Typing this with pure anger in my stomach. This is the reason why I’m going virtual, fuck my college classes fuck my ap classes I can always take them next year my senior year. It feels like anyone can just be a 504 coordinator.

SO BASICALLY IT STARTS OFF WITH MY 504 COORDINATOR. When getting my 504 plan done she didn’t want me to have the elevator pass in short of “the possibility of having a seizure by myself in the elevator”, my school has 3 flights of stairs. I’m not even that irritated about not being able to use the elevator Im more so irritated at the fact that she was more comfortable with me falling down the stairs and injuring myself when I have a seizure than me having a seizure by myself in a elevator (which defeats the whole point bcuz I have a walking buddy with me 🤦 so I wouldn’t even be alone)

So my parents wanted to get me an Apple Watch to track my seizures. I went up to her and asked about having a meeting to revise my 504 plan on my parents behalf since my school is one of those pouches school where u have to put all of your eletrict devices in a pouch where its locked till the end of the day. She tells me it’s a law and my accommodations have to be within the law.

In which I have to bring up the “sealed for successes” in my district hand book you can read that “If your student needs access to their phone for medical accommodations, it is important to note that the current cell phone policy and guidelines have not changed. Therefore, students who currently require access to a cell phone or another personally owned device for medical reasons, or an accommodation based on their individualized goals, will continue to have such access.
Please work with your medical care provider and the leadership and nurse at your school to complete a student health care plan.”

plus there is a girl who also has FND who had her 504 made by a social worker instead of my 504 coordinator and she is allowed to have her phone. Mind u she was extremely rude, i just found her very unqualified for the 504 position.

Then we have one of the school nurses. Now all of the school nurses to me have been nothing but kind and sweet to me all of them expect this one woman. She is the oldest of them all and I hardly ever see her. I know because I’m in there every day to rest my head and I hardly HARDLY seen her. When I come in, she is rushing me like she is speed ruining nurse and ask me why I am in there. The other nurses know of my condition and seizures so they just tell me to sign in, let me go into my room to rest while they call my mom.

She yells at me to speak up and my reason for why I am in there. I have to tell her I feel dizzy. She starts to proceed to question why I am feeling dizzy, but luckily the nurses told her to let me thru so I can rest. But after they left she asks me again why I am feeling dizzy then proceeds to yell at me again for not speaking up. After telling her abt my epilisey and concussion she proceeds to not believe what I was saying and leads me to my room. Not even calling my mom. She does the same thing to other students even to this one girl asking for pads 😭😭😭

I feel bad coming over here, running to complain abt every bad thing that happens but geez. It feels like I’m being disappointed again and again and again by ppl I feel like I could trust.

Srs tho don’t be in charge of teenager’s medical plan if u don’t have empathy or understanding of conditions. 🤦

Hello all,

I'm just wondering if anyone else does anything random whilst seizing.

I tend to get up and do random things but I have no memory of them. E.g. I had 5 seizures today and I added cream to my cat's food and tried a spoonful from what my family has told me.

I've done a bunch of random stuff before too but I am just not sure if anyone else experiences something similar where they are essentially unconscious but doing something random. Similar to sleepwalking I suppose.

My pills with my medical insurance was 15$ now suddenly its 127$

Before I was on state insurance and my moms but mostly my moms would pay for it, it paid for my 3000mg keppra XR and my brothers adhd Adderall because I no longer live with her she didnt claim me this year on her medical but she did on taxes etc to get money from me, so she wouldnt have to pay bills but my brothers since hes still under 18.

Now based on medical it is expensive asf more then I could afford. I am at the point of giving up anyone ive complained to doesnt seem to understand that ive taken my meds so long and consistently it takes 2 days w/o to be in the hospital and everyone tells me "go on disability" as if it takes only 1 day to get signed up and approved for that, likewise i have been advised not to because I would never be able to work full time and afford a place of my own nd quite frankly im tired of being homeless/a bum to my family. I wasnt born with this it came when I was 15.

I get tonic clonic ive had multiple eeg and mri scans they cannot find the cause but so far keppra has worked for me. I am worried that if I have to go thru the dshs system and wait to be put on disability to get my meds I will soon be living in a hospital and hopefully not brain dead by the time im approved.

If anyone has any advice on how they navigated situations like this w/o family or friends help i would so so much appreciate it!!! To be more specific i am 19 (f) and live in the PNW atp im out of options

I’m a 23 year old woman, I’m a server at a 4 star restaurant and this February during valentines weekend, I experienced my first tonic-clonic seizure at work. Then a second seizure in April, and a third in June. they put me on Lamotrigine and I haven’t had a seizure since. I’ve read about the memory loss from other redditors, I experience that as well. I’ve noticed this past few months that my brain physically buffers before doing a simple task. For example: if I want to open the door to go outside, when I tell my body to do it, my mind spins and takes a few seconds to figure out the right way to do the task. I’m not sure if anyone else has experienced it. It is kind of hard to explain the feeling when it happens but it’s very jarring and is taking a toll on my mental health. Am I alone in this?

Update: I have ADHD and anxiety. I take citalopram and methylphenidate (Ritalin) which I have taken for at least 2+ years. After my seizures I experience extremely low phosphorus levels and needs to be replenished by a doctor. MRI and CT scans totally clean

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?

Does anyone have experience with toddler epilepsy?

My 3 year old has had several dizzy spells over the last 6 months where they say the room is spinning. They are clearly dizzy, aware of what is going on, and their eyes are trying to focus on me but moving side to side. One happened overnight and woke them up. I’ve made a neurology appointment as google searches aren’t more helpful than, “anything is possible”. Has anyone experienced seizures that are just dizzy spells?

12 days until epilepsy awareness month I'm so happy

I notice last few months if I dont eat much while on my meds for my refractory epilepsy I feel miserable. I feel like food can help me feel better mostly mentally while on my treatment for my disability. I take 3 different seizure meds. I take 3 meds at night and 2 in the morning. I recently went from taking Lyrica twice a day to one time a day. My 2 other meds are oxycarbazine and depakote twice a day. I feel nervous like im gonna have a seizure. I feel like im drugged and been having high blood pressure last few weeks on and off. After I take my oxycarbazone and depakote in the morning I been suffering basically mostly mentally and physically. I feel better in the afternoon often. Some days I can sleep well and wake up and do yard work and gardening. Ive tryed not having any thc into my body and its still the same. My neurologist agrees thc won't interact with anything I take. I feel like I cant have a life anymore with a normal schedule and routine. I feel like after I take my meds in the morning I gotta nap. And I force myself to count 90 backwards back and back its tough. I get out of bed a few minutes and go back to bed and eventually I get 15 minutes sometimes maybe 40 if lucky. I got a seizure letter my neurologist signed if I have a seizure in public with certain instructions. I always have to spit and ive had paramedics put a mask on me in a stretcher 3 years ago. I choked on my vomit when that happend ill make another post about this one day. I dont wanna hit my head heard on floor or concrete if I have a seizure one day. Ive had 2 tonic clonic seizures by myself last 45 days and this has never happend in years. Ive been suffering from seizures over 12 years now. I feel like trying out different routines and schedules and habits is the key to being seizure free for me in my case.

Warning…this is going to be a long winded rant:( I’ve lived independently since I was 19 and started having seizures at 23. I’m now 25, turning 26 in two weeks. I had my own place, my own pets, a good job and a nice car. When the seizures started I found a way to work and get around my city by myself while the seizures were controlled. Recently my seizures have picked up and it’s no longer safe for me to work. I was a surgical tech working in the operating room but I’m far too scared and sick to ever go back and possibly hurt someone while I’m there to help heal. My parents convinced me to move in with them into an extremely rural area of Pennsylvania. That involved leaving the city with public transportation, having to rehome my cats to my grandmas house, leaving all my friends, and lost the ability to work as I can no longer get anywhere without someone driving me and there is no public transportation here. They keep talking about eventually getting me a mobile home or something similar to put on the property. I know they are doing this because they are worried about me and are really doing their best to help but all I want is my independence back. I’m also a lesbian and can’t help but feel like as long as I’m out here I will never have the opportunity to be in a relationship with another woman. And just the general embarrassment of living with my parents and having to be supported by other people. I feel like a huge burden as I am bringing in zero money. My phone bill hasn’t been paid in two months and has been shut off and I’m too scared to ask them for help paying it. I had just signed a lease with three friends a month before I had to move and caused a huge fight with breaking the lease, how much rent I’d pay in the coming months and ended up loosing that friend. I still owe that friend money that I have no way of getting. On top of everything the house I just moved into was recently bought by my parents who are the caretakers of my grandfather with advanced dementia. They are currently still moving in and I’m being wrapped into their errands and tasks that need to be done. Another reason they convinced me to move home was because I’ve lost over 60lbs in a year due to lack of appetite. Not sure what’s causing that but they rope me into intense physically demanding tasks around the property like clearing trails, splitting firewood, painting the foundation, and raising the puppy they got for me because they felt bad I couldn’t have my cats with me. I now completely resent this poor dog that did nothing to me. I’ve lost 5 more lbs since being here for 2 weeks. It makes me think they didn’t even want me here to get better, they just wanted me here to help them move, take care of my grandfather, and take care of their new house in the middle of absolutely nowhere. I feel like I’m about to explode. Things are piling up and I can feel my kepprage seeping through. I have no plans of what to do next but all I know is I need out of here. I’m in the process of applying for welfare and disability but I’m not hopeful. Idk if anyone can relate at all and I know I’ve developed some intense anger issues possibly associated with the keppra. My drivers license is valid but they will not let me drive. The non driving aspect of this is really hard to deal with too, just with being so far away from everyone and everything I liked. I know it’s for safety but being hltold what to do by my parents at 25 after living and doing literally am everything on my own for years makes me so incredibly frustrated. Idk I’m just lost. Is this something I will just have to live with if my health never improves? Ugh idk I’m just really sad guys.

I’m curious on the overall effect of smoking weed and how it affects someone with epilepsy.

Is occasional use fine?

Does heavy usage reduce the effect of medication?

Does it help anyone?

Does anyone use it to assist with sleeping? Cause I’ve heard from many people that lack asleep alone can effect your chances of having a seizure

I am wondering if someone could give me some insight on what it feels like to be on clobazam. My son is 5 so he has a hard time verbalizing how it makes him feel. Since starting this medication he has been seizure free. However, Ive noticed he had increased restlessness and no attention span. I feel like he is constantly having racing thoughts on this medication. He is more tired at the end of the day. But also has a hard time falling asleep. I am wondering if someone else had experienced this or has any insight on how he may be feeling on this medication. The attention span is the biggest thing I have noticed. He cant sit still. Thanks for all your help, just a mom new to all of this.

Hi everyone,
I’m reaching out to connect with other parents of infants with epilepsy and ask how your little ones are doing. My daughter is 5 months old and has epileptic encephalopathy caused by a rare PNPLA8 gene variant. We’re still trying to understand her diagnosis, treatment options, development, and what the future may hold. It has been incredibly difficult and emotional, especially with so many uncertainties. For those who have been through something similar, would you recommend seeing multiple neurologists or seeking a second opinion, especially from a pediatric epileptologist?
I know every child’s journey is different, but hearing from other parents who understand what this experience is like would mean a lot to me.
How are your infants doing lately? Have there been any updates or changes in their seizures, development, medications, testing, or treatment plans? I’d be grateful to hear about your experiences and any progress, challenges, or milestones you feel comfortable sharing.
Sending love and strength to all the families navigating this journey. ❤️

I am looking for personal stories and experiences of parents with LGS suffering children finding the right care for their child.
What have you discovered? Who has helped? Where is the best epilepsy center or epileptologist? When should my 2 yr old child start receiving services like PT and OT and Speech. What other types of interventions have you tried? What is the cause of their LGS?
This is an SOS.
Please help.

i got high for the first time and got constant extreme seizure auras. for context, i have tonic-clonic seizures 1-2 times a year with no triggers.

my boyfriend and his roommate got a weed pen (cart) from somewhere where they dont card at a shop. it was my first time hitting a pen so my boyfriend told me how to use it. i ended up taking 4 hits because we couldn't tell if i was actually getting anything out of it since there was no smoke coming out of my mouth. personally, even if he thought i wasn't getting enough, i think i took too much. it took a couple minutes for me to feel anything, but it started with me feeling tingly. couple minutes later, i could feel my head get super light and i felt like i could faint any moment. it progressed and things got worse. i had to lay down because my whole body felt weak and parts of me started twitching. then i got an aura where i was going in and out of consciousness and my neck started doing the thing where it forces itself to the right and i cant move it and my eyes roll back. it's like my body WANTED to have a seizure but it just wouldn't happen (maybe because of my medication). at that point, i wanted it to happen so i could just go unconscious and let everything play out. i never had one though. i ended up falling asleep for a couple hours and woke up sober.

my boyfriend claims i was nervous and was just "convincing myself" that i was gonna have a seizure. i disagree because i KNOW my body and i know what it feels like before you have a seizure.

i would like to try the pen again and just take less cuz i just want a good high experience, but idk if that's a good idea. im curious to see if anyone else has experienced something like this!

Hello everyone, I’m hoping to attend ATP Flight School and eventually become an airline pilot, but I’m worried about my FAA medical certification.
I was diagnosed with epilepsy in 2013 after having one seizure. I haven’t had any seizures since then, and I stopped taking medication in 2021.
It’s now 2026, so I’ve been seizure-free for about 13 years and off medication for about 5 years.
I’m trying to figure out whether the FAA would consider me for a first-class medical certificate or special issuance, and how long the process might take.
Has anyone here had a similar experience with a past seizure or epilepsy diagnosis and successfully obtained an FAA medical certificate?
I’d really appreciate hearing from pilots or students who have been through this situation.

Hi all,

I was recently diagnosed with epilepsy (after years of being gaslit by hospitals and doctors… even after two tonic clonic seizures). I was finally diagnosed by a neurologist after my most recent seizure, but I learned more about focal seizures. I tend to experience the same type of focal seizures (phantom smells before vision loss and inability to move). However, I’ve had some other strange experiences that I’m trying to piece together to see if they fit into the epilepsy picture.

To those who experience focal seizures, are you experiencing the same type every time? Do yours start in different lobes of the brain and look totally different? Just trying to get some clarification, because I feel like I’m being crazy and too hyper-aware of anything that may seem “off”.

Would appreciate any input!

I myself am epileptic and a big foodie. A few years ago I tore up my tongue so bad that I've since lost all sense of taste on the right side. The absolute horror I felt in the aftermath of the incident and every time since however has left me with an idea I'd like to pursue.

I myself have a degree in anthropology and have worked in kitchens in the past but I've never been through the actual ringer of being a chef.

I want to write a short story, a horror story about being a young chef who has put in all the work and then losing their sense of taste as they cross the finish line. So more psychological/body horror. But I don't have the experience to know what it's like to have the background for the character in trying to write.

I'm wondering if anyone here has been through the CIA or similarly worked their way from the pit to the very top of a high end restaurant who can give me some insight. It would be especially helpful if you've literally bitten off your tongue like I have.

I'm on lamotrigine. Tonic-clonic under control. light focals/myclonic jerks 2-4x a week. 6.5 weeks pregnant (yay!) Trying to decide whether to go Midwife + MFM or if, because of the epilepsy, I should stick to an OB + MFM... what did you all do?

I've had epilepsy for like four years now, had most of my seizures first two years, then had a pause, and just recently I have had multiple seizures of all types and I have no clue what's going on.

I'm on Brevetiracetram (in the processof moving up doses to the max) and have been for only a month or two now and have had five tonic clinic seizures and around seven, probably more, focal awareness seizures.

I do not know what to do anymore. I'm barely recovering between bouts of seizures, I'm exhausted, I'm having to step down from my job, etc. I am at a loss. What to i do? Please someone help me, I'm so tired.

I (22f) had my first seizure (that I know of) when I was 14, I had an absent seizure when I first woke up, and that rapidly turned into 8/9 absent seizures a day. After finally convincing my parents to take me to a doctor, he told me it was just my period. I knew in my gut it wasn’t right but really couldn’t do anything about it as I was so young. This happened a few more times over the next year (always being told it was my period/anxiety) until I broke down crying at the doctors office begging them to refer me to a neurologist, as my aunt had epilepsy and had a 38 minute seizure at 19. Everything I saw on the internet pointed to it. I was referred to a hospital for a take home EEG. (covid) They saw no abnormal brain activity and put on my chart ‘button pushed are presumed to be accidental’, when in reality I was still having up to 15/20 absent seizures a day. After years of doctors telling me I was not having them and several unsuccessful sleep studies, I had a 58 minute clonic-tonic seizure at age 17. It took 3 doses of nasal benzodiazepines medication to stop the seizure. During this seizure I had a nicotine vape in my pocket, and there was thc in my blood, so the hospital sent me home less than 24 hours later telling my parents I had overdosed and just needed to ‘get sober 🙄’ , I was apparently in a state where I couldn’t recognize my mother or anyone I knew, was constantly trying to run away and was extremely aggressive, and thought I was in my bedroom while I was in the hospital. They did not put me on any seizure medication. I do not remember this entire year or much of my highschool experience. I was bed ridden for a month and did not make sense when I spoke for months afterwards. My parents then held it over my head that they couldn’t afford to send me to college because I ‘gave myself a seizure’ and it cost just as much for them as college would (yes, they have health insurance) Then I just continued on with life, having absent seizures, got my liscence and was driving. However, every 3 months I would get my period extremely heavy and thought I would ‘pass out’ (I was having seizures) while cramping. None of my doctors knew what to do about this besides put me on birth control, something my parents didn’t allow me to do until I was 18. I did not know these were seizures until I moved in with my boyfriend and he witnessed it. My parents did not believe him. Again, my dad’s sister that he grew up with has epilepsy. My doctors continued to tell me I was not having seizures and it was just my period. After another 2 year of this, I would wake up in the middle of the night asking for water, stand up and hit my head on dresser corners or the wall, have a seizure and have no recollection of it in the morning. I have no idea how long that has been going on as my boyfriend just happened to still be awake at 3am and witness one, then the sweet boy would wake himseld up at 2am every night and make sure I wasnt doing it. He witnessed jt 2 more times and sat me down and told me we need to go to a certian doctor. (people move to our state to get epilepsy care from him) When I finally sat down with him and showed him the video of my 58 minute seizure (the beginning was filmed) he was so shocked I wasn’t on any medication he sent me home with a prescription that day. That’s when I found out my previous care had put me down as someone who can’t have controlled substances (such as seizure medication) and nobody in that system had ever told me. I just cried on the way home. I’ve continued to have seizures and we just upped my medication to Vimpat 400mg daily, I lost my job due to not being able to drive and this entire year has been a zoned out blur due to this medication. I’m finally adjusting to it and I just feel so betrayed and neglected by both the healthcare system and my parents, this adjustment would have been so much easier at 14-17 rather than 21-22 when I have moved out and am working full time, my boyfriend has been extremely stressed and has to provide for me financially because my parents will only help if I move back home because they ‘disagree with my lifestyle’. I work 2 days a week but I’m barely even making my gas money back (twice as much now bc I get rides). If you read all this i’m pretty suprised but thank you for reading my story, and if you’re in the process of getting diagnosed PLEASE stand your ground and don’t let it take 8 years like mine did.

Does anyone know how long wait times are at SunnyBrook to get a diagnosis for epilepsy? I need meds now. Not 6-8 months from now. Can my family doctor give me bridging meds while I wait without a formal diagnosis? Im feeling defeated.

Hello,

My child is 5 and has refractory epilepsy. We are maxed on three drugs and to add a fourth we will need to drop or lower another one. They are already having breakthrough seizures - tonic-clonics and myclonics, suspected absence, as well as what we suspect is nocturnal focals.

We’ve had to pull them out of school. They are having focals and myclonic seizures on and off all day, and in between are crying, screaming and acting erratic.

Basically they’re being tortured and it’s painful to watch.

Is there anything we can do to make them more comfortable, short of rescue meds? Our neuro told us it will probably have to get worse before we can find something that works. We hate seeing them like this it’s horrible.

Thanks for sharing anything that brings you comfort. We do a lot of distracting, a lot of holding and cuddling, lights low, Tylenol when needed, etc.

Thank you!

No ai or bot responses.

My brother recently went S/E and from all this they decided to bump him up to 1200mg of OXcarbazepine twice a day which seems like a lot. He is a very big human being (6’3” and like 360 lbs) which could maybe be why? But I’m curious if anyone else has been told to take this much or if anyone else has been taking this much consistently.

In ireland only - how much is this on prescription? Where you are. I’ll call the pharmacy tomorrow but just curious to know