When I was having seizures, most of them I was unaware of (complex partial seizures, generalized full seizures or nocturnal seizures). Close friends and family members who recognized me having a seizure would write down the details for me and let me know later on. One of my sisters will go with me to my appointment with my neurologist (for the in person visit --every other year-- I need the ride) or my sister, Celeste, who I and our parents live with, will go on my virtual appointment with my neurologist to provide details that I can't provide about any seizures that I had. Hopefully, I can stay in this seizure-free state for a very long time, but otherwise, I need others to provide the information for my neurologist.

I started asking what did I do--> I NEVER know what happened & may be doing something different than what I remember

It's not unusual for you to not remember. Yes, it's frustrating and frightening. I don't remember what happened during any of my seizures and I had a automobile accident. I've have one friend that understands and knows when I'm having bad days with auras I cannot go anywhere because I think I'm acting normal and I am not... I've asked her to get me home if I begin. The best thing I did was get my daughter to join this site so can read what others are going through and saying. It's such a battle and I ready now to face it. I wasn't at the first of my diagnosis. It's part of the condition. 💜

Not necessarily. I rarely remembered anything of the seizure itself, and really have to work hard to recover my memory of the time before it. I’ve lost entire afternoons, hours of awareness as a result. I too have to rely on other people’s accounts. But if a seizure is aware, I don’t know, I have in the past.

@A MyEpilepsyTeam Member,
From my point of view, it varies from person to person. We each recognize that our experiences are a little different than others, but we understand that we have similar experiences.
My seizures are frustrating to me, in and of themselves. I have Complex Partial Seizures with Impairment. So I don’t remember having a seizure 95% of the time. 4% is fuzzy and 1% I was actually aware. For me, being aware is scary. Fuzzy memories bother me a lot too. It’s like a bad dream or playing blind man’s bluff. Everything gets turned around and is hard to focus on any one thing.
About a week ago, I had went to breakfast with a friend, my friend said I had asked them to take me to the Library. I don’t recall being there at the Library. I was told in the Hospital, that I supposedly had a seizure. The ER doctor didn’t even see me. I have no memory of the library, the EMS, or being treated at the hospital. Only when I became aware, I was told that they were releasing me. From what I was told, I had been in the ER for almost 4 hours. I called 3 different people to get a ride home. My dad finally answered. I got a ride home to my apartment and my dad left. I slept the rest of the day away. Awoke for a few hours and then slept all night.
The point is… I was stressed for not remembering, but made a few calls to ask what happened. I log what those people said. I read over it several times. This helps put a memory in a place that I know nothing about. Everything I wrote about, happened because others shared what they had seen. . It helps me move forward instead of focusing on what I missed. Of course I don’t always have that help. All I can do is write down what happens before I started feeling bad and write down how I feel after I wake up. The time in between I can’t control. When that happens, I breathe through the stress of not remembering and focus on
What I can do to move forward. It isn’t easy, but it is manageable.
I hope this helps. 💝

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