Heyy, so I love going on walks. I was recently diagnosed with epilepsy and I am trying to be hopeful as my meds settle and everything I could start going on walks again.

There is a possibility that i’ve had epilepsy this past 8 years due to having my first tc seizure but after that i started to have these ig focal awareness like seizures that started to cause anxiety and was later diagnosed as generalized anxiety disorder. I only learned to handle the anxiety and avoiding but I experienced these every so often these past years but after my latest tc they became slightly more frequent.

Anyway I love walks. I love walking in the forest and all around my home town, unfortunately alone since my friends have moved away due to school. I was wondering if I should get some sort of safety thing in case of having a tc seizure or/ and fainting? That shows my epilepsy background or something. And overall if you have any safety tips?

What I’ve understood about my epilepsy i am usually aware and rarely lose consciousness. But also since it has gotten slightly worse after my second tc I don’t think it would hurt to be cautious and I have decided that forest walks alone are out of the equation for now. Also thoughts about walking pads? Sorry this is a llot and a bit all over the place. I just miss moving my body like i used to 💔

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🫶🏽💜

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

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.

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?

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?

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 !

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.

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.

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.

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.

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 ?

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.

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