Hey everyone 👋 I have right sided TLE with focal seizures and secondary generalization to TCs. I’ve been having seizures for around 17 years. After trying a multiple meds and lots of adjustments, I’ve continued to have seizures. I’m finally starting the pre-surgical screening/testing process to hopefully have a temporal lobectomy. I have my second EMU stay coming up in a few weeks to capture more seizures (the surgeon and specialist are at a different hospital from my OG doc so they want a repeat). I will be having multiple scans, neurocognitive testing, and more depending on what they find as they go along. I’m just curious on what your experience was with presurgical screening?

What tests did you have done and what were they like?

How long did it take from the start of testing until you had surgery?

Any tips for before or after surgery?

Thanks 🙏

Hey everyone. I was wondering if anyone else is in a clinical trial for a medicine called Opakalim developed by BioHaven.

The trial is coming to a halt as of today and it’s double blind, so they aren’t able to taper me off the medicine. I swear I’m on it because I went from 18 seizures a month to 0. My epileptologist said I shouldn’t have any withdrawal seizures… but isn’t stopping any seizure medication abruptly a severe risk?

Of course I should listen to my doctor, but Im here to ask if anyone else heard something different from their doctor about this medicine.

Thank ya.

As vezes acordo com a minha mão tremendo e tem vezes que ela fica dormente no restante do dia

I've noticed over the years that there's a lot of media that unintentionally mimics seizures, specifically focal seizures.

here are some examples

That's So Raven - when she has her visions

Harry Potter and The Order of the Phoenix - when Snape is casting himself into Harry's Memories

Rick and Morty - when Morty has the death crystal and he can see like 13 realities at once

The OA - I'm specifically referring to when Homer finally dies while he's awake but the whole show just feels epilepsy coded to me

During my focals I get deja Vu, my stomach drops, my blood runs cold, my heart races, i feel my pupils dilate and i can see another reality superimposed over present reality. There are people talking to me and the whole experience feels profound in a way that makes me wonder how i could've forgotten in the first place. I can't talk so i can't tell anyone what im hearing and then I forget what i saw and heard as soon as they're over.

Are there any other shows / movies / media you guys relate to despite them not intentionally representing focals?

Heyy, so i was recently diagnosed with temportal focal epilepsy. I have had auras for 4 years without knowing it was epilepsy. Since a long time i have been noticing more people telling me “you already told me this” or “i told you already”. Also noticing since some time that im always waking up tired, never refreshed. Could this be caused by the temporal focal epilepsy?

And if so, will it dissapear when im getting my lamotrigine?

Hi everyone, first off really grateful for this community as I've been posting here frequently. You are all amazing.

Now on to the question; I was taking 100mg daily of spironolactone alongside my 500mg keppra/10mg onfi. I switched to onfi in May to try to get off keppra but had a breakthrough so I'm on both with plans to switch to briviact. I've been on spiro for 1.5yrs & finally decided to stop, I tapered off for two weeks. The dermatologist didn't even mention doing a taper i just decided it was best rather than stopping cold turkey. Probably at least four times I've had dizzy spells with sweating, today vomiting. It doesnt really feel like an aura but at the same time its so similiar. I feel like my hormones are adjusting from the androgens & I dont know exactly when my next cycle is supposed to be. Has anyone else taken & stopped spironolactone, how did it affect you etc.?

Hello,

I missed my dose of lamotrigine and brivaracetam last night. I had a really hard time sleeping. Could missing my pills have given me slight insomnia?

I think I might have some sort of PTSD from (childhood) epilepsy as they kinda forgot to send me to a psychologist back then. Leaving me alone with the scary thoughts of falling wrong and getting handicapped/sudep/drowning/falling your teeth out of your mouth and all those other thoughts and anxiety and living with never knowing when it will happen. All those hospital visits. People back then didn't realise that that's not easy to live with as a child around me. And as an adult it's still not easy. I feel like there is some unresolved anger in me because of feeling so alone for so long.

But I kind of not know what to google. Do groups for people with epilepsy talk about this? Or can I join a group for like people with other diseases that lead to such anxiety's or would that be inappropriate? And what would such groups be called? Or just any good tip you have is welcome.

Hi

Last evening my girlfriend, 26/F went to a friend’s wedding and was having the time of her life with her friends. Lots of dancing and stuff but no alcohol involved. Around 10 in the night when the party was about to get over, she suddenly screams and all her body muscles tighten and she falls on the ground. It’s followed by her actively seizing and froth starts flowing from her mouth. Even her eyes roll upwards. All of this happened for around 15-20 seconds(that’s what I gathered from her friends).

She was immediately rushed to a nearby hospital where they gave her some anti emetic and anti seizure injections. Initially she was very agitated and grabbed her friend’s dad’s collar and started shouting at him. It took them around 30 minutes to reach the hospital and the whole way she was very disoriented. However she doesn’t remember anything. She managed to call me at 1 in the night and told me about everything(she only remembers having some tunneling of vision and the next moment lying on the hospital bed). She felt very weak and could barely get up from the bed last night when they came back from the hospital. Talked to her today morning and she feels perfectly fine. However I’m very concerned about her. The hospital took her blood samples and have advised her an EEG along with a MRI.

I have few questions that I would like someone to answer. Would be very grateful for the same.

1) Can something like this happen out of nowhere ? She has no family history no past history literally nothing of this sorts. Also could the party lights or the dancing been a precipitating factor for this ?

2) We’re planning to get her EEG and MRI done tomorrow. Are there any other tests that we should ask the doctor about ?

3) Sometimes while sleeping her body jerks/shakes (I don’t really know how to put it in words). I asked her once about it and she told me she dreamt of falling. Is this in anyway related to the seizure episode she had yesterday ? Furthermore, she feels lost at times. Like we would be shopping at the grocery store or cooking dinner and I would give her a kiss on the head or pat on the back or something and she wouldn’t even realise? Almost as if lost in her own world. Can this be related as well ?

4) If the doctor prescribes anti seizure medicine to her (that I assume has to be taken life long), I’ve read most of them have certain side effects - how big of a hassle are these side effects? Also what else can we do to prevent similar episodes from happening in the future.

5) Are there any food/drink products that should be avoided (based on personal anecdotes)? Maybe like alcohol coffee or something ?

Would be grateful if you could share your own experiences as well. Will help us feel more normal I guess. Thanks a lot!

Hola!! A ver si alguien puede ayudarme, recomendarme o comentarme como le fue intentando retirar cenobamato?!

Esta es la 3era vez que intentamos retirarle el cenobamato a mi hijo de 10 años con sindrome de lennox gastaut, es muy adictivo y tiene un efecto rebote muy fuerte y persiste estatus de ausencia, a pesar de no haber sido eficaz, y provocar muchos efectos secundarios que alteraba su dia a dia .

After theEEG I got dizzy and tired, then for a couple days I had intense fear like symptoms. I don’t usually feel that level of anxiety, so I wonder if it could be indeed some form of epilepsy.
I woke up for a couple days extremely anxious. Not a panic attack but close.
The only thing that would make me feel relieved was contracting my muscles and move around.
Is this psychological you think? Now it went away completely.
I’m still waiting on my results 🤔

Hello! I'm Diego i'm 37yo and i live in Argentina. I've been having this past months when i would go to sleep at night and suddenly when i'm i'm bed i get a feeling of void in my stomach and vertigo mixed with danger (i identify this has to be an aura) though i'm not sure maybe panic attacks? and then tonic-clonic seizures that put me nervous, alert and very stiff, i do not lose consciousness at all, then i hiperventilate and get scared and go to a corner or to the floor and hug myself my heartbeat races followed by shortness of breath and i go despair and rumiant in my head, i try to describe this the best i can, it's horrible to live like this, i can't fucking sleep at night. I have always struggle with insomnia and my sleep is very light as a feather i never has a good sleep in years tbh.

And yes before you ask i am medicated with lacosamida 100mg at night and diagnosed for Grand Mal epilepsy since puberty, now i'm 37. With this medication i was good for the first two years but now it's hell, i tought of end my life, tough i don't want to but i just can't live suffering this much. I don't have money to access private health care system and public health is dogshit.

I emphasize the importance of creating meaninful bonds and friens to help each other. Epilepsy is not a joke. We suffer too much, and our families too! We need to get help by talking to each other and sharing experiences and genuinely caring each other, we must be kind we owe to ourselves and others who suffer the same as we do. Comunication heals trauma and emotion stiffness, it's crucial to the path to healing each other and i think that if we compromise to do a network and chat and share we can heal ourselves!

Personally I just want not to feel alone and maybe make friends who can understand me and empathyse, i live alone all by myself, sometimes i feel lonely and when crisis happens i feel very scared. I just want to connect with people who won't judge me. All the friends i tried to make in real life they were all jerks that ended leaving me because of my health condition, i'm starting to think i'm marginalized by society because i'm different, they didnt deserve such a noble soul like me but can't stand it so it makes me very sad. I still hold hope that there's good and kind hearted humans. Sorry if i make it this long but if you read this long maybe...you feel the same? and maybe be open so that we can be good Friends? My English is ok-ish to chat, so DM me i'm open!

This is NOT a suicide alert!

I ocasionally have the worst intrusive toughts, it's curious how when everything collapses around you all the mind can think it's negative thinking towards sabotage and eventually...death!...But! then i think that i shall give no entity to it, that i'm a warrior and warriors fight and never quit! I'm always trying new things to keep my mind healthy or at least try not to deteriorate even more than it has but it's falling apart slowly i can sense it. In the end it's like a push and pull between choosing to live or death.

It seems to me that i'm starting to develop other mental problems such as clinical depression and panic attacks which are not good for my overall health and for my economy.

I always tried to avoid psychologists and schrinks. They just hand out pills like candy. All i have is my neurologist.

What do you reccomend i should do to stop this bad living and try to have a normal life? I tought by starting to get new people! People like me! I'm not giving up of youre not giving up to life either!

Know that there's people that hold you dear and love you no matter what conditions you hold. I just hope i can get some piece of mind in return it's all i ask. Peace, i love you

I am a mom to an epileptic son, he had his 1st seizure the day after his 1st bday, he is 16 now, medication controls them for the most part, still has a breakthrough seizure every few months or so. He has been begging for an Oculus. From my knowledge epilepsy and VR are not a good match. Has anyone in here, that deals with Epilepsy ever tried an oculus safely?

Hi
I’m on 75Mg morning and 100Mg in the evening of lamotrogine

I sometimes get random shivers without any explanation

Does anyone have similar symptoms or have an explanation ?

Does anyone else have issues with shivering and feeling cold before having a seimzure or being on the edge of one

Hey everyone in the Epilepsy Universe!

I have had a pretty rough couple of days - two seizures back-to-back. Luckily, they were on my days off, so there wasn’t too much disruption.

Well, other than the school’s principal dropping me and the kids home, which was very thoughtful of them.
Anyway, as soon as I got home and had more or less recovered, I was absolutely fucking ravenous!

I ate a tin of sweetened condensed milk one day and a packet of baking chocolate chips the other day.
Is there anything a little less detrimental to the diet that I could turn to in times like these?

Cheers everyone and stay as safe as you can living life

I started on 50 mg to titrate to 100, then a couple days ago at the neuro since my mom had a video of me doing weird ass movements one night after falling asleep turns out it was a seizure LMAO

He raised me to 150 mg and I’m ngl the first 2 months of 50-100 felt like low dose clonazepam which was honestly not bad at all, I feel normal now, but after I’m done with this bottle I’m gonna start with the 150, will that happen again? Any side effects of dosage raise? Just curious

To those in the community who are on Keppra, do you ever find yourself taking way too long to be complete simple tasks? This has been my experience every day since starting Keppra 3 weeks ago.

For example, earlier this evening, I got home from work and spent roughly 15 minutes trying to undress and put on my evening wear, but kept constantly getting distracted. This will happen while doing simple tasks like laundry or getting ready for work as well.

I'm never actually late for work or anything else, but it feels like I'm always rushing and always dragging at the same time. I usually like to arrive at work 10 or 15 minutes early, but since I started taking Keppra it's always down to the wire.

Is this a common side effect to experience with this drug? I'm aware of the "morning fog" and I do have that, but this feeling of being rushed and constantly running late is a bit different.

I was diagnosed with epilepsy in like December of 2024 after having an EEG done because I had a tonic clonic on Halloween. First seizure I've ever had that I'm 100% sure happened (neurologist thinks I maybe have been having nocturnal seizures but idk).

I haven't had another seizure since then. My mom had epilepsy and had seizures frequently. I feel like a fraud. Like I know the proof is in the scans (and I'm so lucky to be one of the few who actually had something show up on a scan) but I can't fight the feeling.

Idk quite how to phrase this question. My mother had epilepsy and she passed it down to me and my brother
(Ive been diagnosed for about 3-4 years now)

From what I’ve heard, her seizures were awful and the medicine she took had horrible side effects to her health. When she got pregnant with my brother she had to stop taking the medication as to not harm the baby, but back then they didn’t have any alternatives so she just had to not take anything and pray she didn’t seize.

She said that after she had my brother she didn’t have another seizure and still hasn’t, and I’ve heard other people say that they’ve grown out of their epilepsy too.

I’m wondering how people figure that out? Like do you just stop taking your meds one day and it stops? For my mom it was pregnancy but that’s only one case. Is growing out of your epilepsy even a thing?
And if you think you’ve grown out of them or wtv, how are you supposed to test it. I feel like not taking your medicine is super dangerous idk

Does anyone know what the camera is like? I've done a few EEGs, longest about 12hrs. But I've never had to take a camera home to be recorded and honestly it makes me feel, uneasy. No one has given me any information on it really, I thought I was doing it in hospital again but in-home makes me uncomfortable because there's so much room for error and they'll also see my partner in my bed right?

Are black out seizures normal? I’m 21 and I’ve only had 2 seizures so far. About three months ago I had one and last night. On both occasions I had completely blacked out and not remembered a single thing. Is this normal?

I’m 25 and since I was about 11 or 12 I’ve had what I think are focal seizures… only not very often. It always starts with intense Déjà vu, where I’m so sure what just happened has happened before. It can be as simple as something I say or picking something up but that always appeared to kick it off.

After that I would always get the most intense nausea, and what I would describe as “light” vertigo or dizziness. I would only throw up maybe every 2nd or 3rd time. Usually the nausea would go away after 30 seconds to 1 minute and I could continue my day.

I’m always fully aware during the whole time and I’ve even talked to people the whole way through it.

The only thing is from when I was 11 or 12 until maybe 18 or 19 they happened at the very most every 2-4 months, and now they happened once every 6 months at the very most, in fact I can’t even recall one happening in the past year.

I’ve always dismissed them because they happen so little, but I had an event recently that makes me want to get a diagnosis.

I was recently away on holiday with my partner, and we had gone out for dinner when this event happened which I have never experienced.

I want to preface this with the following bits of information:
- I had barely eaten that whole day, I had some mushrooms and feta on toast for breakfast and that was it until dinner.
- I had also drunk barely any water as I just forgot to thanks to being on holiday.
- this happened right after I had finished eating entrees and a pasta dish rather quickly.
- No alcohol was consumed prior, but I did have half an edible. I don’t have weed often but I’m also not new to it.

Just after finishing the food, I suddenly felt myself getting really really hot and sweaty, my partner said after the event that my shirt was pretty much wet from all the sweat, I felt my head pulsing, the best way to describe it was that it felt like I was wearing a sweatband that was one size too small.

After about 30 second of that, my vision got darker and darker until I practically couldn’t see anything, I put my head into my hands looking down at the table and it started to feel like someone had put their hands on my shoulders and was (emphasising) GENTLY rocking me, my partner said I looked like I was twitching in the shoulders but it wasn’t violent at all. I then threw up and everything came back to normal.

I was aware for what I think was the entire event, however I thought the event went for 1 minute and my partner said it was more like 2 minutes at the most. I was able to talk to my partner throughout most of it, I refused an ambulance and told her I would be ok during the event.

I am perfectly back to normal now and was the next day, aside from being a bit shaken by it.

Now I am back home I am in the process of getting an appointment and referral, I asked a medical friend about it but he said there were too many possibilities of what it could be, a seizure, just a normal fainting/passing out experience, or something else.

I just wanted to see what people here thought - thankyou in advance!

Hi everyone, I'm a 23-year-old male that have experienced getting a seizure on the plane twice, one happened a few days ago and the first time 1 year ago. Both times happened during my sleep on the plane, waking up afterwards feeling disoriented and surrounded by flight attendants telling me what happened and help me regain my alertness. I recall having a headache on the day it happened. Both times happened in periods that I had alot of work and stress, which made me fatigue and could've contributed alot to why it happened. However, I know nothing about seizures and haven't seen a medical professional about this problem at all. I just want to ask if this is normal, if it might happen again, and could this be something serious that needs to get checked?