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

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!

I'm a bit late joining this thread, but I figured "what the heck." I have a number of different symptoms that crop up during my auras, the most common being dizziness. I also commonly experience loss of "train of thought", changes in visual interpretation (room shrinking or expanding, contrast changes), disorientation, auditory changes, and an inability to describe what is happening. More rarely I experience hallucinations, tipping sensations, and numbness in my hands and face.
What all of these symptoms have in common is that they vary according to what epilepsy medication I'm on and at what dosage, and that without any medication I have no (that I remember) auras, but will tonic-clonic seizures within 2 days.
 
Hi All

Just found this thread tonight and found it most interesting to read of the different "Aura's" people have. I was under the impression that an aura was the indication of a pending seizure. Before I had my grand mal, I was staring into a shop window, and one of the objects started jumping all over the place.

I feel confused here: Can one have aura's on an on-going basis throughout the day, but not have a seizure? Before starting on my medication 3 weeks ago, I had not had any seizures, (that I knew of) but was having so many of the aura's mentioned in this thread for years and years, and was treated for anxiety disorder/depression. I knew it wasn't depression or anxiety disorder, but couldn't get the doctors to see otherwise...thus I was on a 30 year regime of every antidepressant known to mankind.

After seeing the Neurologist a few weeks ago, and telling him of my issues, and combining those with my Grand Mal, he diagnosed me as being epileptic. Epilepsy does run in my family....

This medication is making me feel so wonky, that I don't know if it is the medication I'm having trouble with, or just a continuation of the aura's.

Years ago I used to get what I described as "tunnel vision"....would only see half of what was in a room......now that was strange.

What do you guys think?

Deb
 
Last edited:
Angel

Yes, Yes, Yes

I have been out to sleep disorder's clinics as I have suffered insomnia most of my life. I go almost in a trance like state, sleeping but awake. When I went out for a sleep study, I was told that I was sleeping 6.5 hrs./night-- did a two night study, and was diagnosed with "Sleep State Misperception".

The more I read on this thread, the more things are making sense to me.

Sometimes I think have my one and only Grand Mal earlier in August was a blessing. Has made the doctors look in a different direction.

Deb
 
anyone have psychic visions as a seizure with the dejavu- aura? thats why i went to the neuro in the first place i thought i was going crazy until he told me its epilepsy....between dreaming and being awake Im kinda conscious It is during this that I experience intense feelings of deja vu sometimes ......fear and I feel like im having premonitions of the future ..... I dont tell alot of people about it eather as most people would think thats really odd.... when we were moving i had a vision in the morning after i woke from bed i was on the computer... i was also switching from keppra to the gen tegertol..... the neuro says they are seizures .....

love, ::ponder::paperbag: yup
angel

Hi Again

A few years ago I had to put my dear little poodle down. She was the love of my life.... For the longest time after she left, I swear she was walking on my bed. Not every night, but from time to time. Even when we would go down to the boat, she would be walking on my bed. I told my family this...and of course their reaction was "Mom, I wouldn't be telling to many people this"...LOL Again, I think this must have been an Aura.

Deb
 
Hi Deb, I am glad that you are finding information useful.
That is what I did when I first found CWE. I started reading all of the threads, especially in the Library. It helped me to understand what was going on with Rebecca.

Unfortunately since Rebecca loses memory after having a Tonic Clonic, she is unable to tell me if she has any aura. She must feel something prior, as she has gotten up to tell a teacher she doesn't feel good.

I have heard auras happening as much as two days prior to a seizure.

I hope that is your only Tonic Clonic (new name for Grand Mal). I will keep my fingers crossed that your doctors figure it out.
 
Hi Deb

Interesting to hear about your aura, also known as Simple Partial Seizures, I have just had my second lot of brain surgery, and since the op, although my Complex Partial Seizures are a lot better and less frequent, I am having the most terrifying auras!!! God I could deal with my epilepsy if it wasn't for these Godawful things! They are classed as seizures, and they will stop people having them from driving legally. It is possible to just have these and no Secondary Generalised activity, when the electrical activity spreads to other areas of the brain, hence causing further seizures, as I said, I am finding that I'm just having auras throughout the day, I know they can be a big warning that possibly a bigger seizure is to follow, I sometimes find that it gives me time to sit down, or make sure that I'm somewhere safe, although I don't get many problems now after the aura.
I used to see things when having an aura, I used to see this guy in a flat cap, in a 1930's cobbled street up north, and he would be pulling his collar up against the wind, and looking intensley at me over his collar, wow!! it was like being on a trip when I saw him! It was fascinating to read about what you saw looking in the shop window. I hope you are enjoying the feedback from this wonderful website, I know I have, everyone has been so helpful and friendly, and it really helps to know that we are not going potty, and we are certainly not alone!

Love
Elaine x
 
Thanks Elaine and Robin for your responses

I wonder though, can these aura's go on many many many times/day even while on medication, as I seem to be still having them. Should I be looking at having my medication changed?

I can be sitting and crocheting and all of a sudden if will seem as though the couch has moved back and forth, or I will get a sensation I am falling. I can be sitting on the computer and get the same sensations, or washing dishes. And I have complained to the medical profession about horrible head pressure for years.......could this be seizure related in your opinion?

This drives me "potty" as Elaine says. (((hugs to you both)))

Deb
 
Hi Debs

Potty Bird here!!! I so know what you are saying mate!! it is so difficult to explain to people who know now nowt about epilepsy isn't it? The auras are to me, the most difficult thing to deal with having epilepsy, and I have always said, it's NOT me that "suffers" with epilepsy, but the people around me, I'm not usually "there" I'm out of it! Bloody horrible the auras, I so sympathise with you my if you suffere badly with Simple Partial Seizures, aren't they awful? so frightening, so completely disorientating, and I really wouldn't wish them on my worst enemy!!!!

Hope you are ok when you read this? I am so down in the dumps at the moment, but I am determined to keep my proverbial "chin up" keep smiling!!! Write soon!

Love

Elaine xx
 
Sorry to hear your down in the dumps today Elaine, is it due to this crap (can I say that on here)? I know what you mean, I've been sick most of my life, never knowing what the heck was wrong with me, doctors kept treating me for anxiety/depression/insomnia, yaddy yaddy, only to find out it is Simple Partial Seizure activity. What gets me is the fact that it goes on constantly through out the day, and the only way I can seem to forget about it is if I'm doing something to keep me busy. I will be out walking with my friends, but I'm not there......I'm off in loo loo land. Drives me "potty". (I'm just teasing you Elaine) Here in Canada, we say eh! after everything we say. :roflmao:

One aspect of this activity that is very annoying, is that I can't take a lot of conversation, especially if the person I'm talking to is loud, the stimulation is just overwhelming. Do you find this? I even find music to be a bit much at times. Boy we sound like a cranky pair don't we.

I hope your day gets better Elaine.

Deb
 
In the last year my aura have changed dramatically!

I used always feel numbeness and tingling on my left side. And now days it has changed from having those to severe headaches , weakness on my leftside and vertigo constantly ! And it varys if I even have an aura now!
David
 
I , s changed from having those to severe headaches , weakness on my leftside and vertigo constantly ! And it varys if I even have an aura now!
David

Haird18

Hi from Northern Canada. I spoke to a my future brother in law last night and he said he had a complete numbness in his left side just before a Grand Mal. About the constant vertigo you speak of......when you say constant, do you mean it is with you 24/7, because mine sure is.

I went into town today to do my Saturday thing, and I had several pretty good rushes, what a ride this is. But I did say to my hubby on the way home, that this afternoon seemed somewhat better as far as the vertigo went, spells spaced out further. But I would have to say I have around 10 spells per hour.

Deb
 
I had surgery in 2000!

Well in 2000 I had a right temporal lobe for simple partial seizures. But, I have multitude of medical issues with my brain that causes me to have different auras or no auras which is scary! Now I have complex partials and tonic clonics too.
David
 
isnt' an aura a seizure in itself?

This is what I'm trying to establish here.....ARE AURA'S A FORM OF A SEIZURE....PARTIAL SEIZURE ACTIVITY.

My aura's feel like they could be seizures, because I totally feel like I'm moving, extreme vertigo. I'll say, WOW that was a good one. I get a head rush, that makes me very dizzy, and just for as short time. Can be typing on the computer, talking to someone on the phone, cooking, shopping, etc. I just carry on with what I'm doing.

But today I think I had a small seizure. I was sleeping on the couch, and was awakened to find my body going into a ripple of spasms...last around 10 seconds or. What do you guys think......sound like a seizure? I'm so new to all of this. This will be the third time this sort of activity happened (the ripple affect).

Deb
 
Aura or Seizure?

isnt' an aura a seizure in itself?

"IT" can be or "IT" may not be. There had been
times I had been informed that such were not
not so, but were actually a seizure! But there
were times when I thought were a seizure was
actually an aura.

These things needs to be discussed with your
Neurologist / Epileptologist and you need to have
a log, diary, journal, ledger, or something - and
if you had/have any witness(es); that is even
of more benefit, because it assists the Doctor
to determine specifically of what all exactly and
specifically happened.
 
an aura simple parial seizure.
The aura had last night was just a feel I knew something was going to happen.

Belinda
 
I get itching, like picking tiny invisible bugs off of me, or scratching before a CP. I currently have a "feeling" that I needed (and did) pack an emergency room bag, just in case - due to too many too often weirdities - walking drunk - spaced out - eyes cross - feeling "peculiar" - earlier had what felt like a baby kicking in my belly (I ain't got no baby factory no mo'!!) - earlier had frontal Right head pain - extreme nausea - many tiny PC's. Go to neuro. tomorrow, if this keeps up, I may have to do what I always refuse to do - go to ER. Girl Scout training - always be prepared - extra change of clothes - (I'm SUPER SIZED - so take my own nightgowns that fit) - writing pad and pen - cell phone and charger- MP3 player and earphones (soothing music to the soul) - all ID's - inhaler - if I REALLY need to GO my CPAP machine. I can't explain it but I feel to be "On READY" right now. All is "ok" - just "not right". HOPEFULLY - all will go ok tonight and go to neuro tomorrow and get meds re-adjusted. Life is fun!! Ain't it!! Also, had incontinency - not currently normal for me - prior to earlier seize today. Carey is concerned. Popsie is hiding under bed and knows something is "happening". Anyway, I reckon I'm as ready for whatever as can be. The worst would be "coming to" in the ER w/ a bunch of gause patches from attempts to put in IV. Hmmm - let me try some salt water.
 
Mine seem to be more autonomic in nature -- a feeling of panic, rapid heart rate, sweating, my hearing suddenly decreases and then I turn my head to one side and my left side goes numb and tingles. I can't talk during this time but am aware of people talking to me. Scares me to death.
 
Aloha- anyone out there ever experiance this? I get this feeling as though I am falling at a forocious rate of speed, my eyes are closed and I cannot open them or move in any way. It seems to last for 30 - 60 seconds and can happen several times or just once or twice. If you will pardon the desciption, I equate the feeling as 'being flushed' (not a reference to color). If it is an aura I gotta say it is the worst for me. Any ideas?:paperbag:
 
Auras? I've read articles, spoken with people who experience them and came to the conclusion that I've never had an aura.

Thank you Sharon, for enlightening me with your data. I do have auras after all. I have TLE and it sounds like I might have Neocortical TLE. (I'll have to discuss this with my neurologist but my bet is that I have it from what I've read, here)

Psychic-phenonomena has always fascinated me, regardless that I've experienced incidents throughtout my life. I've had out of body experiences, confusion about my physical placement in relationship to my environment, depersonalization which might be related, neurologicaly, to my have having DID. TL Epilepsy "is" interlinked with DID according to my neurologist and my fervent research.

It "is" possible that I have Neocortical Epilespy. Only after my first Tonic Clonic seizure, I began hearing, as was described, auditory hallucinations: "muffling, ambient sounds". I hear one or two slyllables which I'm not able to comprehend e.g. "the muffing". Recently, the voice "outed" a word, still incomprehensible It's very deep and its attempt is to threaten me. I don't know if there is something to this but it begins at the end of my room then progresses, slowly, close to me ear, now.

I wonder? If these audiitory hallucination's very "loud" spurts of "syllables" and slow "movements" towards me are experienced by other people with Neocortical TLE Epilepsy? I would be interested to know if I'm not alone in my detailing.
More articles to dig into, I guess.

Thank you again, for the sharing. Now, I know I do have auras. Just different ones than others have explained to me. I assumed that these voices had "something" to do with Epilepsy, especially, as they only began occuring after my first siezure. Now, I have a term to work with.

Cinnabar
 
Last edited:
Back
Top Bottom