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temporal lobe seizures

I have temporal lobe seizures. I have never had a seizure caught on an EEG though. I started having the episodes about 5 years before I could get anyone to take me serioulsy. I was pregnant and had started having them very frequently. I had about 10 in 2-3 days and during that time I did alot of studying on the internet about my symptoms. THe description of temporal lobe seizures had always closely matched what I was having. When I read the word de ja vu in one sites description of possible symptoms, I knew that was what I was having. I called my PMD and his nurse set me up an EEG without even talking to the doctor. I am a registered nurse and so she took me serioulsy. In the past other doctors had no answers nor did any tests. When I have a seizure, It hits me like a ton of bricks. I'll be doing something and it's like my mind falls off of a cliff. My mind races through what seems like a dream being replayed. I can continue doing what I'm doing and I can talk, but it's hard to. I know I must get a worried look on my face and become quiet but I've never had anyone notice a change or say anything about it. The dream that I'm remembering seems so familiar, like it's something I've done or had a dream about. I can't describe what it I think about very easily, whatever I'm doing in the dream is repetitive. I get tingly all over and feel very weak. I feel a certain amusement and am very interested in what I'm thinking about. You could say I have an overwhelming feeling of feer and a small sense of pleasure at the same time. I feel fullness in my epigastric area with a buzzing. Like I have hundreds of bees in my stomach. This feeling rises up my neck and into my mouth. My mouth feels hot and I get an extremely strong peanut butter/tar taste in my mouth. I then get nauseated, diaphoretic and very tired. I guess it all lasts about 1 and 1/2 munutes or so, I'm not sure. For the rest of the day and even the next day I feel tightness in my head and I feel like someone feels like when they have a cold and are on alot of decongestants. I feel a little slow too. I have mini episodes where I'll just have a faint dream/de ja vu feeling every now and then. It's kind of like when you feel like you have to sneeze or yawn and you can't. It just quits. I see a neurologist and am taking carbatrol 200mg BID. I'm supposed to have a video EEG in Birmingham, Al. But, I have a small child and can't leave him for what could possibly be a week of hospital admission, where they wont allow children at all. I still have other doctors who ask, when I tell them what my seizures are like, if I have ever been worked up for panic attacks. This really pisses me off. I want to get one of them on EEG so I can say for sure that they are seizures and be able to say exactly where they are coming from. The carbatrol controls them. I only have them very infrequently and when I miss 2 or more doses of my medicine, I am much more likely to have one. I have never met anyone else who has TLE. I still feel like, because one hasn't been caught on EEG, that my neurologist is a little questionable with me. My 1hr and 24hr EEG's were abnormal. They had what he described as epileptogenic tendencies or something like that. And I had some Theta waves. I think that's what they are called. I was told they were something you only had when you were an adolescent or child. I would appreciate some insight, some advise, some reassurement and/or some of your knowledge. Do this sound like typical TLE. What can I expect in the future? Another thing, alot of my seizures happen in the shower. When I have one in my sleep, it will wake me up right when it happens. I've had up to about 3-4 in one night while sleeping, needless to say, I have alot of trouble getting up the next day and feel like total ****. Thank you so much for your time.
5 Responses
307031 tn?1206410293
Hi there!  I too, have the same type of seizures.  They're known as Deja-Vu seizures.

When I get a seizure, I really don't lose control, or anything like that.  It's as if you were watching an old TV, and the sound from another channel bleeds into the one you're watching.  It's hard to explain.  I also kind of space out.  I can hear the person talking to me, but my mind locks in somewhere else - a past feeling, or something like that.  Also, I get the 'de-ja-vu' feeling.  People who don't have seizures get de-ja-vu every now and then, but this is different.  However, after that, I lose my ability to spell, write etc., for a couple weeks - well, not entirely, but they are very sloppy!

I take Lamictal - 200mg 3x a day.  It works great, but I do get the deja-vu feeing every once in a while, but not as intense.  Stress seems to bring it on - not always.

I posted something indirectly related back in October, called "I hate the Sun!', back in October 20.  Somebody posted a response.  I also  have an intolerance to the sun, and asked if that was related.

I hope this helps!

Avatar universal
I have been experiencing Deja-Vu for a while but never associated them with a possible seizure. I had been having them quite frequently. Recently I was diagnoised ( well i say recently seems like forever now) with a right temporal lobe tumor.
They tell me that they are not sure if i am having seizures or not. I have been on keppra which didn't seem to help me. They put me on Depakote which did help but blew me up like a balloon. So they put me on Topamax to regulate my head pain /headaches and possible seizures.
There are times I have had an overwhelming sense of fear/ anger/ deja vu and then I am completely worn out the next day or that night and the next day.
They did an EEG on me but Duh they did it while i was medicated. Now I am scheduled for a 3 day EMU. Hopefully this will tell them if I am having seizures or not.
I have never mentioned the Deja vu to my neuro...should I.
307031 tn?1206410293
Most neurologists don't refer Temporal Lobe/Partial Complex Seizures as Deja Vu seizures.  Probably because their patients never thought to research it on the internet, like I did. :P  So your neurologist might look at you strange if you mention it.  But for me, it fits the description of my seizures better than the 'classic' Temp Lob/Part. Complex description does.

Anyways, I tried Depakote, but had to stop when I developed 'irrational behavior' issues (at work, nonetheless).  I first was on Dilantin - made me feel like a zombie.  Next, I took Tegretol - made me too sleepy.  Then the Depakote.  Now, I've been on Lamictal for 5 years and love it.  I have no side effects at all.  You might want to mention Lamictal to your neurologist - it's specifically for temp lobe seizures.

Sorry about your recent diagnosis.  I hope all goes well.  My left temporal and parietal lobe is where my damage is, which is what causes my seizures.

Hope this helps.  
Avatar universal
I had a large seizure a few months ago, and every since I have experience what some people call deja vue seizures.
They last only about a minute, panic feeling, cloudy thoughts and deja vue with a familiar smell. I have had an MRI, CAT scan and two EEG's, all coming up with no issues? After some of these seizures? I cannot remember my own name for a minute and after ten minutes my memory starts to come back.
Avatar universal
Hi, I had the same problem, then after 3 yrs, I finally found out that I am having frontal lobe seizures, and they was able to see one on the eeg that they let me wear home. I was very angry because they kept telling me its panic attacks, well you dont have them in your sleep, so I knew that wasnt it. I am now on Keppra 500 mg twice a day and they are controlling the seizures very well. Alot of people say that keppra isnt a good pill but I feel alot better that what I did. Hope this helps. Good Luck!
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