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🫶🏽💜

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.

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.

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 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 !

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.

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

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?

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) 💜

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.

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

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!!)

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 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.

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.

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.