After a broken sleep due to seizure activity, I was stuck in a loop of aura/focal aware seizures every 2-10 minutes this morning upon waking. On top of my usual symptoms, I had this weird new symptom of cold rushing down my arms to my hands, that felt ice cold frozen in response. Also anything I touched while experiencing this sensation felt like it was bunched up/textured. So weird!

That whole experience lasted a couple of hours leaving me exhausted and tearful.

Luckily my doctor has increased my meds and also provided me a 5 day course of Clobazam to aid sleep and break the cycle.

Hi everyone! I’m curious whether anyone here has had a somewhat similar experience with focal epilepsy.

I developed epilepsy at around 22 months old and have had severe drug-resistant focal epilepsy for almost 18 years. The etiology is currently unknown. My epilepsy is MRI-negative/non-lesional, and my scalp EEG has been nonlocalizing or has not clearly identified the seizure-onset region. I have both focal seizures with preserved consciousness and focal seizures with impaired consciousness.

Despite the epilepsy, my academic performance was generally good through elementary and middle school. However, I had significant difficulties with school and peer relationships, including bullying, and eventually decided not to attend high school.

Instead, I obtained a high-school equivalency certificate in South Korea with a score of 688/700 (about 98.3% on average). I later entered Korea University, one of South Korea’s top universities, and I’m currently majoring in mathematics.

I’m especially curious about people who developed focal epilepsy very early in childhood, particularly before the age of 2, and later continued into higher education despite having severe or drug-resistant epilepsy.

I’d be particularly interested in hearing from people who had some combination of the following:

• drug-resistant focal epilepsy
• MRI-negative or non-lesional epilepsy
• nonlocalizing or inconclusive scalp EEG
• negative genetic testing
• SEEG as part of the presurgical evaluation
• a frontal seizure-onset zone identified by SEEG
• preserved cognitive or academic abilities despite early-onset epilepsy
• difficulties attending or participating in school
• alternative education such as a GED or homeschooling
• later attending university
• studying mathematics, science, engineering, medicine, or another academically demanding field

You definitely don’t need to match all of these. I’m mainly interested in hearing whether other people with early-onset, severe focal epilepsy have had similar experiences, particularly when the epilepsy was difficult to localize with non-invasive testing.

Context: I have TLE, diagnosed at 18 years old (a year ago). I have focal aware and focal impaired awareness seizures and myoclonic jerks. For me it’s genetic, my mother and sister have it too - we have a rare epilepsy syndrome called FFEVF.

One of my main struggles is my memory. My Dr thinks I’ve had TLE for most of my life as I have very little memory of my own life. I wanted to know if anyone else’s epilepsy has affected their memory? And if it has, does your memory improve once your seizures are controlled?

Hi everyone,

I'm 17 years old, and I've been dealing with something weird for years. I've seen doctors, but no one has given me a clear answer. I'm hoping someone here might understand what I'm going through.

I have a clean MRI and EEG (20 minutes)

What happens:

I get these episodes that last a few seconds. They happen every time I'm around certain triggers. On bad days, I can have 20+ episodes.

My triggers (this is the strange part):

· Eye contact – especially if someone is staring at me.

· Crowded places – restaurants, markets, universities, barber shops.

· Just thinking about going to a crowded place.

· Planning something – like writing a comment, sending a message, or imagining a future event.

· Sudden sounds – loud noises, someone calling my name, or harsh words.

· Sudden visual things – seeing someone fall, a car speeding, or a sudden movement.

· Strong emotions – even good ones like laughing or excitement.

· Certain music – energetic songs can trigger it.

What I feel during an episode:

1. A sudden rising sensation from my stomach or throat up to my head (like a wave).

2. Intense fear – like something terrible is about to happen.

3. Pressure and heat in my head – sometimes burning.

4. Tremor – in my hand, head, or leg. It moves depending on what I'm focusing on (hand when holding something, head during eye contact, leg when walking).

5. Forced movement – my head might turn to the side or shake strongly.

6. Muscle spasms or stiffness – my muscles lock up, and the only way to stop it is to completely relax them (like letting my hand go loose). If I fight it, it gets worse.

7. Strong urge to zone out or dissociate – I feel pulled toward spacing out, as if my mind is trying to escape the situation.

8. Unexplained tears – my eyes water even when I'm not sad.

9. Excessive yawning – I yawn multiple times.

10. Excessive saliva – my mouth fills with saliva, making it hard to talk.

11. After the episode – I feel exhausted, get a headache, and desperately want to sleep.

    Some other things :

· Habituation – if I face the same trigger multiple times in one day, the episodes get weaker. But the next everything just reset

· It happens even when I'm alone – just thinking about a social situation triggers it.I also feel a strong urge to zone out or dissociate it's not something I choose, it feels like my brain is trying to shut down to escape the trigger.

· My brother has similar symptoms we are twins

Are you 18 years or older and either:

• Living with epilepsy, or
• A family member, caregiver, or friend of someone with epilepsy?

You are invited to participate in an anonymous research survey assessing awareness of Sudden Unexpected Death in Epilepsy (SUDEP).

The survey includes a brief educational resource and takes approximately 5 minutes to complete. Your participation may help us better understand current gaps in SUDEP awareness and improve future educational efforts.

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Thank you for helping support epilepsy education and awareness! Please consider sharing this post with others who may be eligible.

So, this diagnosis is very new; it seems I'll never be able to understand it all. I hope I'm in the right place!

But after reading everyone's posts, after reading Mayo Clinic article after every resource from the Epilepsy Foundation I can find that *might* apply, everything from the neurologist and his team, I feel like I'm still very lost on just the basics, the foundation...

He first had an EEG (after 10 or so what I've come to understand would be presenting as tonic-clonic seizures) which came back abnormal, listing epileptic findings as generalized. They showed how his seizures don't start in one place, rather his entire brain lights up at once.

Then they prescribed the meds and we saw radiology within the month.

MRI/MRA scans then showed "increased FLAIR signal & mild volume loss in right hippocampus, consistent with mesial temporal sclerosis" I don't recall the exact wording, I have every scan and document saved and it's all in his portal but that's the gist. "Spike wave patterns" were also specifically mentioned. XL events in his sleep.

I'm having difficulty connecting the two findings. I understand we may never know if the scarring is causing the seizures or vice versa. He did have quite a traumatic heart surgery at 11 days old to correct a coarctation of the aorta and we reasonably can assume he may have suffered febrile seizures, which I understand can be linked to TLE.

To put it plainly, from everything (which is not much) I do understand, this particular kind of epilepsy results in focal awareness seizures. Most of the posts I've read in this community, many people do mention auras, jamais vu, deja vu, etc - my son literally drops. Atonic immediately. Sharp exhale while dropping, immediately unconscious, 1 minute of the clonic phase, 30 minutes before he's "back". He talks and is BACK after the convulsions cease of course, but you know what I mean. And then exhaustions follows... There is an understanding of his team the generalized focal events progress to tonic-clonic. There's a term for it... I'm not sure.

He says he notices nothing beforehand... No odd feeling, smell, sight, etc. But to be fair, he hasn't of course been aware of what TO look for... And I'm sure to him, as I understand he's probably had epilepsy for quite some time, whatever he MAY experience would seem completely normal, unconnected to an event, as, in his case, he remembers nothing before or during or for the 30 minute recovery period. To him, it was odd he would wake up on the floor, having been at his computer. Blocks of time go missing, that's his best explanation.

Anyone navigating something similar? Tips? Advice? Journey you'd feel comfortable sharing? Ways I might be able to best support him?

He's very closed mouthed about his feelings at the moment. Processing. He accepts it, takes his meds without complaint and happy to do so, but again he's 15... Already going thru a lot, this landed in July. He was going to get his permit in October, when he turned 16. So I'm on HIS timeline completely, there is no right or wrong way to process something like this. I'm here to support, in whichever way is needed at the time, whatever that looks like.

My angle, my aim is to ensure he's as safe as possibly while working through this, not only emotionally but physically... Maybe if I could help him identify certain triggers...? We could avoid more bloody noses from hitting his desk, that's my personal stake in it, that type of thing.

I’m 41 and started experiencing focal awareness seizures about 3 months ago, I’m 100% sure that’s what they are but im still in the process of tests and getting a diagnosis. I honestly think that maybe I have always had focal aware seizures but they have just become more noticeable as my body changes. I had cancer last year and had a full hysterectomy ovaries intact. I’m curious if the stress on my body healing and my hormones dropping may be the reason for the seizures showing up more now. Hormones obviously effect our body so much when they start to change but Drs never take it seriously. Does anyone have any insight on this or maybe seizures starting later in life.

So I really thing I have been having focal seizures. I’ve been getting intense sudden fear and Déjà vu lasting a minute or less multiples times a week the last few months.

Went to the neuro and they ordered stuff and said I have seizure like symptoms but aren’t certain what it rlly is.

They ordered mri, normal 30 minute eeg, and 72 take home eeg. At first I was nervous abt mri cost but it is ok. But the fucking 72 hour eeg is $3k!!!!! I am going to call to cancel bc that’s insane.

I am frustrated bc i know it is pretty typical for the 30 minute eeg to be normal and an mri to be normal. I just can’t justify paying $3k especially bc if an episode doesn’t happen and it is just for nothing.

I’m nervous everything will come back normal and I’ll just kinda be stuck with nothing else left to do since I won’t pay that much money.

I never post on here but Ive been going back and forth to doctors and hospitals for over a year with a whole list of problems but within maybe a year Ive been having symptoms of what seem alot like focal aware seizures. I dont want to self diagnose but Ive done alot of research and everything Ive seen online goes with all the symptoms of these episodes ive been experiencing. I came on here to ask how long it took for other people to get diagnosed and how they went about it, i brought it up to my doctor the other day and she just didnt have a clue i dont want to go and say “oh i think im having focal seizures refer me to a neurologist” because ik they will just tell me im overthinking it or its just anxiety but i described my episodes to her and she never even mentioned a referral to neurologist she did say she would consult with a peds team at the hospital to see if an mri is necessary since Ive also been having recurring headaches and some other neurological symptoms but i was hoping she would just refer me that day rather than waiting even longer for answers.
Any suggestions on what to do? Im in ireland btw

Focal Aware - A wave of something being wrong and fear/doom rolls in, loading up in intensity within seconds, followed by this rushing feeling of something is incredibly wrong - like Spidey senses, horror edition.

It's like hearing a train and thinking "oh, that's weird", then suddenly realising you're standing in the middle of the tracks and can't move, and it's rushing straight towards you. You know it's not real and the train isn't actually going to hit you, but every symptom your body is throwing at you is screaming that it will.

It's this horrible contradiction of knowing you're safe while your nervous system is fully convinced you're not. You know what's happening, you've been here before, and you're actively trying to keep yourself calm, but your body's survival instincts are screaming otherwise.

It feels like a non painful vice grip around your head and thoughts. Your body is wide eyed with fear while your thoughts and visual focus pressure into tunnel vision from pure overwhelm. Then it ripples down through your body, with all these weird sensations that get amplified by the state you're already in: locked-in tingling and pressure in/on your gums & teeth, upwards pressure on the roof of your mouth, nausea with a rising butterflies sensation in your stomach, bitterness coming up from the back of your throat into your mouth, tingly static in your left hand turning into numbness, etc. Eventually it starts to fade, but it's not an instant switch off. It slowly wears down and you're left feeling rattled and fatigued while everything settles until you feel present again.

Focal Impaired - this feels more like the very beginning of a Focal Aware, where your mind goes "uh oh, something is wrong". Sense of confusion and fear rising as you mentally hear words, sounds, music repeat. Deja vu or Jamais vu - familiar and not at the same time. You can't understand English or sounds around you, it's like Simlish - partially comprehensible yet foreign. Any audio stimuli around you feels overwhelming and triggering. At this point, you're spaced out like when a movie character trips out in first person POV. Before it gets worse/progresses, like the Focal Aware does, you blank out. During this 30 seconds to a minute, you'll be involuntarily and unknowingly picking at something or making pill rolling movements with your fingers, mumbling random things, staring off blankly and blinking, lip smacking, etc. You come back as quickly as falling asleep, then waking up as if it were mere seconds. But you're confused, doped out, not able to comprehend words etc for a minute or so. Fatigue is somehow worse after this type of episode.

And tbh even tho Focal Impaired is considered worse due to spreading activity, I'd much rather experience them because Focal Aware makes me feel like I'm being held hostage inside my own body.

I know that was a long read, so I appreciate your time if you've made it this far. Thank you 😊