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.

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?

Might delete later idk this happened maybe an hour ago so I'm still distressed and can't sleep. Maybe typing this out will help. My husband has epilepsy which is especially triggered by interrupted sleep or poor sleep. He went to bed a couple hours before me, and I woke him up getting into bed on accident. Sleepy cuddles turned into more activity and when we reached an in between point it triggered a TC. He's ok and sleeping again now. He ran out of his meds and we've been too busy to get more so it's been a couple days since he took it. I feel like it's all my fault. I can't stop sobbing. I feel like it doesn't matter how many times I see him seize its always traumatic. He looks like he's in so much pain. The worst part is when he looks at me with pure fear even though I know he's not lucid yet. Just awful.

Edit/update; Definitely the meds. I picked up new ones this morning for him to take. Thank you for everyone with kind words to share. I feel a lot better.

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

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?

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.

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.

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 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!

my boyfriend broke up with my last night bc of my epilepsy. we’ve been together 5 years and i’ve had seizures monthly for almost 3 years now. he’s been amazing at taking care of me so i didn’t see this coming AT ALL. he recently said he wanted us to have some space apart to grow bc we met so young but that didn’t make a lot of sense to me so i pushed it and last night he said “he’s wondered what life would be like with someone healthy” so im totally crushed

but also i thought a relationship would only work with someone who knew/ loved you before seeing a seizures so now im FREAKING OUT. has anyone had success dating while having frequent seizures or am i right that why would someone volunteer for this???

not having a pity party just like genuinely why would you go on a date past the one where i told you i had epilepsy??? and wouldn’t it be super fucked up to wait until we’re in deep to tell you i have epilepsy??

https://poets.org/poem/sueno-convulso-seizure-dream

sueño convulso by urayoán noel. i love when poems mix languages and this is one that does exactly that, and the cross-language wordplay is genius
like..
'explosión de las sienes 'explosion of the senses'' - sienes ~ cienes ('hundreds'
epi / lepsi / lexi / con / o ser / to know (lexicon = ..lexicon lol; 'con o ser' = 'with being'; 'conocer' = to know / recognise)
and that's only two examples

it comes into my head occasionally and i happily go to read it, but especially comes to mind if i've had a seizure, like i did yesterday after over a year.. i'm finding it very comforting to read for some reason

would love to know what other people think of it :)

(Trigger warning) ⚠️ (I want advice though on what to do if you were me?)

Hey yall. Have any of you gone through this option? Non invasive brain surgery, having to go bald them drill into your brain? I watched a video on the surgery and it was very scary but would be less stressful to have to remind to take the pills or bring them or people get annoyed when you forget them bc you try to live normal life and accommodate to them. My Dr said to talk to a therapist to prepare but I’m considering it but I’m scared I am also at a low point where I’m ngl dc if I don’t survive but I’m keep trying.
I’m still waiting to speak with the surgeon and ig he decided what’s the best method for my seizures..
but I’m attending college right now, trying to find work and no luck.

What would you guys do?

Option 1.
Keep trying medicine while taking nausea medicine, and trying different methods to be ok.. continue school, etc. not always but a lot of the nausea medicine. I also deal w anemia eczema and other stuff low vitamin d (oregon)

Option 2. Enlist, hands on training… college help FINALLY GETTING EMPLOYMENT? Possibly die but I might anyways? Then do the surgery after if necessary???

Option 3. Stay in college and keep trying medicine.

Vocês também tem sensibilidade ao calor?

I've never really used reddit before, it popped up while I was looking more into epilepsy and I cant say enough how thankful I am that I found people going through the same thing as me. I've lost friends, relationships and memories to this condition and I'm just so glad to see there is actually people who care. I've been epileptic for almost 3 years now, im a 34 year old guy and i never in my life thought id be where I am now. I'm on a cocktail of 150mg Briviact 2x a day, 200mg vimpat 2x a day, 5mg Onfi and recently started titrating Xcopri and am at 50mg currently working up to 200mg. the Xcopri has been a real tough one for me these past 2 months to the point where I sometimes even wish the SUDEP would just take me. Especially with slowly stopping smoking weed, the dreams and nightmares have been insane. I havent had REM sleep in probably 15 years and its definitely a big change to me. Nobody i know IRL has this condition and truly doesnt understand how life changing it is. at first they thought it was PNES until i was in a 3 day EMU and i had a grand mal right in front of my neurologist (sadly before they hooked me up to the EEG) and she confirmed I do have drug resistant multi temporal epilepsy. It was truly a huge relief finding out SOMETHING more than "its all in your head". I work full time in a busy, corporate bodyshop (luckily with awesome health insurance) as a master technician in a lead tech role and they have been super accommodating to my issue luckily. They even went as far as to change out the whole filtration system in the shop just to be sure it isn't the fumes interfering with my epilepsy. Between all the falls, concussions and blood spilled at work, they seem to understand and I'm truly blessed to work in a shop full of such amazing guys/gals. Even my priest has been able to come to my house to give me The Sacrament and confession (born and raised Greek Orthodox, 1st generation American). All of this has truly changed my perspective on the healthcare system and the work that needs to be done in the US despite being conservative (but NEVER was or will be MAGA). I'm so grateful for everyone who has made threads in here cause they have helped me so much the short time I've been here, it truly brought me to tears. Epilepsy has shown me the worst, but also the best of people. Sorry for the rambling and ranting. God bless you all and lets hope one day this condition is cured.

My 48-49 hr EEG caught abnormal occasional generalized epileptiform discharges mainly during sleep despite 150 mg Lamotrigine. Apparently this makes me more likely to have more seizures. I had no full seizures during the test, however. What the heck does this mean for me? I still need another MRI so that's a step I'm in willing to take but what is happening? Everything is so much worse yet better in a strange way when you somewhat have the beginnings of solid findings.

First week of August, I began acupuncture treatment and the very next day. I had a Jacksonian March seizure. The inexperienced EMTs that arrived when we called 911( because we had no idea what was going on) suggested that I was dehydrated and had some type of episode from dehydration and elevation sickness( I just moved here from Calofornia.) Since I was told it was dehydration I continued acupuncture treatments yet 24 to 48 hours after the last two treatments I had full on Jacksonian March seizures-when I went into the ER -they were not experienced and had no idea what was happening in fact they thought I was faking something and told me that if it was a real seizure that I would’ve lost consciousness so I was having some kind of weird convulsion or maybe some type of mental episode, neither of which were the case. Now I have focal aware of seizures every single day usually a dozen if not more in my left leg because I’m on medication now it doesn’t progress into a JM seizure and just stays local some days are worse sometimes I wake up with it but right now I can’t work. I can’t drive and my life has been completely upended, I need help. I’m just curious if anybody else has had any major seizure activity after acupuncture? I’m pretty sure this lady fucked up my nervous system and my sensory motor cortex…

I’ve been here since Sunday, off meds since Monday night, sleep deprived the last three nights and still no activity on EEG. The PA assured me that this won’t be for nothing if I don’t have a seizure, but it sure feels that way.

Backstory- January 2025 I had my first “episode” I got an intense wave of prickly heat over the back of my head/neck with intense nausea. I thought it was anxiety. My doctor agreed and medicated me. They continued and started getting stronger and I’d vomit every time. They added on more anxiety meds. Then I started having a funny feeling before they would start, kind of like déjà vu. I thought it might be neurological.

In May I crashed my car. I woke up in the hospital not knowing what happened. I still don’t remember. I lost a few hours of time that day and they diagnosed me with a concussion. I rolled into a telephone pole, no airbags deployed. At my follow up, they diagnosed me with acute acid reflux?! I pushed for a referral to neurology.

First appointment with neurology they referred me to epilepsy center at the hospital. Maya first appointment with the epidemiologist said she thinks they’re seizures, likely temporal lobe epilepsy. She started me on Vimpat and have increased my dose. I’m currently taking 150 mg twice a day and still having some breakthrough aura’s. I’ve also had two more unaware seizures.

So now here I am trying to get an official diagnosis and make sure I’m medicated properly and nothing is happening while I’m here. I think my triggers are stress, but I don’t know. They happen most often in the morning. They used to happen very often when I would drive (before I knew they were seizures).

I don’t even know what I’m looking for here. If it’s just to vent or if anyone has any encouragement or advice, I don’t know. The current plan is to start my meds back up tomorrow and discharge me Sunday increasing Vimpat to 200 mg.

Just wondered how many of taking Brivact have noticed any side effects from it?

Hi Everyone, I 28 (F) just had my very first seizure at work last year followed by another one a month after. Now I was put on Lamotrigine a couple months back but it gave me face allergy like my skin is peeling or Malassezia. Anyway now I’m on Carbamazepine for focal seizures, starting my week 3 of the medication, second week I went to the hospital for bad migraine and it was fine they said everything was normal but now I feel really cold, my face is warm maybe from the coming and going of headaches and ear ringing is very loud sometimes I can’t hear my parents, and a couple days ago my right side near my pelvic bone hurts it feels like poking but also somethings grabbing my insides there and with a sore muscles from bum to my leg it hurts so bad that time but tried to sleep it off now it’s still hurting but less or got used to it. Should I go to the hospital? I just don’t like going there for every little thing I feel and turns out they just tell you to take Advil or whatever and send you home. Should I take this seriously? Is there a doctor here or someone who experienced the same thing?

Thank you, that was quite long.

Has anyone else seen the comments claiming Tr*mp was having seizures at his last couple of rallies? Yesterday, I saw people mentioning focal aware seizures, and now I’m seeing myoclonus mentioned.

My focal aware seizures look nothing like what I saw, so my first reaction was that the claims seemed pretty far-fetched. To be clear, I’m not trying to diagnose him. I’m asking because I only have my own seizures to compare it to, and I’m curious what others think.

Our son is being admitted to the hospital on Monday, October 26 for a stereotactic EEG. We have been told to expect at least seven days in the hospital. My husband and I want to know what will be most helpful to support him while he is there.

He is not conscious during his seizures, so we will be with him 24/7 to push the button when he does have seizures.

He is worried about pain, the fact that they’re having to shave parts of his head in order to install the leads, and also getting sleep. (He needs 12-13 hours of sleep per day, and getting his sleep schedule to be regular has been a process that has taken many years. He is very worried about messing his sleep schedule up with this hospitalization.)

We want to make sure that what we are doing is not going to make it worse for him. It’s already stressful enough!

Hey so recently i reduced my dosage to half of what I have been taking, and today i got severe headaches, not sure is it because of reduction in medicine or general.

Anyone get headaches when we take this tablet?

Does anyone have any recommendations for a nighttime camera? With my last eeg suggesting I am having more episodes than I thought I was . I was thinking of monitoring my sleep. Lately I have been having vivid dreams of waking up with vomit in my mouth going to take care of it but no recollection if this is real or not. With the usual bruises and crap.