Deja vu and Epilepsy

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Ok I'm going to give a short version and a long version, as the long one might be too long for many...

SHORT:

-I'm 23, have had 5-6 deja vu episodes in 3-4 weeks. Daydream alot and have fleeting thoughts of normal things seeming weird or funny (but not necessarily unfamiliar). No family history, no grand mal, no head trauma. What's the likelihood of TLE? What else might it be?

LONG:

I'm 23 and have experienced five or six very strong feelings of deja vu in the last 3-4 weeks or so, which was enough to tip me off to possible temporal lobe epilepsy after searching around a bit. They generally last about 10-20 seconds and are not accompanied by the same dread, or stomach discomfort, or fear, or happiness that seems to be common with many TLE patients, but they're also momentarily quite strong (and frustrating!) for me.

I also have been having these thoughts every once in a while that ordinary things, objects, words, concepts, etc. (could be anything depending on the concept) seem somewhat silly or different than they normally would feel. In a way, I feel like I'm processing the world differently, almost a bit, yet not entirely, detached from it for just a few seconds or so. I'm not quite sure it's jamais vu since it's never had any sort of emotion or gut-type "feeling" that deja vu has, and I know what I'm looking at/touching/hearing/etc fine and not actually forgetting anything about it. As an example, it could be as trivial as say looking at a phone or hearing the word phone (or whatever else) and thinking "hm, what a funny thing with a funny name. never thought of a phone that way, i know it's a phone, but it seems kinda silly. kind of weird we use them" and then snap back into it and realize a phone is a phone and i've been using it and familiar with it my whole life. It feels like I'm a permanent stoner or something. Sorry if that sounds a bit nuts, just a quirky thing that I'm wondering if it's related to possible TLE or something else.

I also tend to have some issues fairly regularly with daydreaming or forgetting for a second what it was I was doing or wanted to do (momentary memory, basically), but I've always attributed that to lack of sleep, being a space cadet, or whatever else might cause it, and I'm not too sure if it's symptomatic of TLE.

In any case, I have never had head trauma, have no family history of epilepsy, and obviously never had a grand mal or anything like it. I saw a neuro who took history and notes before referring me to a specialist who's going to take a month to schedule an appointment and for an MRI in the meantime. He mentioned that there are psychological theories but no other neurological explanations aside from TLE to explain having 6 deja vus along with the other quirkiness. Obviously then, it would be frustrating if the MRIs and EEGs, etc all come back fine with no diagnosis made as I could be stuck with these spells (which are affecting my work right now).

That said, I'm wondering a few things:

1) What is the likelihood of TLE (given age, no family history or trauma, symptoms)? Also, what is the likelihood that someone non-TLE has 6 dejavu episodes in a 3-4 weeks timeframe?

2) What are potential alternative explanations if not TLE?

3) What can/will be done if everything comes back okay but I'm still having symptoms?

4) Would stress/lack of sleep cause the symptoms, or do they actually trigger the epilepsy which in turn triggers the symptoms?

Obviously any answers to any of the questions are much appreicated. Thanks and look forward to the discussion!

-Mikey

Comments

Re: Deja vu and Epilepsy

Submitted by juperee on Sat, 2008-10-11 - 12:14

Mikey,

I have left TLE and mine started out as deja vu too, although I had deja vu so regularly (at least once a week, sometimes several times/day) I just figured that's how everybody was so I didn't even know how there was anything "up". That is until I had a generalized tonic-clonic (aka Grand mal) seizure at the age of 31 and ended up in the hospital.

All that said, I'd like to offer my take on your questions one at a time:

Q/A 1) Age doesn't matter. Adult onset of TLE is not rare. Family history doesn't matter either; there are very few types of epilepsy that are genetic.

As for the frequency of deja vu in non-epileptic patients, it's surprisingly tough to find info on, but when I researched it, I read that 70% of people report having deja vu at least once in their lives. It tends to start in the teenage years, peak in the 20s, and decline from there. Having deja vu 6-12 times per year in the 20s is normal, then more like 3-6 times/yr in the 30s, 1-3 in the 40s, and rarer from there. It's a little more common in women than in men.

Without telling them why, I separately quizzed my sister and brother about their deja vu occurences and found that my brother (44yrs) thinks he's had 6 episodes total in his life, and my sister (36yrs) reports about 3 times a year. Neither has ever had seizures.

So, yeah, your 6 times in 3-4 weeks is highly unusual.

Q/A 2) I dunno.

Q/A 3) My guess, if you talk to a good neurodoc or preferably an epileptologist, is that they might put you on a ridiculously low dose of Keppra (250mg 2xday) to start with, just to prevent a more serious seizure and see if the deja vus go away.

BTW, interesting fact about TLE in particular: 90% of people who have epileptiform spikes on their EEGs also show clinical signs of TLE (like your deja vus and swallowing, etc). However, the reverse isn't true; some folks with clinical TLE symptoms show no spikes on the EEG. And lots and lots of TLE patients have clear MRIs.

Q/A 4) Abso-freakin-lutely! Sleep deprivation is a huge trigger for seizure activity, whether it's simple partials like deja vu, or full blown loss-of-consciousness events.

On a personal note, as you mentioned that right now your work is being affected, I can share with you that when I started Keppra (after my Grand Mal Wake-up Call & diagnosis), I felt like my "old" brain was back, and I had missed it! I could think clearly again! I didn't find myself wondering what I was doing or why I was waiting for the stop sign (yes, sign) to turn green. My work was great, and my initial fears dissolved. I am 34 yrs old and an electrical engineer with a secure job.

So fret not, and continue educating yourself. If you do get on Keppra or any other AED, realize that you should be patient; it's gonna take 6 weeks or so before your brain is used to it. Lots of side effects will go away, and my neurologist says most people who get bad effects with Keppra just take it too fast. He started me on 250mg, then 500mg, then 750, and now I take 1g 2xday. That was over the course of 2 years--nice and slow. I now have deja vu episodes only about 2 x year, ringing in my ear about 6 x, and i have never had another grand mal.

Good luck!!

PS: I have an abnormal Left TL EEG, and a normal MRI, no history of trauma, no family history of epilepsy. My only increased risk factor was that I did have a couple of fever convulsions when I was less than 2 yrs old, but that's only a tiny risk increase. Go figure. 50% of TLE cases are "cryptogenic".

Mikey, I have left TLE and mine started out as deja vu too, although I had deja vu so regularly (at least once a week, sometimes several times/day) I just figured that's how everybody was so I didn't even know how there was anything "up". That is until I had a generalized tonic-clonic (aka Grand mal) seizure at the age of 31 and ended up in the hospital. All that said, I'd like to offer my take on your questions one at a time: Q/A 1) Age doesn't matter. Adult onset of TLE is not rare. Family history doesn't matter either; there are very few types of epilepsy that are genetic. As for the frequency of deja vu in non-epileptic patients, it's surprisingly tough to find info on, but when I researched it, I read that 70% of people report having deja vu at least once in their lives. It tends to start in the teenage years, peak in the 20s, and decline from there. Having deja vu 6-12 times per year in the 20s is normal, then more like 3-6 times/yr in the 30s, 1-3 in the 40s, and rarer from there. It's a little more common in women than in men. Without telling them why, I separately quizzed my sister and brother about their deja vu occurences and found that my brother (44yrs)  thinks he's had 6 episodes total in his life, and my sister (36yrs) reports about 3 times a year. Neither has ever had seizures. So, yeah, your 6 times in 3-4 weeks is highly unusual. Q/A 2)  I dunno.  Q/A 3)  My guess, if you talk to a good neurodoc or preferably an epileptologist, is that they might put you on a ridiculously low dose of Keppra (250mg 2xday) to start with, just to prevent a more serious seizure and see if the deja vus go away. BTW, interesting fact about TLE in particular: 90% of people who have epileptiform spikes on their EEGs also show clinical signs of TLE (like your deja vus and swallowing, etc). However, the reverse isn't true; some folks with clinical TLE symptoms show no spikes on the EEG. And lots and lots of TLE patients have clear MRIs. Q/A 4) Abso-freakin-lutely! Sleep deprivation is a huge trigger for seizure activity, whether it's simple partials like deja vu, or full blown loss-of-consciousness events. On a personal note, as you mentioned that right now your work is being affected, I can share with you that when I started Keppra (after my Grand Mal Wake-up Call & diagnosis), I felt like my "old" brain was back, and I had missed it! I could think clearly again! I didn't find myself wondering what I was doing or why I was waiting for the stop sign (yes, sign) to turn green. My work was great, and my initial fears dissolved. I am 34 yrs old and an electrical engineer with a secure job.  So fret not, and continue educating yourself. If you do get on Keppra or any other AED, realize that you should be patient; it's gonna take 6 weeks or so before your brain is used to it. Lots of side effects will go away, and my neurologist says most people who get bad effects with Keppra just take it too fast. He started me on 250mg, then 500mg, then 750, and now I take 1g 2xday. That was over the course of 2 years--nice and slow. I now have deja vu episodes only about 2 x year,  ringing in my ear about 6 x, and i have never had another grand mal. Good luck!! PS: I have an abnormal Left TL EEG, and a normal MRI, no history of trauma, no family history of epilepsy. My only increased risk factor was that I did have a couple of fever convulsions when I was less than 2 yrs old, but that's only a tiny risk increase. Go figure. 50% of TLE cases are "cryptogenic".

Mikey,

I have left TLE and mine started out as deja vu too, although I had deja vu so regularly (at least once a week, sometimes several times/day) I just figured that's how everybody was so I didn't even know how there was anything "up". That is until I had a generalized tonic-clonic (aka Grand mal) seizure at the age of 31 and ended up in the hospital.

All that said, I'd like to offer my take on your questions one at a time:

Q/A 1) Age doesn't matter. Adult onset of TLE is not rare. Family history doesn't matter either; there are very few types of epilepsy that are genetic.

As for the frequency of deja vu in non-epileptic patients, it's surprisingly tough to find info on, but when I researched it, I read that 70% of people report having deja vu at least once in their lives. It tends to start in the teenage years, peak in the 20s, and decline from there. Having deja vu 6-12 times per year in the 20s is normal, then more like 3-6 times/yr in the 30s, 1-3 in the 40s, and rarer from there. It's a little more common in women than in men.

Without telling them why, I separately quizzed my sister and brother about their deja vu occurences and found that my brother (44yrs) thinks he's had 6 episodes total in his life, and my sister (36yrs) reports about 3 times a year. Neither has ever had seizures.

So, yeah, your 6 times in 3-4 weeks is highly unusual.

Q/A 2) I dunno.

Q/A 3) My guess, if you talk to a good neurodoc or preferably an epileptologist, is that they might put you on a ridiculously low dose of Keppra (250mg 2xday) to start with, just to prevent a more serious seizure and see if the deja vus go away.

BTW, interesting fact about TLE in particular: 90% of people who have epileptiform spikes on their EEGs also show clinical signs of TLE (like your deja vus and swallowing, etc). However, the reverse isn't true; some folks with clinical TLE symptoms show no spikes on the EEG. And lots and lots of TLE patients have clear MRIs.

Q/A 4) Abso-freakin-lutely! Sleep deprivation is a huge trigger for seizure activity, whether it's simple partials like deja vu, or full blown loss-of-consciousness events.

On a personal note, as you mentioned that right now your work is being affected, I can share with you that when I started Keppra (after my Grand Mal Wake-up Call & diagnosis), I felt like my "old" brain was back, and I had missed it! I could think clearly again! I didn't find myself wondering what I was doing or why I was waiting for the stop sign (yes, sign) to turn green. My work was great, and my initial fears dissolved. I am 34 yrs old and an electrical engineer with a secure job.

So fret not, and continue educating yourself. If you do get on Keppra or any other AED, realize that you should be patient; it's gonna take 6 weeks or so before your brain is used to it. Lots of side effects will go away, and my neurologist says most people who get bad effects with Keppra just take it too fast. He started me on 250mg, then 500mg, then 750, and now I take 1g 2xday. That was over the course of 2 years--nice and slow. I now have deja vu episodes only about 2 x year, ringing in my ear about 6 x, and i have never had another grand mal.

Good luck!!

PS: I have an abnormal Left TL EEG, and a normal MRI, no history of trauma, no family history of epilepsy. My only increased risk factor was that I did have a couple of fever convulsions when I was less than 2 yrs old, but that's only a tiny risk increase. Go figure. 50% of TLE cases are "cryptogenic".

Re: Deja vu and Epilepsy

Submitted by Calypso23 on Thu, 2010-10-14 - 10:46

Greetings Juperee (and everyone!)

Wow! I have been on this site for about fifteen minutes, and I am already a bit obsessed because this is the first time I have ever found people who have the exact symptoms as I do. Fabulous!

Two days ago, I joined "patientslikeme", visited message boards, and tried to find other TLE people "like me", but to no avail. The vast majority of those I encountered had severe epilepsy and were lucky to have ONE DAY without seizures. I feel for them.

I have had mostly ecstatic "deja vu" auras without a loss of consciousness since childhood that tend to last only a few seconds each time. When I was quite young, I experienced the doom and gloom filled "jamais vu" auras for a few seconds as well. I remember that I tried to tell my parents what was happening, but they assumed I was just being a weird kid or was just letting my imagination take over. It never seemed to affect me, and they only lasted a few seconds ,so no-one cared.

During high school, college, and beyond, I would often have my auras upon waking and entering the shower. They would come on like a wave, intense deja vu, then suddenly everything in the world/universe comes together and simply, somehow, "makes sense". If I would look at the shampoo bottle it would just "make sense" and fit into the grand scheme of the universe as well. Somehow, certain childhood memories would melt into the mix of feeling and emotion, and sometimes the "jamais vu" would kick in and would make me think of an ex, or an old friend, or even an old childhood experience.

I know I have had many night-time auras or even larger seizures as I have woken up paralyzed, or drained of happiness. I have no idea how many times this has happened but I always quickly rebound.

These disturbances in the force would always manifest after extreme sleep deprivation, often after drinking, and perhaps sometimes during my womanly time of the month. (Most of you seem to be men, so sorry for the TMI, but what are you going to do?)

I was never seen by an MD for these issues UNTIL 2006, when I was 24 and was extremely sleep deprived. I visited my father's house and was filling my plate up with food at the stove, and the next thing I remember, I was lying on the floor on my back, looking at my Dad above me. I could recognize him, and could smile, but I was paralyzed. He had called an ambulance because apparently I had fallen down, and was doing weird automated movements on the floor. I came to, but was unsteady on my feet, confused, and crying by the time the paramedics arrived. I went to the E.R. but they didn't do any tests on me because I was fine again, and I went home.

I did research more online, figured I should see a neurologist, went to one, had an MRI and EEG-they found nothing and said "don't worry about it".

Fastforward to January 2009-I was showering in the morning at my fiance's place (he had gone in to work) and the next thing I know I wake up in his bed five hours later, confused, feeling like I had been hit by a truck, with a bloody face. Over the next thirty minutes, I piece together that I must've had a generalized tonic clonic (grandmal) in the shower/tub as there was blood where I hit my face. Somehow, I vaguely remember pulling myself up with the shower curtain and getting dressed (I am so glad about that because his roommate was home at the time-but in a different room) and then I must've made it to the bed. Still confused, I eventually call my brother and my fiance. My fiance immediatly comes home and takes me to the E.R. where they give me an MRI right away-nothing there-normal brain again.

I didn't really F/U because they never find anything, and I try to always stick to a strick sleep regimen. In the meantime I continue to have auras/etc.

Fastforward to July 2010, one week after my Wedding (still very sleep deprived-I had just gone back to work) I had been having auras all morning then, while sitting on an exercise ball at my desk (dork) I feel a huge aura coming on and then the next thing I remember was arguing with paramedics in an amublance. My co-workers say I uttered the "epileptic cry" then stiffened, convlused, bit my mouth and tounge which bled, and then I turned blue. Luckily, I work with nurses, and they kept me safe. My husband met me at the E.R.

I followed up with an AWESOME neurologist and he explained why I NEEDED TO be on meds. Even simple auras are themselves Temporal Lobe Seizures and can cause brain damage. Yes, they are kind of fun sometimes, UNTIL YOU HAVE A BIG ONE. I started on Levetiracetum (generic Keppra) and was depressed, my hair started to fall out and I was incredibly irritable and easily angered, but it evened out over about a month and a half and now I feel GREAT. The meds make me feel more focused again. It took decades, but I am finally, officially and epileptic of idopathic origin. (I did have high fevers as a child and had my tonsils out, I was also on a lot of sports teams and I remember banging my head on the ground after spiking volleyballs and getting my feet tangled with other players while in the air-those are my only guesses)

My questions (which will probably never be answered, because we are all different) are: Will my seizures continue to worsen as I age, or will meds keep me under control? Has anyone out there (female) attempted pregnancy ( I already know I will have to switch meds to Lamictol as it is the best for developing fetuses)

In a (longish) nutshell, those are my experiences and I look forward to conversing with you in the future. :) Thanks for reading.

Greetings Juperee (and everyone!)  Wow! I have been on this site for about fifteen minutes, and I am already a bit obsessed because this is the first time I have ever found people who have the exact symptoms as I do.  Fabulous!  Two days ago, I joined "patientslikeme", visited message boards, and tried to find other TLE people "like me", but to no avail. The vast majority of those I encountered had severe epilepsy and were lucky to have ONE DAY without seizures. I feel for them. I have had mostly ecstatic "deja vu" auras without  a loss of consciousness since childhood that tend to last only a few seconds each time.  When I was quite young, I experienced the doom and gloom filled "jamais vu" auras for a few seconds as well. I remember that I tried to tell my parents what was happening, but they assumed I was just being a weird kid or was just letting my imagination take over. It never seemed to affect me, and they only lasted a few seconds ,so no-one cared.  During high school, college, and beyond, I would often have my auras upon waking and entering the shower.  They would come on like a wave, intense deja vu, then suddenly everything in the world/universe comes together and simply, somehow, "makes sense".  If I would look at the shampoo bottle it would just "make sense" and fit into the grand scheme of the universe as well. Somehow, certain childhood memories would melt into the mix of feeling and emotion, and sometimes the "jamais vu" would kick in and would make me think of an ex, or an old friend, or even an old childhood experience.  I know I have had many night-time auras or even larger seizures as I have woken up paralyzed, or drained of happiness. I have no idea how many times this has happened but I always quickly rebound. These disturbances in the force would always manifest after extreme sleep deprivation, often after drinking, and perhaps sometimes during my womanly time of the month. (Most of you seem to be men, so sorry for the TMI, but what are you going to do?) I was never seen by an MD for these issues UNTIL 2006, when I was 24 and was extremely sleep deprived.  I visited my father's house and was filling my plate up with food at the stove, and the next thing I remember, I was lying on the floor on my back, looking at my Dad above me. I could recognize him, and could smile, but I was paralyzed. He had called an ambulance because apparently I had fallen down, and was doing weird automated movements on the floor. I came to, but was unsteady on my feet, confused, and crying by the time the paramedics arrived.  I went to the E.R. but they didn't do any tests on me because I was fine again, and I went home. I did research more online, figured I should see a neurologist, went to one, had an MRI and EEG-they found nothing and said "don't worry about it". Fastforward to January 2009-I was showering in the morning at my fiance's place (he had gone in to work) and the next thing I know I wake up in his bed five hours later, confused, feeling like I had been hit by a truck, with a bloody face. Over the next thirty minutes, I piece together that I must've had a generalized tonic clonic (grandmal) in the shower/tub as there was blood where I hit my face. Somehow, I vaguely remember pulling myself up with the shower curtain and getting dressed (I am so glad about that because his roommate was home at the time-but in a different room) and then I must've made it to the bed.  Still confused, I eventually call my brother and my fiance. My fiance immediatly comes home and takes me to the E.R. where they give me an MRI right away-nothing there-normal brain again.   I didn't really F/U because they never find anything, and I try to always stick to a strick sleep regimen. In the meantime I continue to have auras/etc.  Fastforward to July 2010, one week after my Wedding (still very sleep deprived-I had just gone back to work) I had been having auras all morning then, while sitting on an exercise ball at my desk (dork) I feel a huge aura coming on and then the next thing I remember was arguing with paramedics in an amublance. My co-workers say I uttered the "epileptic cry" then stiffened, convlused, bit my mouth and tounge which bled, and then I turned blue.  Luckily, I work with nurses, and they kept me safe. My husband met me at the E.R. I followed up with an AWESOME neurologist and he explained why I NEEDED TO be on meds.  Even simple auras are themselves Temporal Lobe Seizures and can cause brain damage. Yes, they are kind of fun sometimes, UNTIL YOU HAVE A BIG ONE.  I started on Levetiracetum (generic Keppra) and was depressed, my hair started to fall out and I was incredibly irritable and easily angered, but it evened out over about a month and a half and now I feel GREAT. The meds make me feel more focused again. It took decades, but I am finally, officially and epileptic of idopathic origin. (I did have high fevers as a child and had my tonsils out, I was also on a lot of sports teams and I remember banging my head on the ground after spiking volleyballs and getting my feet tangled with other players while in the air-those are my only guesses) My questions (which will probably never be answered, because we are all different) are: Will my seizures continue to worsen as I age, or will meds keep me under control? Has anyone out there (female) attempted pregnancy ( I already know I will have to switch meds to Lamictol as it is the best for developing fetuses) In a (longish) nutshell, those are my experiences and I look forward to conversing with you in the future. :) Thanks for reading.  