deja vu

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Emee

Stalwart
Messages
232
Reaction score
5
Points
63
I was diagnosed with temporal lobe seizures several years ago due to right temporal love injury. I know that's nothing compared to what most of you experience. I'm wondering if anyone else has the same experience I do. For lack of a better word I feel weird, I can't think, I feel as if I'm going into a world which is familiar to me, I feel scared afraid I won't return to reality, it's always the same vision or place I've been before. It is over before I ever get to see where I'm going. I feel disoriented for a few min. I usually have a tight feeling in the left side of my face after the episode. I've had these for a few years.

Does these sound familiar to any of you. I'm always afraid I'm having a stroke. Thanks for listening.
 
i have samething i think it refer to as alter state of consience...it horrible i get deja vu aswel.temporal lobe do odd things and you got as much misery with it as anyone else with other types of e.it gives me panic attackes and yes i also think i about have stroke or die within seconds.you not on own what you describe very common and horrible
 
I too have TLE. My seizures start with things (people, place, conserv.). seem like it has happen before the exact way. I have thought to myself that person is gong to say BABABABA and that is what they say.

I know to get to a chair then I will stare, smack my lips, swallow hard for several times, have lobster claw like movement in my hands.
I will know who is around me, what they are saying, where I'm at. However I can not respond. I didn't know what I was doing.

went it starts a fear just about overtakes me.

You are not alone.
 
Thanks so much for your replies. It makes me feel less terrified.
 
I've had TLE for many years. At least 30 and probably more like 45 or even 50. What you describe sounds a lot like what my partial seizures can be like, as well as the feelings that I have leading up to a spell of partials. Not unusual at all, but can be kind of hard to describe.

I have written a number of poems which have to do with epilepsy, as have some of the other members here. I would encourage you to go to the creative writing section and read some of them. Here is a short one of mine:

simple partial

To glimpse one, or two,
or a hundred
among a thousand
inner landscapes.
Intermingled Then and Now.
Meditative silence calls forth
vague images from
the perpetual movement
of shrouded thoughts.

Blink and they're gone.
 
it's always the same vision or place I've been before

a simple partial seizure - what you're describing is a classic symptom of temporal lobe E. many of us have them on here Emee, you can be sure of that. and 99 out of 100 of us hate them. the odd person has an enjoyable experience, but it's most common to get the deja vu and the same awful experience over and over and over... know you're not alone, like jyearta said you couldn't be in a better place for what you're going through.
 
So, your deja vu experiences are "in the moment" things that are actually happening that FEEL like they've happened before?

Lately I'll be doing something that I'm very focused on:
cooking a complex/muti step meal
reading to my children (right now it's book 4 of Harry Potter)
or learning a new piece of music.

Something that I am very focused on. And then suddenly a completely unrelated memory will pop into my head.Thing that happened when I was a child, things I haven't thought about in a LONG time. So, nothing recent. This has been happening daily for the last 2 or maybe even 3 weeks. I'm confused because they seem so much like they're not a big deal. I've noticed that I feel a little dizzy when they occur - very little. And I've noticed pin point spots before my eyes, usually just one, but it's very bright and very obvious.

Ugh, this crap is so confusing.
 
Thanks to all of you for your support. I don't know what I would do without you.
 
I am not diagnosed but waiting to see my neurologist after suspicious activity on left temporal lobe in EEG to explore possible Temporal Lobe Epilepsy and my symptoms are similar to you- sudden dejavu with intense awful fear, nausea, Tingling in my arm, audio visual hallucination like I am remembering a dream (it is a menacing figure like the painting the scream and recently during it i think it is remembering the credits to Buffy which it isn't!) And the certainty that I know what will happen next and it will lead to me dying. All lasts 2 mins about and usually prior to my period. horrible so I sympathise. I know people on here have much worse but I still find it so upsetting and also worry it will progress. It helps to hear I am not alone, even tho I wouldn't wish it on anyone. X
 
Having the deja vu feeling happens with my seizures. In a strange way it is a comfortable place to be in. I can tell one is coming on and I am aware it is happening. It usually happens when I am about to fall asleep.
 
the strange memory thing happens to me,a strong memory of somethings years ago,i realised straight away it e related cos so strong and uncontrolled,not nice only started happening recently.my hand jumps out to hold something or someone i not sure if it panic or e and i no can control it
 
Oh that wicked deja vu feeling, I know exactly what you mean! I often feel like I am remembering a vivid dream, and I'm just totally overcome with fear/anxiety. Luckily these moments pass within a minute or so. Occasionally, I get a tingling sensation and blotchiness up my neck and on to my face (kind of like what happens when you're embarrassed). I've experienced these "episodes" for as long as I can remember. When I was little I used to think they were what others referred to as deja vu.

Do other people have coping strategies for these simple partial seizures? Do you notice anything particular that sets them off? For me, I've begun to notice some patterns: They are more likely to occur when I'm sleep deprived, drinking caffeine, hungry/full, need to have a bm, or going to have my period soon. Anybody else notice things like that?
 
Do other people have coping strategies for these simple partial seizures? Do you notice anything particular that sets them off? For me, I've begun to notice some patterns: They are more likely to occur when I'm sleep deprived, drinking caffeine, hungry/full, need to have a bm, or going to have my period soon. Anybody else notice things like that?

I have been having deja vu, or maybe simple partials since I was a kid and they just picked up. Now they are a warning of a seizures sometimes. I notice they happen far more when I had little sleep or other of my triggers.

I actually do have somewhat of a coping strategies, I used to just sit down somewhere familiar and control my breathing. It didn't always do anything but I helped at times. I would just try to relax myself as much as possible, I never knew how much a persons breathing can refocus the mind.
 
Oh its such a relief other people have them too...

mine sometimes start with my stomach flipping over like im on a rollercoaster, or i'll have a feeling of fear or a senastion of falling- to the point where i've made the mistake in the past of getting on an escalator- and then not being able to keep my balance when i've got off it, as it felt like i was still on it.

Then it sort of feels like i'm in a lift and the doors are closing and im sinking back into my mind, and i'm aware of whats going on around me but that it would be almost a physical struggle to join in or continue the conversation around me, or if I got up to move, say, I wouldn't be able to judge a space easily, and I could very easily miss a chair and fall on the floor, for instance. Also, at these times sometimes I know ones coming because I start getting angry or I start getting upset and crying for no apparant reason.


I struggle to know how to deal with this whole thing at work - it's very socially innappropriate!
 
Last edited:
I also get very hot during them - especially on my forehead, and I find I can make them alot better if I go and sit out in the cold, they bring alot of relief, which other people don't seem to understand
 
welcome posh,
the following is a list of symptoms of a simple partial seizure (different from absence). as i've had them for many years i would say it sounds like what you're experiencing. your symptoms are bolded.

Deja vu (vivid memory 'flashbacks,' commonly the same each time)
Jamais vu (when you are unable to recognize things that are very familiar to you)
Lightheaded or dizziness
Sudden strong emotions (such as irritation, anger, sadness, fear...)
Visual distortion/hallucination (dark or bright spots [like fireflies], sudden blurring, misjudging distance, seeing things smaller or bigger than they are)
Auditory hallucinations (music, voices [like the T.V. is on, but is isn't], buzzing)
Disassociation (in an environment but not part of the environment)
Phantosmia (strange smells: electrical burning, items baking, etc...)
Tasting non-existent tastes
Tingling/numbness on one side of body
Nausea
Unsteady/weak
Tremors
Flushing (usually of the face)
Sweating
Going pale (after face flushes)
'Churning' feeling in the stomach
 
Before I was better controlled, I had these potent de je vous experiences, and I was convinced that I was psychic. I'm not a superstitious or religious person, but the experiences were powerful enough to have me wondering. I actually was convinced that I had dreamed the experiences I found myself having--although I'm certain today that I did not. I also have temporal lobe epilepsy. Now that I am better controlled, I very seldom have those experiences of de je vous.

I also have extreme, sudden mood swings. Many years ago I remember walking through my bathroom. When I walked into the bathroom, I was horribly depressed but by the time I'd exited (within only moments) I was the happiest person on the planet. It was as if that bathroom had drawn a line between one state of being and another. These days, I sometimes fall into less extreme altered states, and I do have less severe mood swings.

I also used to have hectic religious experiences, which I now know were due to epileptic activity. I have had hallucinations that I believed were visions. Karin Armstrong wrote a book called the Spiral Staircase in which she describes her experience with temporal lobe epilepsy. She, too, had strong religious experiences that were significant enough to cause her to become a nun. After a decade, she had her first tonic clonic seizure, and after she was medicated her visions stopped. She experienced a crisis of belief, which she overcame in a rather unique way that led to her winning the Pulitzer prize. What I enjoy most about her story is the fact that it reveals how vivid and real these experiences really are to TLE sufferers.

I must say, the vast majority of my TLE experiences have been difficult to tolerate, but I must also acknowledge that, regardless of how plastic these experiences really are, they are still far beyond what the ordinary person gets to experience in their lives, so I also have a little gratitude--odd as that may sound. At the very least, my life is far from arbitrary.
 
Oh, and to add to what qtowngirl has listed, temporal lobe epilepsy has many symptoms that are unique to this particular portion of the brain. There are some 200 symptoms that are related to the temporal lobe. It helps to know that the temporal lobe houses your most instinctual self. That, as I'm sure you know, is rather a massive part of human experience. It is also responsible for moods. So, whilst you might have symptoms that are typically listed beneath partial seizures, you will also have symptoms that are unique to TLE. My advice: Never be embarrassed to report a symptom to your neurologist, regardless of how weird it may seem to you. TLE comes with some absurd behaviours, and chances are your neuro has heard them all.

There are all kinds of weird and wonderful ways that TLE manifests: TLE sufferers often fidget with their clothing during a partial seizure. They often have odd oral fixations--lip smacking is common. Also bear in mind that it's likely that your epilepsy radiates into other parts of the brain. My epilepsy originates in the temporal lobe but radiates into the occipital lobe, and that influences many of my symptoms as well.
 
There are all kinds of weird and wonderful ways that TLE manifests: TLE sufferers often fidget with their clothing during a partial seizure. They often have odd oral fixations--lip smacking is common.

lip smacking is from a complex partial however not a simple. it is important to know the different symptoms between the two when trying to figure out what you're experiencing.
 
Back
Top Bottom