I've been wondering whether most active members of this subreddit have severe or drug-resistant epilepsy.

I see a lot of posts from people who experience frequent seizures, but I also realize that people with more severe or difficult-to-control epilepsy are probably more likely to seek support and share their experiences here.

On the other hand, I recently had two seizures after being seizure-free for over 10 years, and I'm worried that my medication might no longer be as effective as it used to be. I'm not sure whether I've developed some kind of resistance to it or whether external factors, like stress or lack of sleep, might have triggered the seizures.

I'm curious how many people here have well-controlled epilepsy and how many are still struggling with seizures despite taking medication.

Has anyone experienced a recurrence of seizures after such a long seizure-free period?

I hate seizures. I hate that I have to be aware of everything I eat. I hate that I anywhere I go or anything I do comes with a thought of dropping from a seizure. I hate that it has reduced my ability to be a good wife and mother. I hate that every time I go to bed I think I might not wake up. I hate that my kids know when I’m sad about all of this. I hate being treated like a child that needs to be monitored. I hate that I lived nearly 40 years without this and now it’s all consuming. I hate the neuros and epileptologists that I’ve seen that tell me “take drugs or you die, tough shit about side effects” I hate that the meds I’ve tried made me crazy and I’m scared to try more. I hate that insurance won’t cover someone to guide me with keto. I hate feeling like a worthless burden to the people that love me. I hate that I can’t figure this out still. I hate feeling like a loser. I’m sorry to put this on you all but I had to get it out, figured some people here can relate.

I am the wife of an epileptic man. I try my hardest to be there for my husband and support him in every way I can. My question for other epileptic spouses is how do you handle the bad temperaments that come along with epilepsy? I can't even ask a simple question sometimes without him jumping on me with accusations of being annoying, aggravating, or trying to run his life. Even just simply asking if he needs anything from the kitchen before I sit down can send him into a fit of rage. Yet he can ask me the same thing and that's ok! I am a very patient person but its getting harder to take the stress is killing me. I try not to stress him out because I know that can lead to seizures but I can't keep from trying to be normal and freely speak to my husband. Once he gets into a rage I tend to just completely shut down. It doesn't matter where we are he will yell or be hateful to me. My family and friends say I need to leave him because he's abusive but I love him and I want to be there for him. I will take any advice anyone is willing to offer.

I'm 27. In 2019, I suddenly developed strange neurological episodes involving near-fainting, electric sensations, altered awareness, and autonomic symptoms. Since then, I've experienced countless recurring episodes of varying intensity and presentation, sometimes nothing like the first crises, varying completely, alongside a continuous, progressively worsening cognitive decline.

Over seven years, I've gone from being a functional programmer to barely being able to think, remember information, formulate sentences, or hold conversations. I also experience constant derealization, extreme fatigue, headaches, and increasing social isolation. Mental effort can worsen my symptoms. My baseline never returned to normal and continues deteriorating, even between episodes and when my mood is relatively stable.

MRI and routine EEG were normal. Bipolar disorder has been suggested, but my cognitive deterioration continues independently of mood episodes.

Has anyone with confirmed focal epilepsy experienced similarly severe, persistent, progressive cognitive deterioration over years?

Now that my memory and brain is scrambled into a mess it’s getting to the point where what I’m assuming used to be daily life that I wouldn’t pay attention to but now I seem to hit my limit in unusual way and small event where I just mentally unplug and all I can describe the feeling as is some 60s counter culture poet seeing the world in abstract brush strokes but not my life and all I want to do is sleep and avoid society.

Then a day or two later I’m fine and feeling happy again. I wouldn’t say depression but then I don’t remember my life and what depression feel like. It’s more like disconnected where I’m not catching someone operating my body.

How is everyone dealing with long term memory loss? I'm not talking about the short term, though that's shit enough too.

I feel like I'm losing my identity. I feel like my long term memories are abstract brush strokes, or spikes on the horizon that I can't reach. It's starting to filter through recent memories as well, where I can't remember conversations I had a couple weeks ago.

I feel like I only exist right now, in this moment. I'm curious how everyone else is feeling and dealing.

i know that scents are a common thing, but it really bothers me when mine is vomit. granted it makes it easy to tell it’s false, because i know i haven’t vomited. but it’s ANNOYING!!! i much prefer when i smell smoke or a weird burnt smell, though i have of course gone around and checked my house due to those ones so maybe i should be grateful im smelling vomit and get to just chill in my bed.

do any of yall also smell vomit, or a similar odd smell during your partials or auras?

also, i’m okay. my parents have been alerted and i live with them.

I know the feeling of deja vu is often associated with an aura, but I seem to get it a lot more often even if I don't get an episode afterwards. (26M I get focal seizures. I sometimes even stare blankly into space for a few seconds without even realising it(if someone doesn't tell me I won't know), sometimes I know sometimes I don't. It's almost like my brain just hits the pause button for the rest of my body and then it just want to rest or something for a few seconds. At least this blank stare thing doesn't happen often. I don't know if this is something that happens to someone else as well?

I had 2 seizures last night, one at 1am, and one at 5am, because I hadn't been drinking enough water and CVS wouldn't let me refill my Lacosamide/Vimpat. I feel like this partially isn't my fault because I couldn't refill it when I needed to. But the DMV isn't gonna care.

4 months, and now it's ruined.

I hate this...I don't deserve this...but I guess we gotta suck it up buttercup...

Has anyone lost a loved one after super-refractory status epilepticus and cardiac arrest?
My 31-year-old daughter passed away after nine days in a medically induced coma. Following an increase in Depakine (valproate), she suffered a cardiac arrest. After four days in palliative care, we said goodbye to our beautiful daughter.
Our hearts are shattered. This seems to be an extremely rare complication, and I’m desperately trying to find anyone who has experienced something similar.
Thank you for sharing your story. ❤️

I’m just wanting to get things off my chest because it feels like nobody wants to listen.
Idk if it’s relevant but I currently take 1250mg keppra 2x a day and 1200mg Trileptal 2x a day. I’ve had a handful of TCs, and a few complex partial seizures, typically triggered by sleep deprivation or not eating properly.

Im currently 32, and have had epilepsy for 12 years now, it was determined to be temporal lobe epilepsy. After having multiple MRIs, several EEGs, including a week long VEEG, and a PET, done, they can’t find anything abnormal about my brain whatsoever unless it was actively seizing, which is frustrating because even if they couldn’t do anything to fix it, I would find peace in knowing the cause.

But the main point of this, for 8 or 9 years, I’ve gotten episodes of aphasia. it isn’t full aphasia, I can still get sentences out if I really really try but it is incredibly difficult. Reading also becomes next to impossible, as does spelling. During these episodes I can still do everything else normally as long as it doesn’t include words.
I have mentioned it to my doc, and have even had an aphasia episode while hooked up to an EEG, which showed nothing out of the ordinary, and nobody has any answers for me.
They can last anywhere from half hour, to my longest ones have lasted around 4 hours or so.

They’re just irritating. Does anyone else deal with anything similar? Or have any idea what they could be? Cause none of my medical team seems concerned and their answer was to reduce my medications slightly and switch me to extended release versions.

Have been feeling very weird auras for the past 2 years like smelling Déjà vu rising feeling in my stomach my face will get super flushed like beat fucking red I’ll sweat like a pig. It’s very weird and will come out of nowhere and hit me like a truck. My mom demanded a referral I saw a neurologist she said that what I’m explaining sounds suspicious and like focal aware seizures. Had to wait couple weeks for EEG that she referred I just got it done today the neurologist looked at it couple hours after which was super awesome and nurse called me saying that the neurologist said my EEG looks “quite abnormal”. For the past 2 years I thought I was struggling with super bad anxiety switching on and off anxiety medication. My little sister actually suffered from a very bad seizure 2 years ago lasted almost an hour long and was rushed to the children’s hospital. And was diagnosed with epilepsy. She was also saying how she felt those weird auras which led to her big seizure and that’s what led me to thinking maybe I’m feeling something else either than anxiety because what she was saying felt very similar especially “smelling Déjà vu?” unfortunately I was right. Before all of that My mom ended up making me go to urgent care because I was having consistent episodes that were coming out of nowhere and she demanded a referral for a neurologist. The doctor went back and forth with us basically telling us to fuck off. I eventually got the call but still had to wait a month while having episodes. Made me think of others I just can’t imagine how many times people have gone in for the same thing got told it’s just anxiety or something else and they end up having a horrible seizure then they are able to see a neurologist. I would love to hear other people’s story’s and experiences with epilepsy. I was literally diagnosed today and picked up my medication for it. Now knowing it’s a for sure thing kinda is scary to think about now especially after seeing my sister have a seizure and how bad hers was. I feel like I am very lucky to have the referral done and am very thankful for it. I would seriously love to hear your story about anything medical honestly. It helps knowing other people got scary shit going on too:)

My neurologist wants me to do my first EMU stay but I only have enough PTO for 3 days off. I’m on 3000mg of extended release Keppra nightly. Is 3 days even enough time to taper me off my meds, collect anything, and then get me back on them before I have to return to work on day 4? I’ve sent my neuro team several messages last week and left a voicemail and they haven’t gotten back to me at all, so I’m asking here.

3 days is a hard limit for me as I can’t afford to have a short paycheck.

Hi all, Haven’t been able to get my 25 and 50mg pills for over a week, and I ran out completely yesterday. No pharmacy in west London seems to have them.

My GP and neurologist have been no help whatsoever and I’ve had breakthrough seizures, NHS 111 just referred me back to the GP. Any advice greatly appreciated.

Thanks so much xx

I didn’t really receive any knowledge about epilepsy when i got diagnosed a week ago. Been having some rough couple days of random jerks and feeling of doom and panic and nausea. Tried contacting my health care provider but they weren’t really giving any help.

I feel like I need someone but no one understands. I am so lost and feel so weak and stupid and humiliated when i am having these jerks. My brain doesn’t want to function (honestly it has always been like that but now i just pay attention to it more). I wish i understood epilepsy better, had more answers and less guilt. I might be laying on the ground alone and be questioning am i doing this to myself while tears in my eyes and wishing it to stop. I am so lost.

Is anyone here diagnosed with both epilepsy and narcolepsy?

I’ve had epilepsy all my life, diagnosed at 2 years old. Over the past few years I have developed some sleep problems that could potentially be narcolepsy or some other sleep disorder. I fall asleep easily but always wake up several times throughout the night, i have auditory hallucinations while falling asleep and walking up, extremely vivid dreams at night and during naps, sleep paralysis, I don’t feel refreshed when waking up in the morning or after naps and struggle to wake up to alarms, i crash mid day and have been falling asleep at work.

The other thing is i take Zoloft and xcopri which both have fatigue and exhaustion as side effects so that could be a factor too.

I have an appointment with my pcp to get a referral for a sleep study but I just wanted to see if anyone here had a similar experience

I take phenytoin and phenobarbital. I want to start taking methylsulfonylmethsne for my arthritis but my doctor has no idea if it interacts with my meds. I checked the internet and it says nothing about it.

frustrating as my friends use this supplement with great success.

Would really appreciate the input of those who work in research/are researchers or who are practitioners with a special interest in CBD.

My neurologist is one of the best in the UK, but in my consultations with him he keeps saying there’s no evidence that CBD treats seizures.

A couple of years ago I thought he meant there was no evidence it treated anything beyond childhood epilepsies, which I understand to be the first focus of these new treatments. But he mentioned it again a couple of months ago and I’m confused because I have read that some good quality evidence in adults with epilepsy does exist.

I am wondering if there’s something I’m missing, such as the quality of these studies.

I’ve barely made it to month 6 and I really don’t know how you all do it. Major round of applause to each and every one of you!!

i did my eeg at the hospital and it was both such a good experience while also being one of the most painful difficult thing i’ve had to do! i had 6-7 seizures and got to come home early, and my neurologist is amazing and all of my nurses were just incredible. just the most ideal experience for a very difficult thing. my husband was with me the whole time and it made so much of a difference idk how i’d have made it through without him! i’m a very very agoraphobic and traumatized person so it gave me so much hope to come across so many nurses and all of them be so amazing. after having so many seizures so close together they gave me ativan in my iv (which they strongly advocated for me to get as soon as possible even repeatedly calling and texting my neurologist to get him to answer faster) i was able to actually sleep a little bit and i went on an emotional rant to one my nurse about how amazing they all were. it was both so traumatizing and also so worth it. i’m so so glad im home and i have answers i was diagnosed!! i have focal onset seizures and fnd and my neurological looked me in the eyes and told me “this IS a neurological issue and i am going to help you, okay?” and told me we’d talk about different programs and treatments as well it just made me so hopeful. ive had such terrible experiences with doctors in the past and this whole thing gave me a lot of hope at a time i was starting to really feel hopeless.
this is long sorry !! i just have so many strong feelings.
side note-does anybody have tips on recovery? just things that helps (besides so much weed and ice packs lol) my body feels like i’ve been ran over by a bus just head to toe so much pain and soreness

It’s the first day of classes for the new school year and the night before I had a tonic-clonic seizure that left me covered in vomit and looking like I picked a fight with a cheese grater and lost.

I hate this shit. I hate waking up lying on the floor covered in injuries with no memories of how I got there. Now I’m covered in cuts, who knows how long those will take to heal and if they might scar my face, as if I needed anymore after the lovely souvenirs my past seizures left me.

I feel like I’m going crazy. I’m all alone in a different country, far from any family or reliable medical support. It‘s like my life is slipping through my fingers.

I’m asking this because my seizures aren’t that frequent and now my mom wants to keep applying for these caregiver programs and I’m starting to think that most of these are a scam because she will give them my information and not hear back for a month or 3-4 months and I’m getting frustrated because she keeps thinking these plays are gonna actually help me in ga when they haven’t even reached out after we complete the intake information and like I don’t know what else to tell her cause I’m 21 and I’m ready to start living and I just don’t really feel like I need caregiver I understand I have seizures but they are only happening every 4-5 months and i do better when I’m less stressed out but it is kinda stressing me because she is kinda of getting in the way of me living my life it’s already hard enough with epilepsy but steady having a parent constantly hovering on you , I haven’t been able to go out with my friends and talk to females and it’s just she’s making it harder on me and I’m trying to tell nicely but not disrespectful