Tell me all about your auras?

[Elaine H]

Hi Guys

As you will know, I am writing/written a book about my epilepsy and my experiences with it. I am researching people's auras. Do you get a warning, do you see anything, feel anything, do you enjoy them, do they terrify you like they do me, do you have a taste in the mouth or a strange smell, and do you sometimes have Secondary Generalised activity afterwards, or does it just come and go? Tell me, does anyone find them, in a crazy kind of way, enjoyable? I have recently read about someone who found them almost "spiritual religious experiences" I can sort of relate to this, but on the whole, they absolutely terrify me!

Also folks, are they more likely to happen at certain times of the day, with me, it;s just after waking up, and is there anything in particular that starts them off? Also, can you, like me, almost think yourself out of them? I would love to hear from you all, I'm feeling a bit down today, and just hope that we can get away to a hot sunny country in November, I don't think it's likely to happen here in the UK!! Hope you are all ok, I've had a few problems, but still smiling!!

Lotsalove

Lainey xx

[Nakamova]

Hay Elain --

No auras for me now, though I had them migraine-style before I ever had seizures. Flashing lights before my eyes, no matter where I'd look. Not very interesting I'm afraid, but I'm sure you'll get some good stuff from the others here.

I'm about to head off for a long weekend by the Lake, to catch the last swim of summer.

Be well,
Nakamova

[batman]

Hello Elaine, I hope you will be successful with writing a book about your experiences with epilepsy. Not only is an aura the warning, it is a seizure itself. It is a simple partial seizure. If I'm understanding it clearly, if a simple partial seizure advances into either a complex partial seizure and or a tonic clonic seizure, then the simple partial seizure will be labeled as being an aura, the warning. Some doctors prefer to use the words "focal seizures" instead of "partial seizures". I myself haven't had any secondarily generalized tonic clonic seizures since around 1997. However, I continue to have simple partial seizures, some of which end up advancing into complex partial seizures. When my simple partial seizures take place, depending on the strength of the seizure itself, I have feelings occurring along the right side of my body that are similar as if you were to bump your elbow (your funny bone) on something hard such as a table or desktop. I've also had feelings as if I were to be traveling along an escalator, elevator, or a boat out on the water, or even feelings as if I were to be falling down, when in fact I am physically standing on solid ground or sitting in a chair. For more examples, try imagine having two clear drinking glasses or two empty soda bottles placed in the position up against your eyes as if you were looking through a set of binoculars; or imagine the feelings as if you were in a well lit room and all of a sudden all the lights go out; or think about the feelings you experience immediately after the flash on the camera goes off when you're having your picture taken. Now try to imagine all of these feelings taking place in a dark room with a blindfold wrapped around your eyes. It's like your brain is playing tricks on you whenever the seizure is actually taking place.

There have been times when my simple partial seizures take place, and if they are strong enough, I realized that I need to quickly place my body into a horizontal position simply because the simple partial seizure is most likely going to advance into a complex partial seizure. But if the simple partial seizure is short and weak, I'm not going to worry about it. There have also been times when I've enjoyed the seizure as if they were some type of spiritual message. Maybe that's the example of "déjà vu".

For all of the years I've experienced different types of seizures, I have continuously told my doctors that my seizures will occur approximately 6 or more hours after I had eaten a meal. But with pretty much everything I have told my doctors, I'm really not getting anywhere. However, just a few months ago I became aware of what gluten can do to people. And with the changes I've made in my diet by trying to avoid products that contain gluten, my seizures have decreased in frequency. So I now know that gluten has been triggering my seizures for many, many years.

[dfwtexas]

Hi Elaine!
I have a few different auras
I often would get "yawning attacks", where I yawn uncontrollable for several minutes before it hits. I also get what I call "dream sequence" aura...it's like when they show a dream sequence on TV show...everything gets very wavy and out of focus. Most of my aura are visual (I think because they are photosenstive related)...my eyes have trouble focusing and the next thing is my eyes are rolling to the back of my head and the seizure hits.
Hope you are doing better soon.
jenn

[vapour]

Always tingling/prickling in most areas of my body. I feel like I am falling into myself deep down, nausea, feeling spacey my breathing feels strange, almost have to make an effort.

Sometimes I will get the sound of a high ringtone. Or fear...sometimes I wonder if these are seizures though ? I think its hard to tell with simple partial the difference between and aura and the seizure.

[Belinda5000]

Hi Elaine,

Today when I have an aura I just get a sensation in my head.

Quite a few years back though lights would get brighter ,sound would get louder
and colors would get brighter.


Belinda