Hi Anna ---
Some neuros also need to be reminded that a positive EEG can help rule in an epilepsy diagnosis, but a
negative one can't rule epilepsy out.
Do you keep detailed records of your symptoms (including when they occur, what form they take, and how long they last)? That can be very helpful for a neuro making a diagnosis on clinical symptoms.
Also, was your EEG sleep-deprived? A sleep-deprived EEG is more likely to reveal abnormal brainwaves. Also helpful might be an overnight EEG or a multi-day one.
Hey, thanks for your reply.
I had a second EEG at a second opinion neuro Thursday. I saw her because she could contact my psychiatrist if she was under the impression it was psychological. Honestly, it went very well! At least on the human side of things. Epilepsy wise I am no wiser. The EEG nurse used strobe lights. Last thing I remember after she started them was my eyelids starting to flutter. I don't remember getting out of the EEG room.
My neurologist there saw nothing abnormal on the EEG. She said it was spotless in fact, which is weird when I'm taking a heavy combo of stimulants for ADHD. But it doesn't seem that they precipitate seizures or seizure activity, and the EEG confirmed that again.
Both EEG's were normal, non sleep deprived ones. I might suggest her a sleep deprived one but I'd have to find transit since the hospital is about two hours by bus away from my home. My brain is kind of known to play tricks. Some of my staring episodes look just enough like I'm conscious so no one even notices.
I don't even know if I have inter-ictal activity, or if they'll ever catch a seizure on the EEG that's bad enough to show up. I know that"in the wild" seizures where I am so overwhelmed by the seizure activity that I can't respond anymore or am genuinely "out of action" aren't as common as the ones where I am still mostly conscious and reactive, just a little slower.
I know that on my first EEG I might've had a seizure. It included a feeling of size disproportion (since my eyes were closed, my brain had no other reference point to stop the "spark"(eyes) from "lighting" the "whole fire" (seizure)), being glued to the seat, and not being able to think clearly at all; as if my head was suddenly full of sand.
I remember that Thursday (second EEG) I was sent out the door very quickly after the EEG and I suppose I was still dazed enough that I missed my bus. The bus just drove by. I could "see" the number was the one I needed. I just... failed to wave or respond?
She referred me for video EEG at the university hospital in Ghent. Perhaps those people being used to epilepsy for more complex cases (like mine apparently) they might even be able to judge whether these milder focal seizures would show up on an EEG at all...
I don't want to be rude to my neurologist. The second one was very caring, she even told me that besides epilepsy there are many other things. I even felt safe enough to tell her I was scared, and that I didn't know or feel convinced that I have epilepsy myself; that I'm just so unsure and scared because so many things keep happening.
By now, I have totally lost track of my post. I forgot!
Are there any other things you think I could suggest to make sure I don't get unnecessarily written of as psychogenic seizures?
- Do a video EEG
- Do a sleep deprived EEG
- Keep a log book
- Sort my symptoms list
- Possibly get conflicting issues diagnosed to eliminate other issues
That said, yes. I do have a list of symptoms I wrote down. But I'm afraid some of those might not be epilepsy // I didn't put them down to be. I just wrote down episodes; hoping she could shed light on what could or couldn't be epilepsy. Neuro said that the symptom list doesn't sound like epilepsy; so perhaps there's too much 'junk'. If you want, send me a DM and I can send the list. I just don't want to have it straight out on the internet.
I did keep a logbook of my seizures in the past but my cognitive issues seem to just have gotten bad enough I can't keep up with it. I keep forgetting seizures; keep feeling as if it's just inconsistent. What do I count as a seizure diary entry? What do I discard? What's real, what's just in my head? I don't know anymore.
Edit: I've gotten so many issues racked up from always waiting too long that I'm just not sure anymore what I do and don't have. It's kind of my own fault. I could've seen a doctor when I was 8, the earliest I remember having these episodes.
Cheers,
Anna
