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UPDATED: Mon, 05/15/2006 - 7:30am
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WendyB...
How exactly do aura's feel
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How exactly do aura's feel? Can you have aura's and not have an actual seizure? I think I had some this weekend. I went off into like a "spacy" feeling. Like I was tingling and I couldn't make myself snap out of it for a few seconds. I have had a headache since I has these feelings. I have had E a long time, but I am new to all the terminology and so forth. Thanks.
By WendyB... at Mon, 05/15/2006 - 7:30am | 12888 views | 132 comments
Recent Comments on this Discussion
Toni Munson
That sounds like a seizure. I get Aura's all the time. I start Feeling really wierd from the tip of my head to the tip of my toes. I stare off, then I groan, and then I will grab my mouth. It will always start with an Aura. It is wierd to explain one. Only way is that I feel wierd and that something bad is going to happen. My last one was at work and my co-worker caught it and said that I had one of my moments. Luckily he understood. Then I went home and slept for hours.
graham
Hi there.
I had encephalitis early last year and as a result I now have epilepsy.
I've had a couple of seizures. My last full blown seizure was in March of last year
but I've had alotof auras since. In fact my last aura was yesterday morning.
My auras scare the life out of me. They just burst onto me like a really strong deja vu. I start to feel really dizzy and I get the weirdest thoughts of some ridiculous memory, that I can't understand why I should be remembering it. It could be a song, a talk with someone from years ago, or other things that I have no reason to remember. I can't talk properly while this happens and I have to try and talk myself out of it. I try to breath in through my nose and fight it as hard as I can.
I use this analogy... It's like a big black hole appears beside me and if I look into the black hole and try to see what's in there I'll fall in. If I fall in a seizure will kick in.
The after effect for me is tiredness and I just feel depressed and down because it's so hard not knowing when the next one will happen.
I HAVE HAD EPILEPSY SNICE I WAS 2 BUT STARTED GETING THESE AURAS FOR ABOUT 6YEARS DOCTORS DIDNT KNOW WHAT IT WAS FROM PEOPLE THOUGHT I WAS LIEING I KNEW I HAD SOME THING WRONG THE WAY I GET ITS JUST SO UGLY I CAN BE SITTING IN A ROOM FULL OF PEOPLE BY MY SELF WERE EVER AND IT DONT MATTER I END UP GETING THEM I GET THAT DEJA VU MY BODY GETS REALLY HOT NO MATTER IF ITS COLD AS HELL OUT SIDE OR NOT I GET THE WEIRDEST FEELING IN MY TUMMY IT SCARES ME IT SUXS WE ALL HAVE TO GO THROUGH THIS BUT ITS KOO TO KNOW THERE SOME ONE ELSE OUT THERE AND YOUR NOT ALONE
ive been having aura awhile now it affects me more in work then any other time it is such a weird feeling,and i go into the biggest day dream ever and when i come round i get a bad feeling of dread, and the deja vu is so weird and i also get a memory of something that i havent thought about in years.. its been so great reading all of the replys as i actually thought i was losing the plot
HI, I JUST HAD TO RESPOND. YOUR AURAS SOUND SO MUCH LIKE MINE...THE STUPID DE JA VU FEELING DRIVES ME CRAZY.NO ONE REALLY UNDERSTANDS UNLESS THEY TOO HAVE SEIZURES. I TRY TO EXPLAIN WHAT IT IS LIKE, BUT THEY JUST LOOK AT ME AND SHAKE THEIR HEADS. I HATE WHEN MY HUSBAND TELLS ME...JUST GO LAY DOWN...I CANT SLEEP MY LIFE AWAY......I TOO GET THOSE VISUAL MEMORIES AND HEAR VOICES AT THE SAME TIME. I ALSO FEEL AS IF I AM FALLING DOWN A HOLE.....AND JUST WAIT FOR THE DROP TO END.
I read your and Im exactly the same. (almost) the" I use this analogy... It's like a big black hole appears beside me and if I look into the black hole and try to see what's in there I'll fall in. If I fall in a seizure will kick in." I get like a hole in my vision, and when I look at it, its like falling into it, and I'm there... Ill have full blow conversations with the people I'm imagining. Not sure oif tehy're memories, but ill be talking to them, and it'll be like I'm in 5 of these at once, and Im just in different situations. Like part of my mind, is talkin, the other is swimming, and the other is on the bus to uni... Its mad.
I hate explaining it to people, looking at you like you're a nutter...
If im honest, I love the feeling, its REALLY nice for me, but I dnt like it, cuz i KNOW a seizure will follow. Thats the the only downside. Besides that, its a great feeling. I always, lay down, and try to control my breathing to try and fend it off. Thats worked like once...
Hi Graham,
Thank you so much for describing your aura. The part with the ridiculus memory is exactly what happens to me with a little bit of recalling dreams that I have had in the past thown in the mix. With me, the memory slips away and I can hold it in consciousness to process it. Once the initial memory slips away, I feel an overwhelming since of dread and anxiety that last for about 10 to 20 seconds. I have never had a seizure but my sister has epilepsy and when I described my experince (much like yours) she said is sounded a lot like an aura. To complicate matters, I have OCD (an anxiety disorder) so I start having depersonalization experiences. I am trying to figure out if my experiences are truly auras or an episode of depersonalization. Anyway, thanks again for your description.
Hi there. So my gf has had a couple seizures but a few aura feelings over the past few months. Have u had any other seizures or are they just the aura feeling? Thanks
Gil
Graham, this is brilliant, I am going to forward it to my neurologist and GP, because I have had so much trouble describing my auras to them. I was having them for 3 years before I had my first fit and nobody could diagnose them, the closest we got was post natal psychosis at first and I thought I was losing my mind and was so scared.
My auras scare me rigid, I go cold with fear and find myself looking at people next to me on a train or in a work meeting and think for a split second - "Who are you? Where the h*** am I?" and then think something lawful is going to happen - I know what you mean about the black hole. Also I can't believe that nobody notices what I am going through - if I look half as scared as I feel it should be obvious but apparently not. The ridiculous memory thing is so true, I hear sounds in my head like a section of dialogue from a TV programme, or have deja vu feelings - somebody putting an item of clothing back on a rack on a shop - trivial bizarre memories.
They also happen in my sleep when I am particularly bad and I wake up with a mouth full of saliva and feeling sick. Afterwards my stomach has filled with acid because of the fear and I have stomach ache and headache for hours afterwards. Sleep is the only way to recover.
I am on Epilim 500 for my fits (which are only in my sleep) and these auras don't occur when I am super diligent about taking them but if I am under great stress and forget a tablet or two they come flying in from nowhere.
Interesting to hear you had encephalitis that started your fits - my auras started at 37 soon after giving birth to my second child who was a challenging baby and I was under a lot of stress at home and at work - then my first fit happened out of the blue at 40 years old after a temperature and tummy bug.
I would love to understand more about why I develped this so late in life and also whether anybody feels like this.. It doesn't always follow that I end up having a fit.
I've suffered from these things since I was 4 years old! I've been to doctors when I was that age, and a liittle later, but they put it off to night terorrs......
I'm now 44 years of age and still suffering from the same affliction (though only once or twice a month). I have never been diagnosed with eplilepsy, but I always knew that it to be true. I am scheduled to see a neurologist on Tuesday about an (unconnected I hope) condition with my feet, and I figured it would be a gret time to bring up my existing problem.
My Dad used to call it the "Diddies"! I guess it was his way of triviallizing his concern over what kept waking his son at all hours of the night. My symptoms were basically the same as the others above. Profuse sweating, chills, the same bloody tune or saying being repeated over and over, and above all, utter terror. I could not wish this experience on my worst enemy! I've been asked by family and friends so many times over the past 30 years to describe how it felt, but I could ony reply with, "I can't!". There were just too many feelings and imagined experiences to put into words..
Thank you for your Website!! Tonight is the first time that I've read described exactly how I feel during these episodes. Everything from the feeling (deep in the gut) of impending doom, to the instant need for flight....
Though I've read above, that Aura normally lasts only 20 or 30 seconds, my attacks always lasted for 5 or 10 minutes. Stripping down to my underwear and running around our house in the middle of winter was and is not abnormal...! After that period, I would usually be very tired and fall to sleep shortly, though to this day, I remember everything. I have never had a full Siezure that I know of (thank God).
I'm happy that when I see the Neurologist on Tuesday, I will be better able to describe the problems that I am experiencing with my feet, and finally bring up the 40 year old (possible) Epilepsy concern that I have.
I too have the 'who are you, where am I?' thing. Uhg, so annoying, especially when I'm with someone I know very well in a place I also know well. Just stupid.
All the best, Christine
I had viral encephalitis when I was 4 years old. During my childhood, I would always have what I would describe as "weird dreams" that would be a deja vu like sensation. It included the weird tastes and smells. I could usually hear myself talking, saying this sentence over and over and while hearing that would produce a strong euphoric feeling, like all my pleasure receptors firing at once. I could never remember what it was I was saying but while having these, what I now know as auras, it always seemed to be the same thing I was saying before. I can relate to what was described in another post as that black hole you see and if you enter it your sucked in. When I feel the aura coming on, because I strangely enjoyed the sensation, I would try to focus on it and make sure i had one (similar to the black hole analogy). They ran all kinds of tests on me but never while they were occurring so not much progress was made. It wasn't until that I became an adult that the auras developed into seizures. Before I knew I was having them, I would wonder why I would wake up so exhausted when I had a good night sleep. I would also wonder why my muscles were all sore and later wondered why my tongue was sore and there was blood on my pillow. It didn't take long after that that my wife witnessed one and we took action. My neurologist prescribed me with Trileptal and that drug pretty much eliminated the seizures. Now I don't have insurance and cannot afford the medication. I have auras from time to time. And I have a few seizures a year. I have had pretty good luck with controlling on them on my own. Usually mine are triggered when my immune system is out of whack, lack of sleep, or taking of any drugs or alcohol. I have learned that I cannot take any cold medication with pseudoephedrine, several different pain medications, or even drinking alcohol can put my body off balance enough to trigger them. But, I still feel as though I should be back on the medication because I don't know for sure completely how they are triggered.
Before my surgery 8 years ago I would have that feeling to. A deja vu feeling and remembering hearing a past situation in my head, but you can't talk. It was the same everytime ,but I still can't explain it. I had surgery in 2000 I had astrocytoma in part of my brain that works speech and memory. My memory lasted. I sord of had to relearn speech.
Since my surgery I've only had 4 gran mals since 2000. I went 6 years without one, But after my mom passed away I was so upset and stressed in brought a seizure on. I had one last year to at work and luckily there was only one child in my class and another teacher there. The seizures aren't the same I don't have the dejevu. I just start feeling weird and scared and then my vision starts fadeing out and I can't breath. I still bite my tongue.I hate biting my tongue. It takes a while to heal. Now I haven't a seizure in a year. I have had a couple weird feelings since then. I pray It doesn't continue. I'm scared.
BJR - having it is certanly strange. the first thing i do is put somthing in my mouth, sit down and hope i don't bite my tounge off. once i had one i fell over, wiped out a rocking chair, broke my glasses and put a scar under my eye it looks just like a tattoo. people sometimes look at me thinking i killed someone. what a bummer.
Before my surgery 8 years ago I would have that feeling to. A deja vu feeling and remembering hearing a past situation in my head, but you can't talk. It was the same everytime ,but I still can't explain it. I had surgery in 2000 I had astrocytoma in part of my brain that works speech and memory. My memory lasted. I sord of had to relearn speech.
Since my surgery I've only had 4 gran mals since 2000. I went 6 years without one, But after my mom passed away I was so upset and stressed in brought a seizure on. I had one last year to at work and luckily there was only one child in my class and another teacher there. The seizures aren't the same I don't have the dejevu. I just start feeling weird and scared and then my vision starts fadeing out and I can't breath. I still bite my tongue.I hate biting my tongue. It takes a while to heal. Now I haven't a seizure in a year. I have had a couple weird feelings since then. I pray It doesn't continue. I'm scared.
Graham,
My son had Viral Encephalitis two years ago, and now has epilepsy. The auras you describe sound so much like what my son TRIES to describe to me (He's 11). I would really appreciate it if I could hear from you and hear more about your story. It's been a very hard time for us, as I'm sure it has for you.
Val Clark
My neurologist thinks im weird. I actually love the feeling of my auras. A very strong familiar feeling , The very intense euphoric deja vu feeling flows through me like a jolt of electricity which lasts for about 10 seconds. I try to stay as still as possible to make it last longer. But what goes up must come down, I feel like crap after, I get depressed and just dont care about anything, nothing could bother me.
I get alot of auras, and they all feel the same. However trying to explain them to a doc is like watching paint dry. Mine start at the top of my head and work their way down my back. I think of something or someone from the past, then I get a strange smell. When I get to the smell, thats when I worry because that is usually when I will have a seizure at anytime, or will wake up not knowing what is going on, be it where I was or in the back of an EMS truck. My auras vary in length, from 5 or 10 seconds to as long as about a minute or so. And then again, sometimes I don't have an aura before a seizure. After the aura, depending on the length, I am a little dazed and depressed. I don't like the feeling because of how I feel afterwards. My head also spins for a bit. I think I also have them when I am sleeping because sometimes when I wake up, that strange smell is right there, just as strong. It's not an easy thing to live with. Back when I was on Dilantin, I was having as many as 5 or 6 auras an hour. I guess my body had gotten used to it and to put it simply, it wasn't working. I'm on tegretol and keppra now and I've had 13 seizures so far this year, and I can't even remember how many auras. At first it worked wonders, and now it's just something I'm taking. I'm getting to the point of being afraid to go anywhere, and I just feel so alone. I'm just hoping there is some help out there, be it medication or otherwise.
Hia Everyone,
I am new to this thread and hoping to find some answers as to why I get these auras.
This is my little story and I would love for any feedback.
It all started when I was around 14 years old and I was hanging out with friends playing tuggy rope. I slipt, fell back and hit my head on the pavement sharpley resulting in what felt like an electric shock running up my spine and into the back of my head. The very day after I started getting these weird turns which I have always called (Deja Vu) its the only descriptive word I can think of. I get these sensations that wash over me and make me feel nauseous, incredibly hot and sweaty no matter if it is freezing around me. I feel like I need to go to the loo badly my heart pounds and I get a weird blank taste in my mouth which makes me feel a little sick. Thats whats happening to my body whilst this little episode is happening. What happening to my brain starts off by me feeling like I have seen and done the things I am doing right then in a recent dream or something, very deja vu feeling and very familar. I even run to the loo or put down my lap top in slow motion when its happening like I have done so in a dream or before lots of times. I havent. I always feel when its coming and will deliberatly look around and say to who ever is there, Im getting Deja vu and i always feel like I know how they are going to turn around,look at me and say "Oh dear I know...just relax" Its so odd and all of the above happens together and can last maybe up to 2 minutes only. After the bash to my head I got these Deja vu's each day maybe up to 6 a day. Then it dwindled to around 1 a month which I then thought was something to do with my menstrual cycle but the more I think about it and have the deja vu's I realise its not even close to them. I am 27 now and feel as though I know the inside outs of them. During the day I can handle them because I am aware of them washing over me, however I dont like the ones I get in my sleep as I wake up startled at first until it dawns on me whats happening..its slightly confusing at first and makes me get up and break the pattern by drinking some water or running to the loo feeling nauseous.
On these nights I wake up properly in the morning feeling tired and as if my brain feels fried, thats the best way I can describe having a hand full of these on and off leaves me feeling. I suffer head aches all of the time, but these ones feel different.
They can be triggered in me by lots of different things, like watching TV something Ive never seen before. Il be sat there and it will wash over me like this big fear and it makes me feel as if I know what they are going to do and say next. I dont believe in physcics so I am confused as to why thats happening. When I am out and about and meet people or friends it can come over me in an instant and makes me feel like ive sat there, the same place, feeling the lot but vaguely in a dream..its so weird. I even start remembering faces to my dreams and things I felt in my dreams that I had forgotten about when I woke up. All these things only happen on those days that I get the Deja vu once a month.
For a few days after the Deja vu's, I feel almost scared, deffinitley depressed and just generally at a low. I also feel like I cant be bothered to do anything even though on a normal day I know its important. Im lucky enough now because I have had them for so long, to understand that the few days after are going to pass because if I didnt, It would be awful and I dont know what I would do.These few days always fill me with dread too and i can never put my finger on why. i dont feel safe and feel so aloneeven though I am not.
I have a lot going on in my life right now with TV and traveling and when I get these two down days after the Deaj vu days it worries me because at them times I feel like just giving it all up and hiding under my bed sheets.
All the other days in the month minus these three, I am so happy and normal..maybe a little stressed but never feel down or anything so i know its just a brain blip that I need to keep check on.
I never have seizures though after my (auras/deja vu's) which scares me because does that mean I havent had that pleasure yet? I only have auras, never felt as though Im having a seizure. What do seizures feel like? am I having mild ones which dont feel too bad that I am just not understanding them or will they come to me further down the line?
I dont want to go on medication because I hear so many bad stories and as long as I can keep a check on these myself then I will try my best.
Just after each of the Deja vu's happen, it makes me feel giggly
like Ive taken drugs or something. I get a massive brain high and
smirk... I never smirk normally so dont understand why its happening
after these.
Sometimes when I know one is coming I will try and
focus on it or stare at something which will trigger a more powerful
one.. I know completely in sane way of thinking but I dont feel myself
when these are happening so who knows why?
My partner is also starting to get similar things happen to him. Are we syncronising or are we both eating bad diets? its all so strange and its really getting him down so i gave him links to this page so he could read through all of your posts which may help him too.
Would love to know your thoughts on this and its very comforting to finally find out that I am not alone.
flashbakx, it's nice to read someone else has that euphoric feeling like i do before my seizures. in the late 1990's i used to get that feeling but no seizures would occur. in 2003 i had my first seizure where i passed out, usually for one to two minutes, then take around an hour before i was myself again, often depressed and many times, if people were there i often argued with them believing it didn't happen. now i take the drug Kepra which has helped a little but i still have seizures around every two months.
Hey all you crash and burn folks (lol) hows it going? Well about the Auras, well with me I always get a scared feeling but I think its cause I know what is coming next. Other things that happen are that I stop and start walking, and I drop things, (I only use paper plates and plastic cups). All my neighbors think that I'm on drugs or that I drink a lot. I don't get that smell of oranges thing but, I guess its just as well seeing as I live in FL. (lol). I don't know....., the one thing I do know its a MAJOR DRAG. I hope that this helps. Later, Eric
I have a question... Last year someone in my family died at the age of 14 of a grand mal seizure in the bathtub, which is why I'm here on this site. But I just remembered something and wanted an opinion. First of all, I pass out a lot. :-) No seizures that I know of. But one night, I woke up with my hands on my throat, like I was strangling myself or something. In the morning, there was a little blood on my pillow, which turned out to be from my fingernails on my throat. Maybe it was a bad dream, i don't know, but that's never happened before. Could it possibly be a type of seizure? Just curious... thanks!
I totally understand you Eric! It scares me to death yet, and I've had Epilepsy for a very long time. I have to quickly find a chair and sit down before the seizure hits. I mean an over stuffed chair so I won't fall on the floor. I use paper cups and plates and plastic utensils also. Don't trust myself with the glass and sharp tines on forks. Pretty bad! Have a good day everyone. Talk later! Birdie
I have something similar re the scary thing. I get like a premonition type of thing where I can actually sense that I am about to fit - and they use to last anywhere between 10 - 30 seconds. Just of late though I've actually had the sense of fitting - but they never realise which is a weird feeling. I actually get like a tingly feeling all through my left (I have complex partial) when I have my auras...
I have grand-mals and my Auras are dejuvu, Headaches and Nausea. Sometimes I get this overwhelming feeling of being in one for about 5 mins or less and it is a horrible feeling. I have been getting them often.
i have grand mals also
I am also effected by dejuvu alot.
this seems really strange but i also have dreams that come true. Sometimes i feel as if i have lived in another lifetime. let me know if you have this also
ps i am not strange but i know it sounds weird......but growing up with e I'v been called weird my whole life......
I have Grand mals, and dejavue's, I also have the feeling of sickness, tingling, light headedness. I don't know that the dreams have anything to do with seizures, but I too have dreams that come true, I have had them since I was 8 years old.
Hello all, My auras start with lights flashing, intense panic, sometimes objects seem to "melt", for 10 years that was all I had we always thought is was an ocular or A-typical complex migraine. Then I started losing speech and being real out of it afterward, numbness and "stroke like" symptoms. After 4 neuros and a million tests, I've found out that for me it depends on the length of the "aura" if I have the lights etc. and it last for more than a few minutes than that is the seizure. If there is a short duration of the former than I know that there is more to come, the slurred speech, the worsening of vision, the feeling of being totally out of it. They still haven't given me an E catagory though, because my E.E.G. was normal. I guess I would like to know the "type", but since I'm responding to meds I guess that's all that matters. One thing I've learned from this forum is just how different everyones seizures really are. I never knew how diverse it was until I received a dx and started educating myself.
I've had a couple of different kinds of auras in my life. As a child I'd see Buckwheat of the Little Rascals in a gambling casino getting ready to put money in to a slot machine. As he let the money go and the machine started spinning...so did I. (aura) Now it's just a strange feeling that seems to originate in the abdominal region. I'm usually sitting and I'll sit and try to fight it off but it's hard to win over what your electrical impulses are sending out. I see the people around me at work, know something is wrong and try to go off so they won't know/see. When I come to I don't know how I got to where I am or remember anything for about 5-10 min. even what my name is. SCARY.
Wow, after reading these responses it brings back memories (not deja vu :) of childhood experiences. I've always remembered these weird 'dreams' from childhood. They were so vivid and stick out in my memory because I felt awake during them. They happened when I was napping on the couch and was around 6 years old. One of them was where I could hear this strange sound, like a voice calling me in a sing song way. I remember trying to see where it was coming from but not getting up. I would look at the closet door and either see or know that there were just coats in there. It left me with the same feeling I have now after a simple seizure which entails extreme deja vu. It is that pleasant but disturbed feeling. I also remember waking up and smelling a burnt tire smell and thinking my pillow must have gone bad! It makes me laugh now. Each time the smell would be gone after awhile so I never bothered telling my mom that something was wrong with my pillow. Now that I think about it, the majority of my auras/simples start with a sound. For instance, recently one was triggered when I heard a name.... Interesting........
It seems as though my auras were a bit different than most people that have posted. I don't have them anymore as my medication (lamictal) seems to be working. I would actually hear a sentence over & over - like a song that gets stuck in your head. To this day, I could still not tell you what the sentence was. It wasn't anything scary, just a simple long sentence. I felt like I was going crazy because I was hearing things! My abnormal seizure activity comes from my left temporal lobe (if I remember correctly) - the same area where auditory/sounds are processed, hence my auditory hallucintations.
wow, after reading aboutthe auras everyone eles has i feel kinda left out and very ripped off. everyone seems to get some type of sign something happens right befor the seizure....
not me i get nothing. i just wake up in the hospital
they say(hubby and kids)that i fisrt yell then my eyes roll in the back of my head,i froth. loose my blatter then i fall to the floor or off the bed or couch... and seiz. then after the seiz is over i am confused dont know anyone, scared and i fight anyone around me.. i try to run out of the house away from ppl....they have to hold me down........
Meemz
Im glad i heard that as i have nothing in common with any one else that i have read about, untill i read this. I had a Grand Mal, my 1st seizure, and i didnt know what was going on, but remember fighting every one so i didnt go to hospital, even the ambo's, which now id like to appoligise to as they were trying to help me, I just wasnt with it, i just went from bed to bed to the couch any where i could lay down, thats what i was told as like i said i was out of it, but since then i thought i had'nt had ne more, but twice now in my sleep, when im half knowing what is going on i have frothed at the mouth, and just shacken down the left side of my body, but then go back to sleep. But in the morning i can remember what happened. I know that sounds wierd, but thats just me~!
I started having mine when i was about 12.. i never knew what they where up untell a month or two ago. Id have the deja vue feeling, it was always something with sight, the way something looked at a certain angle would trigger a vision of a old neigbours house. after that i would just get really tired and feel out of it. After i took a knock to the back the head while horse back riding they changed. Now they last longer and come more often. I never got the feeling of fear from them before cause i had no idea what they where. But when i got back from ireland a week and half ago, i had 5 in three days. The last two made me feel very strange sort of like an out of body exp. I hear people talking but what they said didnt make sense. I couldnt tell you what i saw only remeber i heard someone screaming at me, only no one in he house was screaming. It took me nearly a week to feel back to normal, last night when i was laying in bed my whole body started to tense up and twitch, i felt trapped and panicing i was able to roll onto my back and opened my eyes focusing on the ceiling and after about 15 mins i was calm enough to go to sleep without a problem.
I have been on tegretol for several years, I was having grand mal seizures in my sleep. I have been seizure free for several years, but for the past year I was having what I thought to be panic attacks. I now know they are these auras. I will suddenly feel this horrible feeling of terror, followed by a feeling of deja-vu. My fingers will tingle & I get a metal like taste/sensation in my mouth. It passes quickly, but nothing tastes right the remainder of the day. I also have been getting these in the middle of the night, they wake me up. The seizures never woke me, my husband would. I'll be seeing my neurologist next week, but it's nice to come on here and see I'm not crazy!!
I have similar seizures. I awaken, then have a tingling sensation or a feeling like water is running down my legs, then have a strange feeling in my stomach and finally a horrible metal taste in my mouth that passes quickly, but is very powerful. You are not going crazy! I would definitely discuss with your neuro-know that you are not alone.
Thank you! Does anyone know if there are medications to aleviate the symptoms from these auras? After I have one I feel awful all day, and like I mentioned, nothing tastes right, not even water. Whenever this happens I wish I had something I could take for anxiety, to help me feel 'normal' again. I'll be seeing my doc next week but was just wondering if anyone knows, or if anyone takes something when this happens.
Well for me the auras (simp. part.) which ever you want to call it I am glad I have them. They are my warning, they prepare me. I have focused on so many different reasons for them & different types of feelings/sensations the last 25 yrs & in the last 10 have noticed that my 2 primary notices of the "possible" seizure to come are the feelings of panic. I think that one is mostly due to allowing someone to see me have one. So as others have said, I try to find a quiet, dark place & take slow deep breaths to keep the panic at a minimum. The other warning is due to my hearing, since my left ear is only about 30%, when the aura hits all the sounds are changed. It's like i'm in a bubble & all the voices I hear are echoing outside that bubble. I have learned that with the different hearing levels in each ear, if I plug my good ear it helps to balance out any incoming sounds. Then I focus on the single sound of my breathing (like meditation). When I was young (20+) yrs ago if the meditation didn't help by the time my right leg went numb I was going to have a GM, no matter what. As years have gone by I can even go thru numbness to normal 2 or 3 times & still come out of it without going GM. In the past I wouold have the seizure while I was still concious. But now a days I can hold it back until I am out cold.
Thou I wish I didn't have Epilepsy at all, I'm glad I have the warning signs so that i can get to a safe place. Or if I am driving, it allows me to take the time to decide if its going to pass ok or if i should pull over & put the keys in the glove box & get in the backseat. Why do so much? For safety reasons of hitting head on stearing wheel, or shifting car into gear. The seizures (when they do go beyond the simp. part.) usually only last a couple minutes. Then after 5 or 10 minutes I'm back to normal.
Auras can leave me worn out. But when they are quick ones that pass within a matter of 10 or 20 seconds, I"m back to my old self & continue my day as usual.
Tim
When I get aura's my stomach gets this automatic sinking feeling like I am going down a roller coaster. I usually freeze whatever I am doing and wait to see if it goes away. My heart starts beating really fast. I tend to grab on to the person next to me, giving them the hint a seizure may be coming. If someone asks if I am OK I wont really talk back. From there I either get a seizure or finally get out of it. It is the strangest feeling that is indescribeable, but I hope that helps with a little what it feels like in my body.
It sounds like everybodys perception of an aura is a little different. Mine feel like a seizure is starting then stops. I find them annoying. I have had seizures for 30 years now and am pleased to just have auras now.
tweetty1
Hi tweety,
I'm truly not partial to hurting feelings; but, although you think you "just have auras", truth is you still are having seizures. (Simple Partial Seizures)
http://www.epilepsy.com/stories/ps_1064005012.html
http://www.epilepsy.com/epilepsy/seizure_simplepartial.html
~sol
Does that mean that the stupid neighbor with bad bass makes my brain go into electronic shots? How rude.
My auras, (beside the jerks that precede my big ol' dance party), are an incredibly horrid sense of fear beyond anything I've ever felt. I've done a lot of crazy dangerous things that were quite frightening, but nothing compares.
I think it's like the deepest blackness melting up my limbs, up my neck and I'm out. Sometimes it starts like the feeling of a hand in a glove, but I can fight it off by staying relaxed ad concentrating. I think that some people think that's silly, but I know that if I ignored the warning and just started hopping about my merry way, I would be on the floor in no time.
I wish I heard a happy little jig right before I lost consciousness. That would be peachy keen for sure.
Auras are good to have - I skipped the warning once and ended up breaking my sternum in the shower.
Caboose.
Wow! Isn't the fear so gut-wrenching?! I have that horrible mega deja vu, then feel like a vacuum is sucking out my insides through my navel! Talk about over-stimulation: try the televisions sales area of an electronics or department store. So many different programs/sound/pictures going on at the same time. If I can't avoid it, I end up clutching my shopping cart, 'til my knuckles go white. I'm sure everyone thinks I'm drunk! Gotta get myself a bracelet, one of these days... Anyway, I know the fear. It is almost worth having a seizure, just to get rid of it!
The auras that I experience seem to encompass a lot of the same characteristics that those already described do. There's the tingling, the olefactory hallucination I can't identify and can only describe as smelling the color orange, a tightness in my chest with a difficulty breathing and moving, the sense that the air has somehow become thicker than it should be, and the disconnect from reality--- as if I am observing the world rather than living in it. I also feel an intense and overpowering emotion of grief, like someone dear to me has died. This might be something like the feeling of doom already described, except I feel it physically taking hold of me. Add to this a general feeling of nausea and a slight headache, and what's there next leads up to the point at which I feel the intense dread described. It is here that I make my peace with my Maker, understanding that something has got hold of me that I can't shake and won't turn loose. The next thing I feel is the incapacity to breathe at all coming over me and the world going black. The experience I can only describe as what I envision it would be like to drown is what I feel as I lose consciousness, if I DO lose consciousness; and, that does not always happen.
I know once I feel these things starting that either they will pass, or I will wake up with a mouth full of blood and a huge knot somewhere on my head. Fortunately, that has not happened in many years.
And, I have been advised by neurologists both ways as to the classification of an aura. The best I can gather is that an aura is, indeed, a sign that something is wrong; and, since they are linked to seizures, and often involve the same areas of the brain that the seizures do which follow them, they can be thought of as a part of the seizure itself. My understanding is that where the aura constitutes something not experienced by people having "normal" brain function, it can be classified as a seizure in and of itself. The new literature does, indeed, make this determination. The aura is not, however, seen to be the equivalent of a grand-mal seizure--- and is not treated as aggressively as that is. Hope it helps. jb
I'm 20 years old and I just had my third grand mal seizure a few weeks ago. I get these auras all the time and reading about other people having them makes me feel really good about myself now. My aura always have a procedure to them. Like, first I'll get racing thoughts, they repeat over and over and over, then the tunnel vision will set in. It hits me like a brick. Things that are normally a little far away look extremely close up when I know they're not, I know something is definitely not right with my vision. Then my head feels like it's floating and eventually my whole body. Most of the time I don't have a seizure when that happens but I get those auras all the time and they suck, it's the scariest feeling in the world because of the paranoya of having a seizure.
Then lately I'm getting different auras while I'm driving even scarier. I feel extremely strung out, aggravated and then I'll turn my head to check my blind spots or something and when I jerk my head and vision back to the road, I go about cross-eyed and it takes about all the energy in the world to concentrate on driving "normal". It's as if someone grabbed me by the head and started shaking it back and forth while I was trying not to get dizzy from it. I don't think I'm gonna be driving much longer. I also see these black spots all the time. It's like they're are flies in my brain or something and a black spot will just appear and fly off out of my vision.
None of that stuff seemed to happen before this last seizure.
Do you think it's possible to have a seizure that can cause you're medicine not to work the same way anymore? I feel side effects from it I've never felt before.
I too have auras. At least I think they are auras. It's a tingling sensation in my chin and lips. and I then have alot of saliva in my mouth. My hands are usually shaking too. But I do the same thing as others here, think positive thoughts and breathe, breathe, breathe... I make sure I'm somewhere safe in case I happen to have a seizure but I usually don't. The first auras I remember were when I was about 20 years old, and a seizure followed right after that. But otherwise I'm lucky. I have grand mal and petit mal seizures but luckily they're under control. But are the auras actually seizures?? I'm not sure.
I've had a hard time calling my auras 'seizures' just because when you say seizure to someone, they instantly picture a grand mal seizure. However, I have a lot of auras (have had grand mal seizures before, but I think my meds tend to stop them mostly), and my EEG showed that there is definitely seizure activity going on.
An aura is basically what they call a simple partial seizure before it generalizes into a bigger one. A generalized seizure (such as a grand mal) begins in one part of the brain and spreads all over. For some folks, I guess this happens slow enough for us to really notice and feel when its happening - and thats the aura.
So for my understanding, an aura is basically the same thing as a simple partial seizure, at least in my case (TLE).
my epilepsy is pretty well controlled right now, but I do still have simple partials. For me its hard to really accurately describe other than to just say a feeling of doom and weirdness creeps up me. When it feels like it hits my head, I often get strange sensory perceptions, mostly visual. Like... space and dimension won't seem to be real, or the room will bounce and shake a little bit as if I were in a boat.
I usually can't or won't speak, except to blurt out "I need to go lie down now". I sometimes get the strong deja vu or jamais vu feelings, which is very strongly accompanied by heavy anxienty.
Mostly.. in a nutshell.. everything in my world will all the sudden feel so terribly wrong and distorted. And then... its over.
Or in the worst case, a grand mal follows, and I lose all my memory of the entire event.
Toni Munson
Aura's are very scary. I have them before I have a seizure. I start to feel Numb from the tip of my head to my toes. Then it's like I am in a dream world and I can't come out. Everything is going on around me and I hear everything but I can't respond. This is my seizure. The Aura is the warning before the rest of the seizure. The rest of the day I feel terrible like something really bad has happened. Thanks.
I have several distinct types of aura's which besides my EEG was one of the ways we finally realized that my "episodes" were seizures.It seemed like my aura's changed as I got older and the disease itself changed its manifstations. I either see red , like a filter covers my eyes & everything is tinted red (this is my most common aura, & when I see red I sit down immediately). I also have olfactory hallucinations (smell things), most commonly burning electrical wireing(?) occasionally devils food cake (LOL-I have no idea why it's not particularly to my liking). A long time ago I would have had auditory hallucinations (hear things) mainly country music songs that I did not know but I could repeat the words word for word & get them right. I used to think I was picking up a country music radio station in 1 of my fillings. Sometimes it also sounded like a little boy saying a quick word "mommy" or "help" or "hi" which was very freaky (this was around the time that the John Edwards Show first came out so I thought that I was either crazy or psycic. I also used to feel like I was burning, and I could not swallow, & I thought that I was going to forget how to breath & I would have a strange feeling(I always called Whelling) in my throat. Jamis Vu & deja vu' were frequently present depending on where I was.
Even thought I am currently seizure free I still experience deja vu' when watching TV. I don't know if this is because everything has been done before and I can just predict what is going to happen or just because all the actors are all so familiar. I don't think(but it could be) it's a side effect of topamax. But it does seem like I am saying "I've seen this before" way too much to brand new shows. Oh wee life goes on. :-)