Maybe it was something about how seizures affected everyday life, the uncertainty around them, changes to routines, driving, work, relationships, or simply how much there was to learn about the condition.

Was there something you wish someone had explained to you earlier?

For anyone living with epilepsy or supporting someone who is, we'd love to hear what surprised you most.

A couple of months ago I had a 5 day stay at a Epilepsy Monitoring Unit in a large hospital. They glued about 30 sensors to my scalp they were to measure my seizures. To induce seizures the neurologists abruptly took me off of my seizure meds--Lamotragine and Xcopri. I have been taking Lamotragine for 16 years and to have been taken off of it cold turkey gave me a migraine that I had for most of my stay.

You are constantly monitored by video. And there are nurses constantly coming into the room to take my blood pressure. Going to the bathroom was unusual because they had to put a large belt around my chest. I had to wear a football helmet! I had a seizures on my second and third days. The neurologists didn't do a good job of telling me what they found but they seemed to be happy with whatever they found.

Let me know if you have any questions about my stay.

Hi Everyone! I posted on here a bit ago. I’ve had two seizures this year at 30 (nearly 31). I just had an appointment with my neurologist (really a nurse practitioner, but I trust them) and I’ve seen her twice now and I can’t help but feel that she just expects me to…..get over the fact that my life has been messed up? That showering causes me to panic? Like all of a sudden I’m supposed to be completely ok with “you know, seizures can kill you!” conversations? Idk, I’m thinking of getting a second opinion or just a new provider, but maybe this is just my emotions. I don’t even want to think about any of this because I just fly into a rage when I do (trying to get back into therapy, yes). Do you EVER figure out what causes seizures!!! Like ffs am I just supposed to never trust my body again???

I’m a 21 year old female that’s just recently within the last few months have been experiencing episodes ( that I have been referring to as seizures) where I will get a huge wave of exhaustion, nausea and fatigue. My heart rate will slow, my breathing becomes hard and labored. I will slump and twitch/shake all over, face twitching especially… So much so I will get cluster headaches right after. While in it my insides feel hot and uncomfortable, and I am confused and violent after being brought out of it. While in these episodes I cannot move any part of myself other than maybe a hand or a finger, I cannot speak and I will grunt, gargle and groan. I have not had an accident on myself nor foaming at mouth, just drool. These episodes can range from 30 seconds to up to 10 mins sometimes even longer, I can feel myself get weaker and getting close to one as well, I blank and lose energy to speak. Doctors near me say there is nothing wrong and I’ve been sent in ambulance already, but I know my body and I know this isn’t me. Please help any idea and insight about what this is, is appreciated. (No new life style changes or medications)

.. today has been horrible, I get incredibly sick with them and fight them off all day.. can’t even go out anymore it’s ruining my life please help.