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Mikey4

Deja vu and Epilepsy

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

Hello,

My name is Amy age 24 and I have some of the same symptoms.  I was diagnosed with Left Temporal Lobe Epilepsy about 7-8 years ago.  When I have episodes I have some of the symptoms you have explained.  Mine usually start with a wierd feeling in my stomach, I also find myself swallowing and then have the deja vu.  Its usually last approx. 15-30 seconds.  It's hard to explain my deja vu, when I have episodes (seizures) I always have the same deja vu but I quickly forget what it was.  I always get asked what was your deja vu and I just can't talk about it because I don't remember - it's wierd.  I also find my self with memory issues.  All of those symptoms affect me while at work.

It really sounds like you may have TLE.  But there are alot of different types of seizures it's possible that it could be coming from somewhere else. 

Maybe you can get your MRI and EEG pretty soon.  I know they are both annoying, and they can be very time consuming.  But the MRI will definatly help you with alot your questions.  And make sure you really like the neurologist that you are seeing, I believe that is very important.

I know for sure that lack of sleep can cause some episodes.  I also know that stress and depressions can cause seizures.  My doctor tells me since I have epilepsy he wants me to have more than 8 hours of sleep every night.  So make sure you get enought sleep everynight.

I am not too sure what to tell you if your MRI or EEG comes back normal just don't give up.  Maybe you need more tests, and need some blood work.  Don't give up until they give you a proper diagnoses.  If the MRI does come back abnormal make sure the doctor really explains what it means.  And if they suggest medicine do some reseach of the medicine.  I have tried so many different anit-seizure meds.  Some just didn't work or gave me some bad side effects.

Hopefully you get some good answers soon.  Make sure you get tests that the Dr. ordered.  Take Care

 

Amy

abdancer1010@comcast.net 

 

Re: Deja vu and Epilepsy

Thank you everyone for sharing. I am so happy I found this site today.
DOES ANYONE ELSE SMELL SOMETHING STRANGE WHEN THEY HAVE THESE EPISODES?
My husband kept telling me to see a doctor but I thought a doc would think I was nuts if I walked in there and said I was having Deja Vu and smelling something weird.
I have been having these episodes too but have not been able to describe them.
I also thought I was just remembering a dream from the previous night. Usually this would start after having a restless night sleep with disturbing dreams.

It then starts with a weird feeling in my stomach and then the strong sense of Deja Vu then dizziness and that sense that I am out of myself. And sometimes I can hear someone yelling in my left ear. The episodes that are really strong are coupled with that smell. I can't explain what kind of a smell it is but I remember thinking the first time it happened that it is a familiar smell but I can't pin point what it is exactly.

I was told that I had a seizure about 2 years ago but I was a heavy drinker and thought it was just a withdrawal from alcohol. Now when I have these what I call "smell episodes" sometimes I am really scared and think I am having a stroke.

What I do know is that when I had my alcohol withdrawal seizure the person I was with said I kept asking him if he smelled that weird smell and then after that my eyes rolled back in my head and I started to turn blue. He gave me mouth to mouth and I came out of it.

I have never had anything like that again but about once a month now I have this Deja Vu thing. It happens off and on all day and then the next day it is like nothing ever happened.

My husband thought maybe it was because of menapause ( I am 48) and it was a hormone imbalance so I made an appt with the doc.

I went to the doctor today for an EEG. I told the technician that it might sound weird but the only way I could describe it is to say it is like Deja Vu but a scary Deja Vu and a sick feeling in my stomach accompanied by dizziness. She made me feel so much better when she said I am not the only one that experiences this and that it is related to seizures. She said my EEG looked normalthough so now what?

I will keep checking back to this discussion.

thanks for sharing everyone. Now I don't feel like such a nut.

Re: Deja vu and Epilepsy

Well... I don't beleive it! After having another Deja Vu moment the other morning at work, I decided to look into it, and here I am. I didn't really think I'd find anything because I'd always thought I was the only one who experienced it. I have had these strange yet welcoming episodes of 'Deja Vu' for at least 10 years or more now. They are so random and not very often. I say I get them at least once or twice within 2-3 days every 3 or 4 months or so, could be longer... but the other morning I had quite a strong one which for the first time had left me feeling quite lethargic and naucseous.

And here I am, reading the symptons of exactly what I feel when I get these 'Auras'. I've never talked to anyone about them mainly because they've never bothered me and I wouldn't even know how to describe them, though reading through this forum I have many of the symptons described.

My 'Auras' never seem to last longer than 10-15 seconds and I'm fully aware of my surroundings. I've never had them outside or anywhere else other than at home, in bed or at work.
It starts with a sudden rush of anxiety but at the same time feels kind of euphoric. I then seem to go into a day dreaming state, everything seems distant and hazy, sounds seemed muffled but still audible. I've never got the impression that these are linked to dreams, they purely feel like Deja-Vu... everything that happens within those 10 or so seconds seems to have happened before. I don't feel like I'm predicting what's happening, but when it does, I seem to tell myself 'I knew that was coming...'
On quite a few occasions I've snapped myself out of them by quickly focusing on something but will always leave me feeling quite out of it for the rest of the day. Then over the next 2 or 3 days I will get split second surges as if another one is coming, but it never seems to materialise, then nothing again for months.

Nothing seems to trigger them off, like i said they seem very random, but the weird feeling of all is whether I am home or at work, the sensation of these Deja Vu feels exactly the same.

Deja Vu: Art Project

Hi,

I'm a London based artist doing a photography MA at the Royal College of Art. I'm interested in states of consciousness and ways of revealing internal psychological space. I am looking for written responses that detail specifically the phenomena of déjà vu and focus on the experience itself, how it feels physically and mentally. My sister has had acute epilepsy since she was 12, so I have a clear understanding of the condition and the daily problems that arise.

Please just contact if you have any questions,

Dominic Hawgood
www.dominichawgood.com
info@dominichawgood.com

Re: Deja vu and Epilepsy

a lot of what you described sounds like tle. a lot of it, besides the tle stuff, sounds like ADHD, which could be a psychological thing that the dr. was thinking of. depression, too, can look like ADHD. It's possible that you have a nice mix, too. You have an interesting brain :)

 

peace :)

Re: Deja vu and Epilepsy

Have you read PROUST? His autobiographical novel illustrates deja vu with and with out the actual memories; deja vu like conditioned visceral sensations from environmental (and internal) stimuli without the associated memory(presently forgotten) gives mystical feelings seemingly beyond logic, as does TLE, and they both can work together to give quite strong cascading sensations reaching illusory divine levels. Sometimes this can be artificially induced during slight seizures with Pavlovian and/or operant conditioning.

Disruptions of rote associations of objects can be caused by TLE, though not as frequent for me, leading to thinking about things in a different or totally new manner, giving useful insights at times or just a sense of the silliness of the arbitrary nature of daily things. Such symptoms can also be the results of minor strokes, poisons, etc.

Trying to objectively and validly label feelings in TLE may well be impossible, and, for me, has caused much trouble with popcorn psychologist, to where now I frequently label my minor ictal sensations as adverse visceral sensations to try to preclude their careless invasive assumptions (I also studied the MMPI in college (avoid the MMPI like the plague in case you do have TLE; the MMPI sticky labels many TLEs as paranoid schizophrenia), and TLE strengthened my following Skinnerian Behaviourism).

One of my psych professors who told me that I aways amazed him by getting my fat head head through the doorway and complained of my verbosity (and gave me an A Plus for the course) led me to research the Geschwind Syndrome, and other usually rejected concepts as Forced Normalization, Kindling, TLE Personality, etc.; TLE Personality phenomena have generally been replaced with separate psychological diagnostics that only multiply problems with DSM cookbooks.

The books I am studying now are The Epilepsies by Panayiotopoulos, Imitators Of Epilepsy by Kaplan/Fisher, Limbic Seizures In Children by Avanzini/Mira Chapter 19; I think they are listed on Amazon.com; and, I am reading a critical study of and with The Idiot by Dostoevsky. These books answer many usual and unusual questions about epilepsy, especially TLE, and are fairly recent; Dostoevsky is from the 19th century, but his works are classics, especially with epilepsy.

Good Luck!

Re: Deja vu and Epilepsy

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

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.

 

Re: Deja vu and Epilepsy

What's the difference between epileptic déjà vus and regular déjà vus?

I mean people without epilepsy get déjà vus as well, so what's the difference between ours and theirs?

I feel I have a bunch of them and wonder if they're normal or not.

Re: Deja vu and Epilepsy

Believe me, it is very different.

The deja vu experiences related to epilepsy are a very strong feeling of day dreaming, that freezes you..you disconnect from the world around you. You can speak but don't know what you are saying, you can hear but you are in a bubble.. and when  you come back, well, you feel very relaxed, tired, your brain seems to have gone to sleep...

 You know they are comming, seconds before they are there..and try to get distracted to see if they don't happen, but they do...

 

 

Re: Deja vu and Epilepsy

WOW!!! Your description is dead-on.  I am new to this website and have experienced exactly what you described for 22 years.  The "spells" (as I have reluctantly called them since I have never actually been diagnosed) happen once every 6-9 months and come and go for about a day when I have them.  You're absolutely right in that I try to fight them off, but once they come on, there's no stopping them.  It's almost like static in the brain for about a minute.  The first few spells are generally mild, but seem to increase in intensity as they continue to occur.  Most of the time they start out mild and spread out, leading up to a few intense spells close together and then they are gone.  They are usually tied to not getting a lot of sleep and stress can also be a common factor.  However, occasionally, neither of these seem to be present (today for instance) and it can still happen.  I can't believe one of the posters said that they found these to be "enjoyable."  I don't like them at all and have tried not to stress out about them over the years since they have been fairly consistent.  While it is slightly comforting to see that I'm not alone, it scares me to see so many people posting that they eventually have a grand mal seizure after having this type for some time.  Any comments would be welcome.

Re: Deja vu and Epilepsy

ugadude-  I too see the description of once they are coming on there is no stopping them to be extremely accurate!  I am on medicine to control mine and it works about 95% of the time as long as I am perfect about taking the meds.  Once in awhile though, one will come on and there I go, off into the Deja vu world that freaks me out.  The good thing is ...I get a little 30 sec - 1 min warning that it's coming.  I can't stop it, but I know it's coming.

 While figuring out and dealing with getting the right meds for me though...I have to be another poster that says that I did have a grand mal.  The scary part was, it was in my sleep.  It woke my husband up, he had to call 911 and I woke up in the bathroom trying to use the toilet talking to the paramedics after losing control of my bladder during the seizure.  It wasn't my proudest moment but our local team here was great about it.  It was very scary and confusing.  Much more so than a Deja vu moment which I would take any day over the grand mal but hate to have the Deja vu too.

 I have found though that I have a hot spot for the Deja vu.  There's a ballpark around here that I go to and it seems that on the fields there when I'm sitting in the dugout waiting to bat....it's like the tape is just "re-laying down on old tracks" in my brain.  My brain doesn't know what to do with the info and it just goes right into seizure mode.  I've sence stayed away from there and the seizure rate has dropped significantly!

 

Re: Deja vu and Epilepsy

Hi, just want to enter the TLE/Deja Vu conversation. Feeling a bit alone until I get a diagnosis (if I get a diagnosis that is conclusive ie.)

Last week I had a day of constant peculiar type of Deja vu where I felt I was wide awake but having strange dream-like peculiar images to sum up what I thought I'd just seen or heard (ie in reality). The images were in minds eye, not hallucinations, and were quite bizarre. I felt a little bit out of it but obviously nothing to bring attention to myself cause I spent the day with my daughter and grandson and they didn't notice anything. (I didn't mention anything at the time.)

That night just before I went to bed, I was sitting on the toilet (sorry about the detail but is important - cause I didn't fall off it when I had my "turn") and suddenly I was in a black void with bizarre sensations and images and a sense there was a presence trying to pull and tug me away somewhere. When I came to I was stiff in the body (had aching teeth and jaw for 24 hrs), but upright. I was very confused and had no idea where I was. Eventually I realised and together enough to take myself to bed. The next day I was tired and out of it. (Normally a high energy positive person) and took myself off to a doctor (I was on holidays so not my own).

The focus has been on seeing if I've had a type of stroke (because of my age & family history) but so far nothing has turned up. I was diagnosed with TLE much earlier in my life but it seemed like a one off thing that neurologists further down the track disputed saying the symptoms (like the day of deja vu last week) were more like panic/anxiety attacks.

No panic or anxiety in my life of late and was having a great family time when it happened. I'm pretty freaked out cause I've never before had a turn like I did that night. I live on my own and have just moved geographically away from my family. I'm not game enough to drive until the experts get to the bottom of it. I have more tests (incl EEG) over the next few days.

I found this website tonight with comments and feel less alone.

 

 

Re: Deja vu and Epilepsy

Shotpu,  wow I like your "hot spot" discription! it is dead on the money. It is confusing trying to figure out if its the area or the thoughts you think when in the area. I have even triggered sezures from thinking about my "Hot Spot"  when I am nowhere near it.

I have woke up a few times in the ambulance myself with a little bladder problem. Always fun when you are on the small town fire department. It seems to come up as a topic of conversation when they visit me in the hospital. I even woke up with painted toenails. Always nice to have friends haul you to the hospital. Hazeing and razzing is one of my side effects.

 My point is, try to relax. You are not alone, you will learn to live with the symptoms and auras . They are part of a epiliptics life. Try to go with the flow. I know its easy to say but as soon as we learn to not stress about it you will understand your not nuts , you brain likes to play jokes on you.

 

Re: Deja vu and Epilepsy

Ugadude - I have never had anyone describe my auras so perfectly! I began having them when I was about 11 years old, and everyone dismissed them as daydreaming. I tried to describe them, but could never find the right words or ways to describe exactly what I was feeling. When I was 22 I had my first grand mal seizure. These only happen in my sleep, but everyone of my CT scans and MRI's came up clean. It took 4 years and 3 dr's to finally diagnosis me. My night time seizures are gelastic seizures,that sometimes progress to secondary grand mal seizures, but the dr's have still not been unable to diagnosis the seizures I have had the longest. I was hoping when they finally did an video eeg in the hospital that I would have an aura also, so that would be diagnosised also, but of course that did not happen. After confirming the gelastic seizures I was put on Keppra which has reduced my occurences of auras also. It use to be every 3 to 9 months I would experience them many times a day for a couple of days, then they would disappear again for several months. Since I have been on Keppra I am down to one or two days a year instead of 4-8 days a year. As of yet it is still undiagnosised, but I am glad to know that I am not crazy in what I am experiencing. I hate that any of us have to go through what we do, but it is nice to know that others can understand where I am coming from! Good luck to you! And thank you so much for your post!

Re: Deja vu and Epilepsy

Its interesting reading where other people are trying to explain what you have been trying to describe for years. I also have the Deja vu auras. My thoughts often are of the same situation , often something as simple as mowing the same area of my yard. As unuasual as it sounds I enjoy the feeling also. I am aware what is going on and know they will end in a short time frame. After I rejoin the real world I am very relaxed .  I actually had one of the sezures during one of my EEG tests. The extra electrical impulses are coming from my left Frontal lobe.   The majority of the time it is when I am very tired due to lack of sleep or just waking up in the morning.  If I miss a dose of meds I will have a series of auras the following day after I resume the drug. They will happen 3-7 times within 3 hours. They do turn into mild sezures with normal symptoms like confusion and tight chest , I have to actualy remind myself to breath.

My sezures may have been caused from a career competing in martial arts (countless blows to the head) and maybe a few from the wife also.LOL     No signs of any damage on cat,pet or mri's though. Problems didn't start till 10 years after I stopped fighting.  I also have grand mal sezures if off medicine for any length of time.

Re: Deja vu and Epilepsy

Wow ,you have it for sure. I have been trying to discribe this for  40 years. I started calling them "My funny feeligs" because at 12 that's the only way I could discribe it. I sometimes have these Deja vu feeling and along with it my body aches ,I would say I feel it in my chest and feet like a compression it's not a hurt or a mucsle pain it's more of a ache. I just wondered if anyone else felt this.

You also said you try to distracte yourself to get them not to happen I do that also and I found I can stop them from happening some of the time. Have a friend touch your arm ,hand,knee, and it stops . I just say I'm having a funny feeling they touch me and wa la. Sometimes it works. Good luck.

Re: Deja vu and Epilepsy

This is exactly what I experience, followed by a migraine....

Re: Deja vu and Epilepsy

Thank you, thank you so much for your comment!! Thanks to all of you, actually. I have been suffering from these "episodes" for about 8 years now. At their worst I was having 5-6 of these déjà vu/Spacing out episodes a day!! I have had an MRI that came up clean, and am currently waiting for the results of my second EEG... I have been told that it's in my head, that it's anxiety or panic attacks... I try to explain to people that this is something physical, try to describe what it is these feel like and only now, through all of your words and advice am I able to express it, and to know I'm not alone (and not crazy) means a lot... It means more to hear about temporal lobe epilepsy for the first time and hear all my symptoms described... Down to the cause as I suffered a bad concussion after a hit and run about 8 years ago. Again, all I can say is THANK YOU!!

Re: Deja vu and Epilepsy

So, I'm talking to my boyfriend on gmail messenger right now, who has epilepsy, but hasn't had an MRI yet (damn the UK). From his symptoms and the seizures I've seen, which have been quite a few, I told him it was his temporal lobe. He gets these deja vu moments as he' still "asleep" after a seizure where he talks to whoever he was talking to like a week or more ago, usually his sister, and has a full conversation out loud. It is rather amusing I must say b/c he is usually telling her how he's going to marry me. Anyway, I digress... I asked him if he regularly gets deja vue and he was like , yea, why? Funny I came across your postings tonight.

Re: Deja vu and Epilepsy

hi mikey im lindsay :) i read your message and your not alone in feeling dejavu its really weird and uncomfortable.. i was diagnosed in 2005 i had just turned 18 i have tonic/clonic grand mal seizures i have no family history or nothing tramatic has happened to me they just came out of no where i know what your talking about you feel like your not there it does feel like being stoned 24/7 thats a good way to describe it .it gives me bad anxiety . but im learning to live with it and its helps alot  talking to people who feel the same . im trying to find ways to cope  message me some time good luck

 

lindsay

Re: Deja vu and Epilepsy

 Deja- vu symptomology is an aura for seizures which occured when I was attending college a new stress in my life.  I was already diagnosed w/ left temporal epilepsy when I was younger. I had brain surgery and I had new auras, this was one of them and it happened while I was in college.   This was in the 70's. 

 When under stress a counsellor has helped me deal w./ seizures along w/ my Neurologist.  Medication and relaxation exercising  helped.  Simply slow down the rhythm of your pace of breathing, breathing from the chest, walking outside doing it easily.  Has helped me along w/ a balanced diet.  Stress causes alot of disorder!  Learning to relax sure helps seizures not be so intense. 

Re: Deja vu and Epilepsy

dude i know exactly what you are going through except everytime i have had deja vu i end up having a seizure,and i have had the mri theeeg all the test and they cant tell me anything.the neurologist told me that on the test he sees nothing wrong.but what bothers me if its not epilepsy what the hell is it..so anyway i am treated like i have i take dilantin and ativan i have never had head trauma that i know of and im not a drug abuser.but it seems everytime i have a seizure i am stressed or havent slept enough.i know i went off your topic but i am just confused as you are.can seizures be brought on by mental emotional problem i suffer from depression and social anxiety disorder.but only one of my seizures happened around a crowd which i hate being in,but i was wondering if anyone can give me any answers

Re: Deja vu and Epilepsy

yes, they can be brought on by mental issues. your anxiety is key. and i cant remember the technical term, but there is seizure disorder that is not 'epilepsy'. i want to say psychosocial  or psychogenic. they can be triggered by stress, anxiety, depression, panic disorders, schizophrenia...even migraines. so don't worry TOO much. i've been dealing with mine since i was 12. as i've said to others, educate yourself. carry a notebook around. sometimes a question just pops into your head. write it all down. when you go to see your doctor, ask. if you don't, you will never know the answer. good luck! :-)

Re: Deja vu and Epilepsy

Hi,

I'm just looking for some advice and maybe somebody knows what i'm going through or what it really is? I'm a 17 year old male and i use to smoke a fair bit of dope and have taken numerous drugs before recreationally, i dont think this has anything to do with it but it might help to know. I also moved from the U.K to here Australia last august were i went through alot of stress from leaving my close friends and girlfriend behind, But this was over 6 months ago now so i dont think it has anything to do with it.

This is what i experience..

- I dream everynight and i can remember it in great detail the next day and even days after.

- I get Deja vu around once every three days, usually more actually, these experiences are very realistic and the more i get them the more i feel there leading up to something bad? Wow that sounds nuts but it's true. 

- I get eye spasms often

- Most of the time I feel im living in a cloud, things don't seem real. I guess it's a kinda high feeling? living in a bubble? hard to explain..

- I often daydream/zone alot out

- Ocasionally i think i can hear a really high pitch pixelated grainy noise, sometimes really loud?

Iv'e had experiences when i would bolt out of bed hearing this noise and felt like i was in a trance, i felt like i had to balance the light in the room i was in? It's really hard to explain but it's happened a couple times to maybe it's related..

I dont have a clue why any of this happens and iv'e never spoken to anybody about it, do you advice that i should? I really don't want to end up going to get tests done and just given some medication to take..If theres anything wrong with me in the first place?

The worst is the deja vu, its been happening much more recently. These feel incredibly real and feel like there leading up to something bad. I've always had deja vu moments that i can remember but now there really often and much more intence.

Before the move to Aus 6 months ago i was not getting the Deja Vu this intence, but the rest of the experiences remain.

 

I would be extreamly grateful if anybody knew what i was talking about in any part of that so i know if i need to undertake tests or not. 

Thank you!!

Re: Deja vu and Epilepsy

Hello,

I am really relieved to find that there are people who suffer from the same thing as I do ... Thanks for posting your expriences!

About 1 year ago, during a flu, heavy déjà-vus started. They got me several times per day, and after the flu was over they keep coming back in roughly a once-per-week pattern, no matter whether I am having a time of stress or wheter I am on vacation. When I have my "phenomena" day (more often than not I know before they occur somehow that it is time for such a day again), I am going through 1 to 6 episodes. They come always as the feeling that something I am seeing, thinking or otherwise experiencing was part of a dream I had the previous night, even when it is quite clear that this can't have happened. Afterwards I feel a little dizzy, I am sweating and my pulse rate increases. In the evening I feel quite exhausted. No other symptoms. Well, twice I got unconcious, the awakening being somehow awkward; it was really hard to come back to the real world.

As most of you I had an MRT, without pecularities. A short EEG and stroboscope test didn't raise any epilepsy suspicions, which doesn't say too much, as you know.

At the moment I am not so sure whether or not to undergo any further steps. It seems from what some of you have written (and thanks again!), that a medication could bring it to an end. But since the fits aren't that bad, I am reluctant to manipulate my brain chemistry ...

But I will check out this page regularly, share my experiences and look for yours.

(Male, 45)

Re: Deja vu and Epilepsy

Hi

 

I have had this since i was about 12, In fact just had one a moment ago lol, I was in the shower and all of a sudden as everytime I had a feeling come over me id start to feel dizzy and it will get stronger and stronger i look around and everything is as i imagend it," what i mean is if I have one in town everyone around me and anything that happens would feel like ive seen it before" It will last 20 secounds or so then nothing, Ive been to the doctors about this many times and always told its nothing to worry about or they will ecg me and it shows nothing.

 Its just the not knowing really ,I wouldnt want to take medication for it as it happens now 2 times a year less then it did when they first started anyhow Im not sure if its down to stress I woke up this morning with sleep paralasis and my sleeping has been rubbish the past couple of weeks so it could be that.

 Ive never been able to get an mri from my doctor most just say its nothing to worry about or they may if i persist give me an appointment for an ecg that always come back normal other then a slight iregular 3rd heart beat. so for a while ive been thinking about going private for it least that way i can get the help i want.

 

Re: Deja vu and Epilepsy

I have a niece and a granmother who are epileptic. My symtoms seem to be quite nearly identical to many posters here. When i was a kid/teenager I would often get tingling feelings as if the blood was rushing to the side of body that was closest to the floor if I was lying down on my side watching tv. My whole body and head would get numb and tingly.

2 times while smoking pot I have collapsed and broken out into a sweat had rapid heart beat.

Within the last year after quitting my job I held for 15 years due to a hostile work environment, I have started having the deju feeling come on anywhere from 1x every couple of weeks to 7 times within the last 24 hours. It seems to follow with a feeling of "oh no, here we go again." I often feel like there is something evil in my presence suddenly or watching me from behind on my right side. I can have tunnel vision dizziness, light headedness, seem to almost forget to breath and rapid heart beat, exhaustion and need to lie down and either curl up or lie on my stomach with my eyes closed til it goes away. I break out into a sweat, need to turn on the ceiling fan and get very numb in my limbs and tingling. I also seem to drop things more than I used to. not able to grab onto things like I should.

I have a history of anxiety, depression, suicide attempts, and for a while we thought I might be bipolar, then was placed on neurontin and valproic acid for a while. I went off all the meds cause I didn't think they were working rather making me more of a mess.

I used to get horrible migraines when I was a teenager into my adulthood with nausea, vomiting, excruciating pain that would make me roll around on the ground or the bed and couldn't deal with lights or noises.

This last 24 hours I have had 7 'episodes' had at least one while asleep. was up early this morning around 9 or 10. then had another one and went back to bed. I took a xanax I think last night or this morning cause this is the most I've ever had. I woke up this evening around 9:30 and couldn't figure out why it was still dark outside until I realized it was night time. But I couldn't remember anything prior to the night before...not getting up this morning or anything for quite some time. My mid back and calf muscles are delibilatingly sore all of a sudden and I chewed and bit my tongue on both sides so I have to be careful with what I eat or it will sting.

I took an epsom salt bath twice, used an infrered heat lamp on my back, took 2 naproxen and still I've very sore and my headache is still here. My neighbor is a doc and he said it sounds very much like epilepsy, but none of the other docs seem to think its anything but panic attacks/anxiety.

sometimes the episodes only get as far as an aura and then stop. sometimes it seems I can stop them. Sometimes they are almost enjoyable but the evil deja vue feeling is horrible. It has made me cry from feeling. I'm over it!

Re: Deja vu and Epilepsy

I expereince this all the time

 

even when its not a seizure sometimes I get to the feeling that I think its a seizure but its not. I spent 17 days in a seizure monitoring unit and most of those feelings were not seizure related. I seem to daydream a lot too, I need a digital recorer for college. I think its lack of sleep or stressors around me that make me that way sometimes.

 

Good luck

Re: Deja vu and Epilepsy

Hello! I too could not believe that others have these symptoms as I do. It seems that they can be different for everyone I suppose. I have never told anyone of these episodes that i have had. I am 36 years old and i started getting these Deja Vu moments when i was 12 years old. I never told anyone because I didn't understand it and thought that everyone would think I was crazy or weird. I didn't know how to explain it. My parents have told me that when I was a toddler around 3 or 4 I had seizures for a while but, it stopped on it's own. I really didn't correlate the deja vu with epilepsy until now. When it happens I get a strong feeling that I have seen or done something before. Sometimes I get thoughts of a dream I had. As soon as the thoughts come to my head I get dizzy. The dizziness sometimes is so strong that I need to grab ahold of something in fear of passing out. I also get a strong feeling in the pit of my stomach almost like going down on a roller coaster. Once this whole episode finishes I get disoriented. i forget things momentarily. It hasn't happened in a few months until about two weeks ago. I was at work on a register when it happened. When it was over I couldn't remember certain things I had to know at the register. I don't have medical insurance at the moment so i won't be able to get any tests I guess but I will as soon as I can. Thank you all so much for these comments.

Re: Deja vu and Epilepsy

I used to experience deja vu (auras) but don't anymore.  Now I can feel completely fine, and end up on the floor.  It's frightening for me, as well as others who witness it.  I wear a helmet; which has saved my life on several occasions.  Please, be glad you have your deja vu.  They are a real blessing in disguise.  It gives you a chance to keep yourself out of danger when a seizure occurs.  Sometimes deja vu appeared with no seizure afterwards.  (However, they really are simple partial seizures by themselves.)  It is a blessing, in disguise.  Believe me, I wish I still had them.  Take care,  T. Cameron

Re: Deja vu and Epilepsy

Reading these comments I think I might as well be suffering from TLE............I thought I was going crazy!!! Atleast now I have an idea to what may be causing the nausea, tingly feeling, deja vu and weird smells! It only seems to happen right before my period is there a link between PMS and TLE? My Physician has diagnosed me with anxiety but I am thinking he got it wrong. I've been taking anti depressants when i feel the symptoms coming on but they do not seem to help. What would be the best route for me to go doctor wise?

Re: Deja vu and Epilepsy

This website has most of the answers to your questions.  Yes, there are hormonal links to seizures.  It's almost impossible to know if you have TLE unless you've been diagnosed.  There are plenty of tests for the diagnosis.  However, I think (not sure) this is the most common form of epilepsy.  It looks just like Also, the best doctor to see would be a neurologist, perhaps even an epileptologist.  They know a lot more about this.  Again, this site has answers for finding a physisican.  Good luck! 

Some anti depressants are also anti seizures medications.  There is more about info about it on this very site.   Make sure to look at the video on the bottom right corner, "Understanding Epilepsy."  This world reknowned epileptologist (neurologist that specializes in epilepsy) knows what he's talking about.

Re: Deja vu and Epilepsy

I had my first 'episode of this deja vu, dizziness, nausea; ending in a cold sweat about 2 1/2 years ago. 

Then beginning in Sept 11, I started having them more regularly.  Since Sept, I have had 21 of these 'episodes'.  I have had bloodwork, EEG, MRI, Ultra Sound and heart tests... and nothing is showing up.

 I do have an appointment with a neurologist on Thursday. 

Words of wisdom???

Signed... 

Nervous :(

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