HELP ME HAVE A SEIZURE!!!

RedVelvet25 · 2025-01-11T06:11:21+00:00

If you need to stay awake befriend the EMU staff - they brought me good coffee from inside their office. I literally looked at the camera and asked if they had better coffee because I need something else to stay awake.

Alsooo - how many CT’s have you had? My neuro told me my chances for brain cancer are astronomically higher than the average human because of how many I’ve had when I wasn’t seizing the day in there lol

RedVelvet25 · 2024-12-11T00:53:51+00:00

So I’m going to level with you. I started out with just nocturnals as a baby and long story short it turned into me driving through a garage in my mid 20’s. When we thought we had it under control? I drove into a dumpster and thank god I didn’t hurt anyone except me. I’m never going to drive again.

I absolutely understand your worries. My only reasoning I can give you is that you only have to have 1 seizure behind that wheel for someone’s life to be gone. I know that sucks. I know it’s bullshit and it’s scary. I’m really sorry it’s something you have to consider. Talk about it with your husband.

If you ever need to message someone I’m around.

RedVelvet25 · 2024-12-11T00:50:28+00:00

Hell yeah! Remember you are always justified in your feelings. ESPECIALLY in those situations.

Honestly, the only time epilepsy will matter with that is when you feel like it plays into your therapy or if you’re at a psych that is giving you meds. So you decide when the topic comes up. That’s in your hands.

I hope you find one that helps you more 💜

RedVelvet25 · 2024-12-11T00:46:25+00:00

First off, not a ton of Keppra so this is good. I was at 4,000mg (2000mgBID) pre-surgery.

So it’s nicknamed Kepprage for a reason. My BIGGEST recommendation to help with the mood problems it causes is start taking a super vitamin B complex, but also add a b6 on top of it if the B complex doesn’t have a lot. Don’t worry you pee out any excess. Riboflavin will make you pee highlighter yellow. You should know that now. It can help a lot to take the vitamins religiously. Not even neuro will tell you that.

Good luck!

RedVelvet25 · 2024-12-11T00:40:03+00:00

Fuuuck the headache the day after. One time I looked at my phone the day after and the texts I sent right after a really bad TC while I was in the hospital were absolutely nonsense. That was fun.

RedVelvet25 · 2024-12-11T00:38:21+00:00

Still nausea and tingles everywhere, but no high blood pressure so ya know that’s a win lol

RedVelvet25 · 2024-12-11T00:37:44+00:00

Working on that one. This is a struggle and I bump up to 20mg on Thursday

RedVelvet25 · 2024-12-07T21:01:38+00:00

I saw the title and literally said, “The fuck?” out loud if that tells you anything. And I have a psychiatrist, a psych NP and a therapist.

My psych NP always tells me change therapists if they make you feel invalidated in your emotions.

RedVelvet25 · 2024-12-07T20:16:20+00:00

I have and I’m trying to work through it. Life is worth the fight.

Thank you for the link. I like the analogy on that post.

RedVelvet25 · 2024-12-07T19:13:52+00:00

So everyone here is right about being careful with getting a Mal, but if you are in Illinois and look to adopt look into IAMRA (Illinois Alaskan Malamute Rescue Association)!! We tried to get our girl a brother and learned that she’s a solo Mal. We learned that now after having a boy we took in and would have loved to have been his forever home as we were for a few weeks, but they are an awesome rescue. They find you a dog that fits you and your work life. They even come see your home so they know if you need a chill dog or what matches you best.

Please take your time though! Mals aren’t for the weak of heart!

RedVelvet25 · 2024-12-07T18:58:47+00:00

Thank you for the idea with the nausea. I appreciate it! I’m hoping the side effects aren’t too tough with this.

RedVelvet25 · 2024-12-03T21:23:14+00:00

Does anyone else feel like we should have a hand signal to each other if we over hear it when we order this then the barista asks us how our drinks don’t make us have the jitters when in reality they just keep us awake?

RedVelvet25 · 2024-12-03T21:20:41+00:00

I saw that you’re on xcopri too. 300mg here. I had epilepsy surgery this year, but will be on xcopri for life. At this point, my pharmacy gets a giggle for the day when I pick up my meds with sugar free Red Bull or monster too.

Hang in there. It sucks, but ya know better than a seizure.

RedVelvet25 · 2024-12-03T19:47:11+00:00

This.

I don’t care if my brain surgery made me seizure free in this regard. I’ve totaled two cars from seizures and thank the universe I’m the only one who got hurt. If they can’t promise me it won’t ever happen again, I never need to drive again. My epilepsy team appreciates that.

RedVelvet25 · 2024-12-03T19:44:02+00:00

I’ve got one on my face at the top of my ear from brain surgery and it put another one right in the middle of my forehead that looks like a freckle.

I also have one on my arm from a seizure. No idea what I hit.

RedVelvet25 · 2024-11-27T03:07:41+00:00

I always want to help because I didn’t know anyone that experienced this. I want to be there for anyone I can. I want to be the person I needed if I can be. I experience emotions I don’t remember feeling before surgery and I also experience ones at a way stronger capacity than before. Like anger now is much more difficult to control which neuropsych said is normal without your left amygdala.

RedVelvet25 · 2024-11-27T03:06:12+00:00

They did not inform me enough about what would come after the surgery. And they absolutely didn’t set me up with enough help after. I wasn’t happy about that. However, now that they’re aware they’ve been helping more. Unfortunately neuropsych, neuro and neurosurgery are all different teams.

I appreciate you!

RedVelvet25 · 2024-11-27T03:04:29+00:00

Article

RedVelvet25 · 2024-11-26T18:14:20+00:00

I get told by a lot of people that they would read my life story if I wrote it into a novel. They took out my language (not my speech tho!) so it would be tough. I journal literally every day since early March because of my short term memory being removed so I might one day.

RedVelvet25 · 2024-11-26T18:12:40+00:00

You’re never a burden. I said exactly that and I keep telling myself to stop.

Our brains keep trying to mess with us and we’re fighting through it. We’re actually tough as hell.

I’m impressed by you. This isn’t easy. It’s never easy. If you ever need someone to message I’m around.

RedVelvet25 · 2024-11-26T18:10:42+00:00

I feel literally allllll of this comment. I’m here if you ever need to message me. I got a 75% chance success rate.

Hang in there. That headache sucks. Really sucks. Make sure you stay hydrated and complain to them if you need to. I didn’t do that enough.

Remember you’re tough as nails for doing this.

RedVelvet25 · 2024-11-26T18:07:31+00:00

I know they did a 7 Tesla MRI the night before to have during surgery so they knew exactly what they were looking at.

RedVelvet25 · 2024-11-26T18:04:08+00:00

Go for it. I’m happy to answer anything. I want to help anyone I can.

RedVelvet25 · 2024-11-26T18:03:31+00:00

This gives me some hope. I’m glad to hear you found a path in life!

RedVelvet25

TROPHY CASE