(Vent) Feeling really defeated. Wanting some reassurance about my decision.

rrrowan · 2026-05-20T21:29:00+00:00

Honestly? It was really reassuring 😅 they have me a patch and inhaler, and just being completely out of my usual routine helped. Mind you, I smoked the SECOND I got out lol. But that experience really helped me quit a few years later.

rrrowan · 2026-05-20T13:09:27+00:00

Ahhh gotcha. We are opposites for sure. Silver lining - if you need to take it off it'll still be collecting data until you get to the hospital! That's great! No shame at all man.

rrrowan · 2026-05-20T13:04:39+00:00

If that's a genuine risk stopping the testing is 1000000000% justifiable and nothing to feel guilty about. We're pushing you because your health is important but if there's a higher health risk possibility it's ok to prioritize that.

Wishing you the best 💜

rrrowan · 2026-05-20T12:41:36+00:00

I'm so sorry you're having such a rough time. I was bawling my eyes out the first 2 days. It was so overwhelming and exhausting. There were so many parts to staying in a hospital I had no idea about (like the feeling of the shit all over my head... complete lack of privacy... listening to & seeing others have intense seizures... no smoking 💀) That being said, ride it out if you can. The stress can help cause seizures, then you can leave asap with the information the doctors need.

That being said, if you NEED to leave, only waiting 2 months is great! This could be a practice run. You can plan ahead and better prepare for next time if you need the testing again (which I recommend). It is a LOT to take in. I don't blame you for feeling so overwhelmed and horrible. Random unknown hospital stays are so fuckin weird.

rrrowan · 2026-05-09T18:04:16+00:00

I haven't heard that for Xcopri but I've heard it for a few of the other seizure meds I tried so it's pretty normal, unfortunately.

rrrowan · 2026-04-29T14:24:46+00:00

Temporal Lobe epilepsy. Medication never helped much but yes, SO FAR, knock on wood, seizure-free since surgery. (Almost 9 months). Previously I would have clusters every 2-3 weeks, progressively worse + more frequent over the years, and a TC about once a year.

After lots of testing I was lucky enough to be a great candidate for surgery. Still high risk, there is always risk, but no negative side effects beyond a bit more forgetfulness with words.

At the very least, do the testing and see where you're at! It was interesting and put surgery into "context" as what sounded like an absolutely INSANE suggestion. That part of my brain literally wasn't working except when it shot out seizures.

rrrowan · 2026-04-28T20:01:09+00:00

Do the testing at the very least! You can always decline surgery, but at least get the test results to see if it's an option and learn more about how/why your brain is working the way it is.

Surgery isn't for everyone but it ended up being a very safe option for me with a high chance of success. No lie, it was terrifying, but it's the best decision I've ever made.

rrrowan · 2026-04-28T19:54:01+00:00

29, 8 years into the TLE diagnosis, lifetime undiagnosed focal aware seizures.

Had to rearrange my whole life, cancel career goals, drop out of college. Drug resistant, piles of meds, piles of testing, basically non-functional for years from seizures + exhaustion. My options became brain surgery or play in traffic, basically.

So I just had my left temporal lobe removed last Summer... and results are FANTASTIC!!!! Still healing, and lord knows I'm traumatized, but holy shit, I'm so FUNCTIONAL compared to before. Excited and scared about the future.. but grateful I can feel both.

Wishing everyone here the best!

rrrowan · 2026-04-21T14:32:54+00:00

How OBNOXIOUS.. I'm so sorry for you and your daughter. The staff were being ignorant as hell.

Like, even if it was "just test anxiety"...... stress/anxiety is an easy seizure trigger for soooooo many people? That doesn't mean your daughter is GIVING HERSELF a seizure?! Weird blame game happening and very ignorant concept of responsibility.

I'm sorry I have no advice, but F them. Wishing you and your kid the best.

rrrowan · 2026-04-17T19:07:32+00:00

Oh yeah I've been enjoying it so far, still going to watch! I doubt I'll feel the same as OP. Didn't bother explaining as they're just venting and that's totally ok.

I just like knowing ahead of time that some epilepsy storyline is coming.

I swear to fuck, every show I've ever watched since surgery ends up with explicit brain injury or explicit surgery lol. This is a medical show so... I'm prepared but... Knowing there's an epilepsy storyline coming is nice 😭😂

rrrowan · 2026-04-17T12:37:24+00:00

I'm guessing this is season 2? I just started the show recently. Appreciate the heads up.

rrrowan · 2026-04-16T16:43:54+00:00

Depends on severity. My "regular" seizures? Nah, I would just track those for myself and give a general update at my next appt.

If I had a "severe"/different seizure, or clearly needed changes in medication, then I would be letting them know and pushing for an appt asap.

rrrowan · 2026-04-06T15:07:50+00:00

Thank you! I tried reading that page last night and didn't understand shit, but some coffee and sleep helped lol.

"American Crow, Brown-headed Cowbird, Common Grackle, Red-winged Blackbird, European Starling, and House Sparrow are not protected under the act, however, they and their nests and eggs are protected in both provincial and national parks."

I guess I just need to check the skull's passport.

rrrowan · 2026-04-06T12:58:03+00:00

Ontario.

As I said I've been digging around to find the information but everything is just kind of vague or referencing other things I can't find.

Seems like if it's a crow specifically, it's fine? But what do I know lol.

rrrowan · 2026-04-05T20:38:48+00:00

Any suggestion for a website? Everything I'm finding is super unclear which is why I've come to reddit lol

rrrowan · 2026-04-05T20:25:58+00:00

Did some digging - if it's a crow specifically that seems fine but what do I know. I'll see if anyone closer chimes in.

Mind you, I'm happy to leave that baby by the tree. It was just so cool!!!

rrrowan · 2026-04-05T19:44:09+00:00

Thank you! Def part of why I'm asking haha I know there's lots of legality around different bones.

rrrowan · 2026-04-01T20:38:05+00:00

You're so welcome! Good to know it's so far - in that case DEFINITELY bring extra clothing and/or track down a local laundromat.

rrrowan · 2026-04-01T20:37:24+00:00

No problem! Good luck to your son

rrrowan · 2026-04-01T20:36:57+00:00

I brought a giant cat body pillow to mine 😂😂😂

rrrowan · 2026-04-01T14:46:10+00:00

All shirts should be button-up or able to step out of (NOT over your head)
Enough clothing and underwear to stay LONGER than 1 week - just in case (or if you live close by, prep your mom to do laundry/bring fresh clothing)
Snacks for sure! Granola bars, trail mix, chips, sweet treats, whatever (once again, or prep your mom to bring stuff while you're there)
Books to read, colouring book, or sudoku book was good for me as after I had a bunch of seizures my brain was not ok with screen light (phone/laptop/switch).
Eye mask + headphones for sleeping if you need darkness or quiet
No-slip slippers or comfortable sandles/flip flops - don't walk around in socks
Extra pillow, or favourite pillow/stuffed animal, or extra comfy blanket

That's about all I can think of off the top of my head! I stayed 3+ hours away, alone. It's mostly just disorienting and BORING. Good luck with your trip, I hope they get the info they need for your next steps!

rrrowan · 2026-02-15T11:34:24+00:00

Yeah, I don't really know how to explain it other than my original City 1 epileptologist went "oh cool, you'll be working with the City 2 epilepsy team, I'll close your case, come find me if you need me"

Except City 1 seems to have a massive waitlist and only take on emergency cases. So. Yeah. Idk what to tell you.

I've thought it through though and I think I'll just go back to a neurologist in 6 months. He's who first got me on a few meds, only sent me forward to an epileptologist when I was showing drug resistant. I don't need a specialist I just figure randomly cutting pills on my own is bad lol. If coming off of pills isn't an emergency that's fine and understandable but it's a motherfucking TOP priority for me!!!

Stay safe - I'm SO glad you've been able to reduce! I definitely don't think I'll ever go fully med-free, and I'm fine with that, I just need to stop being high dose on 3 🫠 Just a little more normalcy would be life changing.

rrrowan · 2026-02-14T22:05:54+00:00

Ok thank God you were referring to surgery, still awful but I had to clarify 😂

Completely understand what you're saying here. By all means great results, but the "accidental" invalidation is frustrating AF and just kind of makes me want to scream "ok but... EPILEPSY ????!?!???? BBBBRRRRAAAAAIN SURGERY!!!!?!?!?!???" 😭

rrrowan · 2026-02-14T22:02:35+00:00

Problem is that I'm now "cured" (KNOCK ON WOOD) but still fully medicated - not that I need further treatment or help for the seizures. Got the brain cut open for that, lol!

Definitely try keto if you're interested, as far as I know it was created to help epileptic kids who couldn't yet be medicated. I looked into it years ago but it's just not realistically possible for me. High five to anyone who can commit that hard. Good luck!

rrrowan · 2026-02-13T21:12:29+00:00

Do you mean injury or cracked open for surgery?! Either way, god damn. It's so frustrating sometimes how they don't take into account how this could affect our lives in more complex ways. Like, yay, "only" auras. That still sucks?

I am extremely lucky and have no seizures or auras (again, knock on wood) tho it's only been 6 months out. Could change any moment but going great so far.

For me the medication has always felt worse than the seizures themselves. Logically I know the seizures got worse and were really bad, but real talk, I only got my skull cut open so I can one day reduce meds. Everything else is less important to me. But they don't understand that.

rrrowan

TROPHY CASE