Deja vu and partial seizures

Deja Vu attacks - Intro

For the majority of my life (I am 34 at the time of writing this hub) I have suffered from what I have always called "Deja Vu attacks". Everyone experiences deja vu at some point in their lives, but I knew I was experiencing it a lot more, and a lot different. I also had issues with my sleep most of my life having very vivid, real, movie-like dreams that I would continue having after I woke up.

It's really quite amazing that I made it to age 33 without knowing what was going on with me. The attacks would come and go in clusters, and I could easily go months without having anything happen, completely forgetting about the problem. Then, out of the blue it would seem, it would start all over again. To me it always felt as though I had dreamt the next day, in sequences and in great detail. The attacks were always full of deja vu and feelings as though every single thing I was seeing/hearing and experiencing around me had happened already, I had dreamt it.

I knew this feeling of deja vu wasn't "normal" but I could not bring myself to see a doctor in fear of not being able to explain it correctly and possibly being sent to the Psych Ward! I tried to explain it to my family and friends to the best of my ability but no one could understand it. Eventually I would just say I was psychic and dreamt the next day in sequences. But it still never made sense. Why would I dream say - going to the bathroom? Putting on makeup? A certain commercial on the TV? A game I would play? None of it made any sense, and none of it was "important". Shouldn't I be dreaming of huge things to come, maybe a natural disaster or something instead?

I needed to make sense of this.


The attacks explained

Anything can trigger it on one of those "bad" days. I could sit down in front of the TV or computer, or simply go to the bathroom or put on my makeup. Or maybe it is something that someone says to me. It just happens out of the blue it seems when I have woken up "wrong". I am foggy headed, don't feel like I have slept at all, I am confused and just feel strange. I attempt to get going with my morning either aware something will happen, or just completely unaware. This has happened for so many years I can sometimes tell when I'm going to have a bad day, and can prepare, but it seems for the most part I am just trying to ignore how I'm feeling and trying to wake up and do "normal" things that people do in the morning.

Then one will hit and it's hitting HARD and fast. It's a sudden intense surge that goes through my entire body, and the feeling of deja vu hits at the same time. I am all the sudden thrown out of this reality and put back into what feels like a dream, a dream I have already dreamt. Everything starts playing out "like it has before". Everything that is happening has "happened before". I have dreamt this, all of this! And it is happening again. The surge is so strong I pretty much go into panic mode immediately, my body feels like it is going into shock, my limbs are now tingling and feeling sick. I am not seeing this reality anymore, I am only seeing "the dream". I try to stop it by distracting myself quickly before it gets worse. But distractions never work, the attack continues to escilate. I am breathing heavy, my heart is pounding out of my chest and my entire body is feeling sick. I start to feel like I am going to pass out. The "dream" I am seeing is SO vivid and real. I am living it. There are so many little details that I can see so clearly. But I am scared! So very, very scared now. What is happening, this isn't real, I just want to go back to reality now. I start fighting to get back but I can't. I only feel the attack escilating and I start to feel like I am going to pass out. My eyes are going dark, everything I am hearing is very muffled or far away, I feel like I am going to throw up, I need to go lay down. So I need to get down and that's all I know at this point. I am going to fall if I don't put myself down SOMEWHERE now! If there is no bed or couch anywhere near me at the time I will put myself on the floor on my knees and bend over so my face is in the floor. If I am able to get on my bed I will do that but once I get to this point I cannot remember anything afterwards. I only remember being out of it, I do not remember coming out of it...

I am breathing heavy but I'm starting to get my hearing back and my eyesight back. It's like I am waking up from a horrible car crash or something. I have no idea what just happened! All the images and everything I was seeing SO clearly, so detailed, are now fading and I am having a hard time remember anything. This is when I get confused, and very upset/angry. My thoughts are going around in circles trying to remember what just happened, and what was I just seeing that was SO clear? And why can't I see it anymore? Major confusion. I will often times just start to cry. I get angry a lot as well because I just cannot understand why this happened, what the point of it was, and why can't I remember anything?

It can take me 30 minutes or so sometimes to come out of one of these "bad" attacks. During this time I will not be able to talk very well, I will stutter and won't be able to find my words. I will stay very still on my bed, or floor!! and wait until I feel I can get up.

My emotions are pretty much out of control now, but eventually I do get up and this is when I call or email a friend or family member who knows about this problem of mine and I let them know it's happening again. I can now prepare myself for the next attacks to come. I pretty much know that I should not in any case at all leave my house today! Even though I don't know WHAT is going on with me, I just know NOT TO LEAVE!

I must ride out the other attacks at home and not in the middle of a busy intersection :) Because this is just the beginning of many other attacks to come for me. The next one shouldn't be as bad but will still be horrible. By mid afternoon the attacks should be fairly easy to manage compared to the bigger ones. My entire day is now ruined and I am home suffering from these mysterious attacks until they have run their course and I can go back to normality!

By evening I may just be having small "brain zaps" of deja vu here and there. I'm quite exhausted now and just want to go back to sleep but I am also afraid to sleep because I am convinced these attacks are starting in my sleep. Since I always wake up "wrong" after a night of vivid dreams, that feel like these attacks...

The smaller attacks can continue into the second and maybe even third day. I may start to develop a bad headache and I definitely develop a major stuttering problem and just cannot find the right words when talking.

During a small or big attack I cannot communicate with anyone and I have noticed sometimes my eyes are darting back and forth, at least that is what it feels like. I have always run to hide when one is hitting hard, for some reason I just need to run. Of course running away from it never helps! But since I never knew what was really going on I had to hide it from anyone that was around that day... So no one has really been able to see what I am doing during one of these attacks. During the smaller attacks I can stay put but I start yelling "OH MY GOD! THIS HAS HAPPENED BEFORE!" or something like that :p

I have also noticed that I tend to say the same word/words over and over again in the beginning stages of the attack, when I am still able to talk. Sometimes it is just "woa" a million times, or "what?" or continuously saying the same swear word. Then I believe I just go quiet.

It is still a mystery to me as to what exactly I am doing during these bigger attacks.

Some of my small partial seizures

Smells and Tastes

Every now and then I will be hit with the most awful smell in the world. The only way I've been able to describe it to people is "burning poop!". It really is the most horrid smell in the world. I'll go around trying to find it's source but all the sudden it's gone.

I also get strange tastes every now and then. Once I had the taste of a tangerine flow into my mouth. It was wonderful!! But, there were no tangerines around and I had not recently eaten one... So it was also a bit freaky.

I notice that these phantom smells and tastes happen a lot when I'm having a lot of seizures. I will take this as a warning sometimes as well that a seizure may happen.

My childhood

My childhood was full of sleeping issues that most people would say were "normal" for any child to experience. For me, however, I knew something was off.

I had extreme nightmares and very real/vivid dreams that were movie-like, lengthy and detailed. I would sleep walk and also act out my dreams in my sleep. I would talk out my dreams as well. Dreams have always played a powerful role in my life, being very much a part of my waking life as well. It has always been a challenge for me to come out of the dreams when I awake in the morning and just go about my day, because for me I am either still feeling the dream or still seeing the dream. They can affect me for the whole next day.

There were times when I was young where I would do strange things in my sleep that I don't remember doing, such as - collecting things from my room and lining them up on my bed, waking up with my pajama's on inside out or backwards, waking up with my head at the foot of my bed instead of my feet, lashing out in my sleep and actually hurting members of my family because of a very vivid nightmare I was having, having conversations with my family in my sleep and not remembering it, and the one I'm sorry for most - scaring the living daylights out of my dad by sleepwalking into the living room and just standing there in the dark as he was reading on the couch :)

Sure all of these things could be "normal" for a child. Who doesn't have nightmares?! The problem with me was I was plagued by these dreams. I didn't tell anyone but my dreams were so intense and vivid I had a hard time figuring out if they were real or not. I feared sleeping, and would often end up in my mom's bed.

As for my deja vu attacks happening when I was a child, I only remember one instance when it happened. (My memory is not great so maybe there were more times?) I was very sick and in my mom's bed, where I would go every time I was sick. It was dark and the radio was on. I think I must have had a bad fever because I felt down-right delerious! I remember that everything all the sudden started to feel very strange, the radio started to sound "wrong" and my heart rate and breathing started to get faster. The feeling that washed over me is the same feeling I still have to this day with these attacks. At that time I was so sick I couldn't really distinguish if it was just the fever, or something else. I kept it to myself. But the way everything started to feel, and the way the radio started to sound is SO familiar to what I experience still.

As a child I was very sick a lot with throat infections and ear infections. I remember always being on some sort of antibiotic for either my throat or ears. I had plenty of fever's and missed a lot of school but I survived. These infections continued to happen into my teen years when all the sudden they just stopped.

My teenage years

This is when it got really bad.

I do not remember what age I was exactly when I started to get these attacks quite frequently, but I remember I was in high school and we had gotten the internet recently! It was so new and exciting! I have always suffered from social issues so for me the internet meant being social! I was more comfortable chatting online, than I was chatting in person with someone. (still am lol) So I would literally stay up till about 4am on a school night chatting! I would only get about 2 or 3 hours of sleep before I had to go to school. This is when I remember the attacks being very bad, but of course my memory is not very good so don't take my word for it!

I would go to school in a fog, and I just remember sitting in class and an attack hitting me out of the blue. I must have been really good at hiding it because no one seemed to notice. There was one time I was going outside with my friends and one hit me really bad, and I remember saying to them "WOA! I dreamt this! Major deja vu!". The conversation would never really go anywhere and I think I pretty much got ignored other than the fact all my friends started thinking I was psychic ;)

At the time I had no idea that lack of sleep was causing this. So I continued to stay up all night chatting with strangers on the internet, so excited and so happy, yet suffering big time during the days.

My adult years

These attacks would still come in clusters every now and then exactly like my teenage years but now I was starting to try to figure out why (on my own of course without seeing a doctor!). Searching on the internet was not giving me any answers, but of course I was searching for the wrong things, like - vivid dreams, or waking dreams, or psychic dreams. I had no clue what to search for, so I was not getting any answers. It always felt like a psychic thing, and no doctor would be able to "help" with that! I was just dreaming the next day, or days.

Although I believed I was just being psychic, no matter how many times I searched for "psychic dreams" it just didn't fit. It wasn't exactly right, at all! It was only in 2011 when I did a search that finally did make sense. I searched for something along the lines of "horrible deja vu attacks". And that is when I decided to see a doctor. Scroll down to the process of diagnosing to read more!

Sleep Issues

Sleep issues have plagued me throughout my entire life. I can remember certain dreams from when I was maybe 2 or 3 years old. And these dreams are not "normal" dreams. These are like my daytime attacks, only happening in my sleep. I have been paying very close attention to these problems for the past year and have found out some amazing things! I've always known that my sleep issues and my daytime attacks were related, somehow! I knew that if I was going to have a bad day full of attacks it would start in my sleep and I would wake up feeling funny. I have kept a diary writing down every attack and strange sleep i've had for months now and without that I probably wouldn't have realized all of these things!

I also suffer from what I believe is sleep paralysis quite often. When I am waking up in the morning sometimes I cannot move, and my eyes will not open, and I am dreaming a very vivid dream at the same time. It can take me quite a while to get up, and when I do I usually stumble about for a while after. It can take hours before I feel more "normal". My eyes may not want to open fully for the majority of the morning and it feels as if I havn't slept in days. On these days I will experience many "brain zaps" or "dream flashbacks". I am being thrown back into one of the dreams I was having as I was sleeping or trying to wake up. They are like these deja vu attacks but different in that there may not be as much of the deja vu, but more just being back in and experiencing the dream again, during my waking hours.

The dreams I have feel like my daytime seizures a lot and these happen all through the night, so I usually wake up in the morning feeling awful like I havn't slept in forever.

I often wake up with a jolt many times during the night as well from a "dream". And a lot of the time when I am having one of these dreams as I am waking up it will continue on during the morning/day. I will continue to have "dream flashbacks" until I go back to sleep that night sometimes.

The (not so pleasant) process of diagnosing

Trying to explain this to anyone, let alone a doctor, is one of the scariest things for me to try and attempt. How in the world am I going to explain this when I can't even make sense of it!? When I can't even remember all of it? But most importantly, how am I going to explain this to a doctor without sounding insane? That question was what kept me from ever trying to get help for this problem.

In the summer of 2011 the attacks started up real bad, to the point where they were still happening a week later. That was the first time I can remember it ever lasting that long. Usually the "aftershocks' are over by the third day. I don't think I ever remember them still happening in the fourth even, but this time they were still happening a week later. Had something changed? Had something gotten worse? I couldn't take it anymore and I finally decided to take this problem to a doctor putting all fears aside (or trying to!).

I put myself in the ER during this week of non stop deja vu attacks after doing much research on the internet. I came upon many websites about seizures and these seizures sounded exactly like what I had been going through. A huge, bright lightbulb went off in my head!! But the doubt also came alone with it. I can't be having seizures, that is just too strange. No one in my family has seizures, and wait, aren't seizures a physical thing? I am not convulsing! But wait, these partial seizures sound exactly like what I am going through. Can you have just these kind of seizures without the convulsing kind? A million other questions went through my head, but since these partial seizures sounded so much like me, I took that to the ER with me hoping for answers.

And... my fears came true, they sent me to a psychologist... Hey at least I wasn't put into a straight jacket right away! But the doctor who saw me claimed I was "hyperventilating"? And that was it and I should see a psychologist for help with my anxiety...

I WAS NOT IMPRESSED!

But if this was how this process had to start, I would try and cooperate..
I didn't know if I was crazy at this point, or even had something like schizophrenia, but the feeling I get with these attacks are always the same and feel a certain way and it's almost electrical if that makes any sense. Like a part of my brain has gone completely off it's course and things are happening that shouldn't be happening. It feels like a "mistake" but I am aware of it. And I always could tell where my real reality was, and I always tried to get back to it. I knew this was wrong and knew what was right but hey, ok, I'll see your psychologist...

Well, the psychologist didn't help. He specialized in feelings and emotions which, yes, get very messed up during and after these attacks but he couldn't figure out why I was having the attacks. He wanted to find something very traumatic in my childhood to blame them on but couldn't. He also wanted to say I had pseudo seizures, which are non epileptic seizures, without me even seeing another doctor first.

The more I read online about these partial seizures the more everything started to fit into place and make sense to me. I was excited to say the least. But also discouraged, already, from being sent to a psychologist only so far. So I went to my family doctor with this and let it all out on him to see what he would say. He said it sounded like seizures to him! And wanted to test out our theory by trying an anti seizure medication on me called Carbamazepine.

That drug was not easy for me to get on and I had to stay at a low dose for a very long time. It upset my stomach terribly and I was gagging every few minutes just out of the blue. Also I got the spins big time shortly after taking my first daily dosage. It felt like my brain did a flop! And I actually had a hard time staying up on my feet. But, the good thing is, is I noticed very quickly that my seizures were changing. They were getting shorter and less intense, like they were try to start but would hit a brick wall immediately every time. It was amazing. But I did have problems stomaching the stuff, and every time I tried to increase it or missed a dose I would end up back in the ER with major seizures. And every doctor I saw there said to me "That doesn't sound like seizures to me! But I'm no specialist!" and literally referred me to the same psychologist every time I went in there.

(screaming on the inside)

Eventually my family doctor took me seriously enough to get me an appointment for an EEG. YAY! I felt I was finally on the right track. But that EEG gave normal results, discouraging me even more from ever finding out the problem. Then my doc put me on a waiting list to see an epilepsy specialist at the hospital. Epilepsy eh? I can't have epilepsy, no one in my family does, why would I have it?

I think it was a 7 month wait to see that neurologist... In the mean time I got another EEG, a sleep deprived one this time, which was also normal I think, and continued trying to stomach the carbamazepine. The side effects were awful with me, but!, it was changing things! My attacks were so different, so much shorter, never getting to the point where I'm blacking out, and I just felt "different". So we kept on the medication.

Months later... Still not knowing exactly what was going on with me, still doubting if I was really having seizures or if I was just insane, I finally got in to see the neurologist.

Firstly he put me on a different type of carbamazepine that didn't make me so sick! YAY for that! And secondly, he said I wasn't crazy. I nearly hugged him. It was 9 months now of wondering and trying to find help, and answers! 9 long months, and a specialist told me I wasn't crazy, and he heard my "story" a million times before. Really? There are other people like me out there? No way! But wait, I can't have epilepsy...

I wasn't diagnosed at that time, we needed to do more tests and an MRI. So I had yet another sleep deprived EEG done and got scheduled for an MRI (which I'm still waiting to do at the time of writing this). After this EEG the neurologist sent my family doctor a note stating, for the second time actually, that he believes i have temporal lobe epilepsy.. Did something show up on that last EEG? I was having a lot of "dream flashbacks" that morning, and felt "seizury".

After hearing such mixed messages from the doctors in the ER, from that psychologist, from my family doctor, and from everyone else, I had no idea at this time WHAT to think. Am I having pseudoseizures? Am I insane? Am I just having anxiety? Am I actually having seizures? Do I have epilepsy? Yes, at this time my thoughts were completely jumbled and I was so very confused. Then this neurologist tells me he believes I am having seizures, and I am not crazy. This is the one I chose to listen to :)

11 months later... I am so close to having a diagnosis of temporal lobe epilepsy. My family doctor says the neurologist has been suspecting that in me all along, since my first EEG before I even met him, and that is most likely what I have. After all of this, after not knowing my whole life, I may have finally found my answer. I think I will get my official diagnosis after my MRI even if that doesn't show anything, even if my EEG's are all normal, the neurologist has "heard my story a million times" and can diagnose me anyway.

Researching temporal lobe epilepsy online only makes my insvisible lightbulb above my head shine even brighter! It makes so much sense! I am experiencing simple and complex partial seizures, along with seizures in my sleep but I am still unaware of what kind of seizures those are. And thinking back on my entire life, I have had these sleep problems since I was born I think! Did it all start in my sleep? And one day decide to show it's ugly head during daylight hours? That is what it feels like to me, but more answers will come, eventually.

For now, and probably for the rest of my life, I just need to find the right medication and the right dose for me. If I truly am going to be diagnosed with temporal lobe epilepsy I believe I will be in denial for about 33 years... Not once during my life with this did I ever suspect epilepsy, for 33 years. I can only imagine I will be in denial a long time. Actually, shock is the word I think I'll use. Extreme shock! But to have an answer, even if I can't accept it or believe it! is what I've wanted.

But what is happening in my sleep?

Realizing all the sleep issues I actually have made me wonder for a while if maybe I just had a sleep disorder, until my doctor told me I'm most likely experiencing seizures in my sleep which makes all the sense in the world to me. It has always been connected, the nighttime dreams and my day time seizures. It all feels the same. But, at the time of writing this, I still don't have an official diagnosis, or more than one diagnosis, for anything. I "probably have temporal lobe epilepsy" and will get that diagnosis, or not, within a few months I am hoping. And if temporal lobe epilepsy can effect your sleep this much then yes, it will make sense. It will really explain a lot, but I do have some unexplained things that my doctor will probably say is because of the seizures as well, like extreme muscle pain in my back or shoulder or neck. What am I doing in my sleep? You know that question may go unanswered for a long time as well unless I can video tape myself with a camera that has night vision on it that I cannot afford so I'll never be able to do it :p

I video taped myself during some naps before with my computer's camera but those sleeps were not messed up like my other ones. The second time I video taped a nap though I saw that I kept waking up during it, sitting up quickly, then going back to sleep. I also notice I am very restless in my sleep and am not completely still for too long. I didn't remember waking up all those times though which was weird. At some points it looks like my mouth is doing something strange as well like puckering up? Tensing up? And staying like that for a while, then I will wake up quickly then go back to sleep quickly. When I eventually do wake up, for real, it is fast. I am up way too fast so it makes me wonder if something is definitely going "wrong" while I am transitioning into waking up... That is the point when the vivid dreams are the strongest, and I either get sleep paralysis then or wake up with a sudden jolt so quickly I don't even remember getting out of bed. And if that happens the dream flashbacks usually happen a lot as well.

I am on a list, and a long list at that!, for a sleep study. It could take a few years though, yes you heard me, a few years... but this is something I've wanted to do for as long as I could remember! So I am happy to finally be on that list! And more questions will be answered after that hopefully, or else I am just having seizures in my sleep....

I started making youtube videos when I started to seek answers

Youtube is a great outlet for me

It was hard at first to actually make videos about this, but I realized soon after that I felt better getting this out, even if it was to a bunch of strangers on youtube who would think I was crazy. At this point in my life I had to get this problem out. I was no longer going to hide it.

I have made quite a few videos for youtube since I started in 2011 on this subject. My own journey documented for the world to see. Why did I want to do this? It's easy! There could be so many other people out there having these seizures without even knowing they're seizures! Possibly having epilepsy without even knowing it or treating it! Not knowing which direction to go in for help! I only hope to help others as well as myself through this whole process, and to have an outlet to talk about this freely and openly.

Now that I have gotten this far I am so glad I started making the videos when I did. I am glad I explored so many area's and so many possible reasons that I'm sure many other people are doing right this moment. If I can help even just one person I will be happy. And to finally have a reason behind all of this has already taken a lot of weight off my shoulders. To know that I am not crazy is so much relief in itself! :p To know that I have neurological problems after all these years, it's almost like I can breath for the first time ever. And I am no longer scared to mention this to anyone!

Do you think your having seizures?

I'd say this - do not see a psychologist first, get to the root of the problem. If it's epilepsy you need a neurologist who specializes in that. Go to a trustworthy doctor, someone who knows you or someone you can at least trust. Tell them you believe you are having seizures and you would like to be referred to a neurologist and get testing done like EEG's and MRI's.

Do not "beat around the bush" like I did. I was so lost and didn't have the slightest clue which direction to go in. And that will just confuse you even more. Stay on track and get that neurologist! He/she will be the person to say at least "yes that sounds like seizures" or "no that doesn't sound like seizures" and will at least be able to guide you in the right direction.

In my case, seeing the psychologist first just confused my poor brain even more. If I could do it all over again I would demand a neurologist first. An epilepsy specialist. You will either be diagnosed with that, or sent into another direction for treatment. I felt everyone was playing "head games" with me until I finally saw my own specialist, and it wasn't pleasant.

If you try out seizure meds and they seem to work, you can almost be sure you are having "real" seizures and you do have some sort of seizure disorder. That was the one thing that helped keep me sane when it felt like everyone else wanted to say I had psychological disorders. They would even tell me the medication is only working as a "placebo"!! These are psychologists and ER doctors if you're wondering. But my family doctor had told me that this medication would not work if I wasn't really having seizures, and I still remember that to this day and probably always will, because that is one of the things that kept me going.

I had started seeing another psychologist to assess me for mental illnesses and stuff during all of this, who in the end couldn't figure out what was wrong with me, and claimed my seizures were due to paxil, which is something i've taken for quite a while. But these seizures started way before I started taking paxil. She didn't even speak to my neurologist or family doctor before making that "assumption" so be careful in which route you take or you will also get assumptions thrown at you from every single direction. It was very discouraging for me and I almost didn't want to continue but I really, REALLY, wanted to find out what this was..

Now, after all of this, I have my family doctor and my neurologist working towards helping me and figuring this out. I feel I can trust both of them and will take whatever diagnosis they throw at me.

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