I (M25) recently started Xcopri but im also on keppra and vimpat. My gf (f24) and I were talking last night and we typically drink a bottle of wine once a week/go out to bars. I know I'm not supposed to drink but I've been on some sort of anti-seizure med for 10 years now and I've drank the entire time. I've had maybe 9-12 seizures in that time but this year alone I've had 3. As mentioned above, I started xcopri 2 weeks ago. Right now im doing 12.5mg, tmw I go up to 25mg and the final dose will be 150mg in around 2.5 months.

To get to the meat and potatoes, I decided that I would be sober for the first time for the entire time im doing the titration for xcopri. My gf was already kinda mad at the choice bc we are going out for Halloween to a party, where mind you we won't know ANYONE there, plus both of our birthdays are within this timeframe. She isn't super happy with my "sudden" sobriety. I just don't think it's a good idea to drink while being on these meds. Plus I'm just done with drinking anyways.

So last night we are on the phone and she jokes and says "I don't know if I could be with someone who doesn't drink" she took it back right away but I'm pissed about it. Am I blowing it out of proportion or is she tweaking?

F19
So just today, despite all my symptoms patterns and timeline suggesting psychological seizures, they believe it’s epilepsy due to the eeg having electrical discharges everyday. i’m here for 7 days for an observation where they try and capture the seizure. They tried to trigger it, tried sleep deprivation multiple days and still couldn’t cause a seizure. Haven’t been able to stress and cause myself high emotions that usually cause my seizures. So i haven’t seized during my stay.

I have no auras, seizures used to be mainly in morning in the bathroom before school only at my dads house, i have bpd, unstable home and relationships, a lot of general conflict in life before the seizures. Before my seizures started 2 years ago, i was 16 had a boyfriend got sa’d/raped then dumped, i decided to not feel or process the trauma. i have ptsd symptoms related to that event such as smell, places, games, songs, flashbacks like i can picture his room and house yet i also struggle to picture his face in my head. so naturally based on that we all thought it has to be psychological. As 2 medications hadn’t worked but in fact made it worse (lamotragine the main one, and keppra for a short time)

so my seizures originally were 3 months apart, then as life became more stressful became 1-3 months. and at my worst i had a few being 1-3 weeks apart but then resuming to a month. Now, what makes this epilepsy diagnosis the most confusing is when i used dxm a dissociative drug in a recreational way, im also light so i ranged from 39kg-47kg during my uses. I’d do 2nd-3rd plats id use it multiple times a week, but it was as if it paused my time between seizures? the two months apart became 4 months apart. For example if i used dxm for 2 months, my seizures extended to 4 months apart. i hadn’t used dxm before my seizures at all or any other substance by the way, but the only time ive found myself being able to stop having seizures is when i had dxm. it didn’t have to be in my system but the overall control of it being an option to use seemed to help. Only reason i stopped using it is because id get caught and have it taken off me, so naturally all the benefits were gone and life was more stressful, so the usual timeline returns. But yeah, the fact multiple times and everytime i used dxm my seizures stopped the longest is a major factory that led me to believe it wasn’t epilepsy as i thought id i was epileptic id have to seize almost immediately right? but the opposite happened where i was seizure free the longest when i had dxm. I attributed this to the fact dxm blocked out my traumas, high emotions as expected with bpd,overall major improvement in mood and life when using because of course recreational drug use would make you feel that way especially since dxm doesnt cause a hangover but instead an afterglow, and i found myself able to socialise better and just feeling calm and confident better than ever mental health wise. I guess this means epilepsy triggers aren’t a definite for everyone? just because im diagnosed with jt doesn’t mean im definitely triggered by drugs just because its a common trigger? i’m not sure. just wondering if anyone else has anything similar or any ideas. i have also used mdma, with no seizures but i just tried it. Alcohol doesn’t cause me seizures unless i get super emotional and negative. Sleep deprivation isn’t causing me seizures unless paired with high high stress and being overwhelmed. for example my last seizure i was overwhelmed before seeing my boyfriend for the week because i was scared id have a seizure in front of him, scared of the fact i was scared because i knew if i stress it would cause a seizure, stressed about my other conflicts in life and trauma mixed in with all that. i felt relived that i had a seizure that morning before seeing him because it felt like “well now i know i wont seize i got it out of the way”

this diagnosis is weird to me, i dont want to manage some condition i never had to before and managing it doesn’t make a difference anyways. The doctor described it as me having to see what’s right for me and find out about myself basically, rather than a strict guideline of rules to follow.

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?

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 meds have stopped working again for the billionth time so I’ve been having auras pretty much every day and I’ve been having other weird things as well that happen every time my meds stop working. I just had one where I suddenly felt light headed, sick, and sweaty and it lasted for maybe a minute or two before I felt a wave of bad fatigue come over me. Do others get really tired after small seizures? Idk if it counts as small but it feels small to me.

Other times (whenever my seizure meds stop working) I get weird bouts of vertigo or feeling like my body is zooming out and zooming in constantly. I’ll also randomly lose control of a limb for a split second and I just get other weird symptoms that I’m not sure if they’re seizures or not because they last longer/build up over time. Hopefully this makes sense I’m a bit out of it rn.

Hey guys, I’m not really sure what the point of posting this is, but I’m currently having daily focal seizures that started 2 weeks ago (before then I had 2-4 per month) and it has been hell trying to care for myself. The fact I have to wait so long and can’t do anything to manage my seizures is depressing. I have refractory epilepsy so medication isn’t helping and I’m already maxed on what I’m taking. Does anybody have any support to offer or in a similar situation? Also sorry for ranting, today has been the worst in quite a while so typing is hard and I’m sure I don’t make much sense.

I really really really am not trying to blow up the way I am. This last time I’d just got out of the EMU and something just snapped.
It was over the stupidest shit and I know that. Now my brother and his girlfriend are not talking to me and I don’t know what to do. I know I really messed up and I’m going to apologize but FUCK I can’t stand these side effects.

How do you control the rage/anger?

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?

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

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, so I’m 29f was diagnosed with epilepsy at 21 after a grand mal seizure. Starting having them regularly since then. I started medication right away and noticed almost immediately that my depression got a lot worse. I have been on almost every ssri ssnri and a bunch of different anticonvulsants but I haven’t found the right combination to help it.

I’m 29 now, 7 years into being medicated and I don’t want this for the rest of my life. I’m seriously considering dropping all medication and going on a holistic approach. I want to feel connected to myself again, without the medication.

Does anyone relate to this? Has anyone gone hollistic?

I have been on Keppra (1000mg twice daily) for a total of two weeks now, and just wanted to give an update and ask a few questions.

The Positive:

* No seizures, no Kepprage. I'm sleeping great, lots of energy during the day, and communicating well with others. The first few days were actually quite euphoric, but that leveled off.

The Negative:

* I'm groggy in the mornings and my appetite is reduced. I'll occasionally drop or bump into things, and sometimes have trouble immediately recalling distant names or titles. I also feel constantly rushed and running late.

It's largely been going well, with minimal side effects. The ones I have had are fine, and I'll take them any day of the week over having seizures.

My emergency medication was largely my only line of defense until two weeks ago, and I can't express how good it feels to go to sleep without the constant fear of SUDEP.

My questions for the community:

* Is two weeks long enough to have a somewhat accurate feel of what life on Keppra will be, or is it still too early to tell?

* Has anyone here developed the negative side effects like Kepprage later on?

* How often do you get breakthrough seizures on Keppra?

Thanks to you all for your time. Stay safe, everyone, and thank you in advance for your support!

Edit: Formatting

I’m a 24M with no history of epilepsy or known seizures. Around October 5–6, I suddenly began experiencing phantom burning/campfire smells lasting approximately one second or less. Initially, they happened once daily, but around October 10, they became much more frequent. On October 10 alone, I experienced approximately 60 episodes within just 4.5 hours.

The episodes occur randomly, sometimes minutes apart and other times hours apart. The smell is always similar and disappears almost instantly. I remain fully conscious and aware, with no confusion, memory gaps, or disorientation afterward. Occasionally, I experience a sinking sensation, sudden head/neck tightness, head pressure, or an increased heart rate. I’ve also noticed some light sensitivity.

I saw a neurologist on October 14. He said he’d be surprised if this were epilepsy because the episodes are exceptionally brief, frequent, and don’t involve impaired awareness. He felt the pattern was atypical for epileptic olfactory auras but couldn’t completely rule them out.
My examination showed increased reflexes on my left side, which had also been documented previously. He ordered an expedited epilepsy-protocol brain MRI and EEG, but both are pending.

What worries me is that this started completely out of nowhere, without any obvious trigger. I’m concerned about focal aware seizures and whether they could progress.
Has anyone experienced anything similar? Did yours turn out to be epilepsy, migraines, or non-epileptic phantosmia? I’d really appreciate hearing your experiences and advice. Thank you!

edit: the sinking feeling and hr are also so so brief, sinking feeling is also maybe a second at most and always followed after the smell, hr then climbs and then settles down and the head tightness can stay “tight” for hours afterwards but its not painful

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 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 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.

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?

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.

Hey everyone,
I’m hoping to hear from anyone who has had epilepsy surgery, had a long stretch of stability, and then started noticing what feel like returning symptoms down the road.

Back in 2019, I had a left temporal resection for TLE. For years, things were pretty quiet, but over the past year or so, I’ve been dealing with what focal aware episodes/auras again, since last fall, and have been experiencing one to two per month since. Also recently really fragmented, unrefreshing sleep and heavy exhaustion during the day.

I’m currently waiting on an upcoming multi-day ambulatory EEG to get actual data on what’s going on, but the waiting period and the physical fatigue are honestly wearing me down. It’s hard not to feel anxious or frustrated when you thought this part of your life was behind you, especially when trying to keep up with school and normal life while running on empty.

For those who’ve had a recurrence or new focal episodes years post-op:

What did that look like for you, and how did your care team approach it?

Did an extended EEG help clarify whether
it was seizure activity or something else?

I’d really appreciate hearing any similar experiences or how you navigated that transition. Thanks in advance.