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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 destroyedbyadmin on Sun, 2010-03-07 - 10:19
I am currently being tested for epilepsy (or rather awaiting tests) but am already on Lamictal/Lamotrigine because I am bipolar and it also works as a mood stabiliser.
I'm a bit confused about what kind of epilepsy they were looking for though and my best guess is Temporal Lobe. I start not being able to concentrate on what's going on around me and I find it difficult to speak. Sometimes it's that I find it hard to physically form words and other times it's that I can't remember what the words I want are or how I put them in the right order to make a sentence.
It interested me that the person here said about the feeling of their stomach choking them. I get that. Though this could be a symptom of acid reflux? (Even if you don't feel like you have heartburn)
I also have "myclonic jerks" or what seem like myoclonic jerks that are out of my control. I have a series of them at once but they effect my whole body. My whole body jumps violently. I've fallen a couple of times too but it's just like all of a sudden my batteries run out and I'm too weak to hold myself up. I don't fall unconscious though. I have seemed unconscious a couple of times because I can't move or speak for a little while after.
Was wondering, does odd sensations on one side of your face, memory-loss (not of specific events, of general information - like I know my Mam studies maths and has done for ages, but the other day she told me something that had happened at maths class and I said "I didn't know you studied maths". For hours it was like completely new information and then I remembered that I had known about it for a long time). Also, blurriness in one eye, clumsiness or difficulty co-ordinating on one side of the body. Confusion, difficulty concentrating, feeling out of it...
Are these all things to do with this kind of epilepsy? I'm getting quite worried about it. I have an appointment with a neurologist in April but I've been waiting since August!
I am currently being tested for epilepsy (or rather awaiting tests) but am already on Lamictal/Lamotrigine because I am bipolar and it also works as a mood stabiliser.
I'm a bit confused about what kind of epilepsy they were looking for though and my best guess is Temporal Lobe. I start not being able to concentrate on what's going on around me and I find it difficult to speak. Sometimes it's that I find it hard to physically form words and other times it's that I can't remember what the words I want are or how I put them in the right order to make a sentence.
It interested me that the person here said about the feeling of their stomach choking them. I get that. Though this could be a symptom of acid reflux? (Even if you don't feel like you have heartburn)
I also have "myclonic jerks" or what seem like myoclonic jerks that are out of my control. I have a series of them at once but they effect my whole body. My whole body jumps violently. I've fallen a couple of times too but it's just like all of a sudden my batteries run out and I'm too weak to hold myself up. I don't fall unconscious though. I have seemed unconscious a couple of times because I can't move or speak for a little while after.
Was wondering, does odd sensations on one side of your face, memory-loss (not of specific events, of general information - like I know my Mam studies maths and has done for ages, but the other day she told me something that had happened at maths class and I said "I didn't know you studied maths". For hours it was like completely new information and then I remembered that I had known about it for a long time). Also, blurriness in one eye, clumsiness or difficulty co-ordinating on one side of the body. Confusion, difficulty concentrating, feeling out of it...
Are these all things to do with this kind of epilepsy? I'm getting quite worried about it. I have an appointment with a neurologist in April but I've been waiting since August!
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by capecodmom on Sun, 2010-03-07 - 11:42
Hi, I'm Jenn, I have very similiar symptoms and I have been diagnosed with Temporal Lobe Epilepsy but also with Hyperekplexia, which apparently is also causing similiar symptoms. It has made it a bit frustrating because it has been virtually impossible to tell which symptoms are from which disorder. Apparently the hyperekplexia is fairly rare since I don't find a real lot written about it.
I'm almost sorry to say this next part but it's kind of refreshing hearing from other people that have bizarre symptoms that sound so much like mine. After having doctors and others look at me like I was crazy or something when I described symptoms to them. Thank goodness that I finally got an excellent epileptologist that promised to not give up on me until we found the proper diagnosis and treatment. I am on Lamictal and Klonopin, the klonopin is the only drug used to treat Hyperekplexia so there were no choices there. Well, since I have been on the klonopin, the myoclonic jerks (full body) have subsided, hardly any episodes where my vision is affected and my speech (I've lost my speech as well, word recall as well). Have you tried one of the benzo's? It sounds like we share a lot of the same symptoms and it's the only thing that has helped me.
Hang in there and good luck! Oh also, I went in-patient for video/eeg monitoring for six days, it helps if they can actually "catch" one of your full blown episodes/seizures while there are doctors around. It was a little bit frustrating laying there waiting for something to happen and of course, it didn't, but once they let me up and walk around a bit I finally had one so that was good.
Keep posting, it helps to know we are not alone.
Hi, I'm Jenn, I have very similiar symptoms and I have been diagnosed with Temporal Lobe Epilepsy but also with Hyperekplexia, which apparently is also causing similiar symptoms. It has made it a bit frustrating because it has been virtually impossible to tell which symptoms are from which disorder. Apparently the hyperekplexia is fairly rare since I don't find a real lot written about it.
I'm almost sorry to say this next part but it's kind of refreshing hearing from other people that have bizarre symptoms that sound so much like mine. After having doctors and others look at me like I was crazy or something when I described symptoms to them. Thank goodness that I finally got an excellent epileptologist that promised to not give up on me until we found the proper diagnosis and treatment. I am on Lamictal and Klonopin, the klonopin is the only drug used to treat Hyperekplexia so there were no choices there. Well, since I have been on the klonopin, the myoclonic jerks (full body) have subsided, hardly any episodes where my vision is affected and my speech (I've lost my speech as well, word recall as well). Have you tried one of the benzo's? It sounds like we share a lot of the same symptoms and it's the only thing that has helped me.
Hang in there and good luck! Oh also, I went in-patient for video/eeg monitoring for six days, it helps if they can actually "catch" one of your full blown episodes/seizures while there are doctors around. It was a little bit frustrating laying there waiting for something to happen and of course, it didn't, but once they let me up and walk around a bit I finally had one so that was good.
Keep posting, it helps to know we are not alone.
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by Tgarr on Thu, 2010-09-09 - 11:25
Loud sounds effect me as well. Deja vu and Jamis vu scare the living heck out of me. The feeling of dread and doom are no picnic either. Oh, it's a blast to be around me......
I had one abnormal EEG, several clear MRI's and FINALLY a positive PET which showed focus on both sides (mainly on the right TL).
It literally took a few years to nail it down. I went to a teching hospital and with the help of a really compasionate Nuerologist he got my insurance to do a PET which is very expensive. He told me he was leaning toward reporting me to DMV so I stopped going to him for financial reasons (I'm the bread winner).
I just followed my heart and head and did not give up until the State looked like it was getting involved in my life. It's a shame that things are this way and I'm sure, like me, many people are reluctant to pursue things to resolve these issues for the same fear I have.
Loud sounds effect me as well. Deja vu and Jamis vu scare the living heck out of me. The feeling of dread and doom are no picnic either. Oh, it's a blast to be around me......
I had one abnormal EEG, several clear MRI's and FINALLY a positive PET which showed focus on both sides (mainly on the right TL).
It literally took a few years to nail it down. I went to a teching hospital and with the help of a really compasionate Nuerologist he got my insurance to do a PET which is very expensive. He told me he was leaning toward reporting me to DMV so I stopped going to him for financial reasons (I'm the bread winner).
I just followed my heart and head and did not give up until the State looked like it was getting involved in my life. It's a shame that things are this way and I'm sure, like me, many people are reluctant to pursue things to resolve these issues for the same fear I have.