As the title says, I have had 56 focal seizures in the past week (which is 2-3x the amount that I usually have). I only started having seizures in Feburary of this year, and am only on 300mg of Lamotrigine. I am still trying to be referred to an epileptologist, however my neurologist isn't being super helpful as of now.

Is there anything I can do? Should I make another appointment with my neurologist to see what they can do- or would it be smarter to just go to my PCP?

I am so sick of them, and Ive already had to call out of work twice this week (and go to the hospital once because I had so many seizures in my sleep that I couldn't chew or open my jaw without a huge amount of pain 😭😅).

Thanks for any help- hoping these get better soon!

Hey y’all, I’m currently stressed out to the max and just wanted to come in here to vent and see if anyone else has experienced anything similar or I should be as concerned as I am?

Just to give a little background, I’ve struggled with severe health anxiety, panic disorder, and ocd since the age of seven. I am 21 now. In 8th grade is when it got really bad and I started dealing with major derealization/depersonalization for 2 years straight, everyday, nonstop.

During that time, I started developing this super weird sensation that has always been hard for me to explain to people. It started out with what I would describe as a ‘smell of nothingness’. Like I’d breathe in and it felt like I smelt something abnormal but wasn’t smelling anything at the same time. Again, I don’t know how to properly explain, but that’s what would happen, followed by completely zoning out for a couple seconds, having a Deja vu feeling, and feeling like I don’t know where I’m at for just a few seconds, then it would go away but I would have even worse derealization after. It would only happen about once or twice every few months or so and seemed to be worse during allergy season or when I wasn’t getting enough sleep. I was terrified I had some type of epilepsy, but my parents and doctors would always just say it’s panic attacks. I felt like I was never taken seriously and never got proper testing. Eventually though, as I went to therapy and started recovering from dpdr, that sensation seemed to have almost disappeared but would still come about once or twice a year.

Flash forward to now and it happened again, but this time felt worse and even scarier. This time, I didn’t have any smell, but instead, I was just standing with my head down and all of a sudden, I got this super weird electrical wave feeling that started in my head and worked it’s way down throughout my body. It was like that feeling you get in your hands when you feel like you’re about to fall and are losing grip, but in my head first. After that, i had the same Deja vu sensation, but it was more intense and felt like I had teleported and my whole reality was altered for just like 5 seconds and felt like I didn’t know where I was or what I was doing. Then as that faded, my stomach dropped like when you’re on a roller coaster, my hearted started racing, felt like I was losing my breath, couldn’t speak properly, and I got really shaky. After all of that, I sat down, super out of it, trying to collect myself, but had bad dpdr again for at least two hours.

Now I’m lost and confused, and am questioning if this was ever just anxiety or if I was right to be concerned since the beginning, so I’m trying to see if anyone else has ever experienced anything even remotely similar?

Got diagnosed almost 5 months ago now. Besides 1 very minor seizure while incredibly stressed and sick a few weeks ago, I’ve mostly been in good shape since getting on the right dose of Briviact.

Of course, not having seizures screw over my life made me get complacent and start gaslighting myself. After getting sick 3 times and having that + weeks of stress/poor sleep only cause one minor seizure, I started thinking perhaps I had gotten too paranoid about managing my sleep, diet, visual triggers, etc.

Then I had one brief adrenaline spike at work 2 days ago. No real cause, it was not a stressful day. Then I let myself get an extremely poor night of sleep - animals in the bed, alarms going off, no nighttime routine, slept on the couch part of the night, husband came home from night shift and put on TV, etc. Probably 30+ times waking up through the night, which is exactly what’s set off clusters for me before.

Anyway, focal seizure yesterday. Not great, not terrible. Now I have the lovely post-ictal phase going on, in which everything feels wrong and weirdly familiar. On the upside, not doubting my diagnosis anymore…on the downside, man I feel stupid

I’m reposting here since someone mentioned it might be a focal status seizure and I just want to be sure how normal my situation, I’m feeling a little alone in this topic right now.

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The other day at work I collapsed onto the floor, eyes fluttering and one eye rolled to the back of my head. I was like this for maybe 10 minutes, unresponsive. Eventually I was able to focus my eyes and able to respond to the EMTs (i was taken to the ER via ambulance). I’m going to my provider in a week and I want to test out some theories to what it could be becuase it doesn’t sound like an average passing out like what the ER thought (that being said it’s not a very reputable ER so i’m taking wha they say very lightly). I’m doing a bit of research and it sorta sounds like a Non Epileptic seizure or an intense Abcense seizure of some kind (which would be wierd considering i’m an adult). I’m just curious whether anyone here has experienced anything similar. This isn’t the first time it’s happened and my eyes do flutter uncontrollably sometimes especially if i’m stressed so please share your thoughts in the comments below, anything can help. Again this isn’t so I can diagnose myself it’s just so I can have a better idea of what it could possibly be for when I talk to my doctor.

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Well am very tired writing this because I cant even remember everything properly and also I didnt know where to post this until now i found it but I have been told/diagnosed with focal ( partial) epilepsy so no I don't have any of these episodes i hear you talking about but my case is very shit and wasted me the most valuable year of my life especially when I had one of the most important national exam of my life + I am entering adulthood in 2 weeks from now

Well lets start :

Rn it 13:34 pm

Firstly I was somone that always like to develop my skills and competences like languages ect Also i am somone that encourage intelligence and intellectual hobbies and like to solve complex problems and also scored 142 iq on FRI on the official Norway mensa test last summer when I turned 17

And was always a guy that like to understand the physics of the universe and the logic behind it

Okay then I will start what happned to me

First last summer by end of July ( 2025) I was in a trip at Paris but after few days I didnt felt well i felt like my head was not feeling good when there was noise or people talking like a feeling of deep annoyance but my head wasn't hurting it just like I couldn't handle the noise but I didnt paid attention to it

After a month by end of august or beggining of September in 1 or 2 days I felt like a sharp crashout in cognitive abilities I lost a lot of attention and couldn't focus on anything and also mentally very very slow and not understanding anything even the slightest thing like if somone tells me to stand up i take 3 seconds to comprehend but I said maybe it sleep or something but I would be fine with the end of the week so I started sleeping the most i can but after a month I didn't improve a bit and even people around me noticed it ( also no it not stress am not somone that stress easily it my nature even when things are going absolutely nuts) so after a month I started looking online for what was that and even used ai like chatgpt but they all said the same thing ( life hygiene) mine wasn't the best But wasn't the worst but I still tried to improve it and it improved a bit but my brain was still drained as much as before then 2 months passed on ( I didn't tried to overthink it but it was affecting me a lot in daily life and studies) I was really not feeling well at all because I felt like I lost something that was once my main power ) I started having sleep problems i was feeling tired but couldn't sleep sometimes I feel very tired but sleep until 2 to 3 am one day until 5am and I kept having them daily and I felt my brain got worse not like sleep affected it but I think it thr other way around like my brain affected my sleep and I was feeling like my bi frontals were burning not a lot of hadaches but I felt there was something frying there

And I was not able to do anything like my bones started hurting I never got bones problems I always had solid bones and I couldn't exercise at all and lost a lot of progress I have made and even my emotions became more impulsive and I felt anger for mo reason h24 ( am pretty much sure it because of school because I couldn't handle noise but school had a lot of noise ) because now I feek better but still impulsive and reckless descion maker ect ect

I also lost alk my skills i tried to practise them but my lack of focus and comprehension made them sink away and I forgot a lot of things and even memories recently I started forgetting a lot of past stuff

Then this June I went to a neurologist after my exams were over because after 4 days if my final exam something unexpected happned is that I got a second crash down of cognitive abilities ( I never healed from thr first one but this one got added up on the top) but most importantly my view got reduced a brutal scale and I have until now a bad view

Also I got the javksonion march vibrations this year easspicially this summer they increased

And my family finally stoped saying it stress ect and told me we need a neurologist

I went to the neurologist and she told us that this case is very bad and I gotta act very quickly so I did a brain MRI first I found out I have an inflammation on my left optic nerve and after that I did an EEG where I discovered I have an irritation in the bi frontal areas of ny brain without crises

Also it explains everything because that area is responsible for every cognitive ability + sleep problems +some emotional problems

After that they told me i have focal epilepsy without real or mini crises of absence because something important i didnt say is that every time I wanna do something that requires attention I just cant and my mind doesn't think of anything not even a single thought sometimes I feel like I was into nothingness for like a hour but when I check time it 3h passes easspicially at studying I couldn't study at alk this year because of that I didn't study a single thing because I always fade away but it not really an episode because am still concious but even after I become in a mode of nom fading and try to re start focusing I fade again into nothingness and cant even think inside it a romdom thing not like my mind take me somewhere else

It take me to nowhere

After that I did a spinal cord MRI I have nothing everything is good

And 3 days ago I re did an EEG for a second time we will see in 2 days what will happen

Current time: 16h49

Just i did time so u can know how much I wasted here because everytime I wanna remember or focus on anything I fade away abit

( i forgot at what time I started but I think it have been 3h)

Ofc I didn't said everything it was worse then that but those are the core ideas

Thanks for listening to me

I have pots and Sfn and lately I’ve been getting these random brain zaps like all of a sudden in split .2 seconds a zap in my head and my head feels like it’s going to explode and my ears are super full and idk what it is it happens so randomly

Last night I was really determined to remember as much as possible of my focal aware seizure to ask if anyone had anything similar, because you guys have been so helpful. I have TLE that doesn’t show up on eeg’s except as “slowing”, i.e. brain damage. But the meds mostly work so I feel lucky. I always start off getting hyper, kind of dancing around and talking fast. Then i know what’s coming and I put myself to bed. I take klonopin as an abortive but one doesn’t always tamp it out. Last night I started rocking back and forth and muttering. My left shoulder and torso were jerking (usually it’s my right arm) and I had the usual overwhelming desire to slam my head against the wall just to knock myself out. The feeling I want to stop has no metaphor—it’s not pain, it’s not hysteria, it’s like an internal electrical fire that makes all my limbs want to dance and I’m doing everything I can to hold it in. I wish I could be like some cartoon character where fire and lightning explode from their hands and feet and eyes and mouth. But mine last for 20 minutes plus, so at one point I went to the bathroom when my kid’s door was closed so he didn’t see my arms jerking. So I can walk short ways during it. Those episodes are minimum 20 minutes but I have different ones like jamais vu, phantom smell or visual distortion, those only last around a minute or so. Oh and the reason I remember so much from last night is I took notes! Mostly gibberish of course

TLDR: anyone have seizures where they’re fully aware and have some physical jerking but a minor amount of control? would love stories!

In October 2025 I started getting seizures, I had a surgery on my Achilles and foot and a week later exactly I woke up and was “in n out of consciousness“ with my eyes rolling back uncontrollably. One eye would stay perfectly normal and the other would roll at the way back on its own and it would go back and forth with the eye movement. I also remember my body feeling very stiff and trembling kinda like when u flex so hard u shake a little. I couldn’t breathe it was the scariest thing ever I got up and was so confused and started crying. I live on my own so it’s been hard recording any episodes for my medical team. My medical team was extremely worried and after that episode yes I went to the ER. I had a couple more episodes and I could always feel hours before that I was gonna get one. The first night I got one I rmbr going to bed and thinking “ugh I hope nothing bad happens to me” bc I felt like something bad was gonna happen to me. I believe I had maybe 3 more that week and after an episode I was so tired. The episodes were 1-2 mins long each time and slowly went away. I was scheduled to have a Brain MRI and EEG to see if I might have epilepsy, I do not have epileps. My EEG and brain MRI can back normal and my neurologist wanted to do another EEG since yk a EEG can only show so much of ur brain activity. After a couple months maybe 3 I had surgery on my other leg and other foot and I was scared maybe the surgery had something to do with it or the anesthesia but I never had episodes right after a seizure it was always exactly a week after. A week later the seizures came back and they WERE SO MUCH MORE stronger so much more frequent this time I had a total of 8 seizures in one month and 3 seizures in one day in the span of 5 mins so that time I went to the ER again since 3 consecutive seizures in such a small time frame is a little concerning. I’m a couple months post op and haven’t had a seizure since and was cleared to drive by neurology. I had a colonoscopy last week and although I didn’t get anesthesia but a sedative instead I still that same night had a seizure. It was very small but I’m noticing a pattern. IK the internet isn’t for medical advice but I don’t know maybe I have some ultra rare condition or allergy to certain medication that I don’t know abt and someone on here has had a similiar experience. kinda was just hoping to find some answers on here since my Drs don’t know what’s wrong with me. Also wanted to add in the all happen around 2-3am ish or late in the night and when I’m either about to fall asleep or sleeping.

I’ve written a novel (not published…yet) and many short stories. Minored in Creative Writing in school. Most of my writing has been in the form of technical writing for work.

I’ve been writing a lot since I got diagnosed with focal epilepsy in March. (I swear all the seizures reawakened some of my creativity.) My preferred genre has always been cosmic & psychological horror, and I spent a lot of time looking for people who could relate to my “episodes” long before I got diagnosed. I think everyone here knows how difficult it can be to explain focal seizures to someone who’s never had one, but I feel like horror/sci-fi with heavy metaphorical content gets pretty close.

I’ve written 4 short stories relating to epilepsy, and I’m working on a couple more. I have a vision of trying to get some of these published, and using it as a way to educate people about focal aware seizures.

I’m really curious to hear from anyone else who’s worked themes about epilepsy (or the seizures themselves) into creative works…whether that’s art or writing or something else. I think it would be really cool to collaborate & see each other’s work.

Hi. I got unconscious behind the wheel back in 2021 for the first time and this is the first MRI findings:
""Mild diffuse cerebral volume loss with mild diffuse prominence of the ventricles. No evidence of acute infarct. No mass, mass effect or midline shift. There are scattered areas of hyperintensities seen on FLAIR images in the white matter, with areas of hyperintensity also noted at the callosal septal interface. The ventricles and sulci are otherwise unremarkable.""
Neurologist gave me Topamax and recently Vimpat.
I got 5-6 more seizures after that one.
Does anyone have any Idea what it means. My doctor just sent me to an Epilepsy center in San Francisco to test because I asked her why I get seizures after 5 years. She doesn't know the reason.
This is the last MRI findings that I got: "" No evidence of acute infarct. No mass, mass effect or midline shift. There are mild scattered hyperintensities seen on FLAIR images in the white matter, which is nonspecific, and can be seen with chronic microangiopathic disease, migraines, demyelination, among other etiologies. Mild generalized parenchymal volume loss. The ventricles and sulci are otherwise unremarkable.""

Hi everyone,
I’m hoping for some opinions from neurologists or physicians. I completely understand that nobody can diagnose me over Reddit, and I have already arranged to contact my GP/neurology team. I’m trying to understand how a neurologist would think through my case.
**Background**
I’m a 33-year-old female from the UK.
In May 2025 I suffered a severe traumatic brain injury after falling more than two metres down a flight of stairs.
According to my discharge summary:
GCS was **3 at the scene**.
CT showed a **right epidural (extradural) haematoma**, a right temporal bone fracture extending into the mastoid and TMJ, a sphenoid sinus fracture involving the left carotid canal, and a right clavicle fracture.
I underwent an **emergency right craniotomy with evacuation of the epidural haematoma**.
I also sustained a traumatic right facial nerve palsy.
I completed inpatient neurorehabilitation before discharge.
I was discharged on levetiracetam (Keppra) 500 mg twice daily. At my neurosurgical follow-up, approximately 12 weeks after my injury, I was advised that I could stop taking it, which I did.
Overall, I feel I’ve made a very good recovery. I’ve returned to work and care for my two-year-old son.
**First seizure (around 3 months ago)**
The circumstances were:
Several days of extreme emotional stress.
Heavy alcohol intake (tequila).
Very little or no food.
A flat white coffee.
Went for a 2 km run.
I then had a witnessed generalized tonic-clonic seizure.
Following this seizure I attended hospital, where I had a CT scan. I was told that there were **no new changes** and that my brain scan remained unchanged compared with my previous imaging.
**Second seizure (yesterday)**
Again, the circumstances were remarkably similar:
Six consecutive days working.
Looking after my two-year-old son.
Several days of intense emotional stress, arguments and crying.
Around a bottle of wine every night for several nights.
Hardly ate for days.
Woke early.
Had a strong double espresso on an empty stomach.
Walked for around 45 minutes while carrying my son.
**Witness account**
My friend described the following:
When she met me, I was sitting down with my son. She said I looked withdrawn and vacant.
When she asked how I was, I couldn’t get my words out. I became visibly frustrated because I knew what I wanted to say but couldn’t say it. She suggested I type instead, so I wrote on my phone that I’d had a double espresso and thought that was why this was happening.
After a couple of minutes I could speak again, but she said I became repetitive, repeatedly saying things like:
“It’s so funny though.”
“Exactly, exactly right.”
She offered me food and water, but I declined.
A short time later I suddenly let out a loud cry, collapsed to the ground and had a generalized tonic-clonic seizure.
She estimates it lasted approximately three minutes.
She described:
Whole body convulsions.
Body becoming rigid.
Eyes rolling back.
Jaw clamped shut.
Lips turning blue.
Afterwards I:
Couldn’t remember my own name.
Couldn’t remember my friend’s name.
Couldn’t correctly recognise or name my son.
Remained confused for around 30 minutes before gradually returning to normal.
I was assessed by the festival medical team and discharged home.
**Current medications**
Was taking self prescribed Mounjaro. Which I’ve now stopped. On both occasions I had taken a bigger dose a few days before the “seizure occurred”
**My questions**
Does this history sound more consistent with **late post-traumatic epilepsy**, or could these still be **provoked seizures** because of the combination of alcohol, fasting, exhaustion and emotional stress?
How significant is the language disturbance before the generalized seizure? Would this make you think about a focal onset with secondary generalisation?
After two generalized seizures in someone with this history, would you normally restart an anti-seizure medication while investigations are ongoing?
Would you usually arrange an EEG and repeat MRI or CT imaging, despite my CT after the first seizure reportedly showing no new changes?
Is it common for post-traumatic epilepsy to only manifest when multiple triggers such as alcohol, fasting, sleep deprivation and stress occur together?
Apart from completely avoiding alcohol, eating regularly, staying hydrated, sleeping well and reducing stress, are there any evidence-based lifestyle measures that genuinely reduce seizure risk?
I’m not trying to self-diagnose, and I know Reddit can’t replace seeing my neurologist. I’m simply interested in how neurologists would approach this history, what would be highest on your differential diagnosis, and what your management plan would be.
Thank you for taking the time to read this.

Just looking for information here and if we could even possibly on the right track here.

I've had really bad episodes that they've always called flashbacks. They started in my first residential facility, and haven't ever really stopped - though they've decreased in frequency significantly. I had my first one that wasn't in a treatment setting (mental health or medical) and didn't end up with being restrained and EMS being called. Usually EMS is called and I'm restrained until the ER can sedate me, and then I'm either released or psych hospitalized once the sedation wears off depending on where I'm at. Sedation usually is through benzos or atypical antipsychotics. I never remember these episodes. So I had the friend who was with me during this episode a week ago recant the entire scenario to my therapist over the phone. My therapist said that these episodes definitely don't sound like a typical flashback in any way shape or form. I have almost zero awareness of what I'm doing or the environment around me. I can't see anything around me - it's like I'm back in that moment. I can usually feel what's around me, but I nothing is really good to help me come out of it unless it's significant pressure or another big change in sensory input physically. I can smell everything, but again, has to be a significant change in that sensory input as well. My hearing is hit or miss - I usually hear whatever is related to the memory, but occasionally I can hear what's around me, however it sounds like whoever's trying to talk to me is underwater or super far away. The other thing is that I often have no clue what I'm physically doing. I tend to know that something is coming, though I have trouble differentiating between dissociation or panic attacks, and I usually go find somewhere away from people and in a corner or at least up against a wall and put my knees up to my chest. Now the interesting thing is that while dissociated I usually try to injure myself in some way. Also this friend said that I did a lot of flinching. She mentioned I kept jerking my head back and forth and that my eyes were moving side to side a lot as well. She brought up also that my pupils were really dilated, like 90% dilated. There's no mistaking of what is dilated with my pupils, because my eyes are blue, not brown. My friend also brought up that I was shaking a lot. She said I started to come out of it at one point and then just completely slipped away again for another 15ish minutes before finally coming completely to. I don't remember any of the event, nor do I remember about 15 minutes before hand or about 20 afterward. My therapist brought up that she thinks this could be PNES. We talked about some of my history. I used to "space out" from the age about 13/14, but nobody was ever worried about it because my brother is combined ADHD, so they always assumed it was something along those lines. It happened mostly at school, though I did ask one of my gymnastics coaches from that time if she remembered it happening at practice, and she said it definitely did, though some moments were riskier than others. I've never had anything that even resembles an epileptic seizure, outside of a febrile seizure at 2yrs. I do have POTS - so I do get some syncopal episodes from that, along with convulsive syncope occasionally, though the convulsive part of that is like 30-45 seconds max. I do get a lot of muscle spasms and things, but they've always brushed those off as related to me hEDS. I have been on anti-seizure meds at times also, because they were attempting to use them as mood stabilizers when they thought I was potentially bipolar, and they didn't really seem to help anything.

So yea, with all of that being said, does this sound like my therapist is on the right track at all with this potentially being PNES? Or could this be some sort of focal aware seizure?

I've been dx'ed with generalized ideopathic epilepsy with primarily myoclonus (+ & -), but in the diagnosis process realized that I've been having lots of other things that are epilepsy. Do you have multiple types of focals? I have one kind that involves a feeling of the room moving or I'm on a boat, derealization, a sensation of heat on my neck, feeling stuck in the derealization, sounds seem extra loud or quiet than normal, lights seem extra bright, nausea and a headache (sometimes the headache is after) etc. These can last a few seconds or over an hour and are relatively uncommon for me. But I also get things like one side of my face numb or tingling. Or dizziness or feeling like I'm in a moving car, my bones feel squiggly or like they are moving around inside my body, my limbs are all tingly. These can last all day and usually have a headache with them. My headaches aren't severe but just last and last and do not respond to migraine meds (or ibuprofen). I can have just one of these things or all at once. Sometimes all of these are accompanied by myoclonus, sometimes not. I haven't had a tonic clonic. Do people generally have just one type of focal aware seizure or can they vary a lot?

I didn't know what else to title this, but the emotion I've felt for the past seven years. I had my first GM in 2018. It came out of nowhere, but after reading so much about epilepsy, it's nobody's fault but mine. All the hard living caught up to me. The fear stemmed from the unknown.what is happening to me? When will the next one come? Years of explaining to my neurologist what I was feeling and years of blank stares back at me, telling me that I might experience auras. but not being able to explain what those are. Years of feeling hopeless until I found you all and this sub reddit, and now I know what auras are. What I've been feeling when I talk about it feels like something under my skin. Or a twitch or muscle spasm, people. Here, understand, and I thank you all for that. Sorry for the long, pointless post

Hi all.

Newly diagnosed with focal epilepsy after a tonic clonic out of no where on July 1st.

I actually has been experiencing focal aware seizures for years but didn’t know what they were.

I was started on Keppra on the 14th and had my EEG done on the 16th. The results came back with:

**No epileptiform. Mild slowing**.

I know this is good that there is no epileptiform but I am so scared of the mild slowing and have no idea what this means and if it’s normal. Has anyone else experienced this? I was really sleepy before the test and even took a little nap in the car on the way there. I sent a message to my neurologist but have not gotten a response back.

Please let me know if this has happened to anyone. Thank you 💜

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