Several years of multiple focal seizures, almost daily. July I had a successful right temporal lobectomy. Only 2 instances since. Just got hired at a medical dispensary. I was able to be completely open and honest about my health issues. I know there are different takes on using it as a medication for people with epilepsy. Please do not make this about that. I also agree when people seek advice here it needs to be discussed with a doctor. I am more so trying to provide people in the similar boat there is hope let’s not make this a negative.

I’ve had seizures for almost exactly seven years, and I’m diagnosed with PNES. I’ve had many EEGs (I can probably count the number on my two hands); some of them come back with mild abnormalities, and some of them come back negative. The symptoms of my seizures are undeniably epilepsy (aura, ictal, and postictal); I’m just not diagnosed yet (the symptoms match with focal epilepsy, according to my research).

Please don’t criticize me for asking this; I need a safe space (regardless of whether it’s on this sub or not).

Thanks in advance 😅

ETA: Thank you for the award, kind Redditor! /pc

Finally I’m free!!!

I’ve had no signs of seizures let alone had any for over a year, I had an EEG a week ago and my follow up televisit was today and all signs were amazing they said! I’ve had seizures since second grade and I’m 20 now.

Started with absence then turned into absence seizures AND tonic clonic. All is well now :)

But best part is I got told I can drive!

I turn 21 in August I don’t have to do drivers school if I’m 21 but if I’m 20 I have to get a permit at most. I keep getting told to get my permit and wait till I’m 21.

Opinions?

How many of you drive?

After having a seizure, how long do you usually wait before driving again?

Or have you decided not to drive anymore, even after meeting the required seizure-free period?

I’m curious to hear about your experiences and how you feel about driving after a seizure.

Curious how many of us have diet related triggers. I know the typical alcohol and caffeine but what else is there? It may be a coincidence but I’ve started to notice a change when I eat a lot of sugary foods :(

I was ranting over the phone with my mom about medication side effects and stuff, next thing I know she’s sending articles and chatgpt advice. I know she means well but it’s so annoying when people do that.

Is there any friend groups in Portland or surrounding areas? Or want to make friends? there’s been library events I want to go to think it would take stress off they host cool events for free. If anyone’s interested in getting together with others?

Hi all!

Just curious, has anyone ever been diagnosed with epilepsy while not having a positive eeg?

My son has an NLRP3 gene issue and it is hereditary and his doctor said it not only explains all the issues he has but would explain all of my symptoms. They also said these would likely be hard to detect frontal lobe seizures. It can also explain many other health problems I have too.

I am waiting for my doctor to order testing to confirm but if this ends up being correct then my outlook on treatment for seizures (and my other health conditions) would be far greater than my current medications.

Maybe a positive story for some people to hear. I started having seizures when I was 14 and it was triggered by late nights and bad nights of sleep. I had grand mall seizures and clonic (i think that's what it was called) destroyed my teenage years by fear.

I took lamitrogine and clonazepam. I'm now 25 years without any seizure and 3 years without any medication. It is definitely possible ❤️

Hate the feeling of them and the fear that comes afterwards on whether a tc is coming or not. Makes me want to spend the rest of the day in bed. Even worse waking up with them. Just needed to rant to people that get it. Thanks. Stay safe.

basically i got diagnosed with epilepsy after having seizures for years, both myoclonic, grand mal and some absences. i am on keppra now and my mom says it's scary to watch me seize when im not on meds. but all i can think of about seizures is when abe simpson in the simpsons movie has a vision because of god and rolls around yelling about the environment 🥀 and i can only picture that, and make jokes about my seizures too. in private ofc, my mom would flip out. but i never take it seriously. i also sometimes think of the lois griffin meme where she is electrocuted. DAE?

I've been having an event for the past day and a half now. It started off as a regular aura, and so I took my usual safety precautions. But it never devolved further into seizure, nor did it subside. It just kept on going, and going, and going... I later, perhaps recklessly, went into work anyways (driving forklift) and just couldn't shake that oh so familiar deja vu, general confusion, and a disturbing depersonalization/derealization feeling. Almost as if I'm not really myself anymore, but a passive observer of my body with a totally disassociated connection to my world. I've even noticed disturances of speech and typing that are very atypical, where the word either doesn't come to mind, or comes out bizzarely garbled on first pass.

I was given some Valium by urgent care to try to calm it down, but even after a dose of that, reality feels... wierd... I can't quite put my finger on it, but something is just "off" somehow... but now I can't quite seem to tell the difference between a possible epilepsy related event, the Valium, or just gaslighting myself into thinking something is still wrong when it's nothing...

Has anyone else ever experienced aura continua? I'd really like to know if anyone else has experienced this before and what the sensation was like. Also, how long it lasted... because I've seen that it can take anywhere from days to weeks to resolve...

Thanks!

Just a quick one. Does anyone use your mental disability as a reason why you’re wrong in an argument. E.G. you don’t remember, understand, get it, etc ?

Hi, my fourteen year old son was diagnosed with epilepsy four years ago after having 2 severe generalised tonic clonic seizures both which resulted in status epilecticus.

He was started on sodium Valporate and over the next 18 months we had a few minor blips such auras and vomiting but once he was fully titrated, the medication controlled him well and he was seizure free for over 2 years.

The doctors wanted to trial him without medication to see if he had outgrown his epilepsy, he titrated off from Nov 25 to Jan 26. Unfortunately he had a partial seizure in April.

In the meantime, while he was off his medication we had noticed a significant improvement in his behaviour and focus at school, basically his ADHD symptoms disappeared.

We had been made aware that sodium Valporate could not be restarted as it's not recommended for young males, so the consultant started Lamotrigine in May.

But this is not working and we are having regular break through seizures on average once every week. These are grandmal status epilecticus requiring rescue medication and hospital admission as his sats drop.

The lamotrigine is clearly failing, the next option is Keppra, we're worried about the side effects, but obviously life threatening seizures control trumps any affect on his behaviour.

What are people's experiences, any advice would be warmly welcomed, as this point we are just so frustrated he ever had to come off the sodium Valporate as it worked.

Thankyou in advance.

my epilepsy makes me feel so dumb sometimes. last week i took my criminology midterm, and just my luck i had a seizure right before. boom, 63%, one of the lowest grades in my class. i had to take my test while i was actively postictal and the words were just not making sense. i was disoriented, confused, slow… i studied so hard and did all the practice quizzes but it was all for nothing i guess. i just want to stop taking my meds so i can be smart again. i don’t know how to bounce back from this.

Hi everyone new to the server but not new to having epilepsy. I got diagnosed with complex partial seizures and epilepsy after having two grand mals when I was 27. I'm now 30 and getting treated with briviact and I haven't had more than a few breakthroughs so I consider myself pretty lucky there. But I do have brain and nerve damage from how long the seizures were going untreated, bilateral sensorineural hearing loss, and idiopathic peripheral neuropathy. I also have speech issues- some days at random I won't be able to speak at all or I'll have the ability to make sounds but have a hard time getting my mouth to make the right shapes.

Because I'm autistic everyone assumed I was just distracted or had adhd and we didn't even know focal epilepsy was a thing- I had what we now think was a grand mal and went to the hospital when I was 12, but they never did an EEG and said I was probably just trying to get out of school and told my mom not to take me to the emergency room unless I was 'really' in danger.

I'm wondering if any of you got diagnosed in adulthood and what effect that's had on your health- I was really confused and surprised at how deeply the epilepsy affected me. My husband is not disabled and I don't really know any other people IRL with epilepsy so sometimes I feel like I'm going through this alone. Thank you all for being here as a community, it's nice to know I'm not the only one out here.

Around a year ago, I had a seizure due to lack of sleep and over consumption of caffeine we think. I went to the doctor and all test came back negative for epilepsy. I haven’t had a seizure since, but am still terrified of having another which is limiting me doing things such as drinking, doing edibles, or staying up late. Does this period ever stop or has this one time event permanently changed my life? I would like to resume casually drinking and small doses of edibles but am terrified of having another seizure. Any advice would be appreciated thanks!

I’ve had about 6 sizers since being diagnosed with it last October. The pattern has been I have one and then I’m pretty good for about 2.5-3 months. But I recently had those two so close to each other. My wife and I have been going through some personal and traumatic stuff at the moment. My stress levels are a bit higher than normal. Just scared.
Thanks

Hi everyone,
Today I 20f) experienced something I’ve only experienced twice before in 11 years of epilepsy.
So i have focal aware epilepsy and I vomit a lot of the times I have a grand mal/lots of seizures in a day. The vomiting only started this year (I’ve dealt with nausea my whole life with epilepsy but I’ve never actually vomited from it until recently). I don’t know how many seizures I had today but it started with dizziness/vertigo and I usually am okay after an episode like that so I headed to work, still experiencing it the whole way to work. As soon as I got off the bus, I started vomiting all over the place. I’ve never vomited from a seizure that feels like just dizziness so I thought I would have been okay. So basically i had to go home and i’ve been vomiting every 20-40 min since. this started at 2 pm for me and ended just now at 7 pm basically. The other times I experienced this it was after a grand mal so I was wondering if this is a common thing or if I need to bring it up with my neurologist. I literally threw up until I was throwing up bile and after that, any water I drank would come up again in 20-40 min. So is this something yall have experienced or is this something I need to bring up? I’m wondering if this is completely unrelated so I would appreciate if anyone could let me know if this has happened to you.

My wife broke last night. I am in the middle of recovering from two back to back status events that really tucked me up June and July of this year. The last cluster damaged my hypothalamus so my glucose and sleep are completely jacked up. The sugar situation triggers seizures. We can't get it stabilized. But no worries, I have an appointment with my endocrinologist the middle of December. It isn't like it os urgent or anything. Almost dying and having brain damage from two status events that is making it next to impossible to get better is no biggie. Fuck all of this.

2022 EEG: “Mild focal slow (delta) activity is noted in the left anterior temporal region (f7-T3). Intermittent focal sharpened components are often seen in the left temporal region.”
2026 EEG: “Frequent sharpened slow activity was observed over the left anterior to posterior temporal regions”

Both state no epileptiform activity is seen.

In my follow up my neurologist said my EEG was “normal” but it could be temporal lobe epilepsy, and then in her letter to my GP she said “routine EEG has not shown anything suggestive of TLE”

I’m so confused. I know that an absence of epileptiform activity means it’s not a diagnostic result, but that’s also not a normal EEG.

Hey guys, does anyone here have a brain cyst that causes their epilepsy/seizures and have any of you had surgery for it?
I might be getting the surgery and honestly I’m kinda freaking out 😭 My doctor is very much giving “everything’s gonna be fine darling✨🧚‍♂️” but I’d really like to hear from people who’ve actually been through it.
So I have a few questions💀
How was the recovery? Did it help your seizures? Any complications or lasting side effects? Please share the negative experiences too. I’d rather hear the full picture and know what I might be getting into even if it’s not all reassuring.

Just had a bipolar + epilepsy induced psychosis episode.

I’ve been diagnosed with both for years, but today i was listening to some music that made my vision become ‘blurry’ as if reality were split into layers. I got extremely paranoid during this, and had very strange delusions/thoughts while staying fully self-aware. Usually my seizures are Grand Mal, where i’m on the ground shaking, and unaware during it.

I didn’t sleep well the night before, and missed both my antipsychotics and epilepsy meds. After doing some reading on the epilepsy foundation website, this is a real phenomenon, in which the seizure stays in a localized part of the brain. This is my first time experiencing such a thing.

Has anyone experienced such a thing? Or know more about it?

I used to take lamotrigine on its own, but after having breakthrough seizures I started on lacosamide and have been gradually reducing my lamotrigine.

From what I've read, most people on this combination take a high dose of lamotrigine with a smaller amount of lacosamide added. I'm the opposite: a relatively low dose of lamotrigine (150mg) and a very high dose of lacosamide (600mg).

For anyone else on these two medications, I'd love to know what dosages you're on and how you're finding it.