@A MyEpilepsyTeam Member
I’ve had Temporal Lobe Epilepsy for over 30 years. I’ve always been able to get right back to whatever I was doing before the seizure. I never know when I have a seizure.

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A MyEpile...

After an all-night focal impaired awareness seizure, (my first diagnosis, obtained by EEG), I woke up in the hospital. I worked in that very hospital in Respiratory Therapy back in the 80's, so I'm familiar with the various scenarios one may encounter when walking into a patient's room. I didn't have my glasses on, so I couldn't see well, but groggy as hell, I noticed towels taped to my bedrails (a seizure precaution). I knew I must have had a seizure. I was hooked up to telemetry (heart/breathing/blood pressure monitors), I felt the EEG leads in my hair, I had something infusing by IV, but couldn't read the sticker on the IV pump, and the room was dark. I started to struggle to slide up in bed and discovered that they had put a waste restraint on me. I was in and out at this point.

They were infusing Keppra, which I eventually found out that I couldn't tolerate (I had Kepp-rage). I couldn't reach the knot of the waist restraint and started fighting to get loose. This set off all the telemetry alarms in the nurse's station, but I was still going in and out of the seizure. I guess I went out again, and when I woke up I was still really confused, the room was spinning, but this time I was so full of "bar-fight" adrenalin that I raged. My wife said she was there, she verified all this, but I don't remember anyone else being in the room.

I didn't know how long I was out, and I started trying to make sense of it, but I couldn't. I don't remember paramedics or an ambulance ride... the last thing I remembered doing was going to bed at home. Now I'm somewhere dark, tied down, confused, scared, flooded with emotion and ready to fight.

Here I only remember some fragmented pieces of what happened. The neurosurgeon stepped out of the dark by the foot of the bed, babbling some garbled chatter, then said something cheery like "Well, how are you feeling this morning my friend?" I heatedly told him "I don't know who the f*ck you are, but you're not my friend", and it skyrocketed from there. My wife said I completely lost it, started banging the bedrails, fighting the restraint, and I kept calling him over ("Come closer, I can't hear you.") so I could get my hands on him. He wouldn't come near me. I remember that I threatened to tear his head off and sh*t in his lungs... oh, it got really bad, I was exploding.

Instead of recognizing this as post-ictal behavior, he started verbally ripping on me, then garbled something about me needing brain surgery and stomped out of the room, followed by a few residents (it's a teaching hospital) who I didn't even notice until then. I must have been given a sedative at that point. Next thing I knew, I was at home. I spent the next three months so overmedicated I was non-functional, but my seizures were controlled. My wife managed to get me to an epileptologist for a second opinion, the best break I got out of the whole experience. It took him months to straighten me out. Seizure free since May 2018.

I have TLE and I haven't been told that I go on a rage, but I'm very irritable and short fused sometimes afterwards. Sometimes I'm just wiped and need to sleep for long periods of time. There are other times i go right back to what i was doing totally unaware that a seizure took place. I also have focal aware seizures. My seizures are more common in the left lobe, but happen in the right lobe too.

I've also had my rt hippocampus removed but I guess it didn't get the whole thing. I have another another appointment with the surgeon in March.

I have seizures on my left temporal lobe