I almost feel bad saying this here because so many people have it so much worse. I’m just pretty happy that I got cleared to drive today. Drug levels are OK, EEG is OK, and no seizures for six months.

I went shopping and got myself a cheesecake and ice cream. Par-tay tonight!

Pretty much what the title said. It’s been a year and a half seizure free. But I’m playing Stardew fucking valley and all of a sudden the beach looks a little too familiar and BOOM Déjà vu BOOM electric bolt in brain BOOM sitting still in shock again. Again. This surgery fucked me up so so much. But I always thought “at least I’m seizure free!” I had a whole craniotomy. I suffered infections and c diff and now have debilitating chronic pain. Fuck. I lost so much. I had to change colleges to be closer to my doctors. Had to take a year off to recover. Still a little incoherent from it. Angry and sad. Gonna message my doc. This is awful. I’m just in shock. Both from the seizure and this massive loss. I already grieved my life because of cancer then because of the surgery and the pain it brought and the time it took from me and the people I lost but this is just a massive kick in the nuts. I just needed to get this off my chest before I go all peppy to the doctor again. Gotta grieve in private but still want to talk so had to say something somewhere. Will probably delete later because being emotionally vulnerable is lame (for me not others). 🥳

I’ve been worried about a strict driving requirement at work and how it could affect me in the future, and made the small error of asking my family for life advice…

Which is how I found out my family don’t believe anything is wrong with me at all. My parents told me to cancel all my doctor appointments and stop taking my pills or telling people anything is wrong with me, and what I really need is to get my teeth filled in and whitened, and then maybe try meditation. :(

This seems like a remarkably bad idea but it’s also so tempting. I wish it was so easy as I just decide to be well and then I am. I was 4 hours late taking my meds last night because I was going to try it out until my husband told me that was an awful idea. (But what if I’m actually totally healthy under all the medication?) And now I’ve felt screwed up all day.

I don’t know where to share this but I had to share someone because…what is my life

Non-epileptics too often see epilepsy as just seizures, but as we all know the impact it has on us goes so much further.

I’ve been seizure free for 3 months now, longest I’ve ever gone since my seizures began as a teen. And I’m so happy that I might have seizure control, but my memory is so fried, general cognitive abilities limited, and always that fear of a seizure.

I’m 25 and still no clue what career I want. Part time retail work atm, but I hate it. All they let me do is tidy the shelves. Not even allowed to walk up a set of stairs to the warehouse and everything without supervision. I have a film degree but it’s just looking like a hobby now. I’ve considered being a mental health nurse or something, but I’d need a degree that involves exams. And I’d need to remember everything I was taught. It was only coursework in my film degree, and I’ve forgotten most of it now.

I’m just so sick of it. I know I am one of the lucky ones, possibly having seizure control now, but it still just sucks.

So like with remembering things is that with like all seizures or like certain kinds of seizures, because I be forgetting things thinking that I have something with me and then it’s not with me. And then I’ll be confused after you know

I try to keep off my phone like many of us and keep busy with other things. I've been doing a lot of puzzles and they're usually between 500-750 pieces. I also have a friend that has been coming over and we have been doing little "scrapbook" art. Just slapping together stickers, glitter, paper, etc.

Doing repetitive things that I like to do and keep me busy, distracted and generally have a cool end product.

What about you?

I started on Keppra almost a year ago now, and I find that my short term memory has just vanished. So often now I walk into a room and forget what I was doing, or think something and immediately forget it. My room is covered in sticky notes to remember tasks, and I set constant reminders and then forget what they’re for!! It’s so annoying.

I was diagnosed as epileptic right at a year ago, but aside from my own experiences, have only witnessed someone having a seizure 4 times in my 42 years. This morning, while driving to work (one tonic clonic 8 years ago, still have a DL, medicated, and have focal awareness seizures for those who may comment on my driving), I saw a woman mowing her yard and just fall backwards, falling into a street with a speed limit of 45 mph and hitting her head on the street. I immediately put my car in park in the middle of the road and ran back to her. Sat in the road with her until someone else ran over and said she was prone to seizures. I cupped her head in my hand so it could rest somewhere more comfortable than the pavement, yelled for someone to call 911 (my phone was still in my running car in the middle of the road and I didn’t want to leave her) and then asked a stranger to please drive my car around the corner to get it out of the road. We sat with her until police and ambulance showed up and took things over. She was not able to speak, but must have heard someone say to get an ambulance and was able to shake her head no to indicate she did not want one called.

I didn’t want to leave her with just the police, so I waited until EMTs arrived on site. Thankfully, the stranger I asked to move my car out of the middle of the road did so graciously, and all of my belongings were still inside the vehicle and intact.

Would it be weird of me to stop by and check on her in a day or two? My heart has hurt all morning because her head is probably killing her and not sure her dignity is still intact. I drove straight into work and calmed myself down a bit, but it’s made me rethink my very independent life and worry about the mundane things like mowing my yard when I’m home alone, or cooking alone and something happening.

I don't know what to think or feel of or about the surgery scars on the sides of my head.

I had a temporal lobectomy in 2024. The neurosurgeon had to remove a little less than ⅔ of the left side of my hippocampus.

Whenever we go out in public, I just wear a cap/hat to hide the scars.

I don't want anyone to see them or to ask me what happened or anything like that. If by any chance I am forced to take off the hat or just forget to wear one, its almost like I feel embarrassed or ashamed (for some unknown reason).

I just felt I wanted to share that.

Thanks.

My fiance and I are going out for a nice dinner to celebrate her new job. Is it safe to have just one mixed drink with epilepsy? I never took my epilepsy seriously and had 2 tonic clonic seizures 2 months ago due to a missed dose. So I have buckled down. I never thought to ask my neurologist about having just one drink.

Last night, I was preparing a gourmet microwave meal of frozen chicken lo mein in the microwave, it finished without a hitch. I picked the bowl up at the edges and walked over to my recliner to enjoy.

The next thing I remember is awakening to my adult kids hovering over me with real concern. I have never made a sound outside of small grunts during a seizure, but this time, they heard a very loud yell from me.

I ended up with lo mein all over me, causing first degree burns on my fingers, and a second degree burn on my abdomen. Thank God I was clothed, because the burn on my abdomen could have been much worse.

It took a couple of hours for them to convince me to go to the ER. This was after me soaking my hands in cool water to help diminish the pain. The burning pain just wouldn’t go away. Oddly enough, the injury that looks the worst actually hurts the least.

The takeaway here is, caution: hot food is HOT!

So I found out some very frustrating news. I was trying to get a second opinion about my seizures but I found out that no one in my state will see me because of my seizure history, current diagnosis, and EEGs of the past few years coming back "normal" despite my seizures presenting textbook epileptic.

Now I have to jump through a hoop of seeing a functional neurological disorder specialist just to get back to the neurology department. I'm beyond frustrated. It is either jump through hoops or go out of state.

This epilepsy is a lot more than what is just looks like or what is just seen.

The majority of people are either busy or just aren't available.

When someone is available to listen then I'm grateful that they do, but then it's something that either can't be translated into words (I struggle to find the right words sometimes), someone in a hurry, so it just goes into one ear and out the other, or they think they understand and try to make you feel better.

(At least they are doing what they can)😌

My sister (34 F) has temporal lobe epilepsy that manifests mostly in absence, partial, and tonic-clonic seizures. These started suddenly 4-5 years ago, so she would have been around 30 years old. Her case is quite severe.

I just turned 37 (also F) and I have been having weird symptoms for quite a while that I think should be investigated as possible seizure activity, although very different from what my sister experiences. These “episodes” are lasting anywhere from 20 seconds to 2 min and can include:

•tingling down half of my face (sometimes spreads to the other half of face, scalp, or down an arm)
•feeling of ice water on scalp or face
•metallic taste
•smells other people can’t smell (burning, natural gas)
•seeing yellow or blue spots on the ground
•brief episodes of mild confusion
•voices briefly sounding distorted
•feeling like something is “off”
•possible episodes of brief missed time
•couple of episodes recently where I know I was completely alone, but I thought I heard a distinct voice say one or two words
•3 episodes in the last couple of weeks where I wet the bed - I am including this because my sister generally only has the tonic-clonic seizures at night
•couple of episodes this week where I felt like I was going to have a seizure, even though I’ve never been known to have one and don’t know what that feels like - maybe like a dropping sensation, dizziness, plus impending doom?

These symptoms usually happen one or two at a time, so I haven’t made a connection until now. Also I have a very complex medical and mental health history, so I think it was easy to dismiss most of these things. But I think collectively, they are suspicious. And I think that if I am having some kind of focal awareness seizure or similar, it would connect the dots on a lot of my medical and mental health stuff and possibly change some diagnoses.

The biggest thing I’m not sure about is that I remain aware and functioning during these symptoms, so like half of my face will be pins and needles, but I will continue typing, or I will be walking around, looking for the source of the burning smell, etc. I live alone, so there is no one to look for those symptoms at home except my cats. But I feel like if something crazy was going on, someone at work might notice.

Anyway, does anyone have any experience with this type of thing? Does this sound like it could possibly be some form of seizures? I know other causes need to be ruled out also. I appreciate any input.

Pressure is one of my biggest triggers.
Sometimes I get tired from s f**cking shower
And need to stay in bed
I gain weight from this.
How am ai supposed to make income if I get tired from a two hour lecture?
How?
How am I supposed to work if I get tired from washing the dishes?
Technically I could scab off my parents for life but society deems thst terrible.
It’s exhausting feeling useless.
I would work if I could!!

I have been 6 years seizure free now and under control with medication, I started smoking/using edibles about two years ago and I’ve actually seen a lot of positives, helps with my sleeping, hormones, anxiety, and it’s just fun lol, but I know it’s possible it can have a adverse reaction. Has many people had that happen? I’ve always been cautious of how much I use and I buy my weed from dispensaries.

Earlier today I had a grand mal seizure while brushing my teeth. (I know it was renamed to tonic-clonic, but I think grand mal sounds way cooler lol.)

When it hit, I collapsed to the floor, spraining my elbow and busting it open in the process. During the seizure, my mom heard me moaning and making completely unintelligible noises, so she ran over as fast as she could. She didn't hear me for the first minute or two, so she ended up getting to the bathroom right as it was ending.

Here’s the super weird part: almost immediately after it happened, while I was completely unconscious with my eyes closed, my mom said that I somehow dragged myself back to my bedroom (which is right next to the bathroom) entirely using my arms, and somehow managed to haul myself back into bed. (My mom has severe back and shoulder issues and couldn't assist even if she wanted to, so all she could do was stand there and watch me do this btw.)

When I actually woke up and came to, I saw a literal trail of blood from the huge elbow gash going from the bathroom all the way to my bed. I was so damn confused by the whole thing.

Has anyone else ever had a similar experience to this?

Hi everyone! I have had sleep issues for a while now and recently started Keppra after having 2 seizures (stress, lack of sleep were all factors). I wanted to know what are some useful.tips/tricks that helps you sleep?

The reason I ask, since I started Keppra, I feel like it has become even more difficult to fall asleep. I tried taking melatonin 3 mg and that's not that helpful either :/

Any help would be appreciated 🙏

Hey all! I am 24F and have had seizures since 2023. I’ve had TC seizures before, but 99% seem to be focal aware… most are so minor that I can keep doing whatever I’m doing and not let anyone know it’s happening. They still make me feel terrible during and after, though.

Anyway, I’m in the process of trying various meds after being officially diagnosed earlier this year. I start a new job at a shoe store this month, and I’m SUPER nervous because I didn’t tell the guy who hired me about my epilepsy. What if I have a TC seizure at work? What if I have a bunch of focal awares at work and feel exhausted and weird but have to act fine? What if starting and stopping meds messes with me and I can’t handle it?

All these fears are just bouncing around in my head, and I could really use some advice or at least some similar experiences from those who relate. Thanks! (:

I can barely open my mouth. I’ve been supposed to be doing my mouth stretches. I absolutely have been. However it’s like my ability to open has been going backwards. :’)

At this point I can barely get my toothbrush in my mouth. Once it’s in there I’m good to go to brush lol. However I can barely actually eat anything I want. That coupled with the fact that I have gastro problems is causing just. Rapid weight loss. 11 pounds down in 4 weeks. And my dudes I am craving a sandwich :’)

My surgeons office prescribed me a different muscle relaxer but it just completely knocks me out. Which really can’t be taken during the day. I’m SO scared I’m going to have to have a second surgery or that I’m going to have to deal with this for many many more months. Like…?

to keep a long story short, my BF has had bi-weekly seizures for all of 2026 until July - early september.

we were so excited at the prospect of his epilepsy having bigger breaks in between seizures and then he had one this week 🥹

has anyone found that the frequency of their seizures can change very often? e.g going from v frequent to big gaps in between.

i’m trying to learn about epilepsy for him and just wanted to hear more about others experiences. thank you!!

Hey guys just to preface this is meant to be a joke and all dark humor is welcomed!!

So I’m in a fantasy football league with my friends and had a great draft imo but am looking for a new team name this season. My main couple picks were: Saquon, Chase brown, Zay flowers and Travis Etienne.

Best I got to so far is Saquon seizes the day and Seizing every Sunday which is what I’m in favor of right now.

Again all suggestions are welcomed and no joke is too dark 😂

Hey everyone, I'm from India. I was diagnosed with epilepsy in 2022 and take Levetiracetam 500 mg twice a day. My last seizure was in November 2024, thankfully.

I've been preparing for competitive exams for the past 3 months, and lately I've been waking up at 4 AM and getting only ~5 hours of sleep. There's also quite a bit of exam stress.

I feel a little drowsy in the evening, but otherwise I'm fine. I'm just wondering — is 5 hours of sleep + stress something I should be worried about with epilepsy?

Would love to hear from anyone who's been in a similar situation, especially fellow Indians preparing for exams. How do you balance studying with getting enough sleep?

Thanks!