Auras...!!!!!!!!

[Elaine H]

I would love to hear from you guys about auras, doe you have them, do you always have a secondary gen'sd seizure following, can you think yourself out of the aura, do you get tastes, smells, do you see anything/hear anything, can they be triggered by anything? Would appreciate any feedback as I'm, researching for my book, and I know how weird and wonderful my auras are and have been over the last 22 years.
I haven't seen my man in a 1930's cobbled street for a long time, he used to look at me over his collar, and he wore a flat cap. I read about a guy who used to see a small boy picking up pennies in a cobbled street, weird eh? I can actually think myself out of my auras, but sometimes I don't want to, they are like religious experiences!!
Would love to hear from you.

[BuckeyeFan]

My auras (which are actually classified as seizures themselves) are mostly visual and emotional. Everything will begin to look out of proportion and I will want to grab at things that are too far away. My T/Cs have always been preceded by auras. However, not nearly all of my auras continue into T/Cs.

I do not have smell, taste, hallucinations or sounds with my auras.

You asked about 'thinking' them away. I have at times become very angry at the thought of another d*** seizure coming on and that focus "seems" to help me come back.

I have never enjoyed them in any way. I despise them.

[xenome]

I never have had auras at all, but I would like to. That way I could know if I was going to have a seizure, I could lie down or make sure Im safe.
I think it would be better to know when I am about to have one. Not knowing sucks...

[Elaine H]

Hi Xenome

I can assure you that you are better off without auras, they are aka Simple Partial Seizures, and if the activity spreads they become either Complex Partial, or Secondary Generalised, I find them terrifying sometimes, but I can focus on things and make them go away sometimes, since I've been on Keppra, it's almost been one big aura!

[BuckeyeFan]

Xenome - I understand the fear of not knowing they are coming. Mine were always scary enough even with the aura warning. Many times, I would have multiple auras leading up to a t/c that would warn me to be cautious (though I was not always smart enough to listen).

[sarahj]

elaine i agree - id rather a surprise seizure!

keppras the WORST for auras, thats why i swapped to epilim chronos and lamotrogine.

in reply to original question(!)
...for me auras had a taste - believe it or not, and my perspective became seriously distorted. i would also shake a lot - not an actual seizure but just random muscle spasms.

i suggest a few things - something large to grip (a large firm pillow, cuddly toy etc)
a duvet - warmth and helps feel safe
do not think about seizures. talk to someone if you can about random stuff, or maybe try singing..
finally, sounds weird - but rock whilst your laying/sitting. that way you can feel in control of your movements. it also sent me to sleep a lot!!

[Elaine H]

Sarahj, Hi, good to hear from you, someone replied to my thread saying that they wished they had an aura, I said no way, they terrify me, I can flash back to something that happened years ago, I can be there, I can see it, smell it, taste it, I guess that's like deja vu, well weird, and it is over so quickly, I can sometimes describe the whole aura to my partner Mark, as it's happening, it must sound so weird to someone who's never had an aura, he is very understanding and supportive, I am so lucky to have met him, he's also a firefighter and a paramedic, comes in handy as you can imagine. It's pretty rare that I get any further problems after the aura, and I know that they are recognised as Simple Partial Seizures, and having just them counts against me in my trying to get my driving license back, we have to go 12 months seizure free in the UK! It used to be three years!

[xenome]

Elaine, I dont understand. The auras themselves are seizures?

Still, I have absent and tonic clonic seizures so one more kind wouldnt hurt, especially if it warns me of a tonic clonic. Then I could do what Sarah suggests, because my medication doesnt help.

When I just think of some of the places I have had tonic clonic seizures, and some of the places I could have seizures, it makes me nervous.

If I cant stop them, I wish I could predict them.

[xenome]

Sorry Elaine, if I brought back any bad memories.

[Elaine H]

Hi Xenome, no worries mate, it's just so good to talk to who understand, that's all that matters, I've had some embarrasing moments with epilepsy, I used to take my clothes off!!!! I did it once outside the MD's office at work, thank god his secretary got me back into her office, I know she wasn't lying when she said..." Ooooh Elaine, you've got a lovely pink thong on!!!"

[xenome]

[RobinN]

I wish my daughter had auras. It would make the falls more predictable.

[xenome]

I know exactly how you feel, Robin.

Another thing is, I have the VNS device which comes with a little magnet. If I had auras I could run the magnet across my chest, activating the VNS device, possibly preventing the seizures altogether.

[sarahj]

no way?! that is annoying - when did they change that?? my last seizure was at 16 so i had to wait 3 years, by which time the whole "excitement" had passed and now i cant be faffed...its pretty annoying!
when did they change the law? mustve been recent...

[smiler]

Hi my auras usually start with a peculiar feeling in my stomach, and I get agitated, Then my mind seems to start to switch off. I cannot comprehend what people are saying to me. I my speech gets slurry.
I never know if this is part of a seizure or if its only the start to warn me.

[stringbean]

Elaine, I sent you a private message.
I could write on this reply so much, I was having auras and/or partials almost every day before my surgery in 2003. I had so many different experiences while having them it will take alot of space on this reply to explain them totally. This is why I sent you a private message.
Now since I had my surgery they are different.

[TeeTees]

I get an electrical taste in my throat - kinda like when you lick the bottom off a battery feeling.

That's part one....

Then, if it continues, I start to become aware of a seizure about to happen. It starts with a feeling that my brain contracts inside my head (strange I know). The follow up to this is usually a voice from someone who either threatens to stab me with a knife, or tells me that if I stay where I am, I'll die. Pretty crap huh ?

So, my first instinct when I get the first part of the 'voice' is to get out of wherever I am, and find a safe place.

Last Thursday I was down the gym, actually upstairs doing ab crunches at the time....coming to the end of my workout, which for the record was just doing arms - so quite a nice and easy workout...nothing really exhausting. The nearest place for me to 'escape' to is the toilets downstairs, so I had to make my way from the gym area upstairs, all along the top floor, and down the stairs before entering the changing room and into the toilets. It was actually a woman who was laughing at me, in my head, and she was telling me that I would die if I was to stay where I was. But, because I tell myself that the toilet is my 'safe place', she can't seem to touch me when I'm there......very odd, but it works.

So, all in all, I find it good that I get aura's as it gives me a chance to escape the 'public eye'. BUT, it can be quite daunting too.

[brain]

You can view postings of others and participate
in a poll, and there's also a link available in part
of a perspective on auras, but not limited to all
entirely by clicking on the link below.

Very interesting what others have to remark:

Experience AURA or AURAS?

[mooselips]

My husband gets "Epigastric" auras.
Very hard for him to even discribe.


What I see is he immediately gets pale, somewhat diaphoretic, and very quiet, but alert. Lasts about 20 seconds. He says it feels like an "inside-out" feeling.
I guess you'd have to experience it to know the feeling.
He does not have a seizure after he has one of these.

In fact he had them for 3 years without having a major seizure, and his family Dr. had no idea of what was the problem.

[Elaine H]

Hi Mooselips
Wow, that sounds a bit "far out" I used to see people, a man in a flat cap in a 1930's cobbled street, looking at me over his collar, I read about a guy that used to see a little boy, picking up pennies in a cobbled street, and I get the Epigastric Auras, I get that feeling you get when you go over a hump backed bridge, that little tickle in your tummy, then it kinda travels up to the back of my throat, then the most incredible taste, I couldn't even begin to liken it to anything on this planet, I get a strange smell, and I just feel sort of ethereal and out of it for a few seconds, sometimes just a split second, I was just in the kitchen a minute ago, I opened a cupboard and woah!! I just kind of flashed back to another time and place, I don't know where or when, luckily it is a split second thing sometimes, but I am visibly shaken sometimes, my partner will look at me and say"...Hey, are you ok, did you just have a funny?" Good to hear from you though, keep in touch!

Cheers

Elaine x