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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyEpilepsyTeam Member asked a question 💭
Southampton, UK

I had a bad seizure yesterday morning and bit my lip really badly. I emailed my epilepsy nurse to let her know as she is tracking them to see if there is a pattern. I was trying to explain that I had the normal de ja vu feeling I always get and this feeling of everything being a bit surreal almost. Its so strong though, its not a gradual feeling, its like suddenly a switch is put on and that feeling is just suddenly intense. Its just so hard to describe to someone.

January 15
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Answer Summary

Members opened up about how they experience seizure warnings, sharing that auras feel very different from person to person, ranging from a... Read more

Members opened up about how they experience seizure warnings, sharing that auras feel very different from person to person, ranging from a strong sense of deja vu and surreal feelings, to gut feelings of impending doom, hunger, headaches, or simply feeling 'weird' with no clear way to put it into words. Several members shared that they have no warning at all before their seizures, while others described recognizing patterns over time, like stress as a trigger or post-ictal exhaustion as a sign something happened. A recurring theme was the relief of finding others who understand how hard it is to describe these feelings, and the comfort of not feeling alone in the experience.

A MyEpilepsyTeam Member

The worst is waking up and not knowing what happened, in other words, you had a "black-out" seizure.

January 18
A MyEpilepsyTeam Member

Its interesting to hear everyone's experiences before and after a seizure. Ive always had that weird feeling before a seizure. Its just hard to explain it to someone. Thats why I kept it secret for so many years until I had a tonic clonic seizure.

January 17
A MyEpilepsyTeam Member

I NEVER know when seizures occur unless someone tells me
If I'm alone it may take a while for me to feel safe/ ok to be at home (don't know how long)🤷🏾‍♀️🙏🏿🙏🏿

September 23
A MyEpilepsyTeam Member

I get a intense feeling like I know something bad is going to happen that I can't stop then I start going into the epilepsy yell then I wake up and very emotional because I know what happened

January 18
A MyEpilepsyTeam Member

I get a stomach ache and a headache or a migraine right before. And at times I start cleaning like a mad man. I’m told that I get nasty before that I don’t realize.

January 17

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A MyEpilepsyTeam Member asked a question 💭
Denver, CO