Experience AURA or AURAS?

Aura or Auras - What do you experience?

  • Vision / Visual

    Votes: 199 46.4%
  • Smell

    Votes: 121 28.2%
  • Audio / Hearing / Balance

    Votes: 181 42.2%
  • Taste

    Votes: 76 17.7%
  • Special Senses / Psychic Phenomena

    Votes: 220 51.3%
  • Physical Automatisms

    Votes: 138 32.2%
  • Nocturnal / Other

    Votes: 96 22.4%

  • Total voters
    429

marlena23

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I have a lot and supposedly my seizures are under control. Before my grand mals I've had epigastric rising, also upset stomach to the point I can hear noises from my stomach, I literally feel drunk, stumbling, vision goes in & out kind of like an old black and white tv being turned on and off, rapid eye blinking (I wasn't aware of it until my friend pointed it out to me.) ,blank staring, I can not talk or write.
For simple partials the visual is more like twinkling Christmas lights, buzzing in ear before deafness which could last for weeks, I was never given an explanation why, rising and falling feeling in my stomach, myoclonic jerks, and occassionally a deja vu episode. I don't know how to describe it really and I do not believe I'm psychic in any way but I've had dreams (negative ones) that have happened a short time after. It could be coincidence but I had a 'dream' about my grandfathers death 4 days before it occurred. Which still disturbs me, but small seizures, whatever they are occur daily and my doctors can't explain why.
 

Mike

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I had auras for two years before the seizures started and when I tryed to describe them to the doctors the told me that I was on a medicad trip! Now that Ive been through 35 years of drug trials and brain surgery they have started to listen to me. An Epilolgist will tell you what a nerologist cant. Epilepsy is a specialty that needs a doctor trained for that specialty
 

Elaine H

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Hi Guys
As someone who was plagued by Simple Partials/Auras for many years, sometimes going onto secondary generalised, sometimes not, I always said that if I could just get rid of the auras, I could almost put up with my "wobblies" as I call them. I am lucky to be under the care of Professor John Duncan in London, and he prescribed me a drug called Oxcarabazepine/Trileptal, and I have probably had two or three auras since the day I started taking them several years ago, (not sure how many years) I cannot stress how much better they have made me and although I have had my second surgery since I started taking them, I no longer have the classic Simple Partial, as some of you have described, the sudden .... jolt to the stomach, epigastric rising (rising panic, sick feeling) the classic taste in the mouth, maybe even a smell, that awful sense of deja-vu, I used to see a man in a flat cap, in a 1930's cobbled street, pulling his collar up against the cold, he would look at me over his collar, never spoke but wow, it was almost a religious experience!! In a strange sort of way, and I think this might make sense to some of you, I almost miss the auras, they were almost like a high or a buzz!?!?! Do you understand what I mean? But it must be recognised and treated as a seizure, it is a Simple Partial seizure, the old Petit Mal, which translated just means little absence and it's just whether the electrical activity spreads throughout the brain or not as to whether it becomes more serious. I see a few people on here also have migraine, Oxcarbazepine is also used to treat this too and also Bi-polar, maybe you don't have this drug in other countries? You should ask about it, it has done wonders for me!!!

Lotsalove

Lainey
XXXX
 

Mike

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Trileptal seems to be the drug for me too. I thought it was Keppra but, I think that Keppra is only good for me in small doses along with the trileptal. I dont want to sound like I know everything but I pay attention to my seizure stuff because its so important to me not to seize. I keep a journal and log everything even the number of days of seizure freedom. Today is number 319 this time. Im so thankfull for this Blessing!!!
 

Elaine H

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Hey Mike, that is fantastic about you and Trileptal working as well as me and the wonder drug! I'm so glad that someone in the states has had success with it too! Good idea to keep a journal of your seizures, I write W for "wobbler" in my diary and then I just know when I've gone wonky, although luckily, they are few and far between these days, thanks to two lots of surgery. Keep up the good work, and best of luck to you!
 
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I feel like I am in a walking dream - like i know what im about to do right before i do it, and if i do what i feel that im supposed to do, it just leads me down the rabbit hole further, deeper into that deja vu feeling. Also it feels like im about to die, or that im on a roller coaster headed down hill. when i was a kid, i thought they were psychic experiences. now i know better.
 

Hand of Blood

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i would get deja feeling, out of body feeling, i find myself being paranoid alot, vision i get really realy bright vision from time to time mostly in supermarkets!
 

RanMan

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i would get deja feeling, out of body feeling, i find myself being paranoid alot, vision i get really realy bright vision from time to time mostly in supermarkets!
Probably in Wal Mart right?
 

MadameJ

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Cool report on auras. I have had them for 10 years now but thought it was anxiety and that I was a little mad.
 

MadameJ

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I get auras but just found out thats what they were. However, to the best of my knowledge, I only get 1 every month or every other month. When I get them, however, they last for days. The auras seem to be continuous when they hit!? Does this sound familiar to anyone?
It was until a month ago that I got one and then woke up in the ER bc I had a generalized seizure.
 

fez

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Smell, taste, de javu some other stuff
mostly though they are enjoyable almost euphoric.

Now I'm medicated I don't get them as much and I can't link them to any seizures.
 

Blythe

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Deja entendu....nailed the term thanks to CWE

I used to get out of bed in the late 1980's...I remember walking down the stairs to the couch. My husband would then wake up and gently hold me and I stopped to feel a flee urgancy. I guess it was like behavior modification. Having a feeling of safety in my husbands arms changed my behavior. I have never told anyone that before. Boy, layers come off on this forum.
 
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I used to get out of bed in the late 1980's...I remember walking down the stairs to the couch. My husband would then wake up and gently hold me and I stopped to feel a flee urgancy. I guess it was like behavior modification. Having a feeling of safety in my husbands arms changed my behavior. I have never told anyone that before. Boy, layers come off on this forum.
Example A of why we all come here, safety, validation, and truth, ours and those who care for us.
 

Vonnie

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This is my first time replying about myself, but I can truly say I have had seizures since
I was 18. I first notice the aura when I am putting on my makeup and looking in the
mirror. Seems like I can see myself with a certain color shirt and just anything that
makes me feel like it is a Dejavu type feeling. Other times when I am working at
my desk I feel like the devil himself is sitting on my shoulder just waiting to jump
and usually he does! I am 63 years old and in 1996 I had temporal lobe surgery
for a tumor that was 4cm. I had no seizures for 2 years and then all of a sudden
they came back. I have repetitive ones somewhere like 10 to 12 a day for 2 to 3
days and then no more for a couple of months. I have taken so many prescriptions
and none ever seen to stop them. I now take Carpatrol twice a day. I would
greatly appreciate any suggestions anyone has. Thanks!!
 
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I honestly don't know how to describe my auras (as I'm sure a lot of others don't). I had been getting them for awhile but didn't really realize it until one day it just sort of clicked and I saw a common denominator, I noticed this sort of....light yet heavy headed/confused/afraid feeling and could relate it to every seizure I've had. One lucky thing with my JME is that I only get seizures within 30 minutes of waking up, so I'll have the aura almost instantly upon awakening, so then I'll put in my mouth guard and lay in bed.

Sadly the only times I've actually waited it out the full 30 minutes are when I didn't have one, if I ever got this feeling and after 20-25ish minutes or so said "screw it, I'll be fine," 90% of the time is when it happens. Just can't seem to learn my lesson on that one...

I am thankful I can detect them. Even if I don't always act properly on it, I can definitely tell almost immediately. Now I just need to do the right thing and have one with this special mouth guard in to see if it actually works so I can tell others!! Not that I WANT to have one, but I am really curious as to if it will stop me from biting my tongue...


Edit: I can relate big time to Hand Of Blood's aura (minus the supermarket part since they don't happen soon enough for that), so that's crazy to me how us epileptics can be so similar in such subtle ways...
 

STEVE.F

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I honestly dont know if i get auras or not,but from time to time i find myself in a situation which is sort of strange,it may be a coversation in a certain place but i have the strongest feeling this very same situation has happened before,like im re-living a piece of life that has occured already.....a time shift if you like but it is most unsettling when it happens,and i find myself very busy trying not to let anyone notice me as i feel people are looking. its so difficult to explain.
 
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I also get deja-vu, usually 3-5x a week, but I wouldn't consider it an aura since I never have an episode when I get it. I think it's just more weird stuff my brain does...
 

bruce

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i experience powerful auras on a cyclical basis. usually for a couple of days per month .sometimes several per day during this cycle.. describing the auras i would have to relate it to a huge sudden dose of adrenalin, overwhelming sensation of almost electricity coursing through my body . radical change in heart beat{ accelerated } . having never done any illegal drugs in my life , but having read about them . i would say its kind of like doing a hit of acid, the sensation could not be described as unplesant but in fact euphoric. i do not lose awareness during these episodes but friends and family tell me i look as if ive just won the lottery.
 

Elaine H

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Scary Memories of My Auras

Although I don't really have auras anymore, thanks to the wonderful anti-convulsant Oxcarbazepine/Trileptal, I always remember that my auras were almost like religious/spiritual experiences, they were like WOW!!! I was almost on a real high from them and I have to say, I missed them a bit when I at last, was prescribed this wonderful drug that has stopped them altogether. I would say to anyone reading this, that still has bad auras, see if you can have this drug prescribed, it really has been a major breakthrough in my epilepsy, and I really don't miss my auras now, but it makes me sad to read about the people on here and their experiences with them, I do remember that they were absolutely terrifying!
 

Blythe

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This brings up a question....

I used to think if you could control the Aura, mine are deja entendu's, then you can control the seizure. Ha Ha!! This med that you mentioned, does that? It is the first random neural firing, so to speak. Really interesting.......
 
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