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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 capecodmom on Sun, 2010-03-07 - 21:48
Hi, Jenn here again. The only symptom that I'm baffled by is the stomache rising up into the throat. I think that the video/eeg monitoring will be great for t his so that they can get a clear picture as to exactly what is going on when you have that symptom.
I was admitted for a six day that turned into eight day stay for this. As soon as I got there I got wired with the eeg. You are confined to bed because you are hooked up to the eet monitor on one side, heart monitor on the other. I put the finger oxygen/pulse monitor on my toe so that I could crochet! What a sight! LOL You can get up from bed by brieflyunhooking from the monitors to use the bathroom but have the nurse shut the beeping off, it will drive you crazy. Sponge baths all week, of course. Bring lounging clothes that button up, I used over sized men's shirts and sweatpants. It's very constricting but it's worth it if you can get the answers that you want and they usually only do this at the best top notch hospitals so you are in good hands. I was at Brighan and Women's in Boston, one of the best in the country and got excellent care. After the week was up, I showered before I left the hospital and I'd like to say I came out with new diagnosis but my body didn't have as many problems in there (of course) but they did get to see a lot of seizure activity even between episodes and one big one when they let me go out walking the halls, I kept telling them that activity triggered my attacks and they finally complied. I hope this helped.
hang in there, I would go for it, what do you have to lose, right? Oh, yeah, they did tons of psyche testing, like hours and hours, I guess they want to rule out psuedo siezures and the mind/body connection is huge so I guess that's the reason for all of that. I got plenty of attention in there. Twenty four hour catering with decent food, being waited on, it did get old after a few days though! LOL
Hi, Jenn here again. The only symptom that I'm baffled by is the stomache rising up into the throat. I think that the video/eeg monitoring will be great for t his so that they can get a clear picture as to exactly what is going on when you have that symptom.
I was admitted for a six day that turned into eight day stay for this. As soon as I got there I got wired with the eeg. You are confined to bed because you are hooked up to the eet monitor on one side, heart monitor on the other. I put the finger oxygen/pulse monitor on my toe so that I could crochet! What a sight! LOL You can get up from bed by brieflyunhooking from the monitors to use the bathroom but have the nurse shut the beeping off, it will drive you crazy. Sponge baths all week, of course. Bring lounging clothes that button up, I used over sized men's shirts and sweatpants. It's very constricting but it's worth it if you can get the answers that you want and they usually only do this at the best top notch hospitals so you are in good hands. I was at Brighan and Women's in Boston, one of the best in the country and got excellent care. After the week was up, I showered before I left the hospital and I'd like to say I came out with new diagnosis but my body didn't have as many problems in there (of course) but they did get to see a lot of seizure activity even between episodes and one big one when they let me go out walking the halls, I kept telling them that activity triggered my attacks and they finally complied. I hope this helped.
hang in there, I would go for it, what do you have to lose, right? Oh, yeah, they did tons of psyche testing, like hours and hours, I guess they want to rule out psuedo siezures and the mind/body connection is huge so I guess that's the reason for all of that. I got plenty of attention in there. Twenty four hour catering with decent food, being waited on, it did get old after a few days though! LOL
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by wilcol09 on Mon, 2010-03-08 - 02:53
Hi,
I am 48 years old and was diagnosed with temporal lobe epilepsy only in 1997 after I experienced grand mal seizures. I was given Dilantin at first but it didn't work and I tried other drugs like Rivotril, which likewise didn't work well. Now I am on Keppra and carbamazepine and I experience complex partial seizures without the convulsions. I have blank stares for a few seconds to about 2 minutes, and can't recognize the person talking to me. these last for just a short while and then I regain my consciousness.
I still have my seizures every 2 weeks and these are triggered by lack of sleep or when I miss my medicines. I can't afford brain surgery so I guess I am stuck with my medications for life. I hope they come up with a complete cure for my seizures so I can resume driving.
Epilepsy is a big discomfort and expense but you can manage to live normally except for the seizures. I now have 2 boys aged 7 and 4. I met my wife when I already had my seizures and it worries her at times. The biggest discomfort is not knowing when you will have your seizures. It will be dangerous if you are on the street about to cross or in a high place without any companions.
Hi,
I am 48 years old and was diagnosed with temporal lobe epilepsy only in 1997 after I experienced grand mal seizures. I was given Dilantin at first but it didn't work and I tried other drugs like Rivotril, which likewise didn't work well. Now I am on Keppra and carbamazepine and I experience complex partial seizures without the convulsions. I have blank stares for a few seconds to about 2 minutes, and can't recognize the person talking to me. these last for just a short while and then I regain my consciousness.
I still have my seizures every 2 weeks and these are triggered by lack of sleep or when I miss my medicines. I can't afford brain surgery so I guess I am stuck with my medications for life. I hope they come up with a complete cure for my seizures so I can resume driving.
Epilepsy is a big discomfort and expense but you can manage to live normally except for the seizures. I now have 2 boys aged 7 and 4. I met my wife when I already had my seizures and it worries her at times. The biggest discomfort is not knowing when you will have your seizures. It will be dangerous if you are on the street about to cross or in a high place without any companions.
Re: Temporal Lobe Epilepsy: what does it feel like?
Submitted by apo8863 on Sun, 2010-03-07 - 20:09
I was diagnosed with temporal lobe epilepsy about three years ago, but we think I had actually developed it several years earlier. Before it began to get worse my sympotms were attributed to migraine auras and side effects. We finally got it right when we found a brain tumor in my right temporal lobe. I immediately had brain surgery to remove the tumor, and my migraines, and to some extent my seizures, improved. But that is aside from the point. TLE manifests itself in innumerable ways, but I'll try to shed some light through my own experiences.
I get partial complex seizures in the form of absence seizures. I "blank out" for a few seconds to a few minutes at a time. It isn't losing consciousness so much as an altered state of consciousness. I don't realize that I've had one until I come back to and realize that a conversation or lecture or whatever has skipped ahead, proving that I lost a small chunk of time. People around me say that if you look into my eyes while I'm having one, I don't look like I'm day dreaming but rather that I simply am not there. I also sometimes experience the inability to speak but will be able to write or at other times the inability to understand spoken language but will be able to understand what I read.
I also get simple partial seizures which can stand alone or be an aura for a complex partial one. During these I will smell things that aren't there, usually something burning or a strong burst of lemons. I also experience weird tastes, usually metallic or like soap. The smells don't usually last long, but the tastes can last the better part of the day. Less frequently my right arm and the right side of my neck will go weak. I do not experience the feelings of fear or anxiety that many people seem to talk about but rather periods where everything strikes me as hilarious. While certainly preferrable to fear, stiffling inappropriate laughter during class can be problematic.
It's interesting that you bring up the rising stomach thing. Again, for years I thought that it was a part of a migraines, but since we have discovered it to be a seizure. It feels like my stomach is turning inside out and trying to slither out of my throat. It can cause me to gag. My doctor prescribed Lorazepam as something to take when it happens, and within about 5 minutes or less the feeling goes away when I take it. It is similar to ativan, which is also used at the onset of seizures.
Finally, a few words regarding Lamictal. I am always wary of trying new medications because I too have a lot of difficultly with side effects. I went through bunches of anti-seizuremeds to try to control migraines for years and then more to try to control seizures without much success in control and intolerable side effects. On Lamictal, however, my seizures are usually fairly well controlled, and I experience no adverse side effects as long as I take it with a full meal. As much as I hate to try meds, the novelty of having my seizures not impact my life to the extent that they once did makes me open to giving them a chance.
I was diagnosed with temporal lobe epilepsy about three years ago, but we think I had actually developed it several years earlier. Before it began to get worse my sympotms were attributed to migraine auras and side effects. We finally got it right when we found a brain tumor in my right temporal lobe. I immediately had brain surgery to remove the tumor, and my migraines, and to some extent my seizures, improved. But that is aside from the point. TLE manifests itself in innumerable ways, but I'll try to shed some light through my own experiences.
I get partial complex seizures in the form of absence seizures. I "blank out" for a few seconds to a few minutes at a time. It isn't losing consciousness so much as an altered state of consciousness. I don't realize that I've had one until I come back to and realize that a conversation or lecture or whatever has skipped ahead, proving that I lost a small chunk of time. People around me say that if you look into my eyes while I'm having one, I don't look like I'm day dreaming but rather that I simply am not there. I also sometimes experience the inability to speak but will be able to write or at other times the inability to understand spoken language but will be able to understand what I read.
I also get simple partial seizures which can stand alone or be an aura for a complex partial one. During these I will smell things that aren't there, usually something burning or a strong burst of lemons. I also experience weird tastes, usually metallic or like soap. The smells don't usually last long, but the tastes can last the better part of the day. Less frequently my right arm and the right side of my neck will go weak. I do not experience the feelings of fear or anxiety that many people seem to talk about but rather periods where everything strikes me as hilarious. While certainly preferrable to fear, stiffling inappropriate laughter during class can be problematic.
It's interesting that you bring up the rising stomach thing. Again, for years I thought that it was a part of a migraines, but since we have discovered it to be a seizure. It feels like my stomach is turning inside out and trying to slither out of my throat. It can cause me to gag. My doctor prescribed Lorazepam as something to take when it happens, and within about 5 minutes or less the feeling goes away when I take it. It is similar to ativan, which is also used at the onset of seizures.
Finally, a few words regarding Lamictal. I am always wary of trying new medications because I too have a lot of difficultly with side effects. I went through bunches of anti-seizuremeds to try to control migraines for years and then more to try to control seizures without much success in control and intolerable side effects. On Lamictal, however, my seizures are usually fairly well controlled, and I experience no adverse side effects as long as I take it with a full meal. As much as I hate to try meds, the novelty of having my seizures not impact my life to the extent that they once did makes me open to giving them a chance.