epilepsy (not feeling sick enough) + ocd

Hi lala789, I too have epilepsy, long story but was dx when I was 16, and now in my early 50s. My issue is that it’s embarrassing (I know it isn’t but feel it is, thus the vicious cycle that is OCD) and I am terrified to have a seizure in front of others. I have struggled with this my entire life, and whereas I don’t think people believe me, I think others think that it isn’t as bad as it is. I can relate to this. Some of my seizures were visible and some weren’t. I am also new to the site and am just diving into things that I have ruminated about. But you should never doubt your seizures, even if you only have them at night and they aren’t visible. You don’t owe anyone an explanation for your health issues. Rest assured if they are your friends or people you care about they will believe you. Easier said than done, and I need to take my own advice. But we are so hard on ourselves and don’t allow grace. I get it though. Hang in there!

I didn’t have seizures for 4 or 5 years to the extent that I questioned whether I was ever diagnosed after getting treated like I was being an idiot and dramatic by a new neurologist (6 years ago) and getting diagnosed with vasovagal syncope a week later. Got my eyes dilated a week ago and something either set off seizure or syncope. Either way it was involuntary so I know I’m not tricking people. But I’ve only ever had absence seizures before, so I understand how you feel. What’s wild about it is that I’d finally overcome my driving anxiety/aversion only to be told I can’t drive for 6 months. But my most recent follow up with neuro, he was really understanding but also mentioned I was not a good patient because I quit taking anti-seizure meds due to cost and never followed up after being told I didn’t have epilepsy. I wanted to argue that I had no reason to follow up but I didn’t see the point. (He made this criticism after realizing I had ten years to recap for him and unreliable memory in a lot of cases because most of my seizure activity was prevalent in my youth and I had pretty much forgotten that seizures were a part of my medical history) I think I’m going to just choose to listen to the newest neurologist, because even though it was a blow to my pride, he made sure to have me scheduled for heart-related stuff even though it’s not his specialty because of the possibility of syncope. It seems like he knows what he’s doing and actually cares about finding out what’s wrong.