What Are Your Auras Like? And If You've Had An RNS Or VNS Or Other Surgery Do You Still Have Them? | MyEpilepsyTeam

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What Are Your Auras Like? And If You've Had An RNS Or VNS Or Other Surgery Do You Still Have Them?
A MyEpilepsyTeam Member asked a question 💭

My seizures are mostly controlled, but I still have auras. Mine might last for hours of feeling clumsy, kinda slow, a heavy or twitchy left hand at times, and anxiety, maybe claustrophobia. Kind of upset I still have them since it's been almost a year since the RNS was placed. I'd really like to know more about different peoples auras

posted March 29, 2019
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A MyEpilepsyTeam Member

I have these really odd auras, sometimes they generalize into convulsions but they always start out the same, I get a weird feeling behind my eyes, I almost feel like something bad is about to happen, I get a type of butterflies in my stomach, if the butterflies were sinister. Sometimes I snap out of it, sometimes I wake up hours later on the floor, or the couch if I'm lucky enough to be around my wife at the time

posted April 4, 2019
A MyEpilepsyTeam Member

Thank you for all your responses! It's amazing how diverse aura feelings are. I can relate to many of these but some are scary! @A MyEpilepsyTeam Member Wow! That is something else to "sleepwalk" per se for an aura, not fun!
What I don't like is sometimes my auras are so distracting/ I'm so confused during them that I have to leave work early. Then I get home and nothing happens. But, @A MyEpilepsyTeam Member, you have the right attitude! It's part of our lives and we have to accept it as that. Thanks!

posted April 1, 2019 (edited)
A MyEpilepsyTeam Member

Hi ladies and gents, new to the app. My auras, i kinda wiggle my jaw back and forth and i trip over EVERYTHING. Im no dr but since i told my dr about it hes adjusted my meds and they have gone away. I know for some people its not that simple. Maybe, or you might have already give the doc a call and see if he/can do a adjustment. Auras SUCK.

posted April 1, 2019
A MyEpilepsyTeam Member

Yes. Still have them. They haven't changed.
Vns a couple years now... Really bad,knee buckling nausea. But only last a minute. Followed by the "taste of a penny."
Sometimes a random smell. So out of place that I ask others,"you smell that?" If I take just me, I'm in trouble.
Time to swipe the magnet.

posted March 30, 2019
A MyEpilepsyTeam Member

Before my VNS surgery I was having about 5 seizures in a week. VNS surgery has reduced my seizures greatly.

posted March 30, 2019

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