Complex Partial seizures. Deja vu then blackout.

morkys

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My first experience with this was in 2005 on a blisteringly hot summer day. I was working outside on a balcony of a building where we were installing solar panels. I was on a scaffold and all of a sudden, I felt like I was daydreaming un-intentionally. I was remembering or daydreaming without wanting to. It had a deja vu quality to it. I got down off the scaffold and sat down. I went downstairs in the building and had diarhea and I through up. I went back up stairs and drank lots of water. Coworkers and I suspected heat stroke or food poisoning. I worked the rest of the day but didn't do anything significantly physically exerting.

Various times in 2009 -2011 I felt deja vu while cycling or driving. Instead of passing out, the feeling increased to a great degree and became uncomfortable. I did not pass out or black out.

In Feb or March 2011 I was in the shower and anxious thinking about rushing to a city council meeting, and I was also under other stress financially etc. I felt a strong deja vu and woke up moments later at the bottom of the shower. Scraped chest and fat lip. I broke off the diverter valve (the knob you pull out to divert water from the bath tap to the shower head).

March 29 2012 I was at work standing at a counter looking at some paperwork and had the deja vu feeling and woke up moments later on the floor. I hit my head on a filing cabinet.

One day later that summer I was sitting on the toilet. Felt the feeling of deja vu. Got off the toilet and sat against the wall. Woke up fallen sideways, glasses fell off.

Aug 25 at around 10-11 am I was sitting on the toilet and felt the deja vu. Went to get up to go lie down and moments later I woke up with bent scratched glasses and a black eye.

Possible episode Dec 21 leaning back in a chair.

So far, all tests regarding heart are fine. All EEG and MRI, CAT scan etc are negative for eplilepsy. The neurologist and I both feel that, despite negative tests, I probably have eplilepsy and am experiencing Complex Partial Seizures.

Going to see family doctor and look into medication. I need to drive and do physical activities at work so it's affecting my life. Not sure what I will do from here on out. Going to look at second opinion and other tests but likely have to seriously consider medication if I want to drive. Either that or significant changes in diet.

Anybody else experience seizures the way I describe? What have you done?
 
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jyearta

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I have déjà uv (simple paritals) a complex partials used to follow.

I have never past out after deja uv. After a complex partial I am left with a horrible feeling of fear.

My seizures are pretty much under control, except for a break through when I loss sleep, stress, infection or if I forget my meds. several times in a roll.
 

morkys

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Thank-you for the feedback. My blackouts have always occured following a deja vu episode. I have never passed out without feeling deja vu. Now, the other way around, the only time I felt deja vu and did not pass out I was cycling or driving, which was before I knew what was going on. Neurologist mentioned that it is possible when you are focussed on doing something, that a seizure may not progress. Not reliably predictable however. I can't recall experiencing or feeling fear. When I wake up after blacking out, I have very little confusion. I know where I am, and I know what time and day it is for the most part and I know what happened. It only takes a few seconds for me to be aware of all these things. The most I am disoriented after coming to following a black out is 5 seconds. I have a memory of the deja vu sometimes on waking. Possibly simple partial, I don't know. When I come to, it feels like I have been napping, like being asleep, but not a deep sleep. I soon realize, oh, I blacked out again.
 
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jyearta

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When you go cycling, do you ear and drink enough?
Fatigue can bring on a seizure, there are more trigger also.
Low blood sugar affects some people.

Do you keep a diary?
 

morkys

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I usually eat enough, but I have only felt the feeling while cycling very recently and I've been a fairly regular cyclist (mountain biker) for years (since 1991). Oh yeah, and I am 42 at the moment. I was supposedly born with a small stomach which is frustrating for cycling (or running). I can't eat too soon before cycling. Although while cycling, I can easily eat a cliff bar (energy bar) or banana etc, energy drink or juice. It is possibly nutrition related. I have changed my diet over the years. I don't think my body like wheat so I don't eat lot's of bread etc. I try to eat mostly oatmeal, rice, pasta etc. More complex carbs.

I also have a slightly peculiar physiology regarding my right ear. My mom went deaf in her right ear. Years ago, an ear doctor said my ear/brain-stem system on the right side was odd. Bare minimum, I know my ears are different. I have at the very least, different frequency response in my right ear vs the left ear, or at the very least, sound is different in one ear vs the other.

Ever since 1996, I occasionally have migraines. I call them vision headaches because there is almost no pain or discomfort, but I slowly lose my vision to a kaleidoscope affect in my vision. I have learned that sometimes I need rest to make it go away, or I can actually deliberately calm down and continue doing things and it goes away. Sometimes even napping doesn't make my vision return. I usually drink water and relax.

I have experienced other symptoms in my life but these are the one's that seem related to or relevant to my situation.

I am a hyper and variably anxious person. I believe I have borderline hyper tension as my blood pressure has measured at the bottom or just below the bottom threshold for high blood pressure. I try to realize what I am doing wrong and correct it. I don't drink often or regularly. I don't smoke regularly (a couple times a year, but I decided to stop for obvious reasons including diagnostic)...and I don't do drugs, take medication or drink caffeine regularly.

It could be related to blood sugar etc, as I often eat sporadically. I am overweight at the moment and recovering from a back injury due to a car accident (lower lumbar) which coincidentally happened a few months after my first blackout. The car accident was not seizure related. I was fully concious the entire time and somebody turned left in front of me at an intersection when I was going through a green light. I locked up the tires and t-boned them. My back is fair but not like it used to be. I have a history of degenerative disc disease.
 
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Nakamova

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Hi morkys, welcome to CWE!

I'm glad your neurologist is willing to consider an epilepsy diagnosis even in the absence of a confirming EEG. Many doctors are unwilling/unable to diagnose on the basis of clinical symptoms alone.

Given that your blood pressure is borderline high, you might want to try taking a magnesium supplement. It can be good for both the brain and the heart.

Best,
Nakamova
 
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Hi,My simple partial seizures involve Deja vu,a rushing feeling,voices and many other weird things and before I was on meds they would then progress to complex partials where I'd wake up on the floor with people all around me or sometimes by myself.I also usually get diarrhea and migraines.
My eegs and MRI scans all came back normal but my nuerologist still diagnosed epilepsy.it was 3 years later and another lot of scans that they actually picked up seizure activity.good luck with it all
 

morkys

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Hi morkys, welcome to CWE!

I'm glad your neurologist is willing to consider an epilepsy diagnosis even in the absence of a confirming EEG. Many doctors are unwilling/unable to diagnose on the basis of clinical symptoms alone.

Given that your blood pressure is borderline high, you might want to try taking a magnesium supplement. It can be good for both the brain and the heart.

Best,
Nakamova
Thanks. I will look at magnesium supplements and food with magnesium in it.

Hi,My simple partial seizures involve Deja vu,a rushing feeling,voices and many other weird things and before I was on meds they would then progress to complex partials where I'd wake up on the floor with people all around me or sometimes by myself.I also usually get diarrhea and migraines.
My eegs and MRI scans all came back normal but my nuerologist still diagnosed epilepsy.it was 3 years later and another lot of scans that they actually picked up seizure activity.good luck with it all
Interesting. So what is the situation with you now? What if any medication are you on and what is the result? When was your last blackout or other seizure activity?
 
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Hi,tegretol and keppra didn't work and I continued to have complex partials and when one landed me in hospital with my head cracked open my neuro changed me over to topamax.that was my last complex-sept 2011!!!!!! Awesome!!!!!!
But the simple partials didnt stop and they actually make me feel like I'm going insane and really scare me.they are so strange and there is always the fear that a complex is going to follow so I've now had epilim added and I feel great!!!!! Touch wood.don't want to jinx myself :)
Also topamax is great for migraines.haven't had one since being on it.
 

morkys

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Hi,tegretol and keppra didn't work and I continued to have complex partials and when one landed me in hospital with my head cracked open my neuro changed me over to topamax.that was my last complex-sept 2011!!!!!! Awesome!!!!!!
But the simple partials didnt stop and they actually make me feel like I'm going insane and really scare me.they are so strange and there is always the fear that a complex is going to follow so I've now had epilim added and I feel great!!!!! Touch wood.don't want to jinx myself :)
Also topamax is great for migraines.haven't had one since being on it.
Interesting. Tegretol was mentioned to me. How frequent were your seizures before you got control of them via meds? How much warning were you given before you blacked out each time? For me it seems like about 4 or 5 seconds, maybe a little longer. Not instant, but not a long warning period like a minute or anything like that.
 

dmnckvrs

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I felt like I was reading about myself in your post.

Mine started in August, in the shower. Deja vu..felt funny/extreme nausea..almost like the familiar scenario made me sick, and then BAM, hit the bottom of the tub.

Sitting in class, same feeling. Just remember coming to in my chair, almost like waking up from a terrible dream. I was mortified I made a scene..no one said anything though, so I never brought it up.

Third time, in my chair reading..felt it coming on..purposefully was going to the floor..went out before I made it to the floor and just remember being in the bathroom cleaning blood off my face after someone helped me up (don't remember that). This was the first time someone witnessed me unconscious and prompted me to see a neuro.

2 months later and still haven't a clue what's going on.

One thing I did research though, and since your mentioned stress..supposedly extreme stress manifest itself physically through psychogenic non-epileptic seizures. It's quite common apparently. Doesn't mean you're crazy, and is considered a conversion disorder. I would ask the neuro..especially if you're taking drugs you don't need. Hope you figure this out soon buddy.

Take care :)
 
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It's weird as I was not diagnosed with epilepsy until I was 33 but as a teenager I would experience clusters of simple partials and then they would go away for months if not years!!! I had know idea what they were so I never said anything to my parents.I also always 'fainted' as a child.
I would say my last lot of simple partials were at about 17 years old and then when I was 33 they started again every day for 6 months and I just thought 'oh that's weird,these things again' then one day I had 2 complex partial seizures and again the next day.
So off to the neuro I went and the rest is history.
I don't have any warning before I black out.it's strange coz the aura (sp) never happens before a complex I just have them on their own - I think that's maybe the meds doing their job and not letting it progress further to a big seizure.
 

morkys

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I felt like I was reading about myself in your post.

Mine started in August, in the shower. Deja vu..felt funny/extreme nausea..almost like the familiar scenario made me sick, and then BAM, hit the bottom of the tub.

Sitting in class, same feeling. Just remember coming to in my chair, almost like waking up from a terrible dream. I was mortified I made a scene..no one said anything though, so I never brought it up.

Third time, in my chair reading..felt it coming on..purposefully was going to the floor..went out before I made it to the floor and just remember being in the bathroom cleaning blood off my face after someone helped me up (don't remember that). This was the first time someone witnessed me unconscious and prompted me to see a neuro.

2 months later and still haven't a clue what's going on.

One thing I did research though, and since your mentioned stress..supposedly extreme stress manifest itself physically through psychogenic non-epileptic seizures. It's quite common apparently. Doesn't mean you're crazy, and is considered a conversion disorder. I would ask the neuro..especially if you're taking drugs you don't need. Hope you figure this out soon buddy.

Take care :)
See, this is what I sort of thought originally. My neurologist hasn't really considered this. We talked about it and I said I previously thought I could be subconciously stressed, or stressing about something chronically (continually over time) and that eventually the mind decides to turn off the switch. The neurologist didn't think that was necessarily what was happening. Is that what you or a neurologist thinks may be happening with you?

At this point, the only option being considered is going on medication. My doctor would send me to see another neurologist, but he says he does trust the original neurologist I saw and neither him nor the original neurologist think there are any other different tests we can do in order to get anything conclusive.

One thing is my blackouts are not frequent as of yet. I had 3 or four last year, and three within the course of 6 months, which is significant, but it's definitely different from regular occurences. Another point is that recently I experienced something that was traumatic and so stressful, it's the most stressful I've felt in almost my entire life, and yet I had no episodes during this time. It may be possible, however, that in my situation, stress could be a factor, but instead of experiencing episodes during the peak stress, I have episodes later during the non-stress times.

I recall feeling strangely odd a couple of times as a kid. I explained it as hearing people talking fast, and unfortunately I think my parents and the doctor mis-interpretted it as me saying I was hearing voices. What I meant was, I was hearing people that were actually talking, but to me, it sounded like they were talking really quickly. I saw some doctors and nothing really came of it. I remember being told I was "nervous". Nothing was ever done about it. I have come to realize I am a worrier, and I try to adjust. My situation at work is lousy and this blackout business makes it worse. On modified duties because of a bad back and now not being able to drive has me entering data on a PC and I find it very difficult because I burnt myself out on PC's years ago. I get dizzy and feel unwell using the PC so much.

A friend who practices naturopathic medicine is offering some suggestions that I can treat the seizures homeopathically, which I agree could be possible, but I am not so sure it would be garanteed to be effective. I guess I will research some more.
 
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dmnckvrs

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See, this is what I sort of thought originally. My neurologist hasn't really considered this. We talked about it and I said I previously thought I could be subconciously stressed, or stressing about something chronically (continually over time) and that eventually the mind decides to turn off the switch. The neurologist didn't think that was necessarily what was happening. Is that what you or a neurologist thinks may be happening with you?

At this point, the only option being considered is going on medication. My doctor would send me to see another neurologist, but he says he does trust the original neurologist I saw and neither him nor the original neurologist think there are any other different tests we can do in order to get anything conclusive.

One thing is my blackouts are not frequent as of yet. I had 3 or four last year, and three within the course of 6 months, which is significant, but it's definitely different from regular occurences. Another point is that recently I experienced something that was traumatic and so stressful, it's the most stressful I've felt in almost my entire life, and yet I had no episodes during this time. It may be possible, however, that in my situation, stress could be a factor, but instead of experiencing episodes during the peak stress, I have episodes later during the non-stress times.

I recall feeling strangely odd a couple of times as a kid. I explained it as hearing people talking fast, and unfortunately I think my parents and the doctor mis-interpretted it as me saying I was hearing voices. What I meant was, I was hearing people that were actually talking, but to me, it sounded like they were talking really quickly. I saw some doctors and nothing really came of it. I remember being told I was "nervous". Nothing was ever done about it. I have come to realize I am a worrier, and I try to adjust. My situation at work is lousy and this blackout business makes it worse. On modified duties because of a bad back and now not being able to drive has me entering data on a PC and I find it very difficult because I burnt myself out on PC's years ago. I get dizzy and feel unwell using the PC so much.

A friend who practices naturopathic medicine is offering some suggestions that I can treat the seizures homeopathically, which I agree could be possible, but I am not so sure it would be garanteed to be effective. I guess I will research some more.
The neurologist, on the first visit, said it was complex-partials for me as well, and prescribed me Trileptal to take after the EEG I scheduled. I've also seen a cardiologist since then and he didn't like how my right ventricle looked , so I've been doing a slew of tests to figure out if there's anything wrong with that. He said it's possible my heart could be causing me to black out, although it usually presents itself a little differently (No aura). I guess I should be grateful they're trying to rule out something that can certainly kill a person.

Until all of my results come back from the cardiologist and I see the neurologist on the 29th, I can't say for sure, but if everything comes back fine, I can't help but think it might be PNES for me. I can handle current stressful situations well, in fact, maybe even better than most people. It's the ruminating over past mistakes and the regret, etc. that comes along with it that eats away at me, to the point where I try to block it out and not think about it. I'm talking about mistakes from YEARS ago. I read it's unproductive coping mechanisms like that, that can cause PNES. I'm sure everyone experiences this at some point in their life though, and they don't have seizures, so who knows. I'm such an over analyzer. I hope everything is looking up for you now after the traumatic experience. As for homeopathic treatment, I wouldn't rule it out. Stress can be a trigger in epileptics, so if the treatment works for you, then awesome. I've also heard ketogenic diets have wonders for people with E. I think there's a few threads around here on the subject.

I feel like the entire situation is just SO complicated. It's not a "your blood pressure is high, take this" type of thing, which is really frustrating

You're certainly not alone. :)
 
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morkys

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My situation is certainly complicated alright.

About the psychogenic non-epileptic seizures, in reading about them, I saw this:

Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features such as type of movements, duration, triggers and frequency.
I have no idea if I exhibit any motion when I blackout. Mine have simple been deja vu and then the one's with deja vu and blackout. I have not been witnessed while blacked out. While I am glad I don't have blackouts regularly at this point, it doesn't help diagnosis. I haven't had a 100% for sure episode since Aug 26, 2012. Closest I may have come was passing out for a few seconds in a chair on Dec 21, 2012 but I can't be 100% sure.
 
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dmnckvrs

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My situation is certainly complicated alright.

About the psychogenic non-epileptic seizures, in reading about them, I saw this:



I have no idea if I exhibit any motion when I blackout. Mine have simple been deja vu and then the one's with deja vu and blackout. I have not been witnessed while blacked out. While I am glad I don't have blackouts regularly at this point, it doesn't help diagnosis. I haven't had a 100% for sure episode since Aug 26, 2012. Closest I may have come was passing out for a few seconds in a chair on Dec 21, 2012 but I can't be 100% sure.
I definitely hear you on that. I don't convulse, as far as I'm aware. The person who witnessed it the last time just said my eyes were open and started to roll.

Videos of someone during the episode really helps a neurologist, but like you, I don't have them so regularly so that I/someone else can have a camera handy to document it.

Mine also don't always lead to unconsciousness, and while it hasn't happened in a while, I sometimes got deja vu/butterflies that progresses up to distorted vision, like swirls of white and black, and then it would stop.

Keep us posted. Ttys
 

morkys

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I definitely hear you on that. I don't convulse, as far as I'm aware. The person who witnessed it the last time just said my eyes were open and started to roll.

Videos of someone during the episode really helps a neurologist, but like you, I don't have them so regularly so that I/someone else can have a camera handy to document it.

Mine also don't always lead to unconsciousness, and while it hasn't happened in a while, I sometimes got deja vu/butterflies that progresses up to distorted vision, like swirls of white and black, and then it would stop.

Keep us posted. Ttys
I can't recall ever losing any conciousness while being awake or my eyes open, but I suppose it is possible, I just haven't had it happen. The only way it is possible is if it happened once and I forgot. Each time I have blacked out, I am pretty sure I wake up and have to open my eyes. When I go unconcious, it's instantaneous and I drop like a stone and my eyes are closed when I come to.

The next time I feel a deja vu and anticipate something. I will lie down asap. I have hit my head/face at least twice, if not all three times I fell.
 

morkys

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One thing I did research though, and since your mentioned stress..supposedly extreme stress manifest itself physically through psychogenic non-epileptic seizures. It's quite common apparently. Doesn't mean you're crazy, and is considered a conversion disorder. I would ask the neuro..especially if you're taking drugs you don't need. Hope you figure this out soon buddy.

Take care :)
This I find very curious. I am a stressed person, and I don't deal with stress properly. I am trying to adjust my behaviour so that I am not stressing myself un-necessarily. I am curious if something like a psychogenic non-epileptic seizures are described as including an aura and blackout. I wonder if an epileptic medication could control the psychogenic non-epileptic seizures. I definitely do not want to be taking medication I don't need to be, or taking the wrong medication which does not treat the problem. I can see myself taking medication and then still having seizures 11 months later, resetting me no drivers licence clock. At this point, not being able to drive or do even minor physical activity at work is making my life difficult. I may be 6 more months without driving, or 12 months, or more. What fun. I am disappointed in not being able to drive but I am very much interested in diagnosing my problem in general. I think a serious look at my stress/anxiety and other emotional psychological characteristics would be ideal. I feel compelled to get another family doctor in this whole process.
 
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morkys

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My concern is that I go a long time between seizures, so if I start taking medication and I have a seizure after 6, 9 or 12 months...each time, it resets the clock. I want to be able to drive again, among other things, so I can carry out certain tasks at work. I am going to see my doctor again and start going through the process with blood tests and initial doses of whatever medication is chosen.
 
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Hey Morkys,

You and I are sharing the same concern and in the same situation. I'm getting a lot of pressure from work to get my driving back, but since my seizure frequency is so spread out, medication to cover it, just doesn't make sense. I also don't want to take medication just to drive since the medication makes me feel unsafe to drive.
At any rate, I find myself in the same boat as you -- Deja Vu / dream recall like aura's with blackouts and nausea.

For driving I've had to change a lot regarding transportation and work. I'm lucky to be in a position where I can work from home, but that doesn't change the stress or the pressure to get driving back for work. If I have seizures it resets the clock and my current Neuro wants 2 years seizure free without medication before she feels safe to report to the DMV.

Keep hanging in there Morkys.
 
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