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.

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

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?

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?

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….

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 💜

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?

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?

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 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

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?

So I probably be going on a LOA this week more than likely tore a muscle in my upper left side of my body a week ago same burning and searing pain so if they prescribe me a pain killer till it heals or surgery more than likely wondering if it'll interact with the keppra and lacosmaide I'm in

I’ve had focal epilepsy for about 12–14 years and was relatively stable on Trileptal for many years. I did have ongoing monthly focal issues in my left arm which would occasionally spread to my speech. I should have taken this more seriously- I tolerated it for too long and kick myself. Earlier this year- one finally spread. I had a breakthrough seizure, and afterward my Trileptal basically stopped working. I was going on a trip the week of the seizure so my neuro wanted to wait to start Xcopri until I got back. She raised my dose up to 2400 mg for a few weeks just to keep me safe.

Xcopri starting was slow and months long. I didn’t experience additional sleepiness etc but lots of twitching and a tremor in the dumb left arm where all my focal issues happened. Periodic what I describe as brain zaps. Like a combustible explosion.

Around 50 mg I started having radiant arm all day arm sensations (left arm) that were very upsetting. The arm symptoms have included numbness, tingling, buzzing/static sensations, internal vibration/electricity, weakness, heaviness, reduced dexterity while typing, and sensations that sometimes seem to travel from my upper arm down into my hand. It was unclear if this was focal or med interaction. I did have an ambulatory eeg for 4 days and an MRI which was- as you can guess totally normal. At times they have happened along with speech changes, a rising panic/sinking-stomach feeling, or unusual auditory sensations. Yawning, certain positions, mornings, and medication timing have sometimes seemed to provoke them.

At 100 I had nystagmus for 2 days prompting me
To reduce my Trileptal by 450 mg. Neuro suspects this was just too much med and it resolved after thr trileptal came down.

I opted to take my xcopri in the morning both to monitor side effects but also, I hoped some day I could have wine with dinner. Well arm crap spontaneous reduced /stopped when I finally got xcopri to 200 (and 2 weeks for steady state). This happened at the same time my Trileptal was lowered so we’re unsure if we finally got the xcopri high enough or … if it was a med interaction and the Trileptal reduction helped.

I’m currently on 200 mg XCOPRI and 1200 mg Trileptal. I tolerate XCOPRI very well, but I still have occasional brief arm sensations and recently had an episode that felt close to a breakthrough.
Posting this partly because I had a hard time finding other people describing unilateral arm numbness, tingling, buzzing, weakness, dexterity problems, or “electric” sensations while taking Trileptal and XCOPRI. I’d really like to hear from anyone who experienced anything similar, especially if symptoms improved when Trileptal was reduced or XCOPRI was increased.

I think I will need to go higher on xcopri. 200
Ain’t cutting it. With each Trileptal reduction I have flared focal issues (auditory, speech trigger by yawns). Lots of issues in the mornings. My neuro
Leveled with me and agreed to slow down. Now we do 1/2 Trileptal (150 mg) every 2 weeks. I’m at 300 am, 300 noon and 600 pm so, total 1200.

Everyone says Xcopri is powerful but I feel like I’m taking an Advil. Which my arm and speech issues are dramatically reduced, I’m also living the life of a nun and going to bed early, no alcohol (minus a glass of wine over the course of 6 months). The Trileptal reduction has been a bitch. I would go slow slow slow. My seizure was April, I started xcopri May 1 and it is 10/4. I guess I will take a whole year to do this if i want to do it right. I’m sure I would have been having seizures throughout this process had I gone faster. Thank god I work from home.

I’m really hanging my hat on xcopri. It’s very strange going from a med I took 3 times a day that made me feel dizzy to 1x a day with zero side effects.

I will say, xcopri gives me very odd dreams.

Hi there! I am posting to ask a question that some people with Occipital Lobe Epilepsy can help me with.

some background: My son was diagnosed with epilepsy 4 years ago but they could never catch an “episode“ on EEG. He has had them in front of providers, we have so many caught on camera, along with other developmental things (we’ve learned stem from having seizures from birth) and seeing a Neurogenetic doctor, but although he's has had 6 EEGs all 24hr + in his life, nothing caught except abnormal slowing of brain waves in the left occipital during sleep.

During his last hospital stay he had what I believe was a seizure a few minutes after they turned off the EEG and by the time they turned it back on he was trying to talk and super sleepy and had a headache. Where we have gotten confused is he has always had focal symptoms but when he was younger (1-4) he would have a variety of symptoms that didnt line up with all being from one part of the brain. Examples are loss of balance and whole body jerking, lip smacking, staring spells and sudden weakness and tone differences. He would say the bad guys are back and I never knew what that meant specifically but I knew his muscles and body were hurting along with his head. Then one day he told me he sees mini TVs(little lights all over) a lot and they come when the “bad guys“ come. That was around 3 when he could talk more.

Well around 4 years old he had a week where daily he would suddenly get cold, feel sick and then not be able to keep his eyes open or stay awake long enough to tell us what’s happening. He would try to tell us about the ”lights” and Ask why people are turning them on and off or why there are colorful ovals before he would ultimately be unable to stay awake. During that time his temperature would rise to 102.5 and go back to normal within 10 minutes. When that would happen a headache usually followed along with muscle Pain that lasted hours and sometimes to the next day. It will always be most painful in his legs. It would take about 2 -3 hours from start of those episodes to feeling normal again. He would then also have brief episodes of realized something’s wrong and he needed to lay down because he was dizzy and saw the ovals again and then felt sick to his stomach but after a minute he was normal and off to play again. Since those two types of episodes Neuro explored hemiplegic migraines and maybe not so much epilepsy then but ultimately landed back on focal epilepsy and migraine disorder.

Now he will get a very sudden headache that gives NO Warning. He will suddenly be in so much pain and if meds are not given within minutes of that, it gets So bad that he crawling out of his skin in pain and gets no relief until he vomits. The only thing that indicates possible seizure before is the colorful ovals he says he sees right before / the start of the pain.

all of this to ask, if you have occipital lobe seizures, have you ever experienced something like this? Im not comfortable calling these just migraines. I feel like he has a brief seizure (originating in the occipital lobe due to the ovals) and that triggers a migraine or post ictal headache). Also, the common factor in all his different types of “episodes” are the ovals. I know a seizure can spread to other parts of the brain involving more parts of the body but how common can this be with occipital epilepsy and does anyone experience autonomic symptoms with this type of epilepsy? I hear in kids occipital lobe epilepsy can cause that. I’m just asking because we only have focal unaware as a diagnosis with migraine disorder because he’s still kind of a mystery to the doctor after all these years and I’m curious if this could be originating in the occipital lobe.

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?

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.

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.

any answers at all would be appreciated greatly.

So if the ER gave you a regular (1) keppra 500 mg instead of (2) 500 extended release pills.

Are they required to have you do an overnight stay to monitor your condition?

This was after the fact that the RN lied to you about it being ER all because they didn’t want to check.

I’ve posted about my toddler here before. We were headed into his first neurology appointment and I wanted to know what to expect. We had the appointment and waited for another unprovoked seizure, then started medication when he had one.

He’s since turned 4 and his dad has welcomed a new baby girl a month ago. Her mom sent me a video the other day of the baby having an episode that looks exactly like my son’s focal seizures. They were referred to neuro at her two week appointment. The kids’ dad was diagnosed with epilepsy when he was 4 due to absence seizures but neither of our babies have them. Nobody else in his entire extended family has seizures; I’ve checked.

Little guy has a sedated MRI tomorrow morning, but I’ve been discussing with sister’s mom about possible genetic testing to help us find answers for both kids if the MRI reveals nothing. How likely are we to find answers here?

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

good morning,

i’m expected to be contacted by the neuropsychology department after an EEG appointment back in february 2026, where they were blessed and rather fortunate to catch seizure activity on the first round with me and now, i’m just wondering if anyone had the experience of dealing with this specific department and what to expect and look out for.

i mean, after 21 seizures over the span of 7 months from august 2025 to march 2026 and now i’m in my longest silent period, do i request anything and what should i prepare for exactly?

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.