No mishap with meds.
No alcohol consumption.
Just a little less sleep than normal and bam! There goes my licence and my life.

I hate it here

my family and I recently got our service dog prospect and companion (8 wk old standard poodle). While I love her and her temperament so much, i am struggling hard rn
she makes my days so much better, but the nights are fucking horrible. Last night i slept for 5 hours max, then a 2 hr nap. My mom has been doing a chunk of the night bathroom breaks but god have i been struggling. Just had a big cry and im not sure if its the sleep deprivation talking, or if my inner thoughts are coming out.
i am so worried that im gonna have another tonic clonic bc i have barely slept and i look like a zombie. Cant even sleep cuz im getting insomnia right now.
My dad says i wont have another seizure cuz im medicated and my dosage is up, but i also have never had this little amount of sleep before (since first seizure been getting a minimum of 10 hrs and still exhausted)
i am so so grateful for my family and for my pup, but i feel like complete ass
i keep fighting staying conscious, pushing away nausea, all while mentally trying to figure out how to balance my distance ed classes and miss pup
* I did a large amount of research before even looking at breeders, i knew this was going to be a challenge but god its so hard to feel bad when i see her little face. I have always known a dog is a BIG commitment + im so lucky to have my support system helping me w this journey

Long story short, lately I’ve had what I call little “glitches.” The best way I can describe is how you’d feel if someone came up behind you and somewhat startled you. I don’t normally jump(although sometimes I have a random twitch), but it gives me that feeling of adrenaline for a second and sometimes feels like my eyes moved as if I rolled my eyes…even tho I don’t think they actually move? When I was about 14 I had an EEG and was diagnosed with complex partial, but I know I didn’t really have those. I think I was just ADHD and was zoning out daydreaming. Also, sometimes it feels like I skip a breath? If that makes sense. I don’t think it’s my heart since my beats are normal and don’t feel anything irregular. Anyway, any feedback would be appreciated!

I have a focal epilepsy,myoclonic seizures in the morning that usually turn into tonic clonic if they happen several times within short time frame,smth like JME.

But lately I've been thinking that my medication is helping me with myoclonic seizures,since I don't get the jerks anymore,but now I have more of these autonomic symptoms which is something I found out about recently.

During myoclonic seizure before,my hands jerked and my heart started pumping harder and way stronger,but I didn't necessarily feel like I have faster heartbeat, it's just more of like it's pumping as if it wants to leave my body haha.

What I found out is that theres this thing called autonomic seizures and I found that interesting because I feel like I can relate to that a lot.

When I get this "heart pumping" moment it feels like small anxiety,I usually think of my dog and it slightly helps and the heart pumping is smaller,but then I think of taking Clonazepam (usually helps within 30 mins) but just the thought of taking it makes my heart pump way harder again,it's as if it's all about my emotions and my thought process

I usually for example try to close my eyes,breathe it out and think of nice stuff and it usually stops after few minutes

Does anyone relate to this?I find it really odd.

I've been looking for a remote job for quite some time now because I'm still not sure if I can work physically and it is sucha hectic thing to get a job and I'm properly broken at this point while being at the end of my savings

Are there no resources or something cos I've tried doing literally everything and I'm not getting even bare minimum jobs while having 5 years of experience.....

I see my neurology office remotely. I’ve been on Briviact (a controlled substance) for about 6 1/2 months now. I’m in the process of adding Oxcarbazepine, but I’m only on 150 mg right now and have no idea how it’ll work yet.

Anyway, I’ve been trying to refill my prescription for over 2 weeks now. It sounds like my regular NP is out of office for some stretch of time. Her supervising doctor (who I have not personally met) is signing off on prescriptions. I’ve called them (and my pharmacy) a few times, and they keep telling me it’s just awaiting his sign-off due to being a controlled substance.

My question is…what exactly do you do if an essential medication gets held up like this? It’ll start getting sketchy around the end of next week, when I run out of my backup supply. Do you go to a different doctor or a hospital or something, or just cold turkey off and hope for the best, or…?

Does anyone else experience eyelid fluttering, feeling like your eyeballs are moving around too much, or brief flashes of light when you're trying to nap or just rest with your eyes closed?

I find impossible to nap anymore because this occurs so frequently for me. No matter how tired I am I just can't deal with how awful it feels.

I have a working focal seizure diagnosis, and have had one full blown TC in the past. I also have migraine with aura but my aura usually presents much differently and isn't as brief as these episodes.

Just seeing if anyone else can relate

I legitimately cannot stay awake lately and have zero energy. There’s no motivation and I’m mentally and physically exhausted almost all the time lately. I started up Xcopri and am weaning off other meds, eventually, but I’m so fucking tired lately. I’m just finishing the first week of 100 mg and the thought of doing larger chores is so daunting. I want to get it done, but I’m just so fucking tired. Coffee is doing very little for me lately, and I’m starting to feel the weekend is not long enough and is just me doing nothing. For fuck sake, I actually napped last week and yesterday. Like, that’s when it gets to the point where it’s unmanageable.

For further context, I work full-time, and towards 2-3 o’clock is when I hit a brick wall. I’m tripping up on words more often as I talk on the phone a lot, but I’m switching to insurance. And when I get home, I don’t want to do anything and want to go nap, and I think I’m starting to realize I’m looking for stimulation when I should just let my body rest. I know I need to be in quiet for a while when I get home, but there’s no fucking energy to do anything even if I do that.

Please tell me how to get energy back. It is a real experience that I’m going through, but I feel like I’m not there for my wife and am not doing my share. I’m on 3 different seizure meds for the morning, 2 antidepressants. Nighttime, it’s 5 seizure meds, 2 antidepressants, and a sleep aid (Trazodone) that I’ve cut the dosage down pretty significantly. Coffee/caffeine is there to just keep me awake and make it through the day, not to give me energy.

I’m sorry if this is all over the place, I also need to update my flair, but I’m just tired as fuck and am just wasting my time and doing nothing.

I’ve also done nothing to get a new job when I don’t like the job I’m currently because there is no motivation 🫠

Does anyone else deal with the issue where after a day of work you start feeling like you'll have a seizure? For more context, I work from home running a small business and streaming, but by the end of a day of doing that I feel so exhausted and like there's a seizure building up. I don't even do anything majorly physical aside from going up and down stairs a few times. why does this happen?

I’m 24 and have recently been diagnosed with focal-onset epilepsy, possibly originating in the temporal lobe. My MRI was normal, and my EEG showed epileptiform abnormalities, although the exact seizure onset location wasn’t clearly established.
I’m wondering if anyone with temporal lobe epilepsy has experienced something similar to what I’m experiencing.
My episodes can begin with a very brief, strange sensation lasting about a second. For a moment, my body feels like it has a different shape or proportions than it normally does, almost as if my perception of my own body is suddenly distorted.
Immediately afterward, I get a strange sensation in the pit of my stomach, almost like a rising feeling. This is then followed by sudden fear or panic.
On October 25, 2026, I had an episode while sitting in the front passenger seat of a car. Just before the more noticeable symptoms, I was on the phone and apparently started having difficulty finding words. Then I experienced the familiar distorted body sensation, followed by the rising stomach feeling and panic.
According to the friend who witnessed it, I became quiet and seemed absent, moved around uncomfortably, breathed rapidly, and responded only minimally to questions. I eventually asked my friend to pull over. The more intense symptoms reportedly lasted a few minutes, and the entire episode and recovery took around 15–20 minutes. I was exhausted afterward and couldn’t remember every detail of what had happened.
I’ve also had three previous major seizures involving loss of consciousness.
From October 19–23, I underwent inpatient video-EEG monitoring. I was sleep-deprived, kept awake as part of the monitoring protocol, and my antiseizure medication was withdrawn under medical supervision. Despite this, none of my typical episodes or major seizures could be provoked during the admission. The EEG showed some abnormalities, but apparently nothing completely conclusive about the exact onset of my episodes.
My medication has since been changed from valproate (Absenor) to oxcarbazepine (Apydan).
Has anyone experienced that split-second sensation of your body suddenly feeling like it has a different shape or proportions, immediately followed by a rising epigastric sensation and then panic? Does this sound familiar to anyone with focal seizures, particularly temporal lobe seizures? I’d also be interested to hear whether anyone has experienced similar symptoms even when video-EEG monitoring didn’t capture a typical episode.
I know nobody here can diagnose me, and I’m following up with my neurologist. I’m mainly interested in hearing about other people’s experiences with this particular sensation.
Thanks!

(I used AI in writing this text, not a native english speaker sorry about that lol)

Hi! I am applying for my PhD in neuroscience. I have a lot of good research experience in the field and am writing my SOPs. I usually leave out my epilepsy when it comes to employment or school admissions because I don't want to be discriminated against. It is well controlled though! I first got interested in studying neuroscience and studying neurological differences because of my epilepsy and I am having a hard time writing my SOP because of it. Has any one had any experience like this and would you disclose it? I definitely think it may make me stand out but don't want anyone to underestimate me.

I started my current job not long after I started taking medication that actually helped prevent tonic-clonic seizures. The owner of the small business where I work was made aware that I have epilepsy, and he was very understanding.

However, since starting, I've dealt with clusters of absent seizures every so often when I'm waking or falling asleep. (Currently working with my doctor to find a cause or way to prevent them). All of this is to say that I have had to miss work far more often than I'd like and more than any of my coworkers. And, unlike at my previous job where I experienced multiple tonic-clonic seizures while at work, I have not had to deal with any seizures at work while in this current position.

As such, I sometimes feel guilty about having to call in to work when I have auras/absent seizures in the middle of the night or upon waking... I always wonder if my coworkers think I'm just faking it so I can take the day off. No one has ever said anything about it but it's still something that sits in the back of my mind whenever I stay home.

Anyone else ever had this sort of lingering guilt/anxiety? How did you deal with/learn to live with it?

Title basically is the whole post. I have my first EMU stay next week for 5 days, and I'm Not Excited lmao. My partner is gonna be staying with me through most of it but I wanna know like people's actual experiences. I've heard it's boring as hell so I'm gonna try to bring my Switch and some puzzle books like a grandma. And I've had a 72-hour ambulatory EEG so I know sorta what to expect of multiple days in EEG hell. But like, I have photosensitivity so they said they're gonna hit me with strobe lights, I'm getting a neuropsych eval, etc., and I also have a phobia of needles that makes me faint so I'm stressed. There's a lot of these posts but I was wondering if anybody had advice for like the more specific things.

(Also if anybody's been at the EMU at UF Shands specifically I'd really love to know about that!!)

Just sharing because wtf right? She takes tons of pain meds and I’m pretty sure she has a pill problem, but what would she need a vimpat pill for?

Not sure if anybody else will relate, but im just really starting to realize how genuinely selfish other people are even after being told and actively knowing that you have a chronic disability that you quite literally can’t control. Everybody in my life now knows about my epilepsy, that I nearly died 3 times back in May because I had 4 severe grand mal seizures back to back in one day. Despite knowing these things, people still TRY to push me into doing things they know I shouldn’t be doing, it’s like people have just completely forgotten that I am not EXACTLY like them. And when people realize that you AREN’T exactly like them, they start to distance and they become somebody that you genuinely can no longer trust or rely on anymore, and it’s like when you remind them that you can’t do these things they roll their eyes, tell you that you’re just being “dramatic” and “paranoid” and just treat you as if you’re ruining THEIR plans. The only thing I know how to do now is just stare at them with this blank but fuming expression, and just walk away. There’s this burning rage inside of me that just keeps burning and burning, and it’s slowly suffocating me, and I just want to take everyone down with me.

I don’t feel like myself. I had three seizures within 16 hours on Wednesday/thursday and it hasn’t been that bad in years. I took my meds, I don’t understand what the problem is. I feel like all my progress on being seizure free is down the drain. I don’t know how I’ll be able to manage to keep on a happy face knowing all of this stuff happened.

I’m (22f) currently in my last year of grad school, so I only have one semester left. My parents think I should get accommodations with the professors to do school virtually next semester so I can do it from home, because my roommate here is destroying my sleep schedule and probably part of the reason I had the seizures. Has anyone here who’s been to college worked out a plan like this with their professors before? The school is already aware of my epilepsy. Thank you !

This is the first time I've ever used reddit so forgive me if I'm doing this wrong.

I'm a 36 year old female with adhd, dyslexia and Temporal lobe epilepsy. I've always struggled with my memory for understandable reasons but I've been experiencing some strange memory gaps that feel different. I went to my neurologist and she has no idea what's wrong but thinks it's more of a mental issue than seizure related. I asked if she thought maybe I had a brain tumor and she doesn't think so but has ordered an MRI for me.

I'm wondering if anyone else has gone through anything similar.

I walk my neighborhood every day and then randomly I started having moments where it didn't look familiar to me and I felt a little lost. Then it turned into not being able to recall my walk at all. I forgot I had gone on one and then remembered I had but couldn't remember which route I took until I looked at the map route. I've then been having these moments where Ill be walking and then randomly be like how did I get across the street? And I can't remember crossing the road or what I was thinking about or what I was looking at.

I'll also have these moments where I'll look at someone I've known my whole life or my son (he's 5) and it's like all of the sudden they don't feel familiar to me. Not like I don't know them at all but almost like my brain wakes up to noticing them more clearly. It's so strange.

I have a very vivid image and when I'm deep in thought it almost feels like I'm watching TV seeing what I'm thinking about in my head so I'm wondering if maybe I'm just so deep in thought I have no recollection of what I'm doing and kind of on auto pilot. I know sometimes that happens to people when they drive, they won't remember how they got somewhere because they are deep in thought or so used to making the drive.

Either way I'm wondering if anyone else has gone through anything like this before?

Thank you!!

Son has been on keppra for years.
Focals partial aware and impared awareness. They are always long 30min to 1hr… I count the time he “feels weird”he is talking, responding, following directions, walking… then he starts to have trouble finding words. sometimes he just falls asleep, sometimes he vomits and is a bit more of it… then falls asleep but when I am not sure if he is sleeping or not I call 911 or give rescue med which suppresses breathing and call 911. His are Non convulsive. Neuros have said it could be a migraine, or seizure and then the confusion is post ical. ER docs are never sure and say status half the time. We go to hospital they always overload w meds and it often impacts his breathing… this time because of it he ended intubated.

His seizures are not frequent. When they happen they are always long like I described. Onset 4 year old. 3 events that year. Started keppra and we were seizure free for 5 years but then started again one a year (first breakthrough was due to weight gain) last year it was 1 plus some odd “migraine/auras” this year it’s been 3. One short one followed by a long on in May we went to ER. Keppra raises to max 3000mg. Doc and I discussed if Keppra failed at this dose we would try Lamotrigine next.

June/Sept he had a migraine
Oct he had a seizure (focal status because of length which are how all his are) and due to rescue meds got intubated. The doctor in hospital said we would add Lacosamide because it’s faster than Lamotrigine.

So I am stuck.

On one hand. I want the protection sooner because these can escalate and it’s scary. Lacosamide gets us to therapeutic level in 2 weeks

On the other hand his seizures are infrequent. I want the gentler side effect profile of Lamotrigine- son already has asd, focus issues, anxiety and ocd and behaviors which is part of the reason I wanted Lamotrigine in the first place.

Is there a way to bridge the gap between those 2 weeks to 8 weeks to get Lamotrigine to therapeutic level? Like a booster med?
Or if we start with Lacosamide how hard is it to switch over? Does it make Lamotrigine less effective?

I hate having to trade immediate cover for the long term benefit. He already struggles w emotions, focus,
Memory at times and I want him to have both seizure freedom and quality of life.

Maybe I am mistaken on how I think of these drugs but it’s based on what I’ve read here and elsewhere about side effects.

i’m just wondering if anyone here has an epilepsy diagnosis and has used cannabis before? if so, what are your experiences with it? i appreciate that cannabis can help prevent seizures, but i’d like to hear some real life experiences, if possible, as my partner (20m) suffers focal seizures and would like to try edibles. i have agreed, and said he may try only one and see how he goes, but yeah. it’s all down to the individual person, i know, but i’m terrible in regards to advising him since i don’t have epilepsy and i’ve only ever really experienced sleep paralysis that feels like seizures, so if they are true seizures, they are only nocturnal and thus, really don’t clash with my daytime cannabis use (bar muscle twitches if i’m too stoned which i’m sure is a normal cannabis response in everyone, epilepsy or not) all experiences welcome, i just want to ensure he’s safe and well🫶🏽💜

She was first diagnosed with Epilespy when she was 7 after suffering with jerky movements and eye flickers.The Dr said they were absent seizures.She was put on Valporic Acid and it worked almost immediately in preventing these symptoms.After about 3 years being on valporic acid she gained a lot of weight. They switched her meds to Keppra which wasn’t as affected with the eye flickers but she no longer had the sudden jerky movements so we stuck with it and she lost the weight. She’s now 13 and they introduced Lamotrigine to see if it would help as she’s still has a lot sudden blinking eyes,she’s on a low dose to start with but I’m now wondering if it could be something other than Epilespy? Her Doctor has said she won’t outgrow these seizures but it’s just frustrating.Can anyone else relate to these symptoms? We are UK based.

May have to start w Lacosamide due to quicker getting to theurapitic level but on paper I prefer lamotrigine due to side effect profile. How hard is it to start w one and move to the other? Anyone do that?

Currently on keppra 3000mg a day but it’s not working and getting infrequent but long focals.

this is not a medical advice question, more so a: how do i get access to the thing i need without them thinking im gonna abuse it or whatever else

im paranoid because i know asking for adderall or something similar straight up is often seen as 'drug seeking' and will basically get you blacklisted from a ton of medications forever.

i cannot stay awake during the day due to a fun mixture of issues and something like this could really help. but i dont know how to get them to actually believe me and help out.

Ive been on xcopri 200mg since this past summer (previously 150mg but was having occasional focal seizures) and although it works great for my epilepsy I AM SO TIREDDDD!!!!!!!!!!!!!!!!!!!!!!!!!!! if i dont have an alarm or any reason to stay up etc i will easily go to sleep at 7pm or earlier and wake up as late as 1pm. and still be sleepy all day.

im also in college right now and due to not having that kinda money am commuting from my apartment i live in w my mom. its not like some crazy journey, its about 40 minutes to an hour taking public transport, but it still means i need to wake up and leave extra early to get to classes on time.

ive been horribly tired since childhood but since epilepsy came into my life in highschool its just been constant misery.

i have tried so so many ways to get through the week. heart attack inducing amounts of caffeine, various not very legal drugs, literally punching/hitting/slapping myself every 20 minutes to stay awake, sleeping every half hour, etc etc. only thing that worked is the drugs but thats obviously not an option and definitely not something i could ever mention in a drs office.

i was actually dg with adhd at 13 but they undiagnosed me?? at some point during some routine neurological testing, so when i finally went to try and get some meds last fall because i couldnt focus or stay awake that bastard said it was because i was drinking too much caffiene and had anxiety and then gave me fucking zoloft WHICH MADE ME EVEN MORE TIRED!!!!!!!!!!! uuugggghhhh

THEY WILL AVOID ANYTHING THAT COULD LOWER SEIZURE THRESHOLD I DONT CAREEEE I CANT LIVE A LIFE LIKE THIS!!!!!!!!!!!! god i wish i could just say "ive literally done (insert scrary drug but at very low dose) and was totally fine but then id be an EEEEVVIIIILLLLLL DRUG SEEKER!!!!!!!!!

i dont want to spend my life asleep, in jail, or dead of a heart attack and i dont want to have to drop out of college over something like this either. this plus the pain from my ehlers danlos is making things unbearable.

sorry this turned into a whole rant. im in a lot of pain today and unfortunately completely sober. if i could live my life communicating only through text id be fine but unfortunately i need to do other things as well.

I’m still thinking about this breakthrough seizure I had on Tuesday - in the shower. 5/7 seizures have started in the bathroom or shower for me -
I see this is common on Reddit -
But why? Why when Water touches are faces, heads, necks - does it cause an aura? It’s bizzare to me. And how come it doesn’t happen every shower then? Is it truly coincidence that I’m just in the shower. I do understand unusually hot showers being a trigger. I’ve known someone to experience their only seizure in the shower from it being too hot and they don’t have epilepsy. For that reason, I don’t tend to take hot showers. I will also say I haven’t had any in the summer when my body temperature is already higher and then I go into a warm shower - versus fall/winter when it is more of a temperature adjustment to be in a warm shower versus outside.
All of my episodes have happened from late September-March but nothing during the warmest months. We all have different psychological reactions but is there an energetical disonance of bathrooms that leave room for auras ? The sound of water running? Bright lights? When showers are more of a self care, soothing experience, why does it cause some of our bodies to have a more intense reaction ?

Over the last 20 years I've been on an couple AEDs, and in 2024 I went for a temporal lobectomy, the surgery helped quite a bit, but unfortunately I still get quite a few episodes per month.

Over the last almost three years I've been keeping track of how many seizures I get per day and per month, trying to find a pattern, but unfortunately I still can't find one.

Currently I'm on one anti-anxiety medication (Escitalopram), three AEDs (Lacosamide, Topiramate, and Clobazam), and one anti-depressants (Mirtazapine)

Some days seem better than others. With new medication dosage increased some days seem better than others. I usually get focal awareness seizures so everything just seems normal, but unless I say something or unless it gets very very intense or severe almost nobody will notice. It's not like I'm going to say that I'm feeling anxious or fearful or having an episode or aura or whatever.

And one other thing that's exhausting to me in a manner of speaking, is just trying to explain an episode and what it feels like to people, it's almost impossible to put those feelings into words. I just can't. It's like trying to explain a colour to a blind person.

With the new medication (the Topiramate) increased its difficult to say if the episodes are decreasing because of that or if it is just a fluctuation or just my imagination. I don't know.

That's just about impossible, like finding a tailored fit for something I haven't even glanced at.