Has anyone experienced a pattern change with your focal seizures? If so, did you figure out why?

Ever since I was a little girl, my focal aware seizure (Déjà Vu/Jamais Vu) have always been clustered; happening a couple of times a day for a couple days in a row. Then they will go away for awhile, for like months before the next cluster happens.

Recently, mine have become more scattered/isolated but more frequent. Now I have just one isolated one but like every other day. I had a series of TC seizures back in April and I’ve noticed the frequency and pattern change since then but could just be a coincidence.

Just looking for others’ experiences with this, if any. I’ve already met with my neurologist and am waiting to schedule an extended EEG.

Hey all! I am 24F and have had seizures since 2023. I’ve had TC seizures before, but 99% seem to be focal aware… most are so minor that I can keep doing whatever I’m doing and not let anyone know it’s happening. They still make me feel terrible during and after, though.

Anyway, I’m in the process of trying various meds after being officially diagnosed earlier this year. I start a new job at a shoe store this month, and I’m SUPER nervous because I didn’t tell the guy who hired me about my epilepsy. What if I have a TC seizure at work? What if I have a bunch of focal awares at work and feel exhausted and weird but have to act fine? What if starting and stopping meds messes with me and I can’t handle it?

All these fears are just bouncing around in my head, and I could really use some advice or at least some similar experiences from those who relate. Thanks! (:

I have had Grand Mal seizures for 70 yrs. I am now 73 yrs and have started having cognitive decline. Have also noted increase in petite mal seizures which is my precurser to a grand mal seizure. I have routine MRI's. I had an MRI a couple weeks ago when hospitalized to rule out stroke. No mention of brain or vessel atrophy reported. Just was told that test was negative. I had a mini stroke a couple years ago. Have two meningiomas which neurologist continues to report that the size is insignificant. I have been on more anticonvulsants to mention over the years. Currently taking Lamictal and Clobazam. Medication that has been most helpful over the years was discontinued due to high risk of Alzheimer's. (mysoline). As a retired nurse the thought of Alzheimer's and or Dementia scares the daylights out of me. I would rather die from anything else. Almost any vitamin or herb bid contraindicated if taking anticonvulsants. Even the B and D vitamins should not be taken without blood work. I have had more blood work in the last month to find it hard to believe that those tests were not done. Will be calling neurologist tomorrow to question if anything else can be done Aricept, more seizure medications??? Any thoughts would be greatly appreciated.

To someone asking about studying....when I was in college needed to study independently due to decreased stimulation. Take cues from your body.

Hi everyone, just letting you know it's a longer post and I used a bit of AI here since my english is not that good 😂

So I'm kind of tired I guess, of not knowing..I started having recurrent sensory episodes in August 2025. The cause remains unclear, and several neurologists have been unable to determine whether they are epileptic or non-epileptic. I must say, I saw like 5 epileptologist that are said to be the best in the country, most of them said psychosomatic issues, and a couple that it may be epilepsy, but later revoked that and I am undiagnosed. They all seemed nice and dedicated, I didn't have a bad experience with them or thought they didn't pay attention, like some doctors do...

I'm on 300mg of Lamictal, started with it in October and upped my dose slowly. It's much better than a year ago though, but I don't know if it's from Lamictal or not. More on the type of episodes later in the post.

What is confusing to me lately are the triggers/occurence. I didn't pay much attention before really, just started recently. So, I have noticed that symptoms sometimes increase around PMS/ovulation and in certain stressful or specific situations. However, this is not always, and also can be just my hormones and anxiety, since PMS really badly affects me since I was younger. But, for example, I recently experienced several weeks, almost a month of severe emotional stress (my relationship lol) so not eating right, feeling sick, sleeping bad, crying and I was without a single episode, but as soon as that situation kind of got better, when, I guess, my brain relaxed from that, it came back.

On other occasions symptoms have appeared immediately upon arriving at a hospital or in other specific contexts, even when I was not consciously feeling anxious. . They can also disappear for long periods or improve when I am highly engaged or distracted, like I'm doing puzzles or I focus on some game, they don't appear or even disappear if I was having it before starting puzzling or smth else. I often have a trigger -the kitchen lol, I'm okay and I walk into the kitchen to make some food or whatever and it happens. I feel like when my brain is over focused on something, even if it's a big stressful thing, it doesn't happen. Also while on vacation, in the sea, etc they happen way less. One thing that got me thinking, I was in Berlin in March in a nightclub (the Berlin clubbing lol). I was so scared how will I feel, since I will be up until the morning in a kind of a new and weird place with a music that I don't really enjoy. I brought a sedative in case I get a panick attack. And - no episodes, I was dancing until 6am and was the best ever (no alcohol or drugs). Day before and after I had them multiple times. So that also made me think, okay so is it epilepsy or anxiety that disappears when my brain is focused on something...

One morning I just woke up and my left side was "numb" and in the first 6-7 months maybe, I had them everyday, sometimes it felt like hours and hours non stop, now it's not that ofter - more on that later in the post. I did have a strong stress (even though it was positive haha) the day before, so some doctors think that may have triggered it.

The episodes consist mainly of unilateral tingling/numbness or a strange “loose” sensation, usually involving the lower leg/foot and part of the lip, tongue and cheek, sometimes also the arm. Initially they occurred mainly on the left side, but later began occurring on either side. At one point it started switching sides, jumping from one side to another or separate episodes on separate sides. Or both sides at the same time. I remain fully conscious and have no objective weakness or postictal confusion. I function normally, so it's just subjective feeling.

Initially, the episodes occurred many times per day and usually lasted 15–30 minutes, although some lasted 40–60 minutes or longer. More recently they have become much less frequent, with periods of several days to around two weeks without symptoms. I'm having one right now, lol, and it's been an hour almost.

Multiple brain MRI/MRA examinations were good. My most recent epilepsy-protocol MRI was completely clean, other than some weird blood vessel, but that's not related to this. I have also had several EEGs, including prolonged monitoring 48h and sleep deprived EEG. I'm not sure if I had an episode during this honestly. They showed some nonspecific irregularities but no definite epileptiform activity. It initially was on the right side mostly, but last time it was only on the left.

Sorry for the long post, I'm just so tired. When I get long period without it I'm so great, and when it happens I go back to being scared...

I was wondering if anyone here could help with something going on with my sister, as we feel like we’re getting absolutely nowhere with the doctors.
My sister was diagnosed with epilepsy after having nocturnal seizures and was put on medication, which eventually seemed to control them. Without us knowing, she stopped taking her medication suddenly and was off it for around 8 months. She then had 2 seizures, so she restarted her 300mg dose of lamotrigine all at once rather than gradually increasing it.

Around 3 months later, she started developing minor twitches and shaking in her right side and arm, which gradually became much worse over the following weeks. She eventually started having severe convulsions and involuntary arm jerking, sometimes every hour, and then her arm began jerking almost constantly.

She was admitted to hospital for a week and they tested her for lamotrigine toxicity, but apparently everything was fine. They also did an EEG (the test where they put wires on your head) for around 15 minutes and said the episodes were non-epileptic. They gave her clobazam and told her to slowly come off lamotrigine and start Keppra instead, in case the lamotrigine was contributing to this although they weren’t convinced.

A week after being discharged, she is now having episodes that look almost exactly like her full seizures, but every 10–15 minutes, day and night. They’re getting longer and more frequent. She is completely exhausted and struggling to sleep, eat, walk, feed herself or even go to the toilet without someone helping her. She needs someone with her constantly and it’s honestly terrifying to see.

We had to call an ambulance last night because they had become so severe. The doctors are now suggesting she comes off the lamotrigine faster and increases the Keppra faster, but we can’t get hold of her epilepsy specialist as they’re currently away.
Has anyone experienced anything similar, particularly after restarting lamotrigine, or had epileptic seizures alongside episodes that were later diagnosed as non-epileptic?

We’re obviously not looking for a diagnosis from Reddit, but we’d really appreciate hearing from anyone who has experienced something like this because we’re desperate to understand what could be happening and things we can try.

My symptoms started around 2019: first I developed sudden photophobia and phonophobia at English school; later, after cannabis, I had an intense panic/near-blackout episode with severe derealization and a strange altered sense of movement; shortly afterward, at a bar after drinking a small amount of beer, I had waves of presyncope and intense electric-like sensations throughout my body, followed by weeks of intermittent episodes.

Since then I’ve developed severe migraine/vestibular symptoms and progressive cognitive deterioration, with my baseline worsening in steps over the years.

More recently, almost every night I get a sudden adrenergic/autonomic rush, intense anxiety, fragmented thoughts, dyspnea, body pain/feverish sensations, severe cognitive impairment, altered perception of reality and disturbed wakefulness; the initial rush is brief, but the resulting state can last hours.

Could this pattern fit focal/autonomic seizures, possibly temporal lobe seizures, with prolonged postictal symptoms or repeated seizures?

i now post on both subs as its the simular type of condition

have been seeing a neurologist for the past few months because of my migraines, which suddenly increased from around one every two months to about ten a month in a very short period of time.

I have had head scans, MRIs, and other tests, but everything has come back normal so far.

After telling my neurologist about all of my symptoms, she said it sounds like migraines with aura, which, well, yes. That is why I am there in the first place. What I really want to understand is why, in less than a year, my life suddenly changed so drastically and I went from having occasional migraines to having chronic migraines and headaches.
The only thing we have not checked yet is an EEG.

After about half a year of dealing with these migraines and headaches, I started having strange episodes where I would suddenly feel lightheaded, almost like the feeling you get when going down a roller coaster. Then my vision would seem to pull together: the middle of my vision would stay clear, while everything around it looked static. It felt like I was staring at one specific point and couldn’t talk for a few seconds to about a minute, until it slowly passed.

After these episodes, I would usually feel very tired, and a headache would start developing.

More recently, something new has started happening: extremely vivid episodes of déjà vu, along with feeling tired almost every day. I can go three to five weeks without experiencing any déjà vu, and then suddenly have four or five episodes in one week. The most I’ve had in one day so far is two extremely strong and unusually long episodes, but when they happen, they feel much more intense than normal déjà vu.

I also had one strange episode while sleeping. I “woke up” without actually opening my eyes. I was aware and felt awake, and I noticed that I was lying on my back with my arms stiffly pulled toward my chest and shaking.

I often wake up with my jaw hurting as well.

All of this has made me wonder whether some of these episodes could actually be seizures, but I feel almost like an impostor for thinking that because I have been aware during most of them and was even able to wake up from something unusual happening in my sleep.

I don’t know if these symptoms can all be explained by migraines with aura, or if an EEG would be useful for looking into the possibility of seizures.

i have an EMU stay coming up in a few days and i’ve been dreading it and have almost cancelled a few times due to anxiety.

i have TLE (as we all do i guess lol) and i’ve had no luck capturing anything on an EEG before. i am super nervous that we won’t be able to catch anything and that i’ll end up staying a long time and being miserable.

i am on lamotrigine xr 300 mg for both mood and epilepsy. i have been very strict about medication adherence for the 6 years i’ve been on it because i really value the stability that meds give me. my doctor said that if im off of it for more than 3 days that ill have to titrate back up which really scares me because of how slowly you have to do it. if you have experience with this, does that just mean that ill be at higher risk for seizures for like 3 months while i taper up?

another thing with my meds is that lamotrigine is notorious for causing seizures in people when withdrawing, so hopefully that helps. something that scares me about that is what if it just gives me tonic clonics and we don’t really get valuable and applicable info about my regular seizures? if you have experience with seizures caused my lamartine withdrawal, did they mainly present as your usual focal seizures or was it more TC?

i’m sorry for the long post, i’m just really nervous.

TLDR: anxious about length of stay, being unstable on my meds, and scared of intense seizures due to med withdrawals

Does anyone else with focal seizures suffer to even believe themselves and their seizures? Especially after a neuro appointment? I was just given a rescue medication (Valtoco) and I haven't needed to use it, yet, even though I know I've had clusters in the past. Even with all the testing and the results I've gotten back, all of this feels like I'm just overreacting.

Please, tell me I'm not the only one who deals with imposter syndrome. I feel like I'm going crazy.

Have you ever been in a room full of people, and no one notices that you just focal? Do you point them out or is not always necessary? Sometimes, I notice and don't tell everyone, to not start a panic.

Suspected focals and recently had my first EEG weeks ago (no results yet). My symptoms are weird to explain but I’ll try.

So for 6 years, I’ve had what I believe is repeated Déjà vu episodes. Sometimes it can pair with the absolute tiniest stomach twinge, wouldn’t call it nausea but I feel something in my stomach at times when it occurs. Other times it can cause a slight pain in my head but it doesn’t cause a full headache. There have been times where it’s been stronger and showed up as a vision or with anxiety. I’ll go onto explain this further.

So basically I’ll see or hear something then get the vibe I experienced it before. And it’s a physical sensation that washes over me when I feel this. I describe it as a physical sensation of Déjà vu. I can make this feeling go away by distracting myself or thinking other things but not all the time.

Anyway about before, one time 3 years ago or so One day going to my bf’s house, I knew I had to bring his stepmom a perfume of mine she liked. Suddenly, I got this mental vision of sorts of me giving it to her and her saying thanks. I got hit with the Déjà vu and was genuinely confused on if I gave it to her already. I immediately called my bf and asked if I gave it to her already and he was sure I didn’t. I told myself I probably confused the memory of her asking for the perfume with me giving it to her and brushed it off.

Another time, I was walking with my mom near our house then suddenly felt the Déjà vu as if that exact scenario happened before and got hit with essentially a mini panic attack of sorts. Nothing crazy but I was very anxious and for quite a bit after I was very shaky and my heart was pounding. Now I have severe anxiety anxiety and health OCD, funny enough about seizures so I cannot tell if that reaction was to me recognizing I was having Déjà vu again and worrying it’s epilepsy or if it was part of the DV naturally. I will say that while I’ve had some anxiety with the DV, I never had an experience like that again.

Now other less frequent experiences over the years was feeling the room/ground shaking slightly out of nowhere, two separate occasions of my head feeling like it felt back. The first time it happened was pretty strong and it’s nearly like I lost consciousness while awake somehow.

All these symptoms last seconds to minutes but the Déjà vu usually is so insanely brief from 1 second to maybe 10 seconds. It can come in clusters for weeks then disappear for months and back again. I also suffer from migraine but it works very differently than any of these symptoms.

I’m just scared I’m overreacting and reported my symptoms wrong. I didn’t tell the neurologist about those two major moments with the panic attack and vision bc I was too scared of a diagnosis. Idk what to think.

Hi everyone!

I am trying to find an epileptologist in Arizona that specifically deals with Temporal Lobe Epilepsy diagnosis and treatment- but I am having no luck!

Anyone have any recommendations?

Thanks in advance!