People have wondered what it feels like to be semi conscious while having a seizure and I would like to tell you how it has always felt for me.
I would get pins and needles in my right foot which would start to run up my leg. I would then loose balance and fall (on one occasion I fell face first on timber and damaged my face so badly that I needed an operation as teeth were embedded into my lips).
My feet and fists would clench up so tight and the pins and needles feeling would extend to the point where it would become really painful. All that I would then be waiting for would be the explosion. I would hear myself making a shrieking noise and then it would fully start. My body would start jerking hard. The pins and needles feeling in my right foot would hurt to a higher level as I jerked. On top of this I would now start to feel as though the right side of my brain was being heavily stabbed continuously and my right eye would close because of the pain. All I could do was pray that I would finally fall unconscious but it wouldn’t happen.
I would only be able to sleep once the seizure was over and it would usually take me a day and a half to recover especially the pain coming from the right side of my head, but alot of the time I wouldn’t have the luxury to fully recover before having another seizure like this again. I had these type of seizures for 6 years and would not wish them on anyone. A lot of the times while having these semi conscious seizures I would wonder if this would be the seizure that would finally take my life as the pain was too much to bear. At times I actually would want it to be so my suffering would end. I don’t want to scare anyone I just want to help you to understand how it feels to be conscious during a heavy grand mal seizure and that you may actually be grateful to be unconscious when having one.
I never knew if I would survive that period which started at puberty and I never knew if my seizures would change. I am really grateful that my seizures have changed and now I am at a point where I have an aura so I have enough time to put myself in a safe position and taking a multivitamin before having a seizure would surprisingly prevent it from happening.
I wish you all the best and would like to remind you to not allow your epilepsy to stop you from enjoying your life. Stay strong.