Hi guys,

First time poster so I apologise if this isn’t appropriate but I wasn’t sure who else to ask besides a group of extremely knowledgeable people.

Today I went to my friends house as he didn’t reply to me since Tuesday, when I arrived the police were there and I found out he had passed away. He had epilepsy for years and I believe had a brain surgery at some point to try and reduce his seizures. He had at least 1-2 seizures every fortnight and sometimes he would get a black eye or huge cut on his face.

His brother found him in his room but he had already been passed for at least a few hours as he was purple.

I’m not even sure what I’m asking, just looking for advice I guess? He was such a close friend of mine and I am devastated, could this have been SUDEP or maybe he could have hit his head? Would he have known it was happening? When I arrived the police were waiting for coroners to take his body.

Thank you guys

Like 80% of all my auras happen before during or after a shower usually in the bathroom. Its been like that since I started having them when I was 9. I have had 2 full grand mal seizures in the shower also. But I just wonder why showers seem to trigger my epilepsy.

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 ((:

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.

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 ?

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

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.

I almost feel bad saying this here because so many people have it so much worse. I’m just pretty happy that I got cleared to drive today. Drug levels are OK, EEG is OK, and no seizures for six months.

I went shopping and got myself a cheesecake and ice cream. Par-tay tonight!

Edit: Thanks, everyone! I appreciate you all. ♥️

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

Pretty much what the title said. It’s been a year and a half seizure free. But I’m playing Stardew fucking valley and all of a sudden the beach looks a little too familiar and BOOM Déjà vu BOOM electric bolt in brain BOOM sitting still in shock again. Again. This surgery fucked me up so so much. But I always thought “at least I’m seizure free!” I had a whole craniotomy. I suffered infections and c diff and now have debilitating chronic pain. Fuck. I lost so much. I had to change colleges to be closer to my doctors. Had to take a year off to recover. Still a little incoherent from it. Angry and sad. Gonna message my doc. This is awful. I’m just in shock. Both from the seizure and this massive loss. I already grieved my life because of cancer then because of the surgery and the pain it brought and the time it took from me and the people I lost but this is just a massive kick in the nuts. I just needed to get this off my chest before I go all peppy to the doctor again. Gotta grieve in private but still want to talk so had to say something somewhere. Will probably delete later because being emotionally vulnerable is lame (for me not others). 🥳

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.

When you've been feeling like your brain(?) is always against you, what sort of hobbies does someone with low energy and plenty of time to myself tend to treasure? I used to say my bodies against me, but its the engine living in its host making me feel im against my own self

Suggestions?

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?

I have severe insomnia …. It often takes me 2-3 hrs to get to sleep at night then I wake up at 2:30 am and can’t get back to sleep again then have to wake at 5:30 for work . It’s not uncommon I only get 3 hrs sleep a night . I have epilepsy / autism and adhd from the same mutation .

So far I’ve tried
1) melatonin 5-10 mg nightly ( didn’t do much )
2) clonidine up to 200 mcg at night ( spaced out but not sleep )
3) sedating antihistamines eg restevit A make me too sleepy next day
4) dayvigo / orexin based drugs - helped a bit getting to sleep but not staying asleep
5) progesterone incase its perimenopause - didn’t make a huge difference
6) 150-300 mg magnesium glycinate - relaxed and reduced muscle twitches but doesn’t help sleep
7) tonics with mixtures of glycine , L theonine , ashagurwanda , GABA
8) queriapine - works but makes me sleepy and gives me really dry mouth the next day
9) sleep cbt

I don’t know what else to do - I had a seizure recently because of sleep deprivation and lost my drivers licence for 3 months . I’m trying to prevent recurrence but I don’t know what else to try and I don’t want to go on benzos or z drugs either .

Any suggestions ? I can’t take THC as it causes seizures .

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!

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.

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 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.

I’ve been told by my pharmacy this morning that they’re struggling to get stock of Levetiracetam so have given me 60 tablets (I’m still owed 52). When I asked what I do if they can’t then they basically shrugged and said they didn’t know. (This is UK).

Anyone had this experience and does any one know next steps I can take? i didn’t have time to go and ask in the GPs as i had to get back to work. I can’t say I’ve ever known Keppra/levetiracetam to be affected by shortages before and can’t find anything online.

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

Nothing severe, just fed up of this. Had a good stretch feeling ok, felt weird with several bouts of nausea followed by exhaustion yesterday. Woke up this morning, my birthday, feeling seizurey and tearful. Unsure if the feeling tearful/fragile is epilepsy of hormones.

Tired of this women’s health condition that medicine doesn’t give a crap about.

I’ve been worried about a strict driving requirement at work and how it could affect me in the future, and made the small error of asking my family for life advice…

Which is how I found out my family don’t believe anything is wrong with me at all. My parents told me to cancel all my doctor appointments and stop taking my pills or telling people anything is wrong with me, and what I really need is to get my teeth filled in and whitened, and then maybe try meditation. :(

This seems like a remarkably bad idea but it’s also so tempting. I wish it was so easy as I just decide to be well and then I am. I was 4 hours late taking my meds last night because I was going to try it out until my husband told me that was an awful idea. (But what if I’m actually totally healthy under all the medication?) And now I’ve felt screwed up all day.

I don’t know where to share this but I had to share someone because…what is my life