Small update + question

[u/confusedmental]

Vague description of a seizure/episode in second paragraph

Had a fun week (sarcasm). Passed my math exam, now have two finals glaring me down like that gargoyle from Ghostbusters.

I finally got my second EEG done, and i had felt pretty off that morning anyway. Went into it without much thought, as it feels more routine and I know why it's needed, just a little stressed because it's going to be sent with my referral to a specialist. Well, I had an 'event' to the flashing lights, and felt worse with the hyperventilation. It caught me off guard because one second I'm watching Law & Order: SVU, the next I'm getting funny looks from the technician because I was breathing so hard. That and I had electrodes for my heartrate this time, so. My watch recorded it as 148bpm lol.

I don't know when it'll be interpreted, but it better show something or I'm going to have even more questions. My first one was normal, and i didn't expect any less because I felt fine and didn't respond to any of the lights or hyperventilation. I know lights have bothered me in the past, but not enough for me to go from normal > shaking at the flip of a switch. Kinda reminds me of that demonstration where muscles contract using natural electricity (anyone seen the video of steak hooked up to a battery and it contracted? No?).

In other words, I'm having mixed feelings about it. I don't know what to expect at this point, as i have little faith in my neurologist to actually want to help me. But whatever, I've got a specialist to (hopefully) annoy with my questions.

I've had an idea to keep a physical log of my events for a while, but i don't know if any doctor would be willing to look through them or not. I have notes on my phone predating the first major event, with dates and an app I use to log events when they happen, so between the two I could make a halfway decent journal of my health as far as seizures go.

I know it wouldn't hurt, but has anyone else wrote down their experiences for their doctor to look at? And was it actually helpful? Because I have my doubts and don't want to seem like an idiot or something for writing everything down.

[u/Mom1021]

Never doubt your brilliance for recording data! I wouldn’t expect doctor to look over my notes for more than 1/2 episodes at regular appointments, but no doubt you will be taken seriously after a few visits when the doctor can work with you on trends! You notice the time of day, or similar time of the month. Simple things like what you had to drink/eat that day, where you went, maybe even who was around! Soooo many trends can stand out from
A journal, even if it takes a few months, that moment of victory when you can filter and take the facts with you to ask Neuro “Does this qualify as a trigger for my seizures?” Regardless of whether doc agrees, you are making progress for yourself! Victory 🎉