Spatial awareness aura...

[Nicole1]

Does anyone else have this type of aura?Where it suddenly takes over you and your spatial awareness? Like a wave? When it comes, there is nothing you can do to prevent it, it feels so overwhelming and powerful like, you have been here and done this, in this exact moment, that if anything moves, it will spring a seizure into action, even though in these few seconds, you know the inevitable is going to happen anyway?? I was diagnosed with frontal and temporal lobe epilepsy 7 years ago and i'm still finding out stuff. It really does boggle the mind... also helps to know you are not alone. However long a sufferer you have been.

[BaronC]

Oh yes, you just described my auras perfectly, 100% Have a look at my film on youtube, you may just nod in agreement...

youtu.be/i3_ZQkholAg(Not working as expected?)

Hoping you're OK now

Andy

[Sereice in reply to BaronC]

Hi

Iv just watched ur video, pretty scary & made me Abit sad, but thankyou for sharing the truth. I haven't experienced anything like that. I did 2posts the aura & human guinea pig. However yesterday I did experience the worst part of my seizure the aura normally a few seconds, extended for few hours. I just feel like that feeling when you go down in a lift & lookin over my shoulder cause I feel some1 is behind me I was terrified! This is since my new meds, in my eyes there makin it worse as, I only had 1 seizure every 6.5 wks without meds & then awake 15mins later feeling normal. So a extended aura longer than a whole seizure & all the other side effects, for a extra 2months...

I give up!!!

[BaronC in reply to Sereice]

Talk to your doc, asap. The first med I was put on, Epilim genuinely made me feel like I was going insane, it was horrifying. There are many, many other options out there...

[Sereice in reply to BaronC]

Hi

I have tried many. This is longest & 1st time iv been able to reach theraputic dose. Im on Briviact (new kid on the Block, Keppras brother) But wit less side effects, but thats because I can't tolerate them.

I want surgery & they keep sayin Id still need b on a AED! I don't believe this fully I think there is surgery for ppl who are intolerant?? Maybe it's also cause I only have 1 seizure every 6wks. However it still messed up my job & life 😕 I Prob need 2 go 2 America haha! But I hav a appointment next wk & wil question my neurologist.

Thx 4 replying

[BaronC in reply to Sereice]

No thanks needed, it's my pleasure.

The key is to not give up, keep pestering doctors and specialist. If you're not happy, they need to know. If you want change, persist in asking for it. It's your health, keep fighting...

[Nicole1]

Thankyou for replying, that was exactly what I needed to hear. Makes me feel like i'm not insane and alone in feeling like this. I get so many different auras, tastes, smells, but this one is the most often and terrifying! Thankyou again.

[Sereice in reply to Nicole1]

Hi

I felt alone also. I did a post (The Aura) & people have added there experiences. I was surprised at many. Maybe have a look.

[Nicole1 in reply to Sereice]

Thankyou 👍

[Slothlike]

My aura tends to be a little out of body. Suddenly my senses seem focussed (eyes, smell) but weirdly sound is muted? Then the eyes start going and the waves of dread/fear like the end of the world. I've never experienced fear like this ..... quite unique and primal. It's difficult to describe to others. I started having seizures as a kid and have been controlled since the 80's. I haven't lost the fear dread of having a seizure though and get the occasional warning sign.

[Sereice]

Hmmmm

I was wondering if people ever loose that fear? I would have thought a year or 2, when your supposed to be able to get back in your car, would be a confidence booster? What is so sad thought is there is quite a few people on here saying they came back again years later....

[Hartleyhannah]

Hi Nicole my brother suffering with something very similar, his medication doesn't help he's been having seizures from the age of 13 he's now 23 and what the doctors call drop attacks when something shocks him he will just fall that could just be a knock at the door. he also gets poorly every morning he can't control his breathing. He gets frustrated and angry with it. maybe reading your words will help your not alone x

[Nicole1 in reply to Hartleyhannah]

Sounds possibly like panic attacks your brother could be having? Or is he having seizures too? I sympathise with us all. Just wish we could all have some answers. Best wishes to you and your brother x

[Hartleyhannah in reply to Nicole1]

He has seizures and thank you best of luck Nicole x