I struggle with my mental health and my seizure activity doesn't show up on EEG. I have full tonic clonic seizures, I lose consciousness and seize for about 2 minutes typically. I dissociate first, You could ask me my name and I would not be able to answer. Its short bursts of dissociation almost, where I can be talking and then lose what I'm saying and the thought just shuts off entirely and then I will regain awareness after a bit, usually have multiple short dissociative episodes, sometimes… read more
@A MyEpilepsyTeam Member Thanks for answering. My seizures are pretty much under control, Its been about a year since my last grand mal although I now struggle with my dissociative episodes in the absence of seizures much more frequently which I have been working on with a therapist. If I start having seizures frequently again you're totally right, that would be a lot of help for me. I haven't done more than a 24 hour study before and I don't have the money to do the extended sleep study at the moment especially since it doesn't seem to be that urgent because my seizures are 'under control' but I still live in fear of seizures, I don't think you ever really lose that fear. Since Im not having seizures often Im mostly just looking if theres someone who can relate to the combination of dissociating and seizures to talk to and hear if anyone has similar feelings and experiences to me. Thanks again for your advice and response! I appreciate your time, ps glad to hear yours are under control as well.
@A MyEpilepsyTeam Member Thats pretty much how i feel, just disconnected from my body, unable to speak or process whats happening. I can't respond to anything or sometimes will get an unconscious response and say something that makes no sense. My episodes of aware blacking out last 15 seconds or so and seizures have lasted about 2 min. but sometimes I have blacked out without knowing it and not knowing time has passed. but after a grand mal I have that auto pilot feeling for days... Like I am a passenger in my body. Friends and family have said before my blackouts or seizures i get a deer in headlights look as well and keep talking and then randomly stopping talking as if i hadnt just started a sentence. Usually paired with a migraine and double vision beforehand. Its quite controlled now I am doing really well, thanks so much for your response. Its so interesting hearing about others similar experiences.
@A MyEpilepsyTeam Member i dont have grand mals since my surgery but still sensory seizures. Before my surgery i had those moments you described where i was hearing ppl talk and i could see them but i couldnt control my body or respond. Idk if it was an aura or similar to what you have. I would get a deer in the headlights look i guess ive been told and drop to the floor. I do remember coming out of em with that same symptoms. Im noticing now for the past years getting increasingly worse it feels like my body goes on auto pilot or something and ill go fill my water bottle, i can see my hands doing it, to the top not spilling. But im not making me do it. Im here if you wanna talk.
@A MyEpilepsyTeam Member , What kind of EEGs have you had? My seizures are pretty much under control with the help of my medicine & so they’re not as severe as many of our team members on here or as bad as my Dad’s were cause before he passed away he dealt with really bad grand mal seizures for years. But a lot of times in a regular in office EEG my results have come back normal but I’ve had seizures since the 2nd grade after hitting my head on the monkey bars but no one knows for sure if I got them from that, my Dad or both. But I’ve had 2 at home EEGs & one of those was an at home video & you’d know I didn’t have a seizure that weekend while doing the video EEG at home but a few days later I did! The results for that one showed I have left tempor lobe seizures or something like that, it’s been a few years & so I don’t remember the exact wording of the results. The other was done last year but it was back when I was still shaking really bad & we were trying to find out what was going on & I had to push this button anytime I shook. Right now I’m dealing with saying & hollering words out of the blue. So I don’t think the Neurology Nurse Practitioner who had me do that test ever called with the results & we didn’t like the lady & didn’t go back. Then in November I got a new Neurologist who had me do a 5 day in hospital Video EEG & that showed I mostly have Focalized seizures on the left side of my brain but that I also have Generalized seizure activity sometimes also. The Neurologist said though I never had any seizures, that this seizure activity showed up when I slept. That’s when most of seizures have a better chance at occurring is when I’m sleeping. So maybe doing a 5 to 7 day in hospital Video EEG might help, if you have insurance cause otherwise it’s bound to be expensive. Good luck. Your friend in Texas, Becky