Finding out it's official stinks since that means you have it (confirmed). However, I went about 10 years before I could FINALLY get something on paper to verify (PROVE!) that I had it. I was actually (sounds crazy) uplifted when they FINALLY confirmed what was going on and could focus where it was happening etc. What's worse than having a condition? Not being able to confirm what it is (and therefore focus closer on it). Hard to heal the patient when you don't know "exactly" what he/she has.
Plus this helped my case that much more that I was disabled and makes it harder for me to be employed. I ended up biting the bullet and got a lawyer, but I think I made her case much, much easier to prove once I got that abnormal EEG. Well he "CLAIMS" that he has epilepsy, but he has nothing but normal EEGs... denied...
Again, stinks that you have it, but at least you can feel more comfortable knowing what you're dealing with.
If you don't mind sharing, what are some of your symptoms? Auras? "Weird" feelings? Fear? Complex/partial/grand mal?
I usually start feeling like I’m there, but I can't really respond. Then I blank out mentally and stop talking and/or start laughing (small soft chuckle). Then go into a blank stare and come out of it within 60 seconds. Then I come out of it a little lightheaded with a hangover from the weird feeling. Not much memory of my actions during the time. I mainly know I've had one when I get that feeling. 99% of the time I can confirm it with my mom. Occasionally I'll have a complex seizure where all of this happens, but then I'll also get up and start walking around for no reason. I spent many hours trying to research these conditions, but it was VERY hard to describe in Google without getting 100 advertisements about helping with other things. I finally found this site after epilepsy sounding like the closest thing to my descriptions. Before that I didn't even know how to spell epilepsy not to mention the different types of seizures lol.
It's been official for over 20 years...perhaps my post didn't sound so much that way. I just don't like doing the tests, getting the results, it never helps my hopes of anything much...except for the one time I actually had a normal EEG and didn't have to be on medications and then COVID...
I was diagnosed in about a year when I was a child because the teacher at school was seeing this go on and my parents had set aside times to talk to my teacher, record down what was going on in class so they could tell the doctor. My teacher was cooperative on that part and then the first EEG I ever had - abnormal, so perhaps that is why it was dignosed as quickly as it was. Perhaps the pediatrician was knowing what to look for, too.
I remember my mom begging to homeschool me, but all I wanted to do was be with my friends. Thinking back on it, if I had a do-over, I would've been homeschooled. It probably would've saved myself so much humiliation in the long run.
The word "aura" is kind of foreign to me because I don't generally hadn't recognized any specific auras throughout my lifetime. I felt like I had no warnings as I would usually wake up out of it and then the onset was slower so it would get worse in the day and that "being out of it" state could last all day long and then I'd suddenly snap out of it (usually after I got home from school and then didn't know how to do my homework because I didn't remember the lectures and how much of a fool I made out of myself).
Since having COVID, I notice a few more aura-like things - waves of nausea, extreme dizziness, eyes start losing focus (seeing double, feel like I'm looking through a fish bowl), pins/needles type feelings in my hands (I have caught myself grabbing one hand and the other as if I'm massaging them. Almost like I can't help it, or I'm trying to soothe the pins and needles type feeling). The only fear/sense of doom thing I have had was like a month before I got COVID and had seizures that were one after the next and weren't stopping. It was a miserable time almost a year ago now (it's been hard with the approaching holidays to cope with all the recalls of that time).
When I was a kid, they were saying it was grand mal problems - just out of it and super confused with what was going on - forgetting super basic info and things like that. During my first week of high school, I had epilepsy at school and it happened many times during freshman year. During the first month of school, I was playing catch up on all of my assignments, dealing with teachers that apparently didn't want to give me all the time I needed per school policy, and all of that. Worst year of high school. From then on, I was diagnosed with generalized epilepsy and it's still the diagnosis today. Although, it seems I'll wake up, feel super out of it, or before I go to bed, feel out of it, and then that progresses and ends up in epilepsy.
I think only once did I have slurred speech. I knew what I wanted to say, but my parents couldn't understand. Talk about frustrating. One time my body temperature fell too low.
The sad thing for me is that when I recover, the memories all flood back. Of course if I was unconscious, I won't remember those points, but if I was awake and acting like an idiot because of my lack of awareness in that time, I'll remember it. It was always a hassle to felt like I had to apologize to people the next day at school - friends and such. The nurse would notify my teacher and I would start crying or getting angry because I knew the school year wasn't going to be the same. Some teachers I couldn't ask a question without them asking, "Are you okay?!" So I stopped asking questions to those teachers, it was embarrassing...
I think there was one teacher that stood out to me. If I said, "I wasn't feeling...right...in class yesterday. I don't remember the assignment." He'd just say, "No problem at all. Don't worry about that assignment. Just focus on what we did in class today." I mean, he'd lower my stress instead of increase it. Such a wonderful teacher, I was so happy that I had him for 2 years for English class in high school. If I wasn't all there, I think he could kind of tell, but wouldn't call it out in front of the class. If I was lost with where we were at in my text book, he'd be lecturing while turning the pages in my book to the right place. I wish more teachers were honestly like that when it came to students with seizures...
Sorry to hear that it took so long to reach your diagnosis. In the medical world, it can be like that, and sometimes EEG's don't come back indicative of any problem. I'm glad you eventually got the diagnosis you needed, though.