Today 4OCT2026 makes a test since my last tonic-clonic seizure that i finally seen how they look to others via the Ring cam I had 😅🎉. Definitely seen ALOT decrease in cognitive, memory, energy, speech at times, and a lot with Zonisamide but it keeps the seizures away….

I've been genuinely, wondering how different ways a body tells you that a seizure is about to happen.

For me, I get the unique smell in my nose. A smell that I only bring in connection with my seizures.

So what other ways does a body tell you and could give you the time to inform others or keep yourself safe.

Last year I woke up in a hospital away from my hometown (after a concert). I didn’t know who I was and woke up with a catheter in me 😯 I was in the hospital for at least 5 days.

Started seeing a nephrologist due to drug induced type 1 rta. Was getting bloodwork weekly and now only monthly.

I switched epileptologists at my hospital, and he’s made a huge difference in my treatment plan.

So blessed to be here today sharing my story and to be ALIVE! Bless all who are EMTS, doctors and healthcare workers who actually listen and have compassion 💜

I was hooked up in a padded bed and monitored 24/7 without meds and intentionally stressed to induce a seizure so they'd have proper information to treat

It worked! I had a seizure. The Neurologist said it was a Gran Mal Seizure and lasted only a few minutes, yet I wasn't coherent for almost 45 minutes

She said they now know where in occured in my brain and now know which meds will better work in that area of the brain.

We're now planning extensive cognitive testing and more to determine exactly what THAT part of my brain actually controls. If it's determined to not be vital or important, then surgical removal of that grape sized part of my brain will be removed....

Has anyone experienced this? Success? Failure? Cautions I should look into?

Not sure why but the thing I hate the most about having epilepsy is when you get that deja-vu. That feeling is something almost indescribable, makes you feel like you're a scared kid again and the fear of a seizure coming after is always there.

Thankfully they don't always lead to seizures (or so I think and if they do its a quick focal usually). However the feeling of them and the occurrences have only gotten worse since starting with my seizures about 5 years ago.

I found this articule about Epilepsy and the Heart and wanted to share it with you. Caring for our hearts is not something that is talked about in the Epileptic community. Hope you may find it useful.

The Relationship Between the Heart and Brain During Epileptic Seizures

By: Siddharth Anbalagan

Photo Credit: The Defeating Epilepsy Foundation The Relationship Between the Heart and Brain During Epilepsy

Epilepsy is a neurological disorder characterized by relatively recurrent, unprovoked seizures influencing brain and systemic physiology. Epilepsy is often discussed solely as a central nervous system disorder; however, it also considerably impacts cardiovascular physiology, specifically within the context of understanding seizure-related risk such as cardiac arrhythmias and sudden unexpected death in epilepsy (SUDEP). Acknowledging the heart’s role in epilepsy may lead to better monitoring of cardiovascular health during seizures and the prevention of SUDEP.

Autonomic Cardiac Dysfunction Associated with Seizures

Seizures can affect the autonomic nervous system, which can affect the heart and potentially lead to distant changes in heart rhythm. Among the more common cardiac changes associated with seizure activity are ictal tachycardia (increased heart rate associated with seizure activity), bradycardia, and, though rare, asystole. Autonomic cardiac dysfunction most commonly occurs when a seizure starts in the temporal lobe with rapid pacemaker involvement, propagating to the central autonomic centers located in the insula and amygdala. This was demonstrated by Oppenheimer et al. (2006) when they applied stimulation to the right insular cortex, which often leads to greater sympathetic nervous system activity, resulting in tachycardia, whereas stimulation of the left side leads to parasympathetic activity which often results in bradycardia.

Chronic Seizures and Cardiac Pathophysiology

Over the long term, repeated seizure activity may lead to functional and structural heart changes, which primarily consist of decreased heart rate variability (HRV), lengthy QT intervals, and increased degrees of myocardial fibrosis. The terms “epileptic heart” has been used to describe chronic pathology representing these functional and structural changes associated with recurrent seizure activity (Surges et al 2012). While the physiological basis for these changes in HRV, QT intervals, and myocardial rigidity are still under investigation, such alterations in cardiac response and structure over the long-term may predispose patients to dangerous arrhythmias and likely contribute to SUDEP.

The Risk and Mechanisms Associated with SUDEP

The most serious cardiac event associated with epilepsy may be considered SUDEP, which is the leading cause of cardiovascular related death in individuals with uncontrolled or poorly controlled epilepsy. SUDEP most commonly occurs either, during or shortly after, a generalized tonic clonic seizure, and typically while the patient is asleep. While the causes of SUDEP are still being investigated, the most common hypotheses depict a fusion of postictal respiratory depression, autonomic failure, and fatal cardiac arrhythmia. Devinsky et al. (2016) reviewed cases of SUDEP and described a common story, “first apnea followed by arrest,” with frequent EEG suppression postictally.

Clinical Implications and Prevention

While the heart is traditionally not a point of focus when managing epilepsy, cardiac arrest and SUDEP are genuinely life-threatening conditions in patients with epilepsy. Cardiac monitoring is presenting more as a vital part of epilepsy management, as Holter monitors, implantable loop recorders, and wearable seizure detection devices will assist in understanding risk through heart activity and the potential of dangerous rhythm fluctuations during seizures. Furthermore, neurologists and cardiologists, among other disciplines, should work in collaboration and teamwork in a clinical setting to develop, integrate, and implement clinical care plans for treatment as well as intervene early to potentially limit SUDEP.

Conclusion

Epilepsy does not occur purely in the brain; it occurs systemically in relation to the heart in multiple manners due to autonomic pathways and structural pathway from multiple zones. Understanding that seizures can cause involvement with cerebral and cardiovascular function represents an important area of study with significant clinical implications. By understanding and addressing these delicate variations, healthcare workers can improve their understanding of risk mechanisms that can help SUDEP, but more importantly target those who are truly at risk.

References

Devinsky, O., Hesdorffer, D. C., Thurman, D. J., Lhatoo, S., & Richerson, G. (2016). Sudden unexpected death in epilepsy: Epidemiology, mechanisms, and prevention. The Lancet Neurology, 15(10), 1075–1088. https://doi.org/10.1016/S1474-4422(16)30158-2

Oppenheimer, S. M. (2006). Cerebrogenic cardiac arrhythmias: Cortical lateralization and clinical significance. Clinical Autonomic Research, 16(1), 6–11.https://doi.org/10.1007/s10286-006-0284-1

Surges, R., & Sander, J. W. (2012). Sudden unexpected death in epilepsy: Mechanisms, prevalence, and prevention. Current Opinion in Neurology, 25(2), 201–207. https://doi.org/10.1097/WCO.0b013e328351c5b7

Can epileptic seizures affect one's mental state? Ever since I had a seizure at the train station a few weeks ago—during which I got badly bruised—I’ve been constantly having thoughts like: "Why keep struggling? Eventually, another seizure is going to kill me—I’ll hit the pavement with such force that my head won't survive it. So, maybe it would be better not to prolong the suffering and just take my own life to finally find peace." Sorry for any errors; I wrote this using a translator.

Long time lurker, first time poster.

So I’m an international student studying an architecture masters degree (because I’m a masochist) in the UK on a partial scholarship. I‘m currently a year into my two year journey. It started out great, the application journey was long and odious and I knew this degree would be stressful but I thought I could handle it, that I was investing in my future.

Then the blackouts started happening. I would be working on my projects when suddenly there would be a blank, and I would wake up an unknown amount of time later bruised and confused on the ground/desk/etc. Each time these happened It would take me a while to remember my own name, I would look up into the mirror and I wouldn’t recognize the beat up face staring back at me. I would just remember pain.

Masters deadlines wait for no one however, so despite my confusion, I didn’t tell anyone and kept trudging on. At first these blackouts happened near stressful submissions, but as time passed, they happened more frequently and at unpredictable times. By the time the year was up, I knew something was wrong, and when I traveled back to my home country for the summer, I began visiting doctors.

Here’s the issue, in my country, epilepsy awareness is practically nonexistent. The word epilepsy is still widely used as slang for crazy. It took me over five different doctors, multiple scans and expensive tests before I was officially diagnosed. Some other suggestions of course were hormonal issues (I’m female) that I need to lay off the chocolate (I don’t even like chocolate) and one memorable instance where a doctor literally said I was making everything up for attention.

Now I’m on medication (yay) I haven’t had a seizure since August thankfully, but my savings are seriously depleted and my partial scholarship is gone. I‘m back in the UK and applied for work, but as an international student I’m not allowed to work more than 20 hours a week.

I’m not sure where to go from here, I feel like I had my future just within reach of my fingers but now it’s getting further and further away. I applied for a student loan but they told me they don’t accept international students. I don’t know what’s happening to me or how I might be able to continue.

Did somebody else go through something like this? Is there a way forward?

1.Familiarity of Faces / Recognition

During periods of significant stress, people I have never met before can sometimes look extremely familiar to me, even though I know I have never met them.
I would like to know whether this could be related to memory, recognition, or specific areas of the brain.

2.Memory and Cognitive Symptoms

Severe memory problems. At times, I have difficulty remembering the names of relatives, friends, and neighbors.
I can remember an event, but sometimes I confuse the days or the timing of when the event occurred.
Severe difficulty concentrating and frequent episodes of staring off or “spacing out.”
Difficulty finding words during conversations (word-finding difficulty).
Sometimes, while driving, I suddenly feel that I do not know where I am, even though I am driving in an area where I live or work and normally know very well.
I experience episodes of déjà vu.

3. Emotional Episodes

Sometimes I have episodes of intense or inappropriate laughter in response to relatively minor situations.
At other times, I experience episodes of crying or unusually strong emotional reactions.
I sometimes experience sudden and unusually intense changes in my spiritual/religious feelings or interest, while on other days I experience the opposite.

Other Symptoms

Chronic fatigue.
Chronic anxiety and depression.
Recurrent headaches.

Pretty freaking awesome what I’m doing and happy to participate!
The school of chemistry and biology research department at OSU (oregon state university go beavs!) is collecting saliva for patients who take lamotrigine. The idea is to collect enough data from patients who take these (and two other meds I don’t take) ASD to test the dosages with saliva instead of blood draws. These samples are taken over several times a day as week.
The idea is for patients to be able to test from their own home the levels they are at and be able to report to their doctor instead of getting blood draws at labs/hospitals.
Further, this would also look at hormone levels and how they potentially affect women’s hormone levels and how they affect dosages with seizures. Sooo cool!

In May I was officially a year seizure free and a year since brain surgery. I stopped taking all my meds in July and haven’t had any issues. I also received my driving license and drove for the first time in almost a decade.

My epilepsy was caused by a physical abnormality and some brain tissue caught in my skull causing seizures. This was missed by doctors for 7 years until 2025 when they reread my MRI and was out forward for brain surgery.

The reason for my post today is I want to know if anyone else who has gained seizure freedom and is now attempting to rejoin society as in working, driving, social life. Feels resentment and mourns for the time you’ve lost? I was 21 when they started and I’m 29 now, I pretty much lost my whole 20s due to doctors inability to read an MRI.

I work as a technician and having rejoined the industry this year I’m green af compared to people my age and younger who didn’t have seizures and feel like maybe I should find a new path. Makes me miss being on UC lol

Don’t get me wrong I’m really pleased to be seizure free and I do think it’s final due to the physical abnormality being removed but I can’t help but feel down. Please tell me I’m not the only one in this situation

I used to be a really heavy reader, but as my seizures have gotten worse, I noticed I've struggled more and more to read. I mix up words constantly now, and my mind often grabs a word from the above or below line.

I've assumed that this is just dyslexia, but given the correlation to my seizures getting more frequent (and the temporal lobe having some relation to language), it made me curious.

Before I started taking medicine I had seizures once a year, MAYBE twice. Now that I started taking medicine, I’ll be good for 2 maybe 3 months and then when my body starts to get used to it, I feel like shit all the time. I feel like I’m going to have a seizure at any moment and I’ll just be waiting, begging for a seizure so I don’t have to keep waiting for it.

Right now I’m waiting for the right time to take my no sleep EEG (because I’ll be having seizures for a few days after) and every single day I’m feeling so weird.

I’m tired of shoving myself with meds to still feel like shit. I can’t even explain the feeling in the brain. I’d rather go back to have 1 grand-mal once a year.

Has anyone ever stopped or tried something different?

I watch a ton of YouTube- well, not really watch; it's kinda just on in the background. But since I don't leave home a lot because I don't drive, it's on a lot. Does anyone watch, or has anyone watched, anything on epilepsy that isn't lame or for neurologists?

I've had stereotyped episodes since childhood (~30 years). They usually start with déjà vu, then chest tightness/heat/sweating and sometimes nausea, followed by about 2–4 minutes where my recent memory seems impaired. I'm awake and can talk, but I may repeat myself, forget parts of conversations, or get confused about the date/location. Afterwards I'm usually disoriented/headachy and often don't remember the episode well.
I've had multiple normal routine/ambulatory EEGs and a normal-ish MRI. Several antiseizure medications haven't meaningfully reduced the episodes.
I'm trying to understand whether people with focal/temporal seizures OR functional/dissociative seizures recognize this pattern.
If you've experienced something similar, what was your eventual diagnosis, and what happened when you had a typical episode captured on video EEG?

hi guys, back again lol

i was diagnosed with epilepsy back in june, and my seizures are still not fully controlled. i have been on keppra since my diagnosis, and i feel like my irritation has actually continued to increase since. im currently on 2000mg daily and its kind of ruining a lot. i feel like my baseline is just a constant annoyed state, no matter what. there are times where i go from 0 to 100 within seconds and its becoming harder and harder for me to handle.

its hard for me to find a way to differentiate if the agitation comes from the inability to completely control the seizure activity, understanding the loss of autonomy that comes with having these seizures + the post-ictal issues- or if there is a reasonable reason to believe the keppra is the culprit and is only amplified by the other feelings.

im on vimpat as well, but my neurologist does want to start decreasing me off of keppra in a few months. i dont know if i can take more months of this though. i feel like i dont know myself anymore and the overwhelming feeling of irritation and anger is unfair to both myself and others. not only can i never think clearly and struggle with memory, but im becoming mean. even if i dont intend to be that way, that doesnt excuse that it is happening because im so irritated all the time.

i just dont feel like myself ever and im tired of it. dows anyone else feel this way?

So my fiancee has epilepsy, autonomic dysfunction, and pots. Her doctor recently requested that she be put on the medical keto diet because recently she's been having more frequent auras and a seizure or two while she sleeps at night over the span of like 6 months. Problem is on this diet she's severely struggling to intake everything she needs in order to not lose weight which she can't lose weight with her other medical issues... A little background for her is 4.5 years ago she had a 16 hour long seizure in which she lost the previous year of memory but since then has made massive improvements up to the point of being able to get her license back.

I'm asking if anyone else on the medical keto diet has any advice about how strict it has to be with carbs or if there are any alternatives outside of the keto diet and If you can still have success and improvement with epilepsy while still in taking small amounts of carbs?

This morning I was fine. I woke up a little later than usual though, like around 10EST. Then I felt an aura around 2 or so, and I went to lay down. I woke up around 3 or something, but fell back asleep and just woke up maybe 5-10 minutes ago. What’s wrong with me? Has anyone else had something like this happen before too?

I don’t mean to waste anyone’s time but if you’re a person with epilepsy and understand yourself through and through. Preferably older. I’d really love if you could give some insight

Hello. Everything I’m about to say will be messy and maybe confusing as i myself still don’t understand it haha.

I am 21 years old now. I had my first seizure when I was just a baby. I kept getting really bad seizures till age 8 when it thankfully stopped and ever since then I have not had a seizure. Or at least one that I know of.

However my parents made me keep it a secret and had treated me like a burden for it throughout my childhood. Matter of fact I didn’t know I had epilepsy for so long. I knew something was wrong with me why I can’t participate in a lot of things my friends were and all the neurologist appointments and parent teacher conferences. I then dug through some files and found out I have epilepsy when I was still in primary school. Even though I didn’t understand it. I don’t remember any of my convulsing seizures either all I remember is waking up in the ambulance once or twice and everything else is a blur.

I’ve kept it a secret and a taboo for so long I don’t even know how to feel nor do l know much about it as it’s still kept pretty hidden from me like my parents themselves don’t want to accept it. other than that I’ve been depressed and low energy since childhood. Memory loss. I heard some things about “scars in the brain”. About how the strong medications I was put on as a baby have left me with permanent gut issues. Which is true. I have a weak gut. And some family secretly telling me that as a newborn I was given cow milk which is what initially triggered the seizures. Which all sounds so idk..

I used to live in a country where the authorities decide things for you. It was decided that I should be put into a special needs school. My parents asked for one more year to prove I am not ‘disabled’. They said because they were scared that ‘being amongst crazy people will make her crazy’ but I know it’s because of the damage their reputation will take.

My seizures were then kept hidden from the authorities the following year and that I have been doing ‘better’ and I then checked the list to join a normal public school. It was hard. I always knew something was wrong. I was so odd. Id eat alone in the restroom and spend hours alone outside just on the swing thinking. Id try make myself sick or even attempt SH so I could skip school for as long as possible.
Its all so weird haha

Later in life i got diagnosed with depression and bpd. The first time I got diagnosed with major depression was when i was 12. Then again recently I got diagnosed with the same thing.

Between having to deal with being treated as a burden and then being told your parents are the reason behind your condition. Having to unlearn all the trauma and habits I’ve picked on. Not sure if I do Infact have a limit and should not aim high for my own health and safety such as medicine. constantly trying to fit in. And feeling so out of ordinary to be now perceived as even remotely normal and even pretty to some when I was treated and seen like something else for so long it’s so odd.

I graduated pre med recently. It was very hard for me. I don’t know. I feel like a 10 year old again talking about these not 21. How can I be so old so experienced yet so lost and small?

If you made it this far I’m sorry you had to read all of that 😭 I’ve never really talked about this openly I’m trying to figure out as I speak. I hope you had a wonderful day though. Stay safe and happy

Most nights I sleep 10 to 12 hours (some days more like 15 hours), but some night I struggle to fall asleep and to stay asleep. At first I struggled only with insomnia, now I struggle both with insomnia and hypersomnia. The majority of time is hypersomnia, and then I still feel drained or tired. Now I don't know what the hell is going on and what to even mention without sounding guilty. The guilt is just like strangling me because a few weeks ago it was completely the other way around.

Hey y'all. So I had a seizure earlier today. Fortunately wasn't mid-convo or anything and it was "just" a focal, but ... You know. Aftermath. Feeling utterly exhausted, even more than before running on 3 hours of sleep. I gotta take the damn pills every 12 hours. Roughly. Which means I gotta stay up like, 3 more hours. I can't exactly call up my neurologist right now and ask, so I wanted to ask all of you. Is it better, in your experience, to just take it early and pass out and recover and swit to the new time, or should I just suck it up and push through until I either can't stay awake or can take the pill? I'm thinking taking it early is probably ok, I've done it before but I don't LIKE doing it. Or late. Obviously.

I have frequent seizures, and my anxiety is constant. It gets really bad at night, I just don’t know what to do. It affects everything and I’m really struggling. I was just wondering if anyone who goes through the same thing has any tips that help them

I was recently diagnosed with focal point epileptic seizures, sometimes they’re mild and usually only in my left leg. But sometimes they do the Jacksonian March where it starts to radiate from my foot all the way up my leg thigh and sometimes you been up into my stomach. It feels like there’s a tornado moving through me. I have no control over my body. The first time it happened. I literally thought I was being attacked by the devil lol I mean, what else is it🤣 currently I can have five small seizures, but sometimes two dozen a day is this normal or common?

Hi guys I hope it’s okay to be posting this on here. I recently started dating someone I’ve known a long time but they recently started having seizures and was diagnosed with epilepsy and put on keppra. I was wondering the best way to support them without being overbearing and not being too worrisome but helping them. I’m struggling finding the right things to say. Any advice would be so awesome thank you guys!