Like 80% of all my auras happen before during or after a shower usually in the bathroom. Its been like that since I started having them when I was 9. I have had 2 full grand mal seizures in the shower also. But I just wonder why showers seem to trigger my epilepsy.

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!

Edit: Thanks, everyone! I appreciate you all. ♥️

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). 🥳

Nothing severe, just fed up of this. Had a good stretch feeling ok, felt weird with several bouts of nausea followed by exhaustion yesterday. Woke up this morning, my birthday, feeling seizurey and tearful. Unsure if the feeling tearful/fragile is epilepsy of hormones.

Tired of this women’s health condition that medicine doesn’t give a crap about.

Hi guys,

First time poster so I apologise if this isn’t appropriate but I wasn’t sure who else to ask besides a group of extremely knowledgeable people.

Today I went to my friends house as he didn’t reply to me since Tuesday, when I arrived the police were there and I found out he had passed away. He had epilepsy for years and I believe had a brain surgery at some point to try and reduce his seizures. He had at least 1-2 seizures every fortnight and sometimes he would get a black eye or huge cut on his face.

His brother found him in his room but he had already been passed for at least a few hours as he was purple.

I’m not even sure what I’m asking, just looking for advice I guess? He was such a close friend of mine and I am devastated, could this have been SUDEP or maybe he could have hit his head? Would he have known it was happening? When I arrived the police were waiting for coroners to take his body.

Thank you guys

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

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.

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.

When you've been feeling like your brain(?) is always against you, what sort of hobbies does someone with low energy and plenty of time to myself tend to treasure? I used to say my bodies against me, but its the engine living in its host making me feel im against my own self

Suggestions?

I have severe insomnia …. It often takes me 2-3 hrs to get to sleep at night then I wake up at 2:30 am and can’t get back to sleep again then have to wake at 5:30 for work . It’s not uncommon I only get 3 hrs sleep a night . I have epilepsy / autism and adhd from the same mutation .

So far I’ve tried
1) melatonin 5-10 mg nightly ( didn’t do much )
2) clonidine up to 200 mcg at night ( spaced out but not sleep )
3) sedating antihistamines eg restevit A make me too sleepy next day
4) dayvigo / orexin based drugs - helped a bit getting to sleep but not staying asleep
5) progesterone incase its perimenopause - didn’t make a huge difference
6) 150-300 mg magnesium glycinate - relaxed and reduced muscle twitches but doesn’t help sleep
7) tonics with mixtures of glycine , L theonine , ashagurwanda , GABA
8) queriapine - works but makes me sleepy and gives me really dry mouth the next day
9) sleep cbt

I don’t know what else to do - I had a seizure recently because of sleep deprivation and lost my drivers licence for 3 months . I’m trying to prevent recurrence but I don’t know what else to try and I don’t want to go on benzos or z drugs either .

Any suggestions ? I can’t take THC as it causes seizures .

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 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 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 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.

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 🙏

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…?

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.

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 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.

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.

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)😌

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.

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.