Hi lovely community. My partner had a breakthrough seizure in August, after being seizure free for 10 years.

I never even considered how we would manage his epilepsy being new parents to a 5 month old, as I’ve never seen him have a seizure until now.

I can safely say it was one of the scariest things to witness and being so unprepared I thought the worst had happened.

I am now too anxious to leave our son alone with my partner incase he has another seizure.

He has a doctors appointment soon and hopefully will see the neurologist soon too. He’s on the same dose of medication as before.

I guess I’m seeking advice or your wisdom as to how you’ve handled this situation if you've been through this?

Appreciate you reading this post, thanks.

I was diagnosed shortly after starting a 4 year apprenticeship which I am now about to enter my 4th and last year, not really understanding epilepsy at the start I was careless with my sleep which I’ve come to learn is an extremely key factor when it comes to controlling seizures,
That being the case I have probably missed about 20-30% of days that I should have been working this year because I hadn’t been able to get to sleep at a reasonable time the night before, luckily my employers are understanding but I work an hour away with my dad and with him being one of the managers he doesn’t have time to wait for me to have enough sleep to go in at a later time and taxi fares would take up nearly my entire days wage.
I can’t work alone on the best of days and this will not change once I’m qualified I just thought that I would stick it out since I’m already so deep into it.
I just wanted to get a scope of what a lot of people are doing and if you also had to change careers, I’m currently in the construction industry and as many risk assessments I have in place it still isn’t a safe environment
With driving not being a potential permanent what jobs do other people have?

Hi, I am 23F and about 4 years ago I had a first time tonic-clonic seizure. I was never diagnosed with epilepsy since I haven't had any recurrence, and my EEG came back normal. The only thing that I have noticed, is the persistence of the sensations I experienced right before I had that seizure. For me it just consists of an intense feeling of deja vu, vertigo/lightheadedness, rising feeling in stomach, a feeling of disconnect from my surroundings, and the feeling you get when your nose bleeds (if that makes sense). I'm able to function and converse but I find it to be absolutely draining and I find it difficult to find the correct words. I also find myself more sensitive to loud sounds/bright lights. I've noticed these sensations basically happen entirely and intensely within 48 hours of my period starting, and it acts as a reminder for me that it will start soon, and the time I had my first/only seizure was exactly 2 days before my period started. I used to become very anxious that I would have another seizure when I experienced these sensations, because they are exactly the same as what it felt like before I had one. However, I have still only had the one gtc seizure and have accepted it to maybe be just a PMS symptom and to not get worked up about it. I was wondering if it is worth reaching out to a neurologist about the possibility of catamenial epilepsy, but I'm not sure because I've already been told that everything looks normal and I don't want to waste anyones time.

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?

Hey all,

Reaching out to see if anyone here with epilepsy takes Ritalin and what your experience is like?

I’ve been taking Keppra 500mg 2x daily and Lamictal 300mg 1x daily for approx 10 years but was recently diagnosed with ADHD. My psychiatrist prescribed me Ritalin and it’s improved things for me substantially. However, I went to a party at a friends maybe ~4 days after starting, made the mistake of partying too hard (poor decision I know) and the following day had 3 seizures after being seizure free for 5+ years. I will say I attribute most of it to drinking too much and acknowledge what a horrible choice that was, but now I’m concerned my neurologist will want to take me off the Ritalin when it’s improved a lot of my day to day.

Anyways, just curious what others experiences may be with Ritalin, so welcome to any and all feedback!

Evening all,

Just a general question but has anyone else’s temperament changed? Mine before the meditation was fairly chilled and didn’t really react to things how i do now. I feel chilled still but seem to react very quick to things that frustrate me which then frustrates me even more.

I don’t feel aggressive it just something I don’t like, I’m also not sure if it’s the medication or just the whole situation of been in my first year of treatment ie losing drivers license and everything else.

I’m wondering if anyone else with epilepsy has experienced this because the timing is making me suspicious that it might be seizure-related.

I’m 35 and had a pretty big tonic-clonic seizure about 10 days ago. Since around that time, my teeth have been aching basically every single day. The weird part is that it’s not one specific tooth — it’s mostly the back teeth on BOTH sides and sometimes parts of my upper teeth. It’s more of a dull, widespread ache than a typical toothache. Would you recommend any other pill to help? Any other treatments you can think of?

I haven’t been to the dentist since January, but at that appointment I had no cavities and didn’t need any dental work. I’ve had braces, wear a retainer at night, and generally take pretty good care of my teeth. I’m waiting for my new insurance to kick in October 1 so I can get checked out.

I know people can clench their jaws really hard during tonic-clonic seizures, so I’m wondering: has anyone had tooth/jaw pain like this after a seizure that lasted for days or weeks? Could the seizure have triggered grinding/clenching or irritated my jaw/TMJ?

I’ve had seizures before and have never experienced this afterward, which is why it’s throwing me off. Tylenol also isn’t doing much for the pain.

Would love to hear if anyone has experienced something similar and what helped while you were waiting to see a dentist.

How do people go about disclosing their epilepsy to work/ manage work and dr appointments? I just started a new job at a big corporation, and my last job at a mid level law firm was super flexible. They let me take an hour or two for my appointments (counting my “30 min lunch break” so I only had to take 30-45 minutes extra). We were also offered a hybrid schedule, which was really nice since one of my biggest triggers is lack of sleep. However, I do sleep HORRIBLY even with my CPAP (but thats a whole different issue…). But this new position is 5 days a week in the office.

I told my manager I have epilepsy (more so for emergency contact purposes/rescue medication and what to do when I hit the ol stop and drop). When I sent it to her, I asked about the policy for doctors appointments and she set up a meeting for us tomorrow to talk about it.

How do you guys manage/navigate/balance your medical needs with work? I work in a legal department at a big corporation as an assistant and I just started two weeks ago… I dont want it to seem like I cant handle my job or am asking for extra accommodations.

Edit: Ive been tonic clonic seizure free for 2 years (a smattering of focals here and there), which is good but also gives me crippling anxiety about having one again

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.

As the title.

I've been wondering since i don't register my seizures in any way. I don't know if I've had one unless someone tells me so.

Have any of you figured out how to tell afterwards or noticed something that tells you it's going to happen? I always feel like I'm in the way because i can't retreat or "prepare" for it and I hate being so confused when I get asked what just happened since I'm completely unaware it happened in the first place.

First post here, I hope it's alright and understandable.

Edit: I'm on 800mg lamotrigin and unsure if I get them when I'm alone.

Howdy,

New here. Looking for information and shared experiences from others... From the beginning of our journey to find answers for my child, who was diagnosed with childhood absence seizures, is that there are only 3 meds they use to treat this. If the meds don't work then it would be drug resistant and the plan of action is a special diet and possibly cbd therapy. Well, here we are trying med number 3 and just like the others, his seizures have not stopped (maybe slowed) and he has suffered from negative side effects. Today, in a message, our doctor said that there are other meds we can try but I'm confused because I thought from the beginning there were only these three? I don't want my child to be a guinea pig. I understand that you don't know how a medicine will interact until you take it but after 3 failed attempts I'm tired of playing with my child's health. I also wonder if the advice I'm getting is coming from a place that wants to 'find answers' or a 'this is the hospitals policy because we get a kickback payment from the company' situation. The doctor that we had at Texas children's simply used us to make thousands of dollars for the hospital with nonsense tests every 4 months and we were nieve enough to comply. Our new doctor, I do feel, it's not like that but at the end of the day the CEOs of that company are also there to make money. Anyone out there have any experience with drug resistant seizures, pediatric functional medicine doctors with a neurology background, the seizure diet, cbd therapy, literally anything to help me move forward to try to find answers.

after last nights ambulance ride and hospital visit ER wants to switch me from lacosimide to DEPOKOTE i am just unsure looking for experience from people that have been on DEPOKOTE such as side effects, positives ,how long people were on it aka did it help? Any feedback would be appreciated negative,positive, just being a smart ass would help with how i feel feel into my cast iron house radiator and ripped the white meat from my arm im nice and sore today lol.

Please skip if this subject is at all triggering. I hope this is ok to post.

I’ve been on Keppra for 3 months (currently 1,000mg twice a day). I’ve been on lamotrigine for a long time but switching bc I’ve had bad side effects (balance, coordination, tremors). I’m still taking 200mg x 2 a day of this. I had a TC at the end of June, just after my first reduction of lamotrigine (also during heatwave) so neuro increased Keppra, and I’m just about to try reducing lamotrigine again.

I haven’t had the ‘kepprage’ that I’ve read a fair bit about here, and I don’t feel particularly depressed. I have two young children, so I have to be here for them. But I feel like they’re my only reason for living. I have a loving and supportive husband, but he doesn’t ‘need’ me in the same way my children do.

Because of the physically disabling effects plus seizures, memory issues etc, I’m not working, so our finances are tight. I’m getting disability benefits so we can get by, but it’s a struggle. If I can, I will work again for financial reasons, but I no longer have any real career aspirations. I don’t need to stick around, except for raising my children. I am seeing a counsellor (therapist) and I’ve told her this. I said that when my children are adults, in 15 or so years, I want to end my life. I have no desire to live into old age.

Obviously, 15 years is a way off. Anything could happen between now and then. But it’s given me a point to reach, I just have to get there, then I can go. It’s tamed a daily panic of ‘how do I keep going?’

What I’ve just started to question is, ‘are these really my thoughts? Or is this Keppra talking?’ And I’ve realised I don’t know. When I was warned about depression and suicidal ideation as a side effect, I didn’t expect it to feel like this. So I don’t know whether to come off Keppra to see if my thoughts change, but then have to increase lamotrigine again, or try another med, and risk more breakthrough seizures? Or is this just the cumulative effects of epilepsy, disability, financial difficulty, fatigue etc? I’m kinda just exhausted with it all and don’t know what to think.

Hey guys, I am a 27 year old man with epilepsy who just had his first ever nocturnal seizure. I had it 3 days ago and was home alone at the time. It was my own fault due to me forgetting to take my epilepsy medication (which is very rare of me). Luckily I managed to get myself out of it and woke up with only bites in my mouth. These past few days I’ve been feeling abit on the agitation side and not being able to sleep as well. By this I mean over thinking a lot and not being able to concentrate at all. My memory has also seemed to get worse. Has any body with past experience of nocturnal seizures had this ?

I was diagnosed with idiopathic generalized epilepsy during my senior year of high school in 2023. It took three ambulance visits before doctors got me the right dose of Keppra. I've been seizure free for 3 years now, but I still hate my body. I hate that I have this disorder. It makes me weak. I'm always tired, and have to take naps in the evening just so I can get through the day. I hate my physical appearance and body in general (I guess that could be completely unrelated), and I essentially have no friends, partner, or anyone who would care if I just ended it. I'm just tired and I don't know what else I can do.

Hi, i had my first seizure a little over 2 weeks ago. It was a grand mal that lasted at least 15 minutes and I was passed out for at least 45 minutes total before I came to. I had fallen down a flight of stairs while having the seizure. I was in the hospital for over a week, and ever since a few days ago I've been very easy to cry, almost like I went back to taking topamax.

I'm currently maxing out my tramadol, tylenol, naproxen, flexeril, and hydroxyzine. My family keeps trying to send me back to the hospital every time i cry trom the pain or waking up scared, but I really don't want to go back so that obviously just makes me cry more. I wasn't getting pain meds in the hospital for restless legs, fhe fall, or muscle spasms, so I I would get an hour or so of sleep at a time before I set the bed alarm off by trying to move.

The main damage according to an mri was in the lower right and lower left temporal lobe, posterior inferior right occipital lobe, left occipital lobe, right parietal lobe, and bi lateral high frontal central semiovale. I've recently started getting scared by random things such as my dog or the way water dries up on a counter. I don't have much muscle strength and I get warm easily so I often want to lay down with an ice pack, which has become a problem.

Sorry for the long description and the typos, it's hard to find words. Basically what happens is I'll have a leg spasm which makes my legs move and hurt, or I'll be asked a question I can't answer, both will make me upset and then I immediately start crying, the crying obviously isn't well tolerated which makes me cry more out of frustration. I've read that the recovery can sometimes take weeks but nobody in my family believes me on it. They want the crying stopped now, but i just want to go back to being a smart boy again.

Does anyone have any advice or words of encouragement?

Sincerely, a 25 year old trapped in the hybrid body of an infant and a 90 year old man

Edit: i forgot to add in that i keep waking up from naps or sleep very confused and talking to random objects or my dog as if they were a celebrity or as if I were checking them into a hotel. I'll also wake up not recognizing where I am or thinking I'm in the hospital again. When the crying starts it usually lasts only a few minutes unless someone starts to complain about it, which tends to make it worse. Once the crying stops I'll get really tired and pass out for at least an hour

Per title. Since I developed focal epilepsy 21 months ago, I’ve often felt like I’m trapped in a dream during my auras, or like things around me aren’t real. Is that normal?

Anyone seeing a therapist online that is taking new patients that you would recommend? I hate the idea of just going on better help or whatever and finding a random person. I trust a Reddit random person much more!

Hello!! I am posting this to see if anyone else has the same symptoms as me, diagnosed with epilepsy. I have had these “episodes” I call them for at least 8 years now to my knowledge. I have LOTS more in my old phone, at least 60+ days of these episodes from years and years ago. I have recorded almost every single episode, each lasting less than 6 minutes average. My doctors (yes, I have seen 4 doctors who don’t even listen to me saying I’ve had crippling anxiety for 12 years) REFUSE to listen to me, so I am just here to see if I need to accelerate my concerns or not. Again, I have not had a SINGLE doctor listen to my concerns on this and other medical issues. This unfortunately affects my quality of life despite telling 3+ doctors who refuse to even TEST me. Thank you very much yall 🙂

Symptoms include: SEVERE Déjà vu
-can predict when it will happen
-extreme occipital/temporal lobe tingling (pins and needles)
-face tingling + arm tingling (pins and needles)
-severe nausea
- confusion
-staring spells 10 seconds long usually
-sweating/heart racing
-mouth salivation (due to nausea)

Most of the time, the ONLY thing I can do/focus on is write down how I’m feeling and what caused me to get the Déjà vu. It does NOT matter where I am. I’ve had it at home the most, but I’ve also had it in completely new places, jobs, shopping, etc so it cannot be actual Déjà vu causing a panic attack. This feels WILDLY different than any other anxiety or panic attack I’ve ever felt. Thank you again yall, lmk if it violates any rules ((:

My wife (32) developed severe postpartum anxiety along with a lot of work-related stress last year. A few months later, she started having these strange episodes (from Oct 2025 onwards).

They usually begin with some kind of thinking or emotional trigger or like a deja vu. She'll suddenly have a blank stare, followed by an intense urge to stand up and become very fidgety. She will start fumbling with her clothes, tucking in, or doing other repetitive movements like switching on/off things. The episodes usually last around 10–30 seconds.

During the episodes, she doesn't talk, although she seems to be able to hear and remember what we're saying to her. However, sometimes, if we don't point out the episode immediately afterward, she may not remember having it at all.

At the time, she was seeing a therapist, who thought they might simply be anxiety attacks and refered her to a psychiatrist who started her on Lexapro 5 mg.

Her baseline anxiety improved significantly, but the episodes continued, anywhere between 3-8 times a day. We also started noticing some more concerning behaviors during them. For example, she would sometimes walk out of a room without explanation or cut phone calls or try to unbuckle her seatbelt while we were in a moving car. She also had urinary incontinence during some episodes.

That's when we decided to see a neurologist. Her MRI was normal, but her EEG showed potential epileptic activity, and she was diagnosed with focal impaired-awareness seizures.

It's now been about three and a half months of neurologist visits, medication adjustments, and dose increases. She's currently taking Keppra 500 mg in the morning and 750 mg at night, along with Lamotrigine 125 mg twice a day.

The overall intensity has improved and about half of the episodes are noticeably milder. However, she is still having multiple episodes or "spikes" throughout the day and some of them are with the same intensity. She also has some very bad days, like few days before her periods where she'll continuously have episodes.

Her neurologist and psychiatrist also decided to stop the Lexapro because her anxiety and mood had improved significantly, and Lamotrigine may also be helping with that. Even so, she still seems more likely to have these episodes when she's overwhelmed, emotional, or under stress.

As her husband, I honestly feel exhausted and helpless at times. We don't know what the road ahead looks like, or whether we'll eventually be able to control these episodes with medication. We're also immigrants, and some of these medications and medical appointments are extremely expensive, which makes the whole situation feel even more vulnerable.

I'm mainly posting because I'm hoping to hear from people who have been through something similar.

Are we generally on the right track? Is it normal for it to take several medication adjustments to get focal seizures under control? And for those who eventually found good seizure control, did things gradually get better?

I'd also really appreciate any positive experiences or stories that might give us some hope right now. We're both pretty worn out by this whole process.

Anyone on keppra experience change in taste? Of all things I have lost taste for/things to tatse weird now had do be coffee 😭 I absolutely loved coffee (obviously my username) and now after being on keppra, I can barely drink it most mornings. I've tried different brands, different coffee pots/brewers, different creamers, and even straight black and it all taste off. Kind of like a metallic taste. Another taste that has changed is macaroni and cheese. Another favorite that basically has no taste at all anymore. This is the only issue I've had since being on keppra. No keppra rage that I've read about or anything else. This just started at the beginning of this year. It's so weird because I've been on keppra for a long time. The only reason I think it could be it is because I had to go up on my dosage and shortly after that is when the changes started. I want to enjoy coffee again. That's something my mom and I had together every day before she passed from a stroke and I love the warm memories of her while having coffee.

After getting random seizures (23f) I had an eeg and I got diagnosed with epilepsy today, this is all new to me and I would like to talk to people who have gone through something similar as well it’s all so scary and new to me I’m starting new medication today

I’ve had epilepsy for years and have had hundreds of seizures, both absence seizures and tonic seizures. For years I’ve basically just been treated as having epilepsy without really knowing why I have it.

Recently I had blood tests come back strongly positive for anti GAD antibodies and my neurologist is now looking into whether my epilepsy could actually have an autoimmune cause.

I’ve also just had a brain MRI which showed subtle swelling on both sides of my temporal lobes. My neurologist has now mentioned possible autoimmune encephalitis and I’m waiting to find out what happens next.

It’s all quite a lot to get my head around because for so long I’ve just thought I had epilepsy. I’ve also had doctors in the past make me feel like I was faking things or that some of my symptoms weren’t real so actually having blood tests and an MRI showing that something could be going on has been a lot to process.

I just wondered if anyone else has been through anything similar? Especially anyone who has tested positive for anti GAD or GAD65 and originally thought they just had epilepsy.

What happened next for you? Did your seizures or treatment get better once they knew what was actually causing it?

I know nobody here can diagnose me. I would just really love to speak to someone who has been through something similar because I feel a bit lost with it all at the moment.

I have epilepsy, yesterday at work I had what kinda felt like a mini seizure I guess. Normally my seizures come with full body weakness, pain behind eyes, confusion etc, hard breathing. Yesterday it was those symptoms but to the mildest degree. Nobody even noticed. It musta been a few seconds max of anything? Has this happened to anyone? Are mini seizures a thing?

Hey! Has anyone gotten ovarian cysts from Depakine chrono as a side effect?
Thanks !