returned. I began having panic attacks. Some episodes were minor. At the time I did not know what o call them. I felt like I was going to vomit and could not communicae well. Mild ones included my right arm going numb and not be able to make since when I tried to talk. I finally had enough seizure taht my neuroligist had have seizure monitoring to determine the type of seizure I had. I was in the hospital for 3 & 1/2 days. Wouldn't you know it nothing happened to monitor. I was realesed from the hospital. I did not tak e medicine for a week. the next Monday night I had a bad occurance. I hyperventilated , blood pressure was up and I could not speak at all. My right are was numb. I went to the emergecny room . They conrolled the seizure activity and sent me home. My neurolgist schuled a nother seizure monitoring session a week later. Finnlay I had 2 seizures to monitor. They were identiacl. I was diagnosed with Temporal lobe Epileptic Seizures.
I feel better now that I know what I have. Upon release I had and MRI, and Pet scan and psychological testing. I will go tomorrow to see severalk dr.s to discuss whether I am a candidate for brain surgery.
It sacres me a lot to thing of my head being cut into, but I am leaning toward surgery.
I hope this help.
Good luck to all.