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

[brain]

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.

I have described this feeling to my neurologist
before, and it wasn't a rising feeling.
It was somewhat of being turned inside-out.
Very difficult to describe or explain. They
weren't sure if it was a seizure or an aura.

I know what the rising feeling is, and that was
not it. This was totally different and in a class
by itself, however, one of the EEG Tech long
time ago captured it - and it revealed a kindling,
but no seizure, and that was the same time I
had that above paragraph description. Mine
only lasts for 3-5 seconds, when my neurologist
asked me how long it lasted, I just remarked
to him for a few seconds - and that's exactly
what was shown on the standard EEG! I was
awake and alert. It is a very strange experience!

But once I was back on Dilantin / Phenytoin,
I didn't have that experience anymore; it only
makes a come back whenever I'm not on that
medication. However since being on Zonegran,
that medication kills it, so for me - Dilantin and
Zonegran are the only anti-epileptic drugs that
have killed whatever that was - too spooky.

[Elaine H]

Hi Xenome

You really wouldn't want the Aura before your seizure, for me personally, I could have the aura or Simple Partial Seizure as they are known, and the electricity may not spread in my brain and I won't neccesarily have a Secondary Generalised Seizure, I can just be left terrified, disorientated, and just totally knackered1 I hate em, I could actually just about manage with just Complex Partial Seizures if only I didn't get that bit before when I get a taste in my mouth, a feeling of Deja vu, I get sometimes a strange smell, my sight isn't affected, I know some people's is, sometimes I'll get a seizure to follow the aura, but not that often, the first thing I might know about one of my "wobblers" as they have affectionately become known over the years, is I'll say, did I just have a wobbler? I think I just had a wobbler, or I'll be getting up covered in blood, or just aware that I've lost a few moments of my time. Before my last lot of brain surgery, I rarely got an aura, but now I've had a cavernoma removed from my right temporal lobe, I get this intense auar, I wouldn't wish it on my worst enemy!!

Please keep in touch, it is so gppd to hear from folk that understand, it is such a complex condition, and we are all so different eh? I'm still smiling whatever happens!

Cheers

Elaine xx

[mooselips]

This thread is really interesting.

I often wished Gary, (hubby) had an aura, so he could get himself somewhere safe, and not get hurt.

But, I think, looking at it from the seizing persons point of view, it would be downright awful!

It maybe would let ME have peace of mind, but who's the important person here? Heaven knows not me.

Thanks for sharing.

[RobinN]

I have read in Epilepsy:a New Approach that if you have an aura you can be trained with 85% success rate to reroute your seizures and gain control over them. The book gives many suggestions and techniques for self care.

Also the Andrew-Reiter Epilepsy Project, Inc. in Santa Rosa, CA has an out patient program to help those with epilepsy learn this method.
http://www.andrewsreiter.com/
http://www.coping-with-epilepsy.com/...ive-behavioral

[Elaine H]

Hi Stringbean
I just got notification that you have sent me an message via "Auras" in the Kitchen, been in had a look, can't see anything, so if I can find it I'll get straight back to you, if you want to give me your e.mail address I'll reply straight back to you, I understood what you said about auras in one of your messages, they are the most amazingly bizzare and frightening things that can happen to a human being!!!!

Hope we get to caht mate!!

Cheers & LOL!!

Elaine xxx

[mooselips]

Here I am, with another question....

Before my hubby had his seizure a week ago, he was complaining of a metallic taste in his mouth earlier in the evening, say around 8 p.m. and we related it to the ice tea he was drinking. Then he had his seizure at 5:30 a.m. so I was just wondering if that could have been an aura?

Also, if you have an aura, I realize you don't always have a seizure to follow, but if you do, generally when does it come...like is there some sort of time frame?

Sorry about all these questions...
I'm learning here....

[RobinN]

Please don't worry about the questions. It would be a very boring party if there weren't the occasional question.

I have read that there are folks that experience metallic tastes and smells.

When looking through the book I mentioned above, it says:

"Sensory stimuli make up the largest category of methods of natural arrest, probably because many auras are experienced as distinct sensations. ...
If a seizure is preceded by a smell, for example, then another smell may arrest it. ...
If you experience taste or a gatric sensation as an aura, eating something, perhaps a peice of candy, would be a method to try. ...
Sounds both precipitate seizures and block their development. ...
Movement is a common way to arrest a seizure, perhaps because it is easily done on your own.

The important points here are to recognize your experience, to know your typical aura, and then to use your personal method not just once in a while but systematically.

This is where a journal is the best form of record keeping. It can help you to find ways to help yourself.

The sum of the research in natural arrest of seizures is that our bodies tell us something that most of us do not realize: We have and can exert much more control over our neurophysiological states than was once thought possible.

I do not believe that there is any time frame that is "typical". You might find that your husband has a schedule that become similar to his type of seizure. There again is the perfect reason to keep a journal/calendar. It will tell a story over a period of time.
It looks like with the time that your husband has between aura and seizure, that he might be a perfect candidate to try to stop the seizure by himself.

This book is a real valuable resource.

[mooselips]

Thank you,
I will order the book as soon as we get home.

[Sonia]

Hi I had a seizure last year and before the seizure started I had an aura, it started as feeling like deja vu, but much stronger like I had been in the exact place/situation before in a dream. It felt like I was supposed to know or do something. I also had a disgusting taste that I can not explain in my mouth, it tasted almost metallic and electrical and it felt sharp and spikey like a metal spike was going through my tongue. The whole thing made me feel like I was going to vomit. Then I blacked out and had a seizure. I also had an aura about a year before that and it was exactly the same but it was not followed by a seizure.