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deja vu

I  want to share my experiences with Deja vu. I am hoping that people will see this and also want to descibe their unique experiences. I realize these can be very hard to describe, because it is so intense and personal, and if you are having them you know exactly what I mean. Epilepsy is a serious medical condition. Along with that burden comes this incredible almost enlightened feeling in the form of these deja vus or simple partial seizures.  I am not saying I enjoy them, I am only saying there is something strangely familiar and baffling about the whole process.
I have experienced these deja vu episodes for a few years now, and have just come to learn that these are simple partial seizures (SPS).  I was diagnosed with epilepsy in May.  I had a tonic-clonic seizure on May 21 2009. My Dr. says that I have been experiencing SPS for a couple years now. As for the Tonic-Clonic, for some reason on May 21, my SP seizure took a different path and became the tonic-clonic. It could happen again. But it is hard to say when, because I usually don't have a tonic-clonic after a SPS. (Meaning that a deja vu/SPS is an auru or pre-cursor for the tonic-clonic, but that doesn't always happen for me.)  This was my first tonic-clonic (that I am aware of) and I am 31 with no history of epilepsy in my family.  I have no memory of my tonic clonic seizure, which is a pretty big head trip. My husband was there and he saw it and called the medics.
I was woken up early that morning with my usual deja vu with metallic flavor and hot flashes. I was having them over and over from about 6:30am-8:30am. I got up at about 8:30am and went to the bathroom. I told my husband I was going back to bed, that I was having my deja vu's. By now, this was fairly typical, I had been experiencing them for a few years.  There was a definite pattern of symptoms that came along with them.  My husband heard a huge gasp from the bedroom and came in to find me drooling, my eyes fluttering, and I was rythmically shaking, arms, legs, etc. I was unconscious and he called the medics. They came around 3-5 minutes later, and I woke up to them standing over me asking what my name was, my husbands name, what year, etc... I was able to barely respond, and I was confused. I was told I had had a seizure. I was able to get up, and I noticed my tongue was all bloody and chewed up, it was all very scary and confusing, because I didn't remember any of it.   I was driven to the hospital, where I continued to have more deja vus. I was so sick, they had to give me a bag in the ER cuz I thought I was going to lose it.  Everything was fine in the ER, no tumors etc. ( I already knew that though, because I had actually had an MRI and EEG last fall. More later)  I had the WORST headache of my life the rest of that day. A deep down neck and headache that makes you sick to your stomacch. My whole body felt beat up, every single muscle hurt. Not to mention the chewed up tongue... I was beat down for a few days, completely worthless and out of it.
Last fall, I started noticing a pattern of symptoms with the deja vu. When referred to a neurologist, I was unable to get a positive eeg.  I was actually told I was having panic attacks and was dismissed. This really pissed me off, and made me feely a little crazy to say the least...
I can trace this (I think!) as far back as aug-sept. of 2007. I know it started a while before then- but all I can say is this- by aug.- sept. 2007 I had noticed a pattern- Deja Vu with a really strange metallic flavor in my mouth. The next big series of them was sept. 15, 2008. That is when they woke me up out of my sleep. How crazy is that! Now this was for real, and I knew it wasn't a trick of the imagination. To be jolted out of sleep by deja vu and a metallic flavor was just not normal.
I will usually have about 3-5 deja vu's with metallic taste, one right after the other.  In the VERY beginning, years ago, I would think that maybe I had an inner ear infection, and my eqilibrium was off, so I would elevate myself halfway up in bed. I would take my time getting up so that I didn't give myself that awful feeling.  Then for a while I thought that maybe I was still dreaming!! Maybe I hadn't woken all the way up. The deja vu seemed very dreamlike, but was just out of my grasp, although very intense, and the physical symptoms so INTENSE.
They usually happen in the morning,  waking me up.  Lately,  If I have been woken up with them that morning,  I will have them throughout the day.
I have noticed that I sleep really terrible that night, lots of tossing and turning, hot flashes.  It starts with a jolt out of sleep- like you almost hit a car on the road, and you get that rush. Then- deja vu with a metallic taste that gets hot and fills up my mouth. It almost seems like it comes down from my sinuses, and up through my throat. I get this  familiar feeling times 10,000. A dream or memory I can't remember-  EVERYTHING is SO FAMILIAR every sound, sight, smell, every word someone says. I am always sure I have seen it or been in that moment before. Sometimes its the way I FEEL, at that exact moment - that -is the deja vu, with everything in perfect sychronicity around it. Lately, the deja vu is also accompanied with a flash- of a memory- of when I first had the original thought that the deja vu is about.  It seems just out of grasp, but so closely familiar.  I get so consumed by it I want to figure it out, so I sometimes wonder if I should change my path? If just maybe this is trying to tell me something.... Is this familiar for a reason? Maybe this means I am exactly where I should be at the moment, this is reassurance.  It makes me question everything. I am completely stopped in my tracks.  My face flushes my skin flushes and gets waves of stinging heat and sweat. Then after that I get cold and I turn pale white.  I have never actually thrown up, but I feel really sick to my stomach. I have noticed periods of intense shivering and teeth chattering after the heat flashes lately. (I took my temp the other day during the hot flashes and it was normal. )    Also, if I have a night where I feel close to a deja vu (lots of tossing and turing and hot flashes etc) then that morning, when I get up,  I can tell I feel close to having deja vu. If I look out my kitchen window, there is some kind of a trigger with the way the light reflects off of our flat roof. If I am close, that will usually send me over the edge.  Its so strange.  By the time I am halfway back to my bedroom I am usually in full deja vu mode. When I feel like this, it just comes in waves and makes me sigh really loud over and over to release the pressure of the intensity that my bdoy is responding to. Everything is so vibrant and intense.
Lately I have had them out in public. I am able to keep my composure and almost even push it away sometimes, but I feel so stunned that I know I couldn't or wouldn't want to  respond if someone was to try to talk to me. I tend to gravitate toward people who I am familiar and comfortable with during this.
Two weeks ago,  I felt like I had experienced the whole day before, like i was watching a movie. I was woken up out of my sleep with hot flashes and the awful physical feelings, but no deja vu.   My husband and I drove to a yard sale,  and on the way at a certain place in the road I had the deja vu so strong I said out loud- oh my god, i know I have dreamt this day, this is all so crystal clear, this moment.  I kept on running into people I knew, and everyone seemed familiar, like I could almost place them in my life. Like 6 degrees of seperation, where we all move in similar circles with the same faces and people....  Every time we drove by that place in the road, I would get the metallic taste and all the rest, but no intense deja vu like the first time we drove by. The deja vu I seemed to be able to push away the intensity,  because it was ALWAYS slightly there all day.  I would just shake my head in amazement when the nagging deja vu feeling would get stronger.
How can our brains play this huge of a head trip with us? To know there is a medical reason for this is important, but bewildering when you are in the moment with it.

I know this entry is long, I hope it is easy enough to follow. In a nutshell, this has been my journey into epilepsy.

I would love to hear other peoples deja vu experiences. I would love to know- does anyone else feel like you are two different people? Meaning- when I am in the deja vu moment- I really feel like there is another life I am absent from- whether it is a past life, or just a part of me I am missing, I don't know. I often feel like I am watching a movie of my life that I have seen over and over.  There is something very esoteric and special about these deja vus, that makes me feel like it is not JUST epilepsy.  It is very scary for me to even say this.  If you feel the same way- you know what I mean.  I am not a religious person, nor am I a super hippy into everything magic and alternative.  (Although I do I have interests there, I have been a massage therapist for the last 10 years, so I do believe in human energy and the power of it. )  I was told once I had suffered a very long fall in a past life and this stirred up so many emotions I immediately responded to this person with an unexplainable intensity of tears and a sense of yes!  that could be true. I do not have a fear of heights, but I have a fear of falling. Every time I go down the stairs, I feel and picture myself falling. I am not sure yet, if I even believe in past lives. My heart tells me yes, but my logical brain looks for another reason.


Can anyone relate?

Comments

Re: deja vu

Ditto. How you describe your deja vu moments are exactly the way I feel when I have mine, exactly. I sometimes feel as though I have lived this life once before and I'm catching a glimpse of something I have already experienced. Mine start the way you explain, then I have a gap in time, usually with someone eventually asking me what I'm chewing on at the end. The deja vu is a scary experience for me sometimes. I feel a sense of doom is looming.

For my history- I started having seizures in 2006 as a 32 y/o man. All of my tests were abnormal. EEG abnormal right side, epilepiform activity everywhere. MRI abnormal right sided mesotemperal sclerosis. I've taken many meds, clinical trails, etc. I had a right temporal lobectomy in Nov 2008. Still having the complex partial seizures but no secondary generalized since surgery.

Current meds- Trileptal 450mg b.i.d., Vimpat 100mg b.i.d., Elavil 50mg @ night.

Re: deja vu

I get the fact that I know what is going to be said on the tv a lot. Knowing the next add, knowing what is going to happen. I dont like it, it is not good to experience this.

This is part of my previous seizures. I get the world slowing down, confusion and then blank outs.

It is confusing. Most of the other stuff is unexplainable and I too wish I knew lotto numbers. It does not last for long but it extremely hard to describe.

Re: deja vu

Everybody has Deja vu watching t.v. the plots and lines are so predictable and banal that anyone knows what comes next.

but seriously what we are describing is not fun at all ,interesting that our descriptions are so different but we all seem to know or have roughly the same experiance , more the same than different.but try to explain to someone who has not had these, they think you are nuts or faking it.

Re: deja vu

I get the fact that I know what is going to be said on the tv a lot. Knowing the next add, knowing what is going to happen. I dont like it, it is not good to experience this.

This is part of my previous seizures. I get the world slowing down, confusion and then blank outs.

It is confusing. Most of the other stuff is unexplainable and I too wish I knew lotto numbers. It does not last for long but it extremely hard to describe.

Re: deja vu

Hi vintagemaude,

I've had partial seizures and clusters of seizures all my life, with more and more frequent secondary
tonic-clonics the last couple decades or so, but in the last three years of my 56 years of life, resuming
AED's reduced the secondarys' frequency. My aura are most often adverse, but sometimes they're often
somewhere between divine and blase.

My sensations of deja vu are usually short and more of a feeling of knowing instead of actual knowing.
A few deja vu that seem to be an actual knowing I try to write off as mere coincidences, or as a paradox
of clued memory, such as when I have forgotten I had read a sample preview chapter in the middle of a
novel, then reading the entire edited novel years later, and mysterously knowing parts of the plot, until
I finally read into the previewed chapter enough to then know I've read a version of it before.

The most spectacular deja vu I've ever had was in 1972 at the University of New Mexico on the first day
of an English class and I already "knew" the classroom of students I hadn't met before, with a knowledge
of details for most of the semester with a few of them; it was about like a semester long single replay
of the movie "Groundhog Day." I just wish one would occur with lottery numbers, but no luck yet! LOL.
So far, I've haven't had any major disasters with lengthy deja vu of the disaster (like deja vu in Kurt
Vonnegut's "Slaughterhouse-Five").

Then with AED's effect on memory, the AED's might interfere with remembering that the memory is a memory,
and not an unsourced foreknowledge, sorta like some cases of amnesia where a patient can insightfully
follow a complex path previously learned, but not remember ever having learned the path.

Re: deja vu

Your post is so interesting.  Your experience is very similar to mine - more than any I have ever read about.  So I want to share with you what happened to me and maybe it will help you or anyone with these symptoms better understand what is happening to them.

15 years ago, when I was 27 I began having deja vu.  I had always had these passing moments with a sense of familiarity - maybe 4 or 5 a year.  However when I was 27 I started having 4 or 5 a day.  Then they became more intense and when they happened my stomach would ache.  A few months went by and I was starting to think that I may be losing my mind - because they were so frequent and so disorienting.

Then I knew a had a bigger problem - I started waking up at night with the feeling of deja vu.  It would wake me from a deep sleep.  I had always been told that deja vu was caused by seeing something familiar that triggered that wierd feeling that you had been somewhere before.  But when I started waking up with the feeling - I knew that it couldn't be because of something that I saw that was famililar.

The feelings at night became so strong - I started thinking that maybe they were spiritual in nature - almost demonic - because the feelings were so strong and so intense and out of control.

Within a couple more months it all culminated with a grand mal seizure.  My seizure happened in the waking stage of sleep.  It was between the time your alarm first goes off in the morning and you actually get out of bed.  You know, that stage of sleep when you have hit the snooze button and rolled back over for a few minutes.

My husband saw the seizure and took me to the emergency room.  I had no idea what had happened or why he was taking me to the hospital - I was disoriented and didn't remember things like what day of the week it was.  The hospital told him it was a fainting spell.  Now where they got that from I don't know.  They gave me some fluids, blamed it on my low calorie diet and sent me home.  (I have always been an overweight person and at the time I was on a very low fat diet.)

About a month later it happened again, this time we had guests and they saw the seizure.  It happened at the same time of the morning while I was still in bed.  This time the hospital agreed that it was a seizure and began treatment and sent me to a neurologist.  Several doctors later, many scans and tests the only explanation I received was from a teaching hospital in Atlanta that said I have a spot on my corpus colosum that doesn't allow my brain to fire as fast as it wants to go.  They said that my brain is firing 30% higher than a "normal brain" and that one part of the area that connects the hemispheres can't keep up with that demand.  So they called it idiopathic epilepsy and gave me medications - I think it was a tegretol that I was taking and prozac.

As soon as I started taking the medicine all of the symptoms stopped.  No more deja vu - no more seizures - no more waking up at night.  My old self was back.  I moved to another town about a year later and took myself off of the medicine.  My thought was that I would go back to a neurologist if I ever had deja vu again - it was the leading symptom.  That was 15 years ago and I have not had another deja vu experience - NOT ONE.  At first I kinda missed it.  Because it did seem spiritual to me at times - like an out of body experience.

The only thing that is a bit different for me now is that my memory is not as good - I first noticed it when I started taking the medicine my memory just didn't work as good anymore - and it never really came back.  Now I can remember things - better than most folks - but I used to have almost a photographic memory.  That extraordinary memory is what was taken away from me.

Another thing that I have learned is that diet can affect these symptoms.  I think what is wrong with me is the way that my body manages seretonin levels.  I truly believe that it lead to me being overweight and to my seizures.  When I take prozac or diet pills my body and mind (memory specifically) functions so much better than without the drugs.  I have determined that I self medicate when I don't have these drugs with high carb foods - because they produce insulin in our system and the byproduct of insulin breaking down is seretonin.

15 years deja vu and seizure free.  I wish you well and hope this helps someone get treatment before their deja vu becomes seizures. 

Re: deja vu

Hello. I just want to say thank you for your comments. I know this was posted quite a while ago and I did not respond at the time. This is because of my inability to deal with my epilepsy. I often read these responses that were left for me and it really helps me to feel as though I am not alone, so thank you.

Re: deja vu

I have been doing a bit of research on SPS after a friend (clinical educated) suggested I may have it and recommended I look up this site. I found your article very interesting as I have been experiencing some of the same sickning deja vu syptoms. It has been going on for at least 10 years now and I have finally desided to do something about it. (or given in I say) I consider myself a strong and healthy person and always told myself this will go away, you will grow out of it, it will be fine, but I was wrong it seem to be getting a little bit worse.

 When my deja vu occurs I experience audio and visual haluscinations accompanied by hot flushes and tingling mostly in my feet and legs I stiffen up and hold my breath for the length of time, and have a sickning feeling start at the base of my stomach and rise up into my throat. This is then followed by going completely white and a short time of complete confusion. It last a short period of time approximately 2 minutes and takes about 5 minutes to get over it and then im back to normal.

An example of a recent deja vu happend about a fortnight ago. 2 collegues were having a conversation and all of a sudden every word that come out of their mouth I knew they were going to say and feel as though I had heard it all before. Background noises seem to fade away and the peoples voices become centre of attention and very clear and slow. Straight away the hotflushes, stomache ache and stiffness start and I have to remove myself from the area to calm down. (through out I am conscious and aware of my surroundings but feel detached and overwhelmed with sickness) Another person saw me and I tried to explain what had happened but struggled to make full sentences and could not remember the names of the 2 collegues who were having the conversation and whom are my friends that I have worked with for close to 2 years.

 Following along with conversations be it involving me or not is a very common experience of mine. This sounds silly but im going to mention it aswell that it happens with tv and songs too. People know the words to songs and sing along to them thats normal however I have even had deja vu's with music were following along with it all of a sudden becomes different, the words become clear, detailed and slow but feel foriegn at the same time, and yes on comes the hotflushes etc. quickly I shut it off and try to nurse myself back. (Its so hard to explain and even listening to myself it sounds crazy) 

 Not just voises occur but visual senes aswell. (like a daydream) Something seems to trigger an episode, I am yet to figure out what, and I will suddenly see a scenario of people and places which is again accompanied by the hotflushes etc. They are a hand full of the same stories again and again and are quite detailed but as soon as its over I cant remember what it was.

In the beginning I used to try and follow along with the voises and senes in my head thinking I was an amature phsychic and simply needed to fine tune my gift. LOL. At first the sickening feeling wasnt so strong but has developed into much more intenser feelings and instead of trying to make it last longer and trying to control its direction I simply want it to stop and try to turn it off. 

 I am struggling to find triggers. There might not even be any it could be coincidense that the phone rang just as a deja vu started and wasnt actually the cause of the deja vu. I beleive I have eliminated other possible causes such as blood sugar levels, tiredness, temperature, and hormones because they are so random and occur with so many different environmental factors. I can go months without having deja vu but typically once I have 1 I will have 4 to 6 per day for about 3 to 4 days straight and it will go away again for so long, then come back and go away and come back etc. There doesnt seem to be a time of day that they occur most, and I have been woken up from sleep with it too. It is very random but occurs enough that I want to do something about it.

 No one in my family suffers from epilepsy or related conditions. One thought is I did get hit in the head with a baseball bat as a kid and taken to hospital with severe concussion, maybe the head traumer has something to do with it? I have seen a GP who said very few words but referred me to a nuerologist who I am yet to see. Looking forward to some answers.

Re: deja vu

I experiences are very similar to yours Iand no one has ever given me a correct diagnoses.

Re: deja vu

Wow, I so glad I found this site.  I have for many years completely kept this whole ordeal to myself.  The only triggers I have found seem to be stress related.  Being that when I feel worried or confused about my future direction the Deju Vu's/Seizures/Episodes seem to happen more often.  I guess I will share my story....

Mine started back in 1999/2000 time era.  My marker for the start of these symtoms was probably one month or so after watching the movie "The Matrix".  I was about 27 years old at the time.  I get the same familiar "feeling" of being pulled into memory/dream of someone familiar that lasts maybe 5 to 10 seconds which quickly fades away.  Then my stomach feels upset with then an overall feeling of confusion and lack of ability to recall the "vision".  I have a smell in my nose of some other environment that usually goes along with it.  They have really never changed in intensity over all these (11 or so) years.  I sometimes go 3 to 4 months with nothing and all of a sudden I will have one to two of them in a week.  Never more than 1 per day most with 2x per week max.

 I went in at the start and was diagnosed with simple partial complex seizures and put on Tegretol XR tabs which made me very sleepy.  Took them for about 4 to 5 months and stopped.  My doctor told me to be careful about who I tell about this condition aka DMV etc.  Since then I never bought up this condition to any other health professionals.  Kinda of turned my back on it.

 They have never happened while driving or operating any kind of machinery or motor vehicles.  In fact, they only seem to happen when I'm sitting down.  From reading some of your posts a few of you have had these seizure's get worse?  I feel for you and understand a little the predicament we face.  Anywho, thanks for listening and look forward to meeting new people and learning more from this site.

Re: deja vu

I just want to say thank you for posting about your experiences with deja vu. I have to say I have never experienced the metallic taste but after reading this site I feel that I am coming to the realization that on days that I do have deja vu I may experience some sound hallucinations. I get them at work sometimes, I work in retail, and don't realize it. Normally ill go over to another associate and ask if they hear "that", they normally reply, "hear what" and I just chalk it up to it just being in my head. Honestly I use to think I was crazy. No seizures ever follow but through out the span of a few hours that deja vu feeling does linger but I just try to ignore it until it passes because I don't want to be distracted from work. So thanks again for sharing, next time it happens I will try to pay attention so I can share it with my dr and continue my almost impossible hunt for knowing my triggers!

Thanks!
-sarah

Re: deja vu

Just wanted to personally thank you for sharing your experience.  Had I not stumbled across it doing research for some symptoms I was having I may not be alive.  Because of your willingness to share your auras I was able to discover the auras I was feeling was not just me being crazy and it prompted me to seek my doctor and find out I had a walnut sized tumor in my amygdala.  Had I not seen that others had been through similar experiences I would have been to leary to tell anyone about my strange deja vu dreams with smells.  Thanks again - I hope all is well with you. 

Re: deja vu

Hello and thanks for your post!

I DO have Deja Vu's right before I have a seizure but they are not as intense as the ones that you described.  My Epileptoligist (doctor who specializes in Epilepsy) told me that usually Deja Vu's come from the Right Temporal Lobe.  If you are currently taking medication for your seizures, it's not working!  My advice is to revisit your meds and try another as YES, your right, Deja vu's are small seizures and if not treated with the right meds will lead to larger, more dangerous ones.  I just spent a week in the hospital on EEG monitoring and that may be a really good idea for you!!!  My doctors were trying to see if they could figure out where my seizures were coming from because if I do have Right Temporal Lobe seizures then I may be a candidate for surgery.  The reason I mention this is because while I was off of all of my medications in the hospital, I was having Deja Vu's CONSTANTLY.  It was horrible and as soon as I got back on my Vimpat, they went away!!!  Good luck to you!!

Re: deja vu

I have similar but slightly different episodes. I have found many triggers for them, I have them while in the shower, while picking up my cat, while looking up at a ceiling fan, and one time while I was turning on a light (that flickers). Each episode is different, and not necessarily triggered by what's listed. It starts out with a weird feeling inside, a rush of deja vu that's intense (its like controlled thoughts I can't control- even if I put my hands over my eyes). the deja vu sometimes can be about dreams I've had, old memories, and just regular deja vu. I compare it to putting a bunch of random( but somehow connected) pictures in a book, and flipping the pages fast. Also, if people are talking it's like I can almost know what they are going to say. I am not quite sure how long they last but afterwards, sometimes (I have been told) that I twitch softly.

I normally will go to sleep after with a headache, and very seldom I have to either vomit or... well you know use the restroom. Last year I was sitting in class (I'm in college) and I had one. I went back later that day to review over what we did in class and my handwriting was unreadable where I had my episode. I can't remember things from it, the reason I know exactly what happens is because I've had so many I tell myself to remember, or I will write it down when I wake up (if I go to sleep). My doctor insisted that it was just migraines, but I have a hard time believing that a person can have 4-6 migraines in one day. I have been episode free for about 1 month maybe 2. They come randomly also. I have not been diagnosed with anything more than migraines. I keep thinking I am crazy because... well this is not what I see as a migraine. I've done some research- and according to a scholarly article- they aren't migraines. But, I am no doctor I just have my own opinion of it..... the thing that I think separates the episodes from a migraine specifically is the CRAZY DEJA VU. it's sooo hard to explain like you said!

Re: deja vu

I haven't found any descriptions that sound much like my own experiances. mine start with a kind of dreamy drugged up felling  and when Iam with a group of people I know exectly what they are going to do and say before it happens, it is downright freaky. I used to think it was kind of cool. It just dosent sound like the deja vues that I see here. For lthe last 1 or 2 years I have had another type where sounds and voices were distant and dreamy and then before my first "big one" they were accompanied by a feeling of intense fear. Something was wrong but I had no clue what!. then one day I regain consciousness in a hospital bed and was told that I had been having continuous  complex partial seizures and came close to death. they told me that I completely stopped breathing for 5 to 7 minutes. some one in a prior post said that deja vues can lead to a more serious event, I am  wlalking evidence that it is true.

 

 

 

Re: deja vu

Hi there. My name is Patricia & my husband has experienced almost exactly what you are describing, for a few years now. They started about 5 years ago. They would happen in the morning usually and when he tried to explain to me what it was he was experiencing, he had a hard time. He said that it was like the door to his dream world was kicked wide open..he could never put his finger on it, but discribedd it as a dream-like state, or an intense memory of a dream, that he's not sure when or if he's ever had. He recognizes the feeling/place/event, but cannot figure out from where (deja vu). He also says that he feels like he knows what a person is going to say or do, before they say or so it, like He knows what will happen next. He breaks into immediate and intense sweats, feels overwhelmed, but maintains consciousness and can usually interact in public or drive while having them. Sometimes he gets dizzy. These episodes always happened within 2 hours of waking up, lasted about 30 seconds to a minute, and usually only happened once about every couple weeks. At one point they became more frequent, and then less frequent. After he described these things to me, I googled "dreaming while awake", because he described them as having a dream like quality. I found something similar, called Hipnagogic Hallucinations (spelled wrong). Which is basically when your dream brain doesn't shut off when you wake up. I didn't even know that these type of seizures existed. In the last 2 year or so, it's probably only happened to him aprox 5 times. He's never had it happen more than once in a day.
NOW, the reason I was compelled to reply to your post is this: In November he had a clonic-tonic (aka grand mal) seizure while sleeping. He has never had a seizure before. It was a rather intense & long seizure. I called 911, they eventually got him into the ambulance, took him to the ER. He didn't "come to" for at least an hour after the seizure. About an hour and half after we got to the ER, he had a second seizure. I knew, at that moment, that something was wrong, that life would be different for us... To say the least, I was scared shitless.
He was referred to an epilepsy specialist & put on anti-seizure meds. After talking with the specialist, we realized that he'd been having small seizures for a few years now. That deja vu/dream like feeling he had, and that you are having, are called Simple-Partial Seizures.
He had another grand mal seizure in February. He experienced a Simple-Partial seizure state about an hour & a half before the bigger seizure. They said it was due to his medication levels not being high enough. His med has been upped about 4 times. His levels are sill not as high as they need to be. He's not had a seizure since.
It is VERY IMPORTANT that you get a second opinion. Some people only have Simple-Partial Seizures, other people have more than one type of seizures. I hope that you will only have to deal with this one type. But, my husband's Simple-Partial Seizures were happening for years before he began having full-fledged Grand Mal seizures. TELL YOUR FUCK DOCTOR TO FUCK OFF.

Re: deja vu

Aside from feeling as if I know what people will say/do next, this sounds exactly like me. My SPS happened for nearly four years before progressing to 2 consecutive grand mal seizures earlier this month. I did not learn until my hospital stay that these deja vu spells were SPS. I was frightened to learn that I have epilepsy, but so comforted to know that there are other people who know how crazy this deja vu feeling is. Before my grand-mal seizures I only briefly tried to explain these episodes to my girlfriend once or twice (she's always curious when I enter the bathroom to take a shower and then exit after having vomited, barely able to speak to her...go figure), and I felt totally insane.

Re: deja vu

hey, this is making me a bit nervous lol. I just had a really bad episode of deja vu so bad, its led me to this website. Mine are no where near as bad but i think when i was around 13-14 i used to hear whispering of a familiar conversation but i couldn't grasp the topic or any words. this happened a few times a year but was very mild so I ignored it. recently however probably around 3-5 times a year I'll get a severe feeling of deja vu, something to do with a video game or something and during this period of around 20-30 seconds I'll try to grasp it and then it'll disappear as quick as it came. Thats happend for around the last 2-3 years (im 25 now) but the lat few including todays has come with a strong metallic taste and a heaviness on the right side of my face and behind my ear. I'm hoping its nothing but it really is starting to bug me and really just want to make sure it wont develop into anything nasty.
thankyou
felicity

Re: deja vu

When I have my auras their always deja vu/dream like. its like a dream ive had before but dont remember when or if i had it. There is a sense of fear and a rising in my stomach. I had one while listening to music and had to turn music down seemed like it was intensifying the aura. When I actually have a grand mal seizure I have the same feeling but there is always a little creature (i have the feeling like its god but im an atheist weird). The little creature is showing me my town but its destroyed cant remember what is said but it seems like its the answer to everything if i could only remember what is said i could change the world. Ive had the latter at least 3 times. Ive also had a weird feeling of being parrallel to the ground one time while walking and having an aura.

Who else remembers their auras that imediatley proceed your grand mals?

Who else have "hallucinations" of religious aspects?

Re: deja vu

i just randomly remember some stupid video game from 20 yrs ago that i forgot about. I cant remember the name of it outside of a seizure, but when the seizure comes around, i would be able to tell you in detail.

Re: deja vu

WOW. Thank you to everyone who has shared your stories! It has been nearly 4 years since I wrote this. It has been 3 years since I have been on this site. I have been in such huge denail about  my epilepsy. I took my diagnosis and decided I was not going to "live up to it".

I was diagnosed with depression at 13, and I made a point to "live up to it" and wasted a whole lot of time being miserable. Plus, I was 13. Who isn't miserable? And naive? So, when I was diagnosed with epilepsy, I reflected back to that and decided that I did not want to repeat old patterns. It's stupid, really.  Somehow I thought it was something I could control by positive thinking and avoiding triggers that lowered my seizure threshold. Seemed like such a better choice than taking the pills and giving in. Those of you  who are on medication, please do not take offense to that. I am just being honest, and I know I am wrong.  I did not drive for 14 months after my tonic-clonic seizure, and allowed additional time for my SPS's as well.  I feel like I followed every rule in the book, other than taking medication. I really wanted to know how huge of a presence epilpesy was in my life. I never had another tonic- clonic after that first one. And my deja vu's seemed mild in comparison to before. As if I was a dam that had let loose and now had some room. Now I realize that a dam is always a dam, and will fill back up, but more on that later...

 My husband and I desperately wanted to try for a child, so I really started taking good care of myself and my SPS's seemed to have stopped. This fueled my adversity to medication. Also, I really wanted to have as natural of a pregnancy as possible.  I became pregnant in early 2011 and now have an almost 2 year old.  Luckily my pregnancy was seizure free and I did not need to start medication during it.  I was able to breastfeed without the concern of meds and I feel really fortunate. I made a promise to myself that the first sign of seizure activity and I was gong on meds. I just will not gamble with my child's safety.  

 Which brings me to today. Having a toddler and being maxxed out has put me into dangerous territory. I had a seizure today, and I am still trying to figure out exactly what kind.  I know it was s SPS, but no deja vu and then I think it generalized because I lost consciosness for about 5-10 secinds. (My husband was there, luckily my son was napping).   Details I suppose are not important, just explaing what has brought me here after 3 years.

 

I really just wanted to thank everyone for sharing.   It sounds as though it has led some people closer to answers and for that, I am extremely grateful! And to Joelle... who discovered the walnut sized tumor after feeling validation about her deja vu's- there are no words. I am so glad for you and thank you so much as well. You have also given my bottled up emotions validation. I NEED to take care of myself. Enough is enough. 

 

I am so tired from this day.  Much love.

 

 

Re: deja vu

I'm not going to jump on you about not taking meds. When you mentioned it, it reminded me of college when I felt so doped up that I couldn't pay attention during lectures (and I nearly flunked out of college). I coped by not taking drugs prior to exams, but I had a seizure on the day after an exam. During my first two years of college, my doctor wanted me to stay with the drugs that I was taking because they 'worked' (ie I didn't seem to be having any grand mal seizures when I was taking the medicine). It wasn't until I had to take a year off from college that I went to see another doctor and they put me on a different medication. He put me on something different and I was finally able to drive again and finish school.

My advice is to keep asking your doctor if there are any new meds and to periodically get second opinions. I don't know if that will work for you but it worked for me. The only reason that I make a post here is that I get the deja vu as well. Most of the time, it is a warning that I am about to have a seizure and I know to stop what I am doing. Because the deja vu serves as an effective warning (and because my current doctor seems to trust me, which is the only reason that I mention compliance), he lets me drive. For me, I'm really thankful that I get the deja vu.

Re: deja vu

I can tell about mine deja vu expirience.

It's happening with me rarely,but when it happens this means will be seizure. I have different types of seizures. Deja vu feeling may become generalized seizure with or not consciousness lose. Deja vu feeling may come in any time-I can't control it!