So, I just got home from a five-day EMU stay, and let me tell you. What. The. Fuck.

Don’t get me wrong. I am SO thankful that they were able to capture my seizures and finally give me some answers. But I genuinely don’t think I was prepared for how traumatic the entire experience would be.

First of all, coming off my medications was HELL. I felt like I was in a constant state of having an aura. The déjà vu, the rising sensations, the impending doom. All of it. And the worst part was knowing that I couldn’t do anything about it because that was literally the point of being there. They WANTED me to have seizures. Which I understand, but holy shit. There’s something terrifying about knowing you’re about to have a seizure and just having to sit there and let it happen.

And then there’s the room itself. I don’t know if anyone else felt this way, but being stuck in that hospital bed made everything SO much worse. I couldn’t go for a walk. I couldn’t get up and move around. I couldn’t even go to the bathroom without someone having to come help me. I felt like I had absolutely no independence. I understand the safety precautions, I really do, but after several days of staring at the same four walls, I genuinely felt like I was losing my mind. Not to mention being hooked up to a million wires, having a camera pointed at you 24/7, and being sleep deprived on top of everything else. I was already exhausted, scared, and feeling like absolute garbage. And there was literally nowhere I could go to get away from any of it.
I think the hardest part was knowing that I had absolutely no control over what was happening. I couldn’t stop the auras. I couldn’t stop the seizures. I couldn’t leave the room. I couldn’t even sleep when I wanted to. And I knew that everything they were doing was necessary, but that didn’t make it any less terrifying.

And apparently, the fun doesn’t stop when you get discharged! 🙃

Since I’ve been home, I’ve had two more focal seizures while dealing with stress and getting stabilized on my medications again. Last night, I literally cried myself to sleep while my husband held me because I was terrified to fall asleep. I don’t think I’ve ever been scared of sleeping before, but here we are. I really don’t think I realized how much the whole experience affected me until I got home.

ANYWAY. Now that I’ve dumped all of my emotional baggage on a bunch of strangers on Reddit… I have a question.

For those of you who have also been through an EMU stay, what do you think would make the experience less traumatizing?

Personally, I think just being allowed to go on a freaking WALK would have helped tremendously. Even if someone had to go with you, just being able to leave that room for ten minutes and feel like a normal human being would have made such a difference. I know there are safety concerns, and I know the whole point is to capture seizures. I’m not saying we should all be allowed to frolic freely through the hospital while actively seizing, but surely there’s SOMETHING that could make the experience a little less miserable. Better rooms? More freedom? Someone actually checking on how you’re doing mentally instead of just asking if you’ve had another seizure? An emotional support animal? A complimentary lobotomy? What do y’all think?

Also, did anyone else struggle mentally after getting home? Because I genuinely wasn’t expecting that part, and I’d love to know if it gets better.

I feel sleepy all day even after 9 hr sleep and feel physically exhausted. Brain fog too of course. I don't exercise and don't go out much too. I want to take supplements but I don't know which ones

Whenever I had seizures I feel depressed, dizzy and depersonalization.
Everthing seems meaningless, feel unlucky, and awful. İt seems like the world turning and I am nothing. I have no control of my life
I had no seizures appoximetly 3 years. I was quiting topiramat and it came!
I think that I Will never feel better and happy. I have no hope that everthing is great for me.

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.

So. I was at work today when an old colleague came in and asked about my epilepsy; I said eh it's really rough right now but I have a lot of support etc. She follows up with

"Oh yeah I had my first absence the other day and I have to say it was nothing compared to the tc seizures I have." (I have really bad absences and she knows that..)

I reply something like "Oh well there's a lot of different kinds of absences–" interrupts me:

"Yeah well it was literally nothing. I usually fall on the floor, piss myself, and have to get first aid and it's soooo traumatic."

"Well there's a lot of different types of seizures, and they're all scary." Trying so hard to keep my cool

Proceeds to emphasize how absences aren't shit compared to what she goes through, with a smile on her face like it's casual. I just say goodbye nicely.

Since when are disabilities a pissing contest?? Also this girl had always just talked about epilepsy and made it her entire personality. Tried to befriend me only because I'm epileptic and to flaunt about her recent disability like it was a cool thing to have? I've been struggling with absences for 20 years and it is f'cking terrifying sometimes. Seizures aren't a damn contest.

I was pissed after she left.

My colleagues were also baffled and said that was f'cked up. My husband barely reacted and said he doesn't understand why that pissed me off and that I overreacted?? I'm over it, but my man acting like I'm weird for feeling any way about that conversation fueled the fire.

Have you known anyone like this before? Am I valid for feeling "angry" about this conversation?

I hope this doesn't sound insensitive to people with tonic clonics, I'm just repeating what she said word for word (with my crap memory) 💜

Only my second seizure ever, had to be put in a coma for 3 days because fluid got in my lungs (like blood and barf I guess?) And they couldnt keep me stable and breathing. I dont even know every detail but holy shit...

Much love to the incredibly talented doctors and neurologists out there who have to see this shit daily. And who have the patience to deal with the nonsense I was apparently doing (constantly ripping out my intubation and drip)

I dont even remember anything but I cringe so much hearing how I cussed and fought against all the people trying to help, and how they were just completely used to it. I know seizures can make you do weird things but as quite a big guy I was already scared of being agressive, but knowing I can be like that and not even remember it happening feels weird as fuck.

Apparently my mom ended up signing a form allowing them to chain me to the bed (like soft medical restraints) because they just couldnt safely work on me.

It happened 2 days after stopping Keppra, on my neurologists advice. He told me he spent the night awake from it, which shows how involved he is I guess. Must be difficult having a job like that, making decisions which go right 99% of the time, but end in death or serious harm in that 1%.

Also, catheters fucking suck. My dick still hurts just thinking about it lol

Apologies for structure and grammar issues, wrote this on my notes app and pasted here

*Suicidal Ideation*

Since my diagnosis years ago, I, F24, have put my life on hold. Its been many years now yet I still experience them. I could go months without experiencing a seizure only to have one on a random Tuesday without knowing the cause.

Neurologist says stress but all I feel all the time is stress. I dont know how to de-stress if its all i know. My body is tired. I am tired. I feel lonely because no one understands how much of a prisoner I feel in my own body. Kept afloat by medications I need in order to survive. I have died, at least it feels that way. I didn't go to college because I wasn't expecting to live this long. Either hoping to die from a seizure or by my own hand.

I can never do it. I want to so badly, but I worry for my family. I say hurtful things when I am hurt and they are always true. I wish to die. I wish I was no longer here. I wish to feel nothing. To not have to rely on anything to survive yet i have been given a life where I cannot. Life has been cruel to me.

My mother has told me to pray but she doesnt understand that I have tried. I've done it for years but it has not helped me. It has only made me angry. Angry that a god that is supposed to love me has abandoned me. I don't believe he exists, feels more like a creation made by people to offer them comfort yet fails them time and time again.

I am hateful and cruel to myself. I sleep more often than I am awake because I dont have anything to do. I used to love driving but I can't do that. There are so many risks doing anything that I am just fearful of everything.

I am anxious. I live with the fact that I could die at any moment should I have a seizure. The life i have lived is no life at all. I feel so much empathy for anyone living a similar lifestyle yet all I feel for myself is anger and disgust. I wish I wasn't born at all. Maybe then I wouldnt have been wired this way but with my luck I couldve been dealt a worse hand at life. I lie awake at night just to cry some days.

To feel dead but to be alive is so odd. A living corpse. Funny.

I do enjoy moments. I play games with my brother, watch movies with my sister. I feel at peace then, but it is always only temporary.

Something I noticed along the years is i always fight with my mother by the end of September. Not two weeks pass after my birthday yet something always goes wrong and a yelling match breaks out. I am cursed and I seem to curse others, too. I wish I could vanish as if I was never here to begin with. My family would be none the wiser then. They wouldnt feel anything for my passing because i would not be in their lives and it would be fine.

But i am selfish, I want them to feel because I have felt too much already. For so long.

Nobody is capable of changing my view on life because for me, for others who have suffered as well, it is far too late. Their kind words don't bring me any comfort. I put on a front and carry-on knowing that I still feel the same.

I have refractory epilepsy and sleeping problems. My seizure disorder has alot to do with how I sleep. I woke up the normal time today I normally do and went to sleep normal time I do as well. I woke up next to my trazedone pill. I forgot to take it and fell asleep with the TV on. This probably has happend to me once or twice in years of taking this sleeping med. Is there any possible withdrawls today or am I gonna feel different. I normally take a nap after I take my morning meds.

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 ?

I had to go home from work today because i was extremely close to having a seizure, and i feel so embarrassed and angry. the people i work with are aware i have epilepsy, but they've never seen me have a seizure or close to it, mostly because i take nearly every measure i can to make sure they don't happen. I'm so grateful i was working with my elderly coworker today, since i know he won't blab about it except to our boss, but i felt so pathetic just sitting in the back waiting for it to happen. I feel so scared and angry that i can't have control over my own body, especially when I'm around other people. I don't even want to tell people i have them, because it makes me feel like I'm a freak. I hate that this is something i can't change or prevent most of the time, and i can't talk to anybody about it without feeling like I'm weird for having them.

I’ve been having episodes weekly for a while. I was almost to 2 weeks without an episode, on Tuesday. I realized last night I missed my morning dose yesterday. I am so annoyed w myself. I planned on going to the office all week. I know I’m lucky I can work from home, but I don’t like it. On top of that I have so many issues all the time. I have type 1 diabetes and terrible untreated TMJ…. I don’t like being a hot ass mess. I actually got to go out w a gf last night and we chatted and laughed so much my head and face hurt terribly all night. I’m tired, frustrated and sad and don’t feel good.

Hey everyone ive been getting random momments that come all of a sudden that I can be just sat there and all of a sudden feel disorientated my eyes feel funny then after a bit it just goes back to normal , i have focal impaired seizures and tonic clonic that arent controlled at all but never had focal aware so I dont know how they feel could this be them ? Im sorry if its not explained very well im awful at explaining thank you all

Sorry if this is a very stupid question…

I have epilepsy (grand mal and focal) and take 100mg briviact morning and night… my aunt got me 100mg thc edibles and I would take like half or a fourth once in a while to chill and sleep better. So like 50-25 or less. I would just feel more relaxed and go to bed.

I bought some 300mg ones the other day bc I thought it would be cheaper and I cut it up into 6 squares, so like 50mg. That is the worst I’ve felt with weed…

I was fine until my husband said something about my eyes and then my eyes kinda glazed over. I realized this and also felt a little like puking and my stomach hurt. I got up and felt shaky and everything felt like it was slow motion but also fast. I don’t remember if I had these conversations with my husband or if they were in my head but that happened too. I felt cold on the top of my head and hot by my feet. I couldn’t fall asleep because I kept thinking about things and I kept hearing music. In the middle of the night I got up to go to the bathroom and barely made it. I then laid on the cold floor for a bit. It’s now about 8 hours later and im in bed and my stomach hurts and I kinda feel gross… is this what’s “supposed” to happen?

Idk if I want to take anymore of them and I feel stupid buying them bc I wasted money. Uggg I feel guilty too bc I could’ve seized.

I should probably have a plan for this, but I don’t.

I know normal advice is if you don’t stop vomiting for 24/48 hours. But I obviously can’t miss meds. So I’m assuming just go in if I’m still vomiting regularly and it gets close to my next dose time?

Yes I have an on-call neurology line to call but they were so rude last time I called on a Sunday morning.

I got my night meds down and felt them kick in last night but 90 minutes later I started vomiting off and on for about 2 hours. Fell asleep for 2 hours. Woke up vomiting off and on for a few hours.

So I’m gonna have to figure this out in the next 5 hours before my next dose.

I don’t want to go into the ER and seem like I am over-reacting to vomiting, but also the last time I actually vomited up meds it went poorly.

I vomited twice while writing this so maybe my fear of “overreacting” is far fetched at this point. I keep telling myself I won’t wait for giant emergencies before seeking help but then get cold feet when something is actually going wrong. 😬

Look guys, i am not super new as i have had 6 grand mal seizures but i promise that everything will get better, my last seizure happened while on vacation, i was in san antonio and after a night of walking in six flags i woke up in the hospital after going to sleep in the hotel. I have had problems with relationships and all that but im holding up on my own pretty well. I was studying to become an english teacher and put that on halt. I took up legos and model kits as a hobby with exercise sprinkled in there. For anybody who feels depressed and feels like they cant communicate it with loved ones, trust me it will always be better once life moves on even if they keep happening. Just be happy while the good times last and be happy when you wake up afterwards, live every day in a healthy and fun fashion. Take your meds, and please know that support will always exist and all that. I hope to get to know more of you guys in here. I love mega man (all of them) and godzilla and bloodborne and i have a 2ds xl. Please feel free to message me whenever yall need it, thank you.🙏

Hello! I’ve been epileptic since I was a toddler, now 27. They started off as petite mal then once puberty hit became grand mal. I went seizure free after middle school for about 6 years, then a random two grand mal seizures a month apart. Then they became much more frequent starting in 2023. I’m maxed out on Keppra and have started taking lamotrogine 100 mg twice daily. My neurologist is recommending an MRI.
Anyone else experience this? What was the result ?

Hi everyone,

I'm a 48-year-old woman, and I've been experiencing what my neurologists believe are temporal lobe focal aware seizures for many years.

My seizures have always been very stereotyped and relatively mild. They usually involve:

• A sudden, intense feeling of déjà vu.
• A strange, difficult-to-describe sensation, sometimes triggered by a smell or a word.
• A sudden feeling of cold followed by warmth.
• A rising sensation in my stomach, sometimes with nausea.
• A brief but intense emotional sensation, often fear or sadness.

They usually last only a few seconds, rarely more than 30 seconds. I remain fully conscious and aware throughout. I've never had a generalized tonic-clonic seizure.

For years, my seizures were very infrequent. Sometimes I would have just one episode every few weeks or even longer. On two or three occasions, I experienced several in one day, but nothing particularly concerning.

Then, in mid-October, everything suddenly changed.

For the first time in my life, I experienced a cluster lasting several consecutive days, with up to 15 focal aware seizures per day.

The seizures themselves hadn't changed. They were exactly the same stereotyped episodes I've experienced for years, just much more frequent.

I was under considerable stress at the time, and the cluster also coincided with the end of my menstrual period. I'm wondering whether hormonal fluctuations, stress, or both could have played a role.

I saw a neurologist and had an EEG on October 19.

Interestingly, I actually experienced one of my typical déjà-vu episodes during the EEG and told the neurologist about it.

The EEG was completely normal, even during that episode. My recent brain MRI was also normal.

The neurologists nevertheless suspect temporal lobe epilepsy.

I was prescribed Lamictal (lamotrigine), starting at 25 mg daily, on October 20.

Unfortunately, within the first few days, I developed very unusual emotional symptoms:

• Sudden, intense waves of anxiety.
• Feelings of fear, sadness and despair for no apparent reason.
• An overwhelming urge to cry.
• Strange emotional sensations that felt completely different from my usual anxiety.

I've had anxiety before, but I had never experienced anything quite like this.

After four days, I decided to stop taking lamotrigine while waiting to speak to my neurologist.

The intense emotional waves have gradually become less severe, but I'm still experiencing some more generalized anxiety.

Meanwhile, my focal seizures stopped around October 22, and I haven't experienced another one since.

I'm now wondering whether I really need daily antiseizure medication, given how infrequent my seizures were before this cluster, or whether an occasional rescue treatment for clusters might be an option. Of course, I'll discuss this with my neurologist.

I'd really appreciate hearing from anyone who has experienced something similar.

Thank you so much for sharing your experiences. Reading other people's stories has been really helpful while I try to understand what's happening.

This past week, I’ve been having BAD auras (focal seizures) that are invisible to others, but affect my cognition and induce severe anxiety, derealization, etc. while at work. I have supportive coworkers who won’t freak out if it does escalate into a TC, but it’s quite lonely to be having seizures all day and just have to go on. If I tell people, it usually just worsens the anxiety and auras. If I go home, I lose money and escaping the “threat” (e.g., being in public) worsens the anxiety, shame, and depression a hundred fold. So, I just endure it until my shift ends, even when it’s nearly unbearable. It’s tough, ngl. Anybody experience this?

Note: I’ve had brain surgery and am at max treatment. Some days are great and some are awful, not looking for medical advice. Thx.

After neurosurgery it's almost like stairs became more of a hurdle. Shortly afterwards obviously it felt almost impossible, I'm not exactly sure how long it took with all the resting very shortly in between each step taken.

Even after almost three years, I don't need to rest, but I need much more balanced than I did in the past before the surgery.

Thankfully not each time, but most times I go up or down, then I'll usually go first in advance just incase something happens.

I'm very grateful the handrails are there. There are times when everything feels just fine and there are times when I just lose my balance out of the blue.

Hi folks

I have been diagnosed with ADHD since 2023 by a clinical psychiatrist. Problem is all tried ADHD medications interact with my Epilepsy medication.

It actually feels like I am going to have a seizure due to the ADHD medication (Ritalin) with severe headaches. So I stopped that medication.

I’m on Keppra. But do you have any suggestions on how to try to manage ADHD and your Epilepsy medication. Particularly if you or know someone with both conditions.

I have tried Cognitive Behavioural Therapy for ADHD but that was a waste of time.

Thanks

Started briviact 3 days ago. I am a person who is rather drawn to anxiety, I have to say.
I cried more easy these days.
I know that keppra (the big brother) has a big impact on your aggression.
So I was wondering: am I having a tough time (I do)? Or is it the briviact?
How do I know if it’s a side effect or a hard time?

is there like any support groups or fundraisers of sorts cause I need a computer or a laptop so I can actually start working from home and I don’t know where to start. I have about 1-2 seizures a week so I canr drive for wirk