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'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?

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?

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.

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:)

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 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.

hi guys! i posted about upping my meds and my myoclonic jerks are still happening :( im calling my neurologist soon, but its just so annoying, and keppra is hard on my mental health
ive been seeing that myoclonic jerks are seizures, is that true?? - my neurologist was telling me something about the jerks but yall know epilepsy memory
my twitches are usually in arms and legs and can be big movements or tiny muscle spasms, it even makes my butt cheek clench too even though im not intending for anything to happen
i am 82 days seizure free but i swear my body is ramping up for some bs again

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.

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...

I’ve been on Keppra for 12 years and my seizures have been controlled. Recently had a break through seizure, my neuro upped my Keppra dose. Had another breakthrough seizure. I Had an EEG done and the results showed abnormalities, so my doc wants to add Vimpat. Has anyone been on the same combination of medication? How was it for you?

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.

My mother suffers from epilepsy, as long with daily, nauseating, seizure inducing migraines that begin to set in just an hour or so after she wakes up. If she doesn't regularly smoke marijuana to help the symptoms, she will have terrible seizures all day long.

I don't know how to help her. Listening to music and taking pain medicines are enough to soothe her head pain enough for her to be able to smoke and be alright for the next few hours or so. But it's still painful to have to hear her be in pain every day. She doesn't deserve this. Are there any publicly accessible remedies that could help?

For reasons i don't feel comfortable disclosing, we are not able to get her any prescription medicines or general professionally-administered remedies.

Hi, for a few years now I've been having what I think to be focal aware siezures. I have these stretches of time where my body moves on its own, contracting muscles all over my body forcefully and painfully, but I am mostly conscious throughout the whole process. I've timed them before, and for a while when they've lasted for longer than 5 minutes (which does happen often) I've gone to the local ER. I stopped after the last visit, because rather than providing some form of siezure medication like the first visit (which did stop the convulsions), they said it "wasn't siezures" and gave me benadryl, which worsened everything, then knocked me out with benzos.

For the past two years I've been fighting with every doctor I've gone to, trying to get any sort of acknlowedgement of my symptoms. No matter what I tell them, they refuse to consider that it could be a siezure, instead blaming my symptoms on my generalized anxiety or a PTSD episode. I know what a PTSD episode is like, and this isn't that. I eventually went to a new primary care who ordered a lot of testing, but the neurologist they sent me to outright refused to test me. I had to wait an entire year just to see the neurologist in the first place! I've been feeling kind of hopeless about the whole thing, and I'm terrified that I'm recieving lasting damage from all of this.

How do you get a doctor to actually listen to you? Am I doing something wrong? Is there anything I can do to find some kind of diagnosis sooner?

My neurologist said it’s very likely that I’m experiencing gelastic and dacrystic seizures. Does anyone else experience these? What do they feel like for you? Do you have memory gaps? Do you feel like you have no control over what your body is doing? How long do your seizures usually last?

I’ve also been told I can no longer take Keppra because it could worsen my bipolar disorder. I’m upset because I felt safer taking it, even though my focal seizures have been becoming increasingly frequent and severe. It’s making me a little upset, cause I’ll have to change meds.

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 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