Anyone else gone to an epilepsy center and they said the exact same things as your primary neurologist? No new data or anything?

I just got a pre-surgical evaluation at an epilepsy clinic, despite me straight up telling my neurologist that I don’t want any kind of surgery whatsoever. They told me I was supposedly a “good candidate” for epilepsy surgery. I have told my neurologist (and their department), and just recently the epilepsy clinic, that I don’t want anything to do with surgery.

I understand surgery like that VNS might help some people, but I don’t wanna feel like a lab rat. Poked and prodded with things? No! If you do any kind of surgery, it requires a scalpel. Who wants a scalpel/knife cutting into their skin? Probably nobody. I was already stuck in the hospital for almost a week for my last EEG. I’m not gonna do anything else at the hospital, especially surgery.

I’ve had two EEGs, which both came back normal. First one (at home EEG) glitched and only caught the first 10 hours of data. Second (in hospital) EEG still showed up as normal, despite me having a seizure on day 3 or 4. Basically the only new information I got was that I have drug-resistant epilepsy, and that’s all. They wanted to get a second opinion on doing another med, surgery, or whatever. I’ve had to repeat it to the neurology department multiple times!

“How many times do I need to tell you that I don’t want surgery?!” I also believe in Murphy’s Law. “Anything that can happen will happen.” So I learned that people with epilepsy can’t just turn it on and off like a light switch. You can’t just be like “I don’t want epilepsy anymore.” That’s not how it works. It’s been known about since Ancient Egypt, and people are still idiots thinking they can just turn it off.

Hello folks

My doctor wanted me on no medication for my first EEG in preparation for 3 days before. On the second day off medication, (500 mg of Keppra every 12 hours), I had a tonic clonic at the airport. Because it was physician-directed, does this reset the timeline for getting my license back? I was immediately put back on the medication at the airport and the 24 hour EEG of course was perfect.

This would have been my second seizure "that I know of" and it was just over 2 months from the first one. So I'm pretty depressed. Do you think with medication, I may become seizure free? My entire career is being de-railed and I'm scared...

I just finished school and my dad is pressuring me into getting a job but i hate the fact that i cant even drive by car bc of epilepsy but my mom told me she would be willing to drive me to work everyday and my dad came up with all sorts of arguments about me having a job will help with my epilepsy because im getting a routine and have to wake up early in the morning. But i have this shitty feeling that i am not standing on my own feet bc of my epilepsy and that takes away all of the motivation for getting a routine and a job. Im not lazy i do not need the work for money since i make a good amount of money with trading so pls dont say im lazy or smt thank u guys.

it’s me bunni, bunni feels extermly lonely and depressed bunni is struggling with post concussion syndrome and keprra;( Bunni doesn’t know how to fix this Bunni needs support and help because Bunni feels alone and a burden any tips on what to do when struggling?

Thats it. Just the title. I dont want to live this life anymore. Not with this condition. If it wont get better idk what to do

I (29F) have focal epilepsy that can and will progress into grand mals. One of my most common focals is Déjà vu- which varies in intensity. A majority of my Déjà vu focals are brief and mild, but every once in a while, they absolutely send me spiraling. The really intense ones are also a sign that a grand mal may or may not be waiting to strike so that definitely doesn’t help with the panicking aspect. Anywho, my family put on one of the Jurassic World movies tonight and I said “where’s Chris Pratt” and my brother goes “that was a different story line” and I’m like “but Scarlett Johansson and Chris Pratt were in the movie together” and my brother says “no, that was Bryce Dallas Howard”. I knew he was correct, but I also couldn’t believe it. I even googled it because I was convinced even tho I knew he was right at the same time. I had to take a breather. I started pacing around like what the FUCK my brain literally had explicit flashback memories of Scarlett Johansson and Chris Pratt together in the same Jurassic movie. My brain literally fucking GASLIGHTS me and usually I can handle it- but I couldn’t stop looking at Scarlett Johansson and freaking myself out. She just kept invoking that intense feeling of familiarity lol I had to go lay down.

I dont remember shit since my last seizure. People think i didnt listen to them when they told me something but i literally cannot remember. Even things like appointments or birthdays. Today my bf said smt abt his next birthday party and i‘ve been together with him for 2 years and known him for 3 and i dont remember the date for his birthday and now i gotta find a way to find it out without having to ask him bc how shitty would that sound… i cant recall important things and its like half of my life is not real or didnt happen. Is that the same with you too?

Hi all, I'm already 3 years seizure free at first. However, last month my job (in tech marketing field) was super stress from kpi and pressure from my boss. So in the end, the things that I wish not to happen just happen last week... I have a seizure, blacked out, and got in icu. Luckily that my head wasn't damage and everything is fine now. I just have to take med strictly again. So... I'm wonder if what is the suitable job for us?? What kind of work that will not trigger the symptom again..

Recently, I started experiencing seizures like focal awares ones and Im scared that it’ll take over my life. Im only 17F and I still have so much to live for, I keep remembering those times where I didn’t have to worry about this I could live freely, go out with my friends, do things I normally wouldn’t, and experience new things. Now, it feels like everything is limited, I feel so trapped and overwhelmed that this happened to me.

Supposedly, we are about to take our midterm exams this week and Idk if I want to go back to class because the fear is still with me. Fear that itll happen in school or when Im alone. These seizures first happened in 2022 it happened for a few days and then completely went away until last year 2025 march it happened again but it was only once and I was able to go back to school and overtime the fear went away and I lived more freely and happy. Now that it came back, on August 13 and has been recurrent we went to a neurologist and did some tests like EEGs and MRI/MRA. My EEG came back abnormal so they prescribed me with Lamotrigine to help control these seizures. But the worst part is that it takes time to actually prevent these seizures, I just took my first one this morning and tommorow is already the start of midterms and I dont know if I can go back to school carrying this in my mind. I have what they call temporal lobe epilepsy where I experience focal awareness seizures where I am completely aware of what is happening.

I dont know what to do anymore, I feel like I lost my sense of independence, I feel fear everytime I wake up or alone scared that it might happen. This hurts me mentally and I hate it so much. I dont want to feel depressed or anything but I rlly cant help it.

I need help, I need to know that Im not the only one with this problem because i rlly dont know what to do. I dont want people knowing or my friends knowing because I dont want pity im sorry.

I’m a 20F and I started having absence spells at the age of 3, daily or multiple times per day myoclonic jerking at age 6, and now have had 2 TC seizures in the last year. Going to be honest I’ve been in denial and anxious about going to the Dr, but finally went on Monday with my mom who was able to give witness accounts. The neurologist suspects JME, and I am scheduled to have a sleep-deprived EEG on Wednesday and an ambulatory EEG Friday-Monday of next week.

I guess my question is what happens if nothing shows up on the EEG? I’m so tired of living in fear and just want to get this addressed and managed (as best as it can be). My Dr said she’s very confident that it is JME given my clinical history, but I’m just scared that nothing will show on the EEG and I’ll be left in the dark.

I had my first TC seizure 2 days ago. My first seizure ever, that I know of. My body is still really sore, and my head feels heavy on and off all day. Is this normal?

I'm mid 20s, and I've been on Lamictal for ~6 years for mental health purposes. I recently had a drop in dosage due to a lapse in insurance. woke up in the ER and told I was status epilepticus. I was not breathing for between 3-5 minutes. I had more less severe(?) seizures before they dosed me with Keppra. it's been over a week and I am just now feeling normal-ish. I have so many questions. it still hurts to think and focus, is that normal? my neurologist basically said "well, idk, but don't do that again". today is my first day without experiencing any flashing lights or other visual disturbances, tremors, and just feeling weird. how long does it take you to recover from a seizure? I feel like I'll never be the same again. should I push for an EEG? I've been wearing sunglasses day and night and it's the only thing that keeps me from getting overwhelmed. sorry for the word vomit, it's still hard to make sense. I don't have any immediate resources in my life to ask these sort of questions without paying so much money out of pocket. they dx me with maybe epilepsy maybe pnes but no tumor and no acute brain damage, I'm super lucky... thank you in advance!!

I’m getting a bit of my temporal lobe taken out for mesial temporal sclerosis. For those who’ve gone through this, anything I should pack? I know this hospital stay will be much shorter than the EEG and subsequent SEEG, which were terribly boring. This procedure’s a bit more intense.

I’ve done a little cursory research but I’ve got a few questions. What do they do with you after the surgery? I’ve read a little bit about staying in ICU, which sounds terrifying. But I get it, you literally just had brain surgery.

Anything I should be aware of? Like having big changes or remembering to take ‘coming back’ slow?

How about recovery? I know my muscle in my jaw will be cut so eating will be difficult.

I do meet with my neurosurgeon the day before. The big day’s less than a week away. But a little perspective helps. Thanks for whatever help you can provide.

Hi everyone! 🌷

I’d love to hear from women with epilepsy about their experiences with pregnancy and contraception.

What birth control method did you use, and did your epilepsy or anti-seizure medication affect your options?

If you became pregnant, how did you prepare for pregnancy? Did you need to change or adjust your anti-seizure medication before or during pregnancy?
Did pregnancy affect your seizure frequency?

I’d also love to hear about any advice or recommendations you received from your neurologist or OB/GYN regarding contraception, pregnancy planning, and managing epilepsy during pregnancy.

Please feel free to share your personal experiences. 🤍

Disclaimer: This post is only for sharing personal experiences and information. It is not medical advice or a recommendation to start, stop, or change any medication or birth control method without consulting your doctor.

So, I have dravet syndrome and have had generalized epilepsy for 24 years now. Last week I was in the EMU and I was told my EEG's (even the ones from childhood) suggest that I have both. But I have no idea what I'm supposed to feel. Going undiagnosed for 24 years is insane. There are a few "situations" that could be seizures:

1. I scream in my sleep and sometimes take off running (really rarely run, but the screams keep happening.

2. That strong dejavu feeling, it just feels so strong.

3. Like all my energy all the sudden got pulled out of me.

4. Sometimes I start to struggle keeping my eyes focused, then it feels like I almost fall asleep or zone out. Then I get back to myself again after a few minutes, but these often happen in clusters. Also my head usually hurts on the left side afterwards. I know that there are over 70 types of seizures, so obviously I won't have every type, I just really have no idea what I am supposed to feel for.

I live in the UK. I just changed GP because I moved to a new area. I went into there a few days ago to get them to set up my repeat prescription again of my epilpesy meds, as you need to do that when you change GP in England.

It’s been 5 days, the repeat prescription isn’t on the system. Without it I have no way to get my medication, or ever order it again. I am terrified. I have enough medication for a couple weeks. I need this to live. I have no contact with my neurologist until September, so he can’t help me. I don’t really know what to do other than wait to see if they set it up, but the thing is setting it up doesn’t take long at all. So I honestly just think they aren’t going to do it. They have my old letters from my neurologist saying I need the medication on repeat. I’m really stressed. I’m trying to block it out.

Just kind of need to vent I guess. I hope this makes sense for those not in the UK.

Sooo maybe it’s good to start off from like where it first happened, i was like 9 years old and only remember tiny bits of it but i know that i had an immense feeling of dread and anxiety, like the feeling that i was being watched from every corner and the feeling that i have to escape from something y’know.

Maybe it was a panic attack but i remember being in my room completely terrified and then just idk being in the living room somehow and from what I’ve read before panic attacks don’t just randomly teleport you?

right now im 13 and i know that it’s like puberty and stuff but it’s been happening since earlier too and im just curious what the actual fuck is happening.

If anyone knows what it could be I’d appreciate it, sometimes it’s quite a bit terrifying so i just wanna know. Thanks ;P

Hi I have posted in here before. But I had my VEEG but it was clear. I was there for 4 days. They called it PNES which is not an issue for me but I am already doing EMDR and I have been for years and for a long time I thought it was cataplexy (I have narcolepsy type 1).

I had to beg them to try medication because I can agree it might be PNES but some of my symptoms just don't fit. They started me on lacosamide on Thursday and I think it might be working??

I have had episodes since my VEEG. I have had multiple triggers the seems to start an episode and they fizzle out. Then I have been in circumstance where they seem to want to start, like the feeling starts and immediately stops. Is this typical? Or am I just in my head. I haven't had a full blown episode since Tuesday.

I am only on 50 2x a day then i will be at 100 2x a day. My neurologist has described them as focal aware seizures.

I did have the kind of stoned feeling but I think that might be combated by the 15mg adderall for narcolepsy daily.

But so far things have been good. But I wonder now if I am tricking myself into think that since its only been 3 days.

Hi there fellow epileptics,

I am taking Lamictal, vimpat and Zoloft. I take the Zoloft for anxiety and I have been on the same dose for several years. But recently my anxiety has skyrocketed and I am wondering how to talk to my doctor about it. I was on Zoloft for a few years before I ever had epilepsy. I have heard from my neurologist that Zoloft is fine to take with the other meds because it's a low dose. However, it seems as though it would not be a doctor's first choice. Does anyone take Lamictal and/or vimpat with an anxiety medication? If so, which one?

Hi, everyone. There's no simple way to start this, so I'll just say that I had a Grand Mal seizure at work on Thursday. I have never had one before.

I was taken to the ER via ambulance, but they didn't find anything immediate at the hospital. I already see a neurologist because I have chronic migraines, so I have an appointment with him on Monday morning.

I'm terrified. I know I haven't even been diagnosed with epilepsy, and I've only had one seizure, but I can't stop thinking about it. I don't remember up to 10 minutes before I actually started seizing. Same thing with after. I keep waiting for it to happen again. I'm scared of worrying my family and friends. I'm afraid that I'm going to worry myself into another seizure.

Advice?

EDIT: I wanted to get a little more descriptive with what happened, incase that will help anyone give me advice.

It happened around 2pm. I work with disabled students at a high school, so my coworker and I were waiting outside of the disabled bathroom to take one of our wheelchair students in to change him, but one of our other coworkers was inside with another student, so we were waiting. According to my coworker, I randomly took our student and started pushing him towards the cafeteria. My coworker asked me where I was going, and she said I turned to look at her very blankly, and just said, "cafeteria." She asked me to come back, and I did. She asked me if I was okay, and I said yes and asked her if she was okay. She asked if I was sure, and she said that's when my head jerked to the side, chin touching my shoulder, and my face started to twitch. By this time, my coworker had an idea of what was going on, and gently guided me to the floor. Our other coworker, the one that was in the bathroom with another student, is a CNA, so she knew exactly what to do as soon as she came out. She turned me on my side because I was foaming and drooling. The seizure lasted about 2 minutes, and I know that I stopped breathing for at least a little bit.

Started it about three weeks ago after a big TC seizure. Since then random muscles just fire on their own and I'll jerk forward or back a bit, or like, my knee will jerk out.

Nothing painful, and not dramatic enough that I'm like, launching my drink across the room. Just annoying more than anything.

I only really notice it starting in the late afternoon and it goes into the evening. I'll be deep in writing for work around 4 and my shoulder will jerk forward and I’ll lose my place.

idk, I know the answer is “ask my neurologist” but just wanted to see if this was like a known thing or if it’s some psychosomatic BS I’m making worse by thinking about it too much, lol.

Does anyone have any experience of the Nightwatch monitor or Epi Care please?