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A MyEpilepsyTeam Member asked a question 💭
Fairbanks, AK

I've been trying to explain this for years to my docs, fortunately the one I see now accepts that it is, but doesn't understand it. I can feel my brain before going into a seizure, its been happening a long time and its my main aura, it disrupts my ability to function.. I can feel my brain messing up. When I'm not having seizures I'm still aware of my brain but I've learned to ignore it because its okay. I know that sounds weird.

May 6, 2017
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A MyEpilepsyTeam Member

me too, I get that little time to go somewhere I can fall down if I need to or sit in a good place

May 15, 2017
A MyEpilepsyTeam Member

Yes I feel auras and can get myself safe.

May 14, 2017
A MyEpilepsyTeam Member

I also have auras with my seizures.with mine I get a dejavu feeling.Its like having the same dream everytime.I know its the same dream but if you asked me what the dream is about I wouldn't be able to tell you.things around me get distorted looking.I get a sensation in my stomach that you get right before you go down a roller coaster.When I have my seizure if im talking to someone there's a few seconds when I stop talking.my seizures come out of the blue only about 98% of the time they just some out of the blue when I'm not expecting them.I've had them walking in the store,I've had them talking on the phone,I've had them when sitting at a table eating.sometimes when I'm overly tired I may have a seizure,or when I'm stressed.in the 6 to 8 months I've been getting cluster seizures where I have one after the other.so even though I'm on med for the seizures they will never be completely controlled.

November 24, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member I am seizure free but I was explaining what my aura used to be like as it's hard to put into words. Uncertainty about my job doesn't help new contract every year. Tiredness doesn't help either. Life is a bit miserable right now. It will get better it's a phase

September 17, 2017
A MyEpilepsyTeam Member

Standing talking to someone feels like a twitch to me but to someone looking on maybe my body jerks for a second. Asking the person what we're we talking about? Ah I've regaining my thoughts until the next twitch. It keeps happening until I don't regain thoughts anymore. If I don't sit down I'll fall down. The head bleeds very profusely. It's best to put the person in the recovery position after the seizure. They can't see the amount of blood around them from a not always serious head wound. I know from first hand how much of the floor you can see in the recovery position. Only what's in your eye line. I try to move I guess it's serious if there are lots of people around looking

September 15, 2017

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A MyEpilepsyTeam Member asked a question 💭