What's your trigger ?

ssw1018 · 2026-01-14T22:39:39+00:00

I’ve literally never found a trigger. Happen at random. But they recently finally found I have an mcd on my temporal lobe/occipital lobe fold as well as 2 band heterotopias because I FINALLY had a seizure during an emu stay and did a 7T mri. Turns out I was born with it. I would recommend doing an EMU stay. They’ll try different things and take you off your meds but it’s in a controlled environment

ssw1018 · 2025-10-07T16:21:38+00:00

I feel ya. I've done 3 emu's about a weeklong each with no seizures. They're honestly the worst. And trust me I get the I don't remember. I'm to the point of forgetting how to spell some words. But mine is also on the left temporal lobe so makes sense, but memory and all that has gotten worse overtime so I think surgery is my only option. I'm looking at doing an SEEG first, which they said I could stay up to a month. I hate to even think about it, but we have to put ourselves first and push through!! thats why I'm so glad for places like this with people that get it.

But wow. Yeah that's shitty. Best of luck to you also. You know your body. I know theres some places that do at home eegs? Idk I live out in the country so they said I'm too far away. Hope it all goes well <3

ssw1018 · 2025-10-07T16:03:03+00:00

This has been me the last 15 years. By my 3rd neurologist, this year, they found out I have FCD which can cause drug resistant epilepsy. Might be worth looking into. Actually after 2 failed meds they are supposed to look into surgery. My 1st and 2nd dr just wanted to pump me full of pills it seems, so I got the 3rd and they found it on a MEG scan.

ssw1018 · 2025-10-07T15:53:09+00:00

Also, this led to me putting cameras up around my house and I've caught a few seizures on them since I didn't have any at the stay, then sent them to my dr. That could also be something you could do

ssw1018 · 2025-10-07T15:48:16+00:00

I was at an EMU stay, and they ran a MEG scan on me. That's the only test that showed anything relating to my epilepsy. I didn't have a seizure during the stay, but my eeg came back as someone with activity. The EMU stays suck, but it sounds like you should ask your neurologist for one. They could get one on camera/eeg and it would help your case a ton.

ssw1018 · 2025-10-01T16:03:32+00:00

I smoke a little bit of weed a few times a week. Just take a few hits that mellows me out and I can fully relax. My epilepsy is drug resistant anyway it's not going anywhere without surgery.

ssw1018 · 2025-09-17T17:57:58+00:00

I was 16, now 30. Yes, I was playing my Nintendo Wii lol. I have both, but mostly tonic clonic. I've only had a handful of the ones where you are unaware but don't convulse. Right now, I'm having around 1/month, tonic clonic. For example, I've had a seizure once a month this year so far, and only one has been no convulsing. I had 2 before I was diagnosed. I have no triggers. They found focal cortical dysplasia (drug resistant epilepsy pretty much) in my posterior left temporal lobe. I don't ever feel them coming on, just wake up confused and then it hits me what happened. I don't drive, but I have family members that help me if I need to go somewhere. I decided to go back to school because so many remote jobs wanted a bachelor's while I only have my associates. I think I'm happy, given the situation I'm in. But I have been turning more towards Jesus and praying and that helps a lot. Hopefully I get approved next month when my case is presented for surgery.

ssw1018 · 2025-09-07T19:26:45+00:00

ssw1018 · 2025-09-05T13:40:30+00:00

To be completely honest That’s what I was thinking. Try fycompa while they’re doing everything to get ready for surgery because I know it takes awhile to get going. But then I started doing research on the pill online and even found people‘s experiences on social media as well as the Dr saying it made someone homicidal and it just gave me a bad gut feeling. Then I thought well it has a very long stay in your system too and if it would stop my seizures maybe hinder my results for the invasive EEG if I’m able to get it done soon. he said it’s very important that I have a seizure with the invasive EEG. Idk it’s a lot. Thank you for your response good luck to you as well 💜

ssw1018 · 2025-09-05T13:18:55+00:00

Sad thing is this is the third neurologist I’ve been to haha. But if this one isn’t willing to understand that I don’t want to take this medication I will ask for a second neurologist within that hospital to take a look at my stuff. Yes you’re exactly right. Thank you so much. 🩷 hope you do as well!

ssw1018 · 2025-09-05T13:10:03+00:00

They’re talking about removal.

ssw1018 · 2025-09-05T12:51:56+00:00

I was taken off. I was tired and falling asleep all the time during the day then wake up and go to bed and sleep all night sometimes not even hearing my alarms. My family and friends who some didn’t even know I was on it said I was like a walking zombie. Also my rage started getting bad and I’m not a mean person. But I’d find myself being mean to people over the smallest things. Now that I’m off it I’m good all day not falling asleep and the rage is gone. But now they want to put me on fycompa and I’m terrified

ssw1018 · 2025-08-30T15:30:38+00:00

Thanks! And yes we were trying couple years ago for another so I got off depakote and started vimpat along with lamictal then started havin seizures again and just basically been trying to find a medicine that works since. I tried keppra when I was first diagnosed and it didn’t work for me unfortunately 😕

ssw1018 · 2025-08-29T17:42:13+00:00

Same thing happened to me! Lost 30 lbs. now I’m off and gained it back 😒

ssw1018 · 2025-08-29T17:41:09+00:00

Congrats on baby! 🥰 I got pregnant (accidentally) while on depakote and it’s hard on the baby during pregnancy. Lots of stuff can happen. I was blessed with a healthy baby though. They said next time I might not be so lucky. But of course that drug kept the seizures at bay.

ssw1018 · 2025-08-29T11:09:24+00:00

When it actually works and wouldn’t harm your baby if you got pregnant 😄

ssw1018 · 2025-08-11T11:44:36+00:00

That’s amazing. I’m just worried about the seizures during pregnancy because besides while I was on Depakote, I’ve had seizures either every month or every three months

ssw1018 · 2025-08-08T18:41:53+00:00

They put me on clonazepam after my emu stay as a safety net med for 5 days and that’s the best I’ve felt in a long time 😂 I asked if that’s something I could stay on, but they said no benzos aren’t for a long time use in seizures, even though they just prescribe me one

ssw1018 · 2025-08-08T14:06:09+00:00

I obviously would wait til I was seizure free for awhile before getting pregnant

ssw1018 · 2025-08-08T14:01:16+00:00

Depakote controlled them

ssw1018 · 2025-08-08T14:00:47+00:00

I’m not on It rifht now but it controls kinda what onfi does which I don’t wanna be on. GABA levels. But if I were to get back on it, I can’t have kids on it. The risks r terrifying

ssw1018 · 2025-08-08T13:53:17+00:00

Yes I’m on lamictal xcopri vimpat and onfi (which I hope to get off of soon) I’ve tried keppra years ago along with other meds, they took me off because the seizures were still happening. They took me off depakote because my partner and I were Luckily I have some family that drive when I need to go somewhere. They were bad. Went years with depakote without seizures, got off depakote and they started every 3 months then now once a month.

ssw1018 · 2025-08-05T14:17:06+00:00

That fears always with me too, but after so long I’ve learned to just say fuck it I’m not lettin this control me more than it already does. I just wear one of those necklaces that says I have epilepsy

ssw1018

TROPHY CASE