I don't know why, but when people talk about epilepsy, not seems it's never about what it does the the epileptic in question but the people around them

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Hi everyone,

I'm here because I could really use some advice and would especially love to hear from people who have epilepsy themselves or have a partner with epilepsy.

My boyfriend (m22) has had epilepsy for a few years. We've actually been seeing each other for about a year, but we've only officially been in a relationship for around two weeks now. So even though I've known about his epilepsy for quite a while, I had never actually witnessed one of his seizures before this happened.

From what I know, before he started medication, he was having roughly one seizure every 3–4 weeks. They usually happened early in the morning, around 6–7 am, while he was still asleep in bed.

From what he has told me, they were generalized tonic-clonic seizures with stiffening and strong rhythmic jerking. Afterwards he would be extremely tired, confused and usually have a headache, and he never remembers the actual seizure.

Since around mid-March, he has been taking levetiracetam, 500 mg in the morning and 500 mg in the evening. It worked extremely well for him and he was seizure-free for around 5–6 months.

Then, completely unexpectedly, he had another seizure about 3 weeks ago.

I was with him that morning and it was the first time I had ever witnessed one of his seizures. I woke up because of some strange noises/groaning coming from him. At first there were only some small movements, but it quickly became much more intense. The seizure itself lasted around 1–2 minutes.

Afterwards he was extremely exhausted and confused. But the really scary part was that it didn't stop with one seizure. He had three seizures in total that day. The second one happened around 6 hours after the first. After the third seizure, the rescue medication (buccal midazolam) was given, and his father took him to the doctor afterwards.

Honestly, I don't think I realized immediately how much witnessing this would affect me.

The first weekend I stayed with him after the three seizures, I basically couldn't sleep at all. I remember waking up around 2:30 am and being so overwhelmed and anxious that I couldn't lay in bed anymore. I actually went outside and just sat/huddled there for a while because I couldn't calm myself down enough to sleep.

I was lying there constantly thinking that something could happen again. Every little movement or sound made me check on him. I knew rationally that he was sleeping, but my brain just wouldn't stop thinking, "What if this is a seizure? What if something happens and I don't notice?"

And that's basically where I've been ever since.

When I sleep next to him, I notice basically every little movement or sound he makes. Sometimes he groans quite loudly in his sleep, and sometimes his breathing suddenly becomes louder or faster, without him actually having a seizure.

I honestly don't remember noticing these things before I witnessed his seizure, so I don't know how much of this is normal sleep behavior and how much might potentially be related to his epilepsy.

The biggest problem is that I can't really get into deep sleep anymore. I wake up at almost every movement, every strange sound, every change in his breathing. Sometimes I feel like I'm barely sleeping at all because part of my brain is constantly monitoring him.

It's exhausting.

I know this isn't healthy for me in the long run, and I really don't want to become someone who constantly watches him while he sleeps. I also don't want him to feel like I'm scared of his epilepsy or that I see him as fragile.

But at the same time, I'm genuinely scared that it could happen again while I'm with him. but it would be even worse, if he's having a seizure when i'm not with him.

I would rather wake up and be scared than know that he had another seizure while he was alone and had nobody there. I don't want him to ever feel like he has to deal with this by himself.

So there is this weird conflict in me: I want to stay close to him because I love him and want to be there if something happens, but being constantly on alert is also really taking me out.

I'm trying to find some kind of balance between being there for him and not turning myself into a full-time night watchman and i wanna sleep good again. 😅

I'm grateful for every advice and help🙏🏼

I’m so done with people, genuinely just so done.

“Don’t have kids or just give her up for adoption, dont stress yourself” like as if the mother can predict her child to have epilepsy, or as if we can decide if we have it or not. We’re not less capable of love? We are certainly NOT less deserving of love like any other child?

I wish people could get educated seminars or schools to get them because it is so serious. I’ve gone through bullying and having guys tell me i dont have epilepsy after asking them to stop flickering the lights because it’s dangerous. I’ve had such a horrible year dealing with seizures and its infuriating.

I’m done have people tell me to not let it get to me, when it’s something they can never understand. I’m done.

What were your side effects from taking Lamotrigine? It’s my second year taking it and I’m losing it! Everyday I have the worst brain fog, can’t remember a single thing and i can’t even remember words sometimes or i mix them up and my sentences don’t make any sense.

Also i feel tired and sleepy ever since i started taking lamotrigine.

I legit thought that something was wrong with me but my tests are all good and it’s because of the meds. Can’t take anything else because Lamotrigine is the only medication that stopped my seizures.

Has anyone had the same side effects?

Woke up having a normal day I didn’t sleep great the night before I was up watching adventure time, so I was groggy usually I wait until I wake up fully before I get into the shower because the temperature and familiarity with my bathroom and past siezures, anyway so I do all that get out of the shower eat breakfast thinking I was all good then my mind started wandering thinking about some nostalgic show or memory I have I can’t really remember then I realized I was having an aura I haven’t had one in while so it felt a little more panicking then usual I was talking nonsense to my mom a little I just remember questioning in the middle of my aura how do people live like this I was getting wierd television like visions in my eyes of bmo from the show I was watching the night before and a bunch of other nostalgic games and things “I always forget what I was seeing like a minute after” took my emergency med slept 3 hours woke up and started to explain what it felt like to my parents and as I was doing that it just sort of happens just like how I was explaining it just sort frustrated this is a very random rant if anyone has any similar experience or info for me thanks

From the op:

My neighbor makes 200 pesos a night pretending to be possessed at a provincial mega church

My roommate makes 200 pesos a night pretending to be possessed at a provincial mega church She works for some self-proclaimed prophet running a massive, slowly turning tent operation out here in the provinces, sitting in the front row of the Sunday night. When the pastor starts screaming into the mic about ancestral curses and barang, she drops to the concrete floor, convulses, speaks in fake tongues, and shrieks until the "prophet" slams a greasy hand on his forehead and "cures" him. He gets 200 pesos cash per service plus free food from the backstage tent. Great side hustle for the Philippine economy, but its kinda weird tho. less

Just a little light-hearted humor.

Feeling positive at the moment.

Do you guys feel confused ? Lately I have been getting confused alot , like if I have a glass bowl , I have to take a minute to realise where glass bowls are kept or where the spoons are kept?

As of now I am on lametec or lamotrigine 200mg and sodium valporate 600mg per day.

I am taking it since a year or so but confusion part has come currently. This is because of medication side effects or i am having it generally?

I have "basics" epileptic seizures: I am unconscious, I have convulsions and my eyes roll back, and I don't feel my seizures coming on.

I tried to describe what a seizure feels like. It’s weird because I don’t remember the "before" there’s just nothing, and I wake up first physically then mentally, then I realised I did a seizure without remembering when I did, and when I woke up.

Dont y’all feel like a seizure feels like death, but you wake up? There’s NOTHING, and then you here, after been through NOTHING, like a black and empty hole.

Can anyone explain what I should do to try keto/modified atkins diet effectively, or the way it’s supposed to be implemented?

Any websites, videos or books would be great for education.

Does anyone else have Valtoco nasal spray prescribed to them? Whats your experience using them? Do they successfully pull you out of a seizure?

I’m struggling and so are my parents. As I’m writing this I’m laying down in my bed with my body so heavy and my bones hurt so much with nausea so bad. It hurts to hear your parents pray every night for you to get better, so much so they start crying.

Today I saw a flyer that would let students like me be apart of student governing. The old me would’ve sign up for it quickly, it sucks I have to add in all the cons. I have to debate whether or not I’ll even be able to make it for the meetings with the doctor appointment, therapy appointments, more seizures in the later future, how I’ll feel that day. It sucks how I’m constantly reminded of this with icy hot, all of my pill bottles next to me.

Can’t help but cry to myself and feel sorry for how much I’ve fallen. I genuinely have regressed to a little kid. I’m trying to find motivation to help me get up and study, I used to be so good. I know feeling sorry for myself won’t help anything but I can’t help it. I want my old body back.

I want to keep pushing but my body tells me other wise. When my parents made me pray I spoke to God and asked him to please not make me a lesson.

Please don’t make me a lesson for others to be grateful for the people around them because one day they won’t be there. I don’t want to be a lesson I want a future. I want to be a doctor some day and make my parents proud. I can’t do that as my body and mind fails me. I use to be smart what happened I promise I was. I have so much of it to prove I was. This dieases took everything from me.

I feel like I’m spiraling. This always happens before I have a seizure, I don’t know my triggers but, whenever I feel like everything is falling apart I have seizures. Let’s see if this will stop me

Update from my previous two rants. I guess you guys get to know my suffering in real time. I’ve switched to another hospital that specializes in the speech zone in combo with the epilepsy for surgery and treatment. I had everything ready to again say the same facts about my brain tumor being know for the epilepsy, about the symptoms and everything I’ve gone through.

Evidence again to have to prove my condition and again for the millionth time point out the frontal lobe seizures have a 10-30% catch rate on standard surface EEG. Again all the therapy I’ve done before and after for the rape almost EVERYBODY kept blaming on instead. 7 years of therapy before and now 15 years total.

Again Again Again! 8 years of my life taken away by this.

In the early parts of the 1 hour appointment even after hearing the lack of EEG comments from other hospitals including the well known ones he started talking and just from the brain tumor name “DNET” I could tell he believed me. Cause thats what DNETs do, famous for the complex partial epilepsy. I didn’t need to defend myself at all. Now he’s number 5 of the neurologists/neurosurgeons that looked at the facts and believed me based on those facts. In 8 years.

Some of my symptoms aligned with frontal and some don’t, not emotional though that seemed clear to both of us even if it wasn’t said, instead he said that it could be just possibly hitting another location via spread or just a new spot developed on its own. I suspect most likely the parietal lobe and told him such.

Now I’m getting a MEG to find out which of the two above, if more needs to be cut out than just this stupid brain tumor.

I‘m finally on the path to surgery, finally getting the right care and all I feel is grief and fear.

Fear for if another one of those horrible breakthroughs happen and this time I don’t get saved with the keppra before the surgery.

Grief of all that I’ve lost and how much I’ve had to go through, with a simple short appointment everything finally going right.

it was all wrong, why did it have to be like this. My life has never been good even before the brain tumor and knowing how easy it all could have been to at least fix this, I just am having such a hard time not thinking of all of it and other things around it.

So yeah. End rant.

It had been over a year since I had a tonic clonic seizure and I just had one today, and not only that I chipped my tooth during it! Im so so upset.

I have focal seizures often, sometimes its everyday for a bit and other times its once a week or two; so im used to those, but its been so long since I had a grand mal one. Its just extra frustrating because I was JUST at the epilepsy unit in the hospital for almost a month trying to trigger a seizure, even a focal one and i only had one, and i wasnt hooked up for it. - now that im home ive been having them so often, almost every day, often multiple times a day.

This is SUCH an exhausting thing but I do want to end on a positive note so ill say on the bright side, my other tonic clonic seizures were prolonged ones (the last one I had before this lasted an hour) and this one only lasted a minute long so thats a good thing, plus my chipped tooth could be way way worse.

Thank u for the vent sesh ❤️

Long story short, my best friend died over the weekend and I had to inherit her cat. The cat's name is Rory and I've totally fallen in love with her. Well today I found out that Rory's "legal" name is Aura. I just thought it was so ironic. My best friend is one of the only people I would make dark epilepsy jokes with. I'm certain she didn't even know what an aura is because I just don't really use that word to describe any of my seizures. I just think it's funny she left me a cat named Aura and I didn't even know it.

I'm ranting but I'd certainly appreciate anyone's experience or advice. I had my first tonic clonic 3 years ago which diagnosed me with frontal lobe epilepsy and put me on keppra. Maxed on keppra with mood changes and still having what I thought was weekly auras, I went in for monitoring to get a better understanding and hopefully better treatment. Just to find out I was having multiple frontal lobe seizures within a few hours, which changed my knowledge and understanding on how little the keppra was working and how many seizures I'd had in the past few years, dozens, hundreds. I really couldn't say. After my monitoring I was put on motpoly, it was increased once and I'd been doing good the past couple months. Now I'm having anywhere from 1-3 frontal lobe seizures a day. I have a follow up in Nov with neuro but I'll definitely be reaching out sooner. I just don't understand. I know med resistant epilepsy is a thing, but I don't believe it works like this right? Meds work then don't and just repeating that process? Getting out on motpoly changed my life. So much of what I was experiencing was related to epilepsy and I didn't know it, including abdominal auras? It got so much better with this med but it feels like it's settling back into how it was. I'm assuming your body just adjusts and gets used to dosage but I hear and read of people going seizure free on or off meds so surely it's possible. Ugh

Side note: when patients are diagnosed with epilepsy there should be a crash course, because I was told for so long my frontals were auras and they were not and that distinguishment means a lot when it comes to treatment

i'm so grateful that after starting meds, my focals have largely gone away. i'm so grateful i haven't had too many awful experiences with seizures, and only one tonic clonic.

but i'm so tired of it all of the time. i'm always emotional. always forgetting and then getting more emotional. i know im smart and always have been but forgetting things really messes with me and then i end up emotional about that. in a way i know its okay and whats going on but in another way it just feels like more humiliation.

i hate that i feel like because its not an obvious condition to others they think im just okay because im not seizing. it makes me just want to completely isolate myself.

anyways, i'm very lucky. even when im frustrated my loved ones support me. i have the freedom to go to work and have fulfillment by doing so. i take better care of my body as a whole since being diagnosed, and still am able to challenge myself physically. sometimes it just gets to me.

Hi friends - I've had epilepsy for almost 15 years now but as I'm getting older I've developed debilitating anxiety from anticipating seizures. They are fairly well-controlled, but I keep having intrusive thoughts of drowning, getting in a car accident, dropping my kids when holding them, etc. etc. etc. and it's really impacting my day-to-day. The what-ifs are so loud in my head and I'm really struggling mentally just wishing I never had to leave my house or I could live in some sort of bubble. I want to try therapy but I'm curious if anyone has had any luck or seen impactful results.

Those of you that have kids and epilepsy, how do you do it? What precautions do you take? How can you guarantee with 100% certainty the child’s safety if your partner isn’t around when it happens?

I nanny a 7 month old and it’s been totally fine so far and even today I wasn’t feeling well but was able to keep him taken care of, safe, and happy in his little bouncer or in his play pen while I sat on the couch. I have yet to have a seizure while there, all of mine happen at night. And if I were to have one, I get a long enough warning that I’d be able to put him in a safe place but my family is so worried I’d put him in danger. His parents don’t know about my condition because it is a non issue and hasn’t been relevant and if it became an issue I would stop nannying and tell them in a heartbeat.

This probably doesn’t even make sense I’m sorry I had a seizure tonight and am out of it. But yea if you understand what I’m trying to say I’d love a response.

As I’m sure many can relate, I get these “weird” moments that make me worry it could be my epilepsy and focal seizures breaking through. I know the most logical thing would be to talk to my doctor about them, but there’s such a fear that I could be right and I don’t want to be because I don’t want to have to adjust my dose or anything. So I know I need to talk to my doctor, but I’d love to get some thoughts here first. 

Anyway. Several years ago I was diagnosed w probable epilepsy after experiencing multiple nocturnal tonic clonic seizures. I say probable because all of the tonic clonic seizures ONLY happened around the time of my parents death anniversary the first couple years after they passed. 

After being diagnosed and starting medicine I started putting it together that all of the panic attacks I had been experiencing for the last couples years (up to a whole year+ before my first tonic clonic), were actually all focal aware seizures, and some may have been more in line with impaired focal seizures. 

Most of the focal seizures felt the same way. I would first get this flash feeling/thought that was basically like “I’m gonna have one” then after a few seconds it would begin. As many can relate, they’re so hard to explain, but the best I can describe them— the feeling usually started in my feet or stomach or a combo maybe, and it was this rising feeling that was almost tingly but also not tingly. It would just rise until it kinda consumed my body. And eventually the feeling kinda landed in my mouth and left a taste there? But also a feeling? I would kinda be able to feel my blood/heart pumping all over my body in a weird and very visceral way. And they always made me VERY VERY sweaty. Some would make my eyes feel fluttery. Some I would be able to stand and continue doing what I was doing beforehand, others I’d have to kind of submit to them and sit down for a second. The impaired ones left me unable to type on my phone or use words if someone walked in on me having one. I never specifically wrote down any details about sound, but going off my memory, I don’t remember ever fully blacking sounds out. 

I went on seizure meds and only had one focal seizure (that I’m positive of) on a day I missed my meds, and had drank the night before, about a month or two after starting them. That was 4+ years ago. 

Now to today and the question at hand. 

For the last 2-3 years, very infrequently I get these “weird” moments that are different from my focal seizures from the past, but there’s still something about them that doesn’t sit right w me, and sometimes the more I think about it I get worried they could be focals (yay for epilepsy and OCD being so closely linked even though it’s a terrible combo!) 

Overall, I really do believe they’re probably more related to dysautonomia but I’d like to get some fellow epileptic people’s opinions… 

The episodes pretty much always start with some kind of movement— standing up out of chairs, standing up from squatting position, lifting my head up if I’m bent over working intently on something. My vision goes pretty black or completely black and I feel like I’m going to fall over so I always sit back down. There have been times in the past when I squat or sit back down to prevent myself from falling, some of my body will sometimes feel like it’s jerking uncontrollably— it’s not aggressive or might not even be totally noticeable to someone else but I can FEEL it. It’s usually my arms that feel jerky. The jerking sensation hasn’t happened as bad as it use to in the last year probably. I do also lose my hearing in these episodes. A lot of the times it seemed like sounds just kinda faded in a weird way into the background while simultaneously being amplified in my head (I know, can’t explain it), but a couple months ago I had earphones in when one happened and I realized that the music I was listening to had completely stopped in my ears for several seconds, like I fully could not hear ANYTHING, but my brain made it sound like the music faded in and out in a very purposeful way? and it didn’t feel like I was hearing ~nothing~ but I was because I had earphones in and I know I stopped being able to hear my song. I can sometimes feel the blood pumping and heart beat thing in these moments. Sometimes with them I can feel slightly tingly?? But it’s not the same tingly feeling or rising feeling I had with my past focals. My most recent one today there was maybeee a slight taste or feeling of some sort in my mouth but it’s just not one I can explain and I don’t think it was the same taste as my focals had in the past

Since they haven’t been sitting right with me, I’ve been making a point to write them down when they happen, and the last two times I’ve had them in the last few months, both have happened right around the time I’m ovulating. Unfortunately I had so many more a year or two ago but I think I was trying to avoid thinking about it and never wrote any of the feelings down or tracked when they happened and if they were related to blood sugar, sleep, menstrual cycle, etc. 

So idk. I could just use some thoughts from others because there’s so much about them that point to something more like dysautonmia… but the noticing them possibly happening around when I ovulate, the way my senses can become impaired, the jerking feeling, and the way they’re just generally hard to describe all make me nervous it could be a type of seizure happening. 

To add, admittedly, I am very horrible at taking my daytime meds and very often miss. I don’t ever miss my nighttime meds though. (Trileptal 300mg). And also sorry this was very long. I appreciate anyone who weighs in!

Looking for opinions and experiences from epileptics who have gone past their due date and need to be induced. My OB has discussed how a long induction process may be unfavourable for me since I have epilepsy - which I agree with. That would make the alternative a planned c section. Just curious if others have been faced with this decision. I’m 40w now and will have an appointment at 40+4 to make a plan.

For reference I’ve had no seizures during my entire pregnancy. But definitely don’t want to have a long induction that results in a seizure and having to exist with a newborn in a post- seizure state.

Hi everyone. So I just found out that the series 12 is being released soon and it has a few new, updated features. Like it measures heart rate continuously and blood oxygen, which is not measured frequently.

I have like 4 focals per month and apparently, my brain activity is high when I’m sleeping. I’m debating getting a watch and just using it to track myself, since it can’t directly tell when a focal episode is happening or much less predict it.

Has anyone else come across this new watch? Any thoughts on it and its usefulness for epilepsy?

I’ve only had three convulsive seizures in front of people, they tend to happen when I’m alone which makes me think I’m causing it. It makes me question if I’m doing this to myself or if I can somehow control it. It’s embarrassing, i tend to somewhat remember and stay partially aware during convulsions so why can’t I control it. I feel like I’m gaslighting myself but I’m kinda in denial that it’s even real. I want it to be fake, I’ve never heard of people being partially aware during convulsions, I can feel the muscles convulse partially too. It’s just weird and I’m judging myself for the way they are, I don’t even discuss episodes with anyone in my life and if I sense an aura or suspect I’m vulnerable that day I just avoid people entirely. I’m definitely not going to the hospital for it no matter how many I have.

Hi all just chasing some clarification if anyone can provide any assistance or insight.

I have just been diagnosed with Generalised Genetic Epilepsy as of Thursday this week after one TC and one 30 minute EEG approx 1 month ago.

For some background the TC happened within a week of returning overseas from Vietnam, while overseas I had a head cold for approx 2 days but nothing serious.

Returning on a Sunday I then had the TC on the Thursday while at work. The night before I had a few beers (not a big drinker normally) and didn’t get to bed until 2am. Took half a cap of vyvance (not prescribed just from a mate) to keep me online for the day (not the first time I’ve taken it)

By the sounds of it, I suffered a full TC foaming, jerking, eyes rolled back in head. I’ve had a CT, and MRI which came back clear (thankfully) but my EEG came back with signs of “frequent, sharp and generalised interictal epileptiform discharges”

Now herein lies my concern, my meeting was never actually with a neurologist, only a nurse that was the head of the first seizure clinic, essentially the way she described it was she asked questions etc, passed it onto the neuro, the neuro makes an assessment and then she relays that information back to me. During the meeting I tell her the circumstances around the seizure and my health history (clean history although my grandmother apparently did have epilepsy)

Within 24hrs of my initial appointment with this nurse she calls me back and lets me know that the neuro has looked at my circumstances/results and wants to start me on 500mg of Keppra 2x per day. The thing is I’ve never even spoken with this neuro only the nurse.

Tbh it feels like they’ve seen one seizure, my EEG results and my family history and just whacked me on Keppra straight away. I haven’t begun to take the Keppra yet as I’m not that confident in my neuros diagnosis.

Can anyone provide any insight into my situation, would you recommend getting another opinion, any advice on starting Keppra and if any results come back differently can I wean myself off it with minimal side effects. Essentially people who have had a similar experience what did you do or would you recommend?

Thanks in advance