u/Whole-Big-3274

Hi Everyone! I’ve been on here a few times since March maybe. I’m hoping this is the end of the seizure saga of my life. I found out yesterday that my shunt for hydrocephalus (too much water on the brain) has been broken since god knows when and my body was trying to fix it and now i might have to have surgery to fix it. And this wouldn’t have been discovered without the seizure until i was in an emergency. And STILL this is unrelated to the seizure, but I feel like it’s helped me make some sort of peace with it. I’m still waiting on my EEG results though technically. Maybe I’ll post if that shows anything, but idk. It fell off a little more than half way through the test, so I might have to consider getting another. Thanks for all the support!

Just got out of a neurosurgeon appointment. My shunt is apparently broken and has BEEN broken for years, but it’s still functional. My neurosurgeon “60% recommends” surgery to prevent a future problem, but it’s ultimately optional. I have no idea how to decide that, I was a minor last time I had a shunt revision and it wasn’t presented as an option. It’s also not lost on me that this thing acts up every 14 years and it’s year 14 😒😒😒

Hi Everyone!

Just joining now because I was finally able to join Prolific after being waitlisted before. However, no matter WHAT I do, I keep getting a “403 Forbidden” message when I try to log in on my laptop or follow links from my email. My phone is fine, but my laptop is not and some surveys need to be taken on a laptop/desktop. Idk, frustrated and ready to give up because I don’t want to use my phone all the time. Maybe I’ll have to though. Any tips? Thanks in advance!

So do they just expect eeg caps to fall off when you’re doing an at home eeg?? They expect me, the person who can’t drive and is home bound, to just run up to the hospital to have it put back on. With what car and money??? I’m so glad it’s over. I’m free.

Currently hooked up to an ambulatory eeg, but finding it difficult to do anything but sleep since forcing myself to stop all caffeine and I just have to….sit around I guess?? Idk when I sit around I wind up falling asleep. Like how bad is it gonna mess up the test if I just have a little bit? Technically, I was never told I couldn’t. I feel like me being unconscious for a while is gonna mess it up too.

So the damn thing came off my head lol. So much for that.

Recap: had a first time seizure 3 months ago at 30 years old.

So I officially qualify for a PTSD diagnosis because of this seizure. That’s just swell! I think I have maybe had it for other reasons, but that’s been a lot to take in since I saw it on my therapy records. I’m not sure what I think since I don’t really “avoid reminders” of it.

Got my MRI report back. No extreme abnormalities! Yay! Except the things that were already abnormal. The one thing that was abnormal was my shunt for hydrocephalus (fluid in your brain not circulating well disorder basically) may be OVER draining my spinal fluid, so maybe need brain surgery. Not sure, so new appointment with neurosurgery during the first week of June after my EEG. I don’t really think it’s connected to the seizure though because I would think they wouldn’t stop. Not sure, so just putting it out of my mind. No real point to this post I guess besides getting some stuff off my chest.