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QueenieKP

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Ooh eee ooh eee ooh eee

Ok following on from my comments about being worshiped as oracles on another thread. I wondered if anyone had any interesting tales to share of experiences post ictaly when our brains are strangely altered that have ever made you think is that my brain being strangely altered or was is something else?

When I was first diagnosed at 17 I had a couple of TC's where I was totally alone and I came round to someone stroking my hair and the over powering smel of lily of the valley which was my late maternal grandmothers perfume.

At the time I was utterly convinced it was my dead nan coming to comfort me when I was alone.

Then I used to think if my brain cooties can make me smell oranges before a seizure is lily of the valley so much of a leap. Perhaps the sensation of hair stroking just a projection of comfort that my mind created.

But it is an interesting one to ponder?

Anyone else anything share. Anyone want a twiglet?

Q
 
My auras are very strange. I mostly have the Alice and Wonderland effect where I feel larger than my environment or much smaller. Then the things may appear very far away yet are right in front of me. Since I do not have a good sense of smell, when I do smell anything at all, I take note. Mostly I smell something equivalent to burning rubber. Then there is the feeling of sudden intense fear that comes out of no where and for no particular reason. I also suffer from atypical complicated classic migraine so it's difficult to know if these are migraine auras or seizure auras. Then I have another weird sensation that my brain is suddenly vibrating vigorously. Sometimes it gets soo intense I am not capable of doing anything until it passes.

I'll be interested in knowing what others have to share :)

Debbie
 
It never ceases to amaze me how our brains percieve things, or how widely our auras can differ.

Q
 
It depends on whether it's going to be a CP or a TC seizure. I can tell if I'm going into a TC seizure because I "hear" people calling me that are not there. One time I was walking in a park and I could feel the aura coming on. I swear I had heard a woman say something to me. I remember looking over my shoulder, but no one was there. I remember rushing over to the grassy area 'cause I knew I was fading fast. The next thing I remember, I was lying face down with a group of people standing over me. I heard someone saying, "Shouldn't we call 911?" I tried to raise my head, but it felt like a ton of bricks and I couldn't move for a while. Finally, a really kind, understanding woman who had witnessed seizures before gave me a ride home. She was the one who told them not to call 911 and knew what to do. I wish there were more people like that in this world!

That was just one of my many experiences with seizures and they all vary. Usually, mine are seeing/hearing things. I have TLE, stemming from the left side.
 
Cint ~ I, also have Temporal Lobe Epilepsy stemming from the left side. It's also the side I have abnormal endolymphpatic hydrops (Meniers).

At least these auras are good warning signs that got you to safety. Why wouldn't you want to go to the ER?

I had something weird happen today. I have noticed recently that my right thumb starts to twitch and with that my legs and arms start to feel like they are falling asleep and I feel horrible all over, followed by dizziness. Could this be an aura as well? I am currently not on anything to cover seizure control right now and these are starting to ramp up. I have to have my medication sent in the mail, which takes 10 days. So, I won't start on the Depakote until then.

Debbie

It depends on whether it's going to be a CP or a TC seizure. I can tell if I'm going into a TC seizure because I "hear" people calling me that are not there. One time I was walking in a park and I could feel the aura coming on. I swear I had heard a woman say something to me. I remember looking over my shoulder, but no one was there. I remember rushing over to the grassy area 'cause I knew I was fading fast. The next thing I remember, I was lying face down with a group of people standing over me. I heard someone saying, "Shouldn't we call 911?" I tried to raise my head, but it felt like a ton of bricks and I couldn't move for a while. Finally, a really kind, understanding woman who had witnessed seizures before gave me a ride home. She was the one who told them not to call 911 and knew what to do. I wish there were more people like that in this world!

That was just one of my many experiences with seizures and they all vary. Usually, mine are seeing/hearing things. I have TLE, stemming from the left side.
 
At least these auras are good warning signs that got you to safety. Why wouldn't you want to go to the ER?

Because I'm the one who has to pay for it and all they would have done once I was in the ER is to take my vitals and keep me for a few hours and then tell me to call my neurologist. Been there, done that.

I had something weird happen today. I have noticed recently that my right thumb starts to twitch and with that my legs and arms start to feel like they are falling asleep and I feel horrible all over, followed by dizziness. Could this be an aura as well?
Could be. Take note of it and how often it occurs and how long it lasts. Definitely let the dr. know when you see him/her.

Here is a link defining auras:
http://www.epilepsy.com/epilepsy/auras
 
I've only had one TC when I was alone in the middle of the night and I don't remember the post-ictal period.
Some of my auras have been weird- like the Alice in Wonderland effect. I have experienced that maybe 5 times in my life and I never knew it was an aura until a couple of years ago. Whenever it has happened it only lasted 2 or 3 seconds. It never freaked me out or anything, I'd just blink a few times and be like, "Whoa, that was weird!" It's kind of like when I've had deja-vu, which I haven't had in a really long time, but I used to get it pretty often. That also can be an aura, right?
The weird thing is that my seizures come from my frontal lobe, but aren't the deja-vu and AiW effect temporal lobe type of auras?
 
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