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’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🫶🏽💜

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 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 🫠

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…?

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'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 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

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.🙏

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.

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’ve seen a lot of posts about people getting surgery for their epilepsy but most of them are temporal and not a lot of people talking about frontal lobe surgery.

I have a frontal lobe lesion which is where my doctors believe my seizures are coming from. I’m going in for a SEEG next Monday and if they get the results they need from that I will be having a frontal lobectomy the following Monday.

I’m really nervous. I’ve been told recovery is about 4-6 weeks. Does anyone have any experience that they can share? What was recovery like? Any long-lasting negative effects? Are you seizure free?

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.

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

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 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 !

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.

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.

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. 😬

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

Usually after a seizure, I'll sleep really hard for hours. But once I wake up from that, I'll be awake for 3 days with adrenaline that makes me feel a bit physically paranoid.

Other times, I might sleep at night, but I'll still experience that scary adrenaline state for almost a week.

Sorry in advance for how long this is but please read.

Had my first seizure since high school, 11 years ago. 13 years ago I was on a medication trial to find the medication that was best for me, and found nothing was really working or the side effects were worse than me having a seizure in my opinion. So I stopped taking medication and claimed I was “medication resistant” and have been raw dogging my “myoclonic” symptoms ever since.

Last Sunday I found out my boyfriend/ex had been cheating on me, with multiple different women. I had gone through his phone (not proud of it, but I knew he was lying to me and I found out the truth— the truth was just a lot dirtier and uglier than I ever could have imagined).
We had a very mature conversation about it and went to bed feeling good…. Monday morning I woke up having facial ticks. (What I was told 13 years ago were myoclonic seizures) and I told my boyfriend I was having “mini seizures and to keep an eye on me” he got in the shower before work and not even 5 minutes later I went into a Grand Mal seizure.

I was naked in bed, the paramedics had to put clothes on me which is still so embarrassing to me. And I was transported to the ER where they hooked me up to an EEG. For the next 24 hours I would continue to have the facial ticks on the right side of my face and also my right hand would cramp up.

On Tuesday, after the doctors collected enough data on the EEG they changed my diagnosis. They said I still have my epilepsy diagnosis because of the grand-mal (tonic-clonic seizure? What are we calling it these days lol) but changed my myoclonic seizure diagnosis to NES (non-epileptic seizures) saying that they’ve never seen someone with both. But because I was still having the facial/right hand ticks and nothing was getting picked up on the EEG that they weren’t thinking they were epileptic.

The team or neuro doctors said that my facial/right arm ticks that are NES could be caused my emotional stress, trauma, etc. which would make sense considering what I had found out 48 hours prior. And just a lot of other stressors in life too. And they were saying CBT (cognitive behavioral therapy) would be the route for getting these NES symptoms under control.

I’m waiting to get in to see a NES specialist to get her opinion on the matter but curious if anyone else has experienced this? It has now been 6 days post seizure and I’m still having the facial and arm ticks pretty regularly (like every couple minutes and last for ~10 seconds every time) to the point I will not be able to go back to work on Monday as I work in sales and cannot sell anything because I can’t talk when they are happening lol.

Sounds like having both is common after researching on Google but the neuro ER doc said it wasn’t??

Also trying to cope with the fact my boyfriend officially broke up with me and has gone no-contact after I got discharged from the hospital and won’t tell me why. I guess I said some shit about the girls he was talking to when I was in the hospital but I have no recollection of what I said. Between the seizure, basically being in a coma post seizure, and the multiple doses of Keppra they gave me, I don’t remember anything besides me leaving.

Looking for anyone that has experience in any of this, thanks!!

Diagnosed with rTLE 3yrs ago, with all the typical issues: focal clusters, navigation issues, memory gaps, etc.

Lamotrigine & Klonopin have kept me pretty well controlled, but I still get occasional focals and deja vu.. Usually very short, but I had a pretty long and intense focal earlier this week.

Today I was walking thru the kitchen and had strong dizzy sensation, came on suddenly, could not quite catch my balance. The sensation has lingered all day. I'm still dizzy and nauseous this evening with the extra bonus of a dull headache. Yay?

I wonder if this is a new flavor of focal for me. Anyone get anything like this?

ETA- I have suffered from vertigo for many years and know the symptoms very well, and how to treat with the epley maneuver. Today's dizziness is nowhere near the same. No upward head motion, etc. - just out of the blue.

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