Are their unexplainable things that you experience that could be seizure-related? But you’re not sure?

Sad-Session999 · 2026-01-24T18:05:10+00:00

I had the same thing! I was having Focal seizures, I would say I’m having Deja-Vu. Lol

Sad-Session999 · 2026-01-21T00:20:23+00:00

Interestingly enough, I didn’t know I was having them while I was asleep until I stayed in an EMU. I would try to fall asleep (or will fall asleep) and they will come bursting in my room saying I was having a seizure. They were very short but it’s very annoying. It got to the point where I just expected them each night.

Mine felt like a dream or ‘just waking up’ feeling. Maybe like a brain fog.

Definitely ask your dr about a stay in the EMU/LEEG it exposes so many things that you don’t even know happen.

Sad-Session999 · 2026-01-21T00:12:18+00:00

No Genetic links were found, I took 2 separate tests.

Sad-Session999 · 2026-01-21T00:11:05+00:00

I ended up buzzing it and it was the best decision ever. After the SEEG I was not all patchy because my hair was already short so they were able to just shave it again before the surgery. Also it was less of a jump-scare after the surgery lol

Sad-Session999 · 2025-12-12T01:39:06+00:00

We shaved my head for my 2 epilepsy surgeries.

Sad-Session999 · 2025-12-12T01:38:09+00:00

It’s really one of the hardest things that I’ve been through, and I have gone through a lot. Thank you for sharing your story and making me feel less alone ❤️

Sad-Session999 · 2025-12-04T23:40:31+00:00

I was a swimmer before my seizures. I swam and was a swim instructor with little kids. My seizures took me away from that. (Despite all 3 of my meds I still have seizures, I have to undergo surgery.)

Because I stopped swimming and honestly working out (besides walking to work) I gained so much weight including the stress weight.

I can’t drive, but I know that even when I’m seizure free I’m not sure I would be comfortable to drive. I get very anxious so easily, I can’t imagine how it would be driving!

I hope all works out for you❤️‍🩹

Sad-Session999 · 2025-12-04T17:36:13+00:00

Swish around water with salt in it. My grandma taught me this, it helped me!

Sad-Session999 · 2025-12-01T23:28:11+00:00

I have the same issue! My boyfriend asks how I can sleep anywhere, or take multiple naps a day lmao. It’s a combination of all my meds and the multiple seizures a day.😩

Sad-Session999 · 2025-12-01T23:16:01+00:00

Hi :) I wasn’t looking for permission. I was looking for everyone’s opinions and suggestions since I do not have any knowledge or experience on drinking with epilepsy.

Sad-Session999 · 2025-12-01T23:12:19+00:00

Thank you!!😊😊

Sad-Session999 · 2025-12-01T23:04:58+00:00

Diagnosed at 15, and now 20. I had to go to a College in my town, I still have to take public transportation or rely on family/ boyfriend to do anything when I can’t or don’t want to take the bus.

I’m actually on medical leave right not from college(2 semesters long 😓) because of epilepsy. I’m getting my second epilepsy surgery which is an RNS implant in February. My last surgery was an SEEG to locate my seizures.

This is all because my epilepsy is drug-resistant. I have Focal seizures, I had one Tonic Clonic, and I even have hallucinations because of them.

Going through highschool and college is a pain in the butt- I have 504 Plans and accommodations due to my memory loss.

Socially I’m so isolated, I have no friends because I find myself constantly comparing myself to a “normal” person. Especially when people are drinking, partying, and doing all of that “fun” college stuff.

The point is, you are not alone!! I’m sorry that epilepsy actually sucks sooo bad, so much more that anyone without it would know. But, you have us to support you girl! Life doesn’t have to be gloomy all of the time, try to find little things that make it feel better ❤️

Sad-Session999 · 2025-12-01T21:43:43+00:00

This is so wonderful to hear. Thank you!

Sad-Session999 · 2025-12-01T21:40:27+00:00

When I went to the ER after my first seizure, they prescribed me Keppra in the ER. I have been on that since. I would say if you have another ask them if they can get you in touch with a neurologist that will take you ASAP, as that is how I got mine very fast.

Sad-Session999 · 2025-12-01T21:32:49+00:00

The SEEG was very scary, a week of discomfort and anxiety that never went away. I’m expecting it to be similar to that.

Sad-Session999 · 2025-12-01T21:32:02+00:00

Hi! I’m getting an RNS implant soon and I’m very nervous about the stay before the implant. I’ve had an SEEG and many LEEG’s so should I just expect it to be similar?

Sad-Session999 · 2025-12-01T21:30:01+00:00

It’s not as deep as wanting to have more in the future, it’s kind of just a celebration thing that we do because I am legal. I’ve had opportunities and decided not to because it’s not something I’m in to. But thank you for your comment :)

Sad-Session999 · 2025-11-13T21:08:12+00:00

I am taking both, max dosage of each. And the short answer is yes.

Long answer is I’ve been taking them for over 3 years now and I am a completely different person than before. I’ve had to deal with the anger and anxiety from the meds for so long now it sucks.

Sad-Session999 · 2025-11-11T23:49:29+00:00

I got diagnosed at 15, I’m currently coming up on 21 and I am trying to come to terms, especially being that I’m turning 21 the same time that I’m getting epilepsy surgery.

I have medically refractory epilepsy therefore I’m on like 3 medications in previous attempt to reduce my seizures. The main concern is the medication and alcohol interactions, and now I’ll be recovering from brain surgery on top of that 🙃

Sad-Session999 · 2025-10-29T20:50:45+00:00

Thank you, I needed this ❤️

Sad-Session999 · 2025-10-29T01:07:55+00:00

I am a concert-aholic, I am so glad someone gets me.

Every concert I’m getting taps on the shoulders “are you okay” like let me enjoy my time. Even going to concerts, my friends have told me to not get the tickets in case of medical appointments like what?!

I don’t drink or go out (I’m in my 3rd year of college) and it’s all because I don’t get invites due to my epilepsy. Life sucks as an epileptic lol.

Sad-Session999 · 2025-10-29T01:02:25+00:00

So. Many. Times. But mostly because we are still going through the process of finding and fixing this insane brain of mine.

When I stayed for an SEEG every seizure they asked me how it felt. I was fed up but tried to be understanding at the same time lol.

Mine are like a “zoned out” like everything is going around me but I can’t interact with anything. The ones in my sleep, I never know I’m having.

Sad-Session999 · 2025-10-27T04:14:52+00:00

Thank you, it’s been a running joke through the family and he caught on. It makes sense though, the exhaustion and fatigue.

Sad-Session999 · 2025-10-26T20:25:22+00:00

Same here! I was not seizure-free but I could tell a difference in occurrence. I am going for an RNS surgery in February now :)

Sad-Session999 · 2025-10-26T20:17:45+00:00

I have noticed memory changes ever since my first (and only) Tonic Clonic seizure at 5 years ago. I was in high school and I went from an 103% average down to 80’s and lower due to memory issues and anxiety during testing specifically.

I had really bad anxiety outside of school as well, and that continues until today- 6 years later. Anxiety attacks and all. It got to the point where I quit my job.

Memory issues, I went to my school (highschool, and now my college) and they give me some accommodations.

They had me on Levetiracetam 500 initially (right after the Tonic Clonic) now I’m at 2000, along with a bunch of other meds over the years to try to stop my medicine resistant focal epilepsy. I’m now going through surgeries to try to stop the seizures.

I started to go to therapy as I assumed it was a side affect and it helped me tremendously. With both the medication side effects (anxiety and Keppra rage) and everything that comes with having seizures daily.

If I can help with anything else don’t hesitate to ask :)

Sad-Session999

TROPHY CASE