r/focalawareepilepsy

Hey! So my 9 year old son who is also level 2 autistic have been dealing with seizures since he was 5 years old (maybe younger but I saw it when he was 5 for the first time). After he probably had one every year if that. We had the choice of medication or waiting to see if it would go away. Since at the time he was still not talking we wanted him to be able to let us know if the medication affected him and in what way.

Fast forward to now he is 9 and his seizures have come back starting Aug of 2025 having one literally every month. His Neurologist have done every test MRI came back normal, CT scan normal, and his EEG was normal awake but showed spikes in the second relm of sleep. Tomorrow of Aug 2026 we talk medication and I’m terrified.

I think it’s because I’m in so many support groups and people on medication still seem to get no relief or have MORE seizures than before. Or the seizures get worse 🫤 it’s like a lose lose situation. Anyone have positive feedback or did anyone actually benefit from medication? I just don’t want him to be worse than he is now & regret it. But it’s like ultimately, I may not have a choice. 😔

I just wish medication was more of a clear solution.

In the last few months when my clusters get really bad I constantly catch myself in these moments where my muscles are super tense. My feet are typically stuck with my toes pointed toward my shins and my arms curl slightly inwards but not super noticeably, and my shoulders are like level with my chin. I don’t notice it until my body relaxes and then I’m like “whoa, I was super tense!”
I can’t tell if these are types of seizures or just me being super stressed or what, but I never notice when I go into them, only when I come out, and it typically happens when I’ve had a lot of other seizure activity. Does anyone else experience this??

it’s difficult to describe my seizures because they are so bizarre to me and i am semi conscious but there is a brief second i feel like i lose complete consciousness but i usually start saying random words that don’t make sense and get goosebumps sometimes or feel weird in general and sometimes pace around for a little before the actual seizure and i get a feeling like my head is very heavy beforehand then i get a weird burnt rubber smell, i stare and drool and get tachycardia and sweat alot and turn red when i come out of my seizures i am agressive and have assaulted nurses due to being very confused and afterwards all of that i am left with a horrible migraine i know what’s happening is very real but i get dismissed because Ive been diagnosed with psychosis and its frustrating that one short test has made them decide its not epilepsy. Does anyone have seizures similar to this? What type of seizures could this be? Also i sometimes get a distortion of music and sounds before it happens

Dx Focal Epilepsy, seems to be deep in the brain (neuro suspects insular cortex or ACC) but when it spreads it's very similar to right sided TLE.

I'm taking Lamotrigine 100mg twice a day.

The seizures I get where I'm awake and aware are always ictal fear, "deja vu" that lasts minutes, and a metallic taste/smell. It doesn't usually turn TC but it has before.

After the EMU stay & medication, I'm just getting a lot of small deja vus, but I don't know if they're normal or brief tiny seizures/auras(?)

How are people able to tell?

These "mini deja vus" only last about 3 seconds and are accompanied by a similar dreadful fear, I feel the room spinning for a second, that "oh no" feeling, but then it quickly goes away. So I'm thinking it may be the normal deja vu??

Unsure if to bring up to my neuro, it's only been about 2 weeks of taking the meds, so. I understand it may take time for the full effects/benefits to kick in.

Does anyone experience full body shaking (almost like a seizure) but conscious in a way? Lots of crying, babbling and somewhat making sense when speaking? Words are clear but the context of the words isn’t always relevant. Mood swings, very weepy and confused. Doctors are saying they’re not seizures but there is NO WAY this is a panic attack??

I had an SEEG, and now my doctor has recommended a second surgery to remove the area of my brain that is causing the seizures. He told me, “I’m pretty sure we can make you seizure-free.”

What are your thoughts? Has anyone gone through a similar experience?

I (23M) have my first neuro appointment coming up and am trying to figure out what to expect.

So it is suspected that I have focal aware seizures because I get sudden waves of very intense Déjà vu and fear that last a few seconds to a minute.

But I lowkey feel dramatic seeing a neuro bc it’s not like I am full on convulsing but still the random fear and stuff is scary.

Just curious what the first appointment would be like. Is it just me talking a lot explaining everything? Like I said I feel dramatic so I’m worried they’ll judge me for going there

Thanks for the help!

I’ve had all my hormone levels checked and they are completely normal

These are my symptoms:

Full body sweats whilst walking even on cold days.
Headaches feeling like a tight band placed in a halo around the head, pain/pressure in the frontal lobe, stabbing pain/electric shock from temple to temple and pain/tenderness around left temple and nauseous with headaches.
Significant increase in memory loss (not remembering what she was doing or was about to do or if she had already done something ie locking the front door) and spatial awareness and maintaining focus and elevated anxiety/short fuse.
Numbness, weakness, tingling/pins an needles down left side of body. One occasion of the left side of the face feeling numb.
Increased number of spaceouts with increased duration and head pain when returning from spaceouts.
Blurred vision with black specs and two occasions of everything turning blue which lasted approximately 2 minutes. Also struggling with light sensitivity.
Constant lightheadedness/room spinning and objects appearing to move closer or farther away when standing still and whilst laying on her back.
Several occasions where the room started going dark.
Headache lasting for 5 weeks with no relief from pain medication ending in a hospital visit and being given a medication for migraines via drip which eased the pain for 36hrs before it returned again.
Near fainting episodes x4.
Dizzy, nauseous overwhelming feeling of being about to pass-out.
Flashback memories during space outs.
Space outs that can't be communicated through and has no awareness of what's happening around her.
Feeling of being somewhere for the first time even tho being their several times before (not familiar with surroundings)

Hi everyone. I’m hoping to hear from people who have been diagnosed with focal seizures/focal aware seizures, particularly anyone who has experienced preserved awareness, one-sided jerking, speech arrest, visual/perceptual changes or emotional symptoms.

I’m currently waiting to see a neurologist. My appointment has been a six-month wait, but my referral has now been escalated because I’ve been having these episodes more frequently.

I also have a significant neurological history. In 2007 I had two subarachnoid haemorrhages, and I have a history of a large left frontotemporal subarachnoid/arachnoid cyst, which was fenestrated (around 5 cm).

The episodes I'm experiencing tend to follow a fairly similar pattern.

Before the episode, more often than not, I experience:

• A feeling of being disorientated
• Perceptual changes in my vision, where everything can suddenly feel distant or somehow different from normal
• Blurred vision
• Nausea, and sometimes vomiting
• A sudden, quite distinct wave of sadness/emotion

I then seem to go directly into the episode.

During the episode:

• I have jerking/twitching predominantly affecting my right side/right arm
• The jerking usually lasts just over a minute
• I cannot respond to people during the episode, but I can hear what is being said around me
• On some occasions I have gone into complete speech arrest
• I remain aware enough to remember what was happening around me, despite being unable to respond normally

Afterwards:

• I can have slurred or impaired speech for up to around 30 minutes
• I experience extreme fatigue
• I often develop a headache
• It takes me some time to feel completely back to normal

I've also had episodes of involuntary jerking/shaking in the past, including an episode back in 2018.

I'm not asking Reddit to diagnose me — I know I need proper neurological assessment, which is happening. I'm mainly hoping to hear from people who have experienced something similar and can tell me what their own focal seizures were like.

I'd particularly love to hear from anyone who has experienced a combination of:

• Preserved awareness but being unable to respond
• One-sided/right-sided jerking
• Speech arrest followed by slurred speech
• Visual/perceptual disturbances beforehand
• Nausea or vomiting
• A sudden wave of emotion/sadness as an aura
• Significant fatigue and headache afterwards

If you've experienced anything similar, what did your seizures feel like? What investigations did you have (EEG, MRI, etc.), and did it take a while before you got a diagnosis?

Thanks so much for reading. ❤️

Terrified about pregnancy and epilepsy (on Aptiom), could use some real experiences
I have focal epilepsy (complex partial seizures), diagnosed formally a few years ago after years of it going unrecognized. I’m currently on Aptiom (eslicarbazepine), 1000mg daily, and it’s the first medication that’s actually kept me stable , I went through Keppra, Zonegran, and Spritam first, and none of those worked for me. My last seizure was nocturnal, several months ago. I’m not planning a pregnancy imminently, but it’s something I think about constantly, and honestly it scares me more than almost anything else about my future.
A few specific fears I’m sitting with, and I don’t even know which one to prioritize:
Seizure control during pregnancy — Does pregnancy commonly destabilize seizure control even in people who’ve been doing well? I finally found a medication that works after failing three others, and the idea of losing that stability terrifies me.
Medication safety — Is Aptiom/eslicarbazepine considered safer or riskier than other options during pregnancy? Would I likely need to switch meds before or during pregnancy, and if so, how do you even manage the risk of switching away from something that’s finally working?
Risk to the baby — Beyond birth defect risk from the medication itself, how much does seizure activity during pregnancy actually endanger the baby directly?
Genetic risk — Is there a meaningful chance I’d pass epilepsy on, or is that more dependent on the specific cause/type?
I know a lot of this will eventually be a conversation with my neurologist, but right now I mostly want to hear from people who’ve actually been through it ,on Aptiom specifically if that’s you, but really anyone with epilepsy who’s navigated pregnancy or is thinking about it like I am. Did the reality end up better or worse than what you built up in your head beforehand?

Hello, all! I recently (in May) went to UCSF and had an inpatient EEG done. So, for four days, I was in the hospital as they were checking for epilepsy.

My results were abnormal. Below, is what was stated in my EEG results.

[Day 1:

There were intermittent bursts of mild slowing.

at times with

shifting emphasis to left or right, consistent with

drowsiness.

Day 3:

Intermittent excessive delta/theta, both left and right, but more often on the left Example: right sided slowing and generalized slowing better on the left

Intermittent generalized sharpened slowing, at times with an appearance of poorly formed spike wave discharges Example: generalized slowing almost with appearance of poorly formed spike wave

IMPRESSION:

This continuous Video-EEG monitoring study was abnormal. Intermittent mild/moderate slowing, generalized and lateralized to left and right, a nonspecific finding of cerebral dystunction.]

My mother and sister have struggled with seizures in the past, and it was even suspected that my sister had childhood absence seizures but they never diagnosed her or put her on medication, they put her on ADHD medication instead.

However, I was never treated for them. Mine have been difficult to catch, and you can never really tell I'm having one unless I tell you. I've also had episodes that were close to a Grand Mal type seizure in the past, but again, they've never been able to catch them.

Medication like Topamax had my seizures decently under control for a bit but I had to stop taking it due to paraesthesia. Now, I'm on Trileptal and it isn't helping as much but there's still a decrease in intensity and frequency of my focal seizures.

If anyone can give me any advice on what to do next... I really want to figure out if these are epileptic but no epileptologist will give me a definitive explanation.

I have also had an overdose (klonopin and clonidine) in 2023 that could have definitely made the seizures worse. I never went to the ER, but I was in and out of consciousness for three days.

Again, I've had these seizures for as long as I can remember. They've just gotten worse. I've also had COVID and EBV and had a really bad illness when I was younger that caused me to get a spinal tap due to my symptoms resembling meningitis. They never found out what it was. My diagnosis right now is focal seizures, but not epilepsy.

Anyway, sorry if this is all over the place. Any advice will help!

P.s. I also consume cannabis daily. CBD doesn't help as much, but I've heard good things about it for epilepsy.

Hey everyone, looking for a bit of advice or to see if anyone’s experienced something similar.

​Every time I take a hot shower, it triggers these really intense auras along with rapid, back-to-back flashes of past dreams (kind of like extreme déjà dream / déjà vu).

​I went to a neurologist about it recently and they ordered an MRI and a standard EEG, but both came back totally normal. The thing is, the episodes haven't stopped, and I'm feeling pretty stuck.

​Where should I go from here? Should I go back to my current neuro and push for longer testing (like an ambulatory EEG), or try to get a second opinion with an epileptologist?

​If anyone’s gone through something similar with hot water as a trigger, I’d really appreciate hearing your thoughts or advice!

Hi, I'm looking for advice or for anyone to share any similar stories as I feel like I'm going around in circles.

2 and a half years ago I was diagnosed with focul epilepsy despite my mri and a 20 minute eeg coming back all clear. As my tests have been clear, I'm having a really hard time fully accepting this diagnosis and starting my meds as I also have read stories about PNES and feel this could possibly be whats wrong with me.

My symptoms :

Strong deja vu that is accompanied by a rising feeling in my stomach along with intense fear and confusion.I feel like the Disney programme "That's so Raven", if anyone can relate lol.

"Mini" sort of deja vus that can cluster for a full day. Not as strong as a full blown deja vu but it feels like my memory is constantly being triggered by something ,I see, think or hear. (I find it hard to explain these ones) I do not always get the stomach rising with these. My brain feels so much pressure during these as if its building up to something massive but it always eventually comes back down and I'm left feeling exhausted and disassociated.

Multiple weird "forced dreams" per day. Again, triggered by something I see, hear or think. As if I get images of past dreams I've had that are vivid, but I can't actually always recall what the dream is or I'm only able to catch a tiny glimpse of it. These don't feel like normal remembering a dream, they come quick and sharp and almost as though my brain is making it up on the spot to relate to whatever triggerd it. Also comes with fear.

Weird deja vu feeling when I'm drifting off into a sleep, sometimes accompanied with the stomach rising and always with the fear feeling.Also, when I wake up sometimes my brain just instantly feels " off" and foggy.

Sometimes I get almost like a sleep paralysis and can feel my eyes flickering and as though I'm struggling to breath. Then I wake up with my heart racing.

Aswell as these, I've got a constant CRIPPLING anxiety and ocd. My life has been on total hold for almost three years and I'm desperate for answers if it's my anxiety/ ocd triggering PNES or is it infact Epilepsy that's causing all of this including severe anxiety. I experience some sort of weird symptom everyday and have struggled to find any story that is the exact same as mines.

These are just a shortlist of things I experience, I get smaller things like weird smells ( been woken out of my sleep a few times with the smell of burning) and am also prone to migranes.

I'm currently pushing for a prolonged EEG with my neurologist but he was very hesitant to even give me a 20 minute one as he's so sure that it is epilepsy and an EEG will be a waste of time as it might not pick up anything.

Is it normal with epilepsy to feel such bad anxiety and dpdr almost 24/7 as that's the part of my brain impacted ? Could this be PNES ?

Any advice or similar stories would be so appreciated as I'm desperate to get my life back. Thanks 😊 x

So, I'm 26 and was just diagnosed with epilepsy like 3 weeks ago. Apparently I had a seizure at the animal shelter, which I have ZERO recollection of, and my medication only does so much. I have the ones where I bite down on my cheeks and tongue really hard and lose memory, ones that are triggered by stress, twotches and convulsing and stuttering, and I'm super sensitive to lights from screens and the sun. Heat also reallyyy sucks now. I was just wondering if anyone has any advice. I got these polarized clip-on lenses for my glasses, and they kind of help, but only for certain periods of time. I just really don't know what to do. I've also been having non-stop seizures because of major stress to the point I need a freaking cane to walk because I'm so exhausted and frustrated. I can barely walk to my bathroom let alone the fridge. Just looking for any advice because my family is having a hard time coming to terms with it and I've lost friends because they are saying it's "too much." I just really feel lost atm. I was having symptoms through the past couple of years, and now I know why. But idk, I just feel really bad. I feel like I've lost a lot, and am still losing a lot because of this.

How often is this occurring for you? I seem to go weeks being fine and then I have a day where I can have over 7. Today I’ve had one on the hour almost every hour.

I normally have focal seizures with near constant small seizures in my left foot and hand.

Recently, my left foot is seizing more and painfully contracts downward and now I have muscle twitching on my right foot and arm. Are these signs of possibly spreading into a tonic clonic seizure?

Hello friends, I'm looking for some assistance regarding my brother's refusal to go back to the EMU.

My younger brother (m28) and his identical twin brother both have epilepsy with seizures that are non-motor, potentially focal/unknown onset seizures, that kind of sometimes look like absence seizures and sometimes like laugh attacks. We believe that the seizures are happening daily. They result in symptoms that effectively look like a combination of Tourettes and Schizophrenia with both visual and audio hallucinations. They have next to zero executive functioning, and are not entirely rational *this is important* when unmedicated for their seizures and really struggle to feed and take care of themselves, including taking their medication, bathing, etc.. It took the first brother (we'll call him L) almost ten years to get a diagnosis after his onset at age 15 after being bounced around incompetent neurologists and psychiatrists, but within the last 4 or so years the second brother (we'll call him R) has begun to display the identical symptoms and behaviours. L is now medicated and holds down a job and has begun to make friends and have a life again. R is convinced that he has schizophrenia and not epilepsy, despite his current psychiatrist and neurologist both telling him that he had epilepsy with psychiatric symptoms.

Now here's the problem. In order for R to be adequately treated for his epilepsy (which he is convinced he doesn't have) he needs to go into the Epilepsy Monitoring Clinic (EMU). Almost a year ago he went into the 13-ish bed open EMU and was there for just over a day before a woman in the bed right across from his had a massive seizure resulting in a cardiac arrest and almost died right in front of him. This traumatized him, and combined with the poor state of mind he was in/hallucinations he was having, resulted in him asking to be discharged.

Finally, one year later, after his neurologist went on a one-year leave, we have finally gotten the opportunity for him to go back in.... and he is refusing. He is adamant that he is schizophrenic and that this will not help him and that he will not be going back. He said it's a a horrible experience and he has convinced himself that he will need to be in there for two weeks for some reason and said he's not going to do it.

My parents (who are his full time caregivers and financial supporters since he cannot work) are devastated, and don't know what to do. Burnout doesn't even begin to describe the state they are in, they're getting older and they cant sustain this. I don't know what to do either. He's extremely angry with me for telling his doctor that he is not doing well (he tried to tell her in his phone appointment today that he was getting better in an attempt to avoid this, but he is absolutely not), and blames me and my parents for forcing him to do this. We are at an absolute loss for what to do. I'm frantically searching for private or at least semi-private options to see if that would be better for him (we're in Southern Ontario, Canada, not too far from Toronto) and I'm struggling to find any options. If there are private options in the USA, or Europe that can be paid for we would be open to that as well, finances are in a good place. The EMU he was in last time said they would do their best to put him in one of the three more secluded beds in the unit but there's no guarantees and also I don't know if he will even agree to that, he's currently not speaking to us. I only just convinced him to speak with a therapist and he has had two sessions, I'm hoping he will attend another one before we get a call for an open bed.

So basically, I'm looking for any kind of advice or help that will either help us talk to him about it, or private clinic options, or literally anything. Please help.

A long time ago I was diagnosed with “partial complex seizures” now called focal seizures?
Has anyone ever experienced them the way I did.

Mine were triggered by Deja vu, I would never know they happened or remember any of it , but I have been recorded. I would go blank, say weird things like “ is my mom dead”, or i would say that “I’m seeing gray people” , most times I would say “ this happened already” before throwing up and sleeping for hours, and wake up with a horrible migraine. (These lasted about a minute)

Sometimes I would just start crying hysterically and grabbing whoever was around me super tight. my parents say that I would act completely different ( kind of like I was very scared of something) . I would act like a toddler, ( very kid ish), my dad used to take me on walks or take me to play basketball until I would snap back to reality. These were also followed by vomiting and sleepiness with migraines. These would be around 5-10 minutes.
They used to make fun of me in school saying I was the girl with crazy episodes.

Has anyone’s focal seizures looked like this?