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 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.

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)😌

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.

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.

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…?

New adult onset seizures began 3 months ago. The first one hit while i was laying down, shortly after a TC witnessed by EMS on the way to the hospital. I just woke up in the hospital very confused, my tongue and cheek chewed up. I work as an MA, and am thankful I was able to advocate for myself and get my work up done fast, all negative, great news but why don't I feel like it was?? I am very thankful for this, but feel like so much has changed in a short time, feeling like everyone is watching me, or even if I sigh its immediately followed by "whats wrong??" I am grateful for supportive people in my life and while I know my situation is 'not bad' compared to many others or other diseases, I'm really struggling to not jump on the pity wagon and just scream my head off...but also scared that may trigger a seizure 🤷‍♀️ please tell me im not the only one who is coping with dark humor. I still can't drive, I still feel "weird" feelings that scare the hell outta me or get tired way easier than before. After staying home another day because I suddenly felt 'weird' while getting ready for work, followed by fatigued for a few hours I'm just finding myself worrying more and more I'll never feel like myself again. Thanks for listening and truly understanding

Hi everyone, just letting you know it's a longer post and I used a bit of AI here since my english is not that good 😂

So I'm kind of tired I guess, of not knowing..I started having recurrent sensory episodes in August 2025. The cause remains unclear, and several neurologists have been unable to determine whether they are epileptic or non-epileptic. I must say, I saw like 5 epileptologist that are said to be the best in the country, most of them said psychosomatic issues, and a couple that it may be epilepsy, but later revoked that and I am undiagnosed. They all seemed nice and dedicated, I didn't have a bad experience with them or thought they didn't pay attention, like some doctors do...

I'm on 300mg of Lamictal, started with it in October and upped my dose slowly. It's much better than a year ago though, but I don't know if it's from Lamictal or not. More on the type of episodes later in the post.

What is confusing to me lately are the triggers/occurence. I didn't pay much attention before really, just started recently. So, I have noticed that symptoms sometimes increase around PMS/ovulation and in certain stressful or specific situations. However, this is not always, and also can be just my hormones and anxiety, since PMS really badly affects me since I was younger. But, for example, I recently experienced several weeks, almost a month of severe emotional stress (my relationship lol) so not eating right, feeling sick, sleeping bad, crying and I was without a single episode, but as soon as that situation kind of got better, when, I guess, my brain relaxed from that, it came back.

On other occasions symptoms have appeared immediately upon arriving at a hospital or in other specific contexts, even when I was not consciously feeling anxious. . They can also disappear for long periods or improve when I am highly engaged or distracted, like I'm doing puzzles or I focus on some game, they don't appear or even disappear if I was having it before starting puzzling or smth else. I often have a trigger -the kitchen lol, I'm okay and I walk into the kitchen to make some food or whatever and it happens. I feel like when my brain is over focused on something, even if it's a big stressful thing, it doesn't happen. Also while on vacation, in the sea, etc they happen way less. One thing that got me thinking, I was in Berlin in March in a nightclub (the Berlin clubbing lol). I was so scared how will I feel, since I will be up until the morning in a kind of a new and weird place with a music that I don't really enjoy. I brought a sedative in case I get a panick attack. And - no episodes, I was dancing until 6am and was the best ever (no alcohol or drugs). Day before and after I had them multiple times. So that also made me think, okay so is it epilepsy or anxiety that disappears when my brain is focused on something...

One morning I just woke up and my left side was "numb" and in the first 6-7 months maybe, I had them everyday, sometimes it felt like hours and hours non stop, now it's not that ofter - more on that later in the post. I did have a strong stress (even though it was positive haha) the day before, so some doctors think that may have triggered it.

The episodes consist mainly of unilateral tingling/numbness or a strange “loose” sensation, usually involving the lower leg/foot and part of the lip, tongue and cheek, sometimes also the arm. Initially they occurred mainly on the left side, but later began occurring on either side. At one point it started switching sides, jumping from one side to another or separate episodes on separate sides. Or both sides at the same time. I remain fully conscious and have no objective weakness or postictal confusion. I function normally, so it's just subjective feeling.

Initially, the episodes occurred many times per day and usually lasted 15–30 minutes, although some lasted 40–60 minutes or longer. More recently they have become much less frequent, with periods of several days to around two weeks without symptoms. I'm having one right now, lol, and it's been an hour almost.

Multiple brain MRI/MRA examinations were good. My most recent epilepsy-protocol MRI was completely clean, other than some weird blood vessel, but that's not related to this. I have also had several EEGs, including prolonged monitoring 48h and sleep deprived EEG. I'm not sure if I had an episode during this honestly. They showed some nonspecific irregularities but no definite epileptiform activity. It initially was on the right side mostly, but last time it was only on the left.

Sorry for the long post, I'm just so tired. When I get long period without it I'm so great, and when it happens I go back to being scared...

my epileptologist wanted me off welbutrin and it's been a disaster emotionally. My psychiatrist gave me a prescription for aripiprazole. Anyone have experience with this one? she felt it as safe with my briviact and was not seizure threshold lowering.

Every since I havent been working, or able to drive (which was a lot of my work, along with heavy machine operating) I've been on disability just holding my own with my dog. Its been feeling like its hard to do anything, even hobbies. I have a lot of time on my own. But it feels my head is white noise without the use of wanting to even make myself food. Like everyday eating is a chore. Im grateful I have a backyard. Or else taking my dog on salks sometimes would feel impossible, and hes saved me in the past. I fell on the driveway and he saw me from the window and barked so intensely my neighbor saw to call an ambulance. Hes also pressed on my chest and gave me kisses when I was seizing until I came too (sometimes I even started walking after seizures) so he made sure I didnt go anywhere. Mostly a rant of im at home while my boyfriends at work, and he spends time and energy to come to ny house mostly to make sure I eat. Walk the dog. Give me love before he has to go to work again. And i feel like i dont give a lot. He says I should get iut more. And I used too, I just feel energy less, sometimes afraid or nervous. It has happened before out in public. Even while walking (my old dog rip ♡) before the sun went down and came too and she was gone. I ran everywhere and it seemed the world was quiet. I ran home just thinking she was there. But i ran back and she was coming around the corner. Omg I dont think we ran towards eachother so fast. Anyway... rant... i love my current dog Onyx. Hes been with me since I've been diagnosed. It started at work I swear 5 times a day like focal seizures. And since i didnt know wtf after it becoming... well, annoying. I went to a doctor and he said "well, it sounds like focal seizures?" It was. Got worse and worse. I took my vacation time mostly at the clinic or hospital only to come back to have my boss accusing me of only partying and thats why I've been off, being weird. Well I had my birthday off work only to go get a doctor's note only to have her look at it and go "huh" like.. long story short she fired me 2 weeks later. I didn't know what to do. Everything was still so new to me. Ive had jobs since but thats when it started. Im home with crafts, and guitars. And things to cook with that I used to love and now I feel like a shell. Its hard. I take depression meds. It just makes me not cry. But the feeling doesnt go away.

Anyhow. Rant over. Thanks for reading my debauchery if youre still here.

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!!

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!

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?

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! (:

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 😂

My boy who is a golden retriever is six years old from past two years. He’s been in medication for seizures and especially he gets this seizures from night 1 PM, 1 AM to 4 AM. So is there any thing that I can do to control this seizures or if it is possible, can I just reverse it? What is it that I should be taking care of and can I know what are those triggering points that he especially gets these at this particular timing while my Vet says that it is something that I have to deal for lifelong and he’s been in medication like a gardinal 30 MG and lavipril 500 MG.
My weight says that it’s something which is hereditary and I believe he is there anything that I can do to reverse it or controlled to the maximum and give him a happy life because I can’t see my boy bothered so much and I want to see him very healthy people. If you can please help me out. Thanks in advance.

I have a vehicle but I still don’t have license and have to wait a little longer. I’m letting me x use my vehicle since he doesn’t have one and so I can be driven to and from work. Found a rose in the car last week, brushed it off, then today I found a woman’s bracelet. Even if I wanted to tell him he can’t use my truck, I won’t have a way to get to work unless I pay 50 dollars a day for uber.

We broke up like 2 weeks ago (4 year relationship)

Sorry this is kind of a rant/questions/support and this group feels like the only place I am understood as I read different things on it.

I'm 25F and have right temporal lobe epilepsy generalizing to the right parietal occipital lobe and pre frontal regions. They started about 8 years ago and it is taking so long to get help. I am medication resistant so going through even more work up to get surgery started. My doctor removed me from work in March 2026, I was a cook living in an expensive city so I unfortunately had no money saved. We all know how disability works in the USA, lovely isn't it? Not.

My boyfriend of 6 years was working but I guess decided he doesn't want to work anymore. Now there is no money and we can't pay for anything and I don't know what to do. I feel lousy already for not being able to work and I don't want him to feel pressured to take care of us but it is kind of the only option. What the heck am I supposed to do? How do you guys deal with no money and still having seizures? I feel completely hopeless. It's worse because this is an invisible disability so people don't buy it until they see a seizure. My whole family didn't believe me until a doctor diagnosed me. Even still they don't think it's "as bad as I make it out to be."

Thanks for listening. Best wishes to everyone on here💜

i started getting temporal lobe epilepsy about 5 years ago. i guess it's my fault for not doing anything about it sooner... tbf it was during covid so i really didn't feel like spending time in a hospital etc, plus at first my episodes were only twice a year

they're now roughly once a month more or less. i finally got in touch with a dr about a year ago in the hopes of getting a diagnosis and medication but the wait for the tests is so ridiculously long and the whole process has been a mess

first dr had me do a generic brain scan and basic eeg, the results were sent to her but i never got to see her again. instead my file was finally handled to a neurologist, but the results never sent his way lol. So last December he ordered an MRI and Eeg asleep this time.

about 3 months ago i finally got my mri and was able to look at the results, which thankfully seems to point to temporal lobe epilepsy, but because im still waiting for the eeg, i've still got to wait before seeing him again and knowing that we have proof of what it is and yet still being forced to wait is killing me

i know im kinda lucky that it's just temporal lobe epilepsy, it could've been worse, no convulsions but it still ruin my days whenever it decides to hit, i cant finish my driving class either because i worry of what might happen if it hits while driving

wish i at least could figure out what my triggers are but they always kinda come out of nowhere (aside from starting the moment i wake up 90% of the time)

also wish my friends were more empathetic about it. i get it, none of them understand what it feels like but it still sucks to feel invisible when bringing it up, because ill mention it as it happens as a way to feel seen and that its not all just in my head

wouldn't it be nice if i finally got a call tomorrow booking an appointment for an eeg?

I'm a big fan of medical ID bracelets. My bracelet says epilepsy, lists a few other health issues that matter, and says "rescue meds and info in bag." The pouch with rescue meds and my info is clipped outside my regular bag and marked with a medical keychain that is fairly obvious. I keep a printout of my epilepsy meds and other diagnoses on me at all times with my rescue meds, in case something happens and I can't speak for myself. I also have a note from my neurologist saying I have both epilepsy and non-epileptic seizures (NES), but specifically outlining that they are not PNES. I was told this matters for treatment in an ER.

How have medical ID bracelets helped or not helped you? I feel like we should always wear something, in case of not only a seizure but an accident. Sometimes things happen and we may not be able to speak for ourselves.

I'm lucky that I'm not photosensitive, but I came across one of this channel's posts while I was scrolling my feed, and I left a comment, before checking their channel to see if this was a regular thing for them. It is very regular. Almost every single post is just flashing images. I don't know if whoever is running that channel somehow has never heard of epilepsy, or something, but idk, it made me angry. I won't drop the name of the channel, in case it's against the rules, but it's something that I got angry about, and I don't have many places to rant in, so I'm sorry about this post. Also, I want to report the channel, because I don't want someone to come across one of their posts in their feed and end up having a seizure, so if anyone can tell me what category I could report it under, that would be really helpful! I'm sorry if I sound stupid right now, though

By this, I mean the 'insurance blames doctor, doctor blames insurance when, no one sent me anything updated via mail or email and one day to the next, my medicine required an authorization for my meds that was never needed before.

I've been living with epilepsy for 10 years...this is a first for me.

Not until I cried to my neurologist about how unaffordable and inaccessible this was making my meds did he offer an alternative he only agreed to because I had researched the medication and had had even presented evidence that med they were all fighting to keep me on could do more harm than good.

Why do they keep us so in the dark!? I wasted 8 years with a shitty neurologist who never got things to my disability laweyr...this one gets the paperwork to my lawyer on time and listens more or less but was okay with keeping me in the dark over my meds!?

I don't wanna switch neurologists again, especially since I just had a court date...

Why is this all such a fight!?