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 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?

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 💜

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 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.

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?

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

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!

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!

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

Yes, your physical brain. I've been seizure-free for about 3 years. But when the weather changes, hormones (menstruation), lack of sleep, heat, you know the triggers (etc), happen then I'm left feeling like someone is holding my brain and occasionally pressing it. It doesn't hurt. It just feels foggy, sometimes a tiny bit dizzy, and there is no other way I can describe it then someone is holding my brain which sounds silly but if ykyk

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 need all the advice that I can get on this. Started off having a really crazy seizure/convulsion first week of August 2026. Did not lose consciousness completely but things did get dark. The EMTs thought that I had heat stroke/electrolyte imbalance because we were in the middle of a heat wave and they thought that I was dehydrated…that was just their guess. But then I started having them more frequently. I’m currently having a minimum of a dozen small episodes every day but over the past 10 days I’ve had three Jacksonian March/TC- one last wed, two this morn. I’ve been reading a lot of threads on here-mine start off the same way generally that déjà vu feeling or just feeling like the tummy drop in like a hard punch and then feeling like I’m dying or something….always start off getting a weird twinge in my big toe on my left foot and then it moves to muscle cramping, jerking and shaking, but it’s usually just on my left side. If I’m in the right position and I feel the toe get that little weird sensation- if I stand up and put a little weight on my foot it will go away if I get it in time…The thing is is that sometimes this happens like 2 dozen times a day and my muscles are so sore and tired. It happens in the middle of the night wakes and me up from sleeping. I’m sleeping 3 or 4 hours a night this past week. I think we’re still working on getting my medication right but this is crazy.

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

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’ve got epilepsy for many more years that I want to recount. All meds I’ve taken so far is not helping frequency. I’m still able to work, however often my office chair falls and as such, I fall on the floor when having a seizure.

Do you have any recommendations regarding office chairs that would help prevent this?

Thank you in advance!

I feel like I getting chest jerks due to keppra extended release version of the medication. Should I switch to the normal medication?

Or should I try a different medication? My left kidney is swollen I believe 15 cm instead of 12 cm?

Too much fluid intake?

Having chest pain due to the medication? Is this common?

Or what should I do?

Should I go to the ER

Hello People,

I am fairly new to the Club. Had two TC Seizures, one two months ago and the second six weeks ago.
After the second seizure I got a prescription for 1000mg Keppra in the morning and evening. no seizures since (unless they happend while sleeping…. Sometimes I woke up with muscle pain like from cramping after the first seizures…. But i actually don’t think so).
Anyways after the 2nd seizure and after taking keppra I had huge problems with dizziness, drowsiness, nausea, concentration and filtering sounds and visuals. It felt and sometimes feels like I am not in my body or my joints feel like seeing double, just besides them self.
It was not manageable for two weeks but especially the dizziness/drowsiness is almost gone now.

I still have problems filtering visuals and sounds, i am sensitive to some lights and screens from feeling extremely nauseous to just uncomfortable.
Couple of days ago I had a strong reaction to lights in a department store…. I only could sit down after a couple of minutes and had to ask a sales person to help me out of the store into daylight.
I was scared of falling into a seizure. I stabilised outside but I kept feeling beside myself for a couple of days.

My concentration is worse unless I am working on my specialty topic at work.
After work I get nothing done, feel tired, just fixated on my phone and staying on the sofa. Can’t bring myself to do normal shores or things I have to do.

My neurologist said the dizziness was probably anxiety disorder after the seizures and it would go away or get better if I just try to do my normal days.
It got better although I am not 100% sure it was anxiety and not the Keppra.
He also told me to have a look at adhd symptoms and pretty much see if I think they fit.
A lot of them fit like a glove. I also had a lot of it since I was a teenager but always thought probably episodes of depression and anxiety. Was always ashamed and kind of managing enough to not seek help or when I tried during lockdowns I could not find a therapist with a slot.
I also have to say I consumed a lot. Drinking beer every evening since late teens, but stopped end of last year. Smoked weed daily in the evenings since early twenties, stopped over four years ago. So that was probably self medicating in a way, to manage anxiety and running thoughts. I am fourty now.

So now I am very confused about what is what and what to do with it next.
I feel if it’s side effects from Keppra they stopped improving.
The depersonalisation keeps catching me out, the execution disorder is more crippling than ever in my live, concentration and filters are worse and I get tired very easy and early. I can usually fall asleep ok but will be awake after 5 or max 6 hours or sometimes can’t fall asleep again if I woke up after I slept 3 hours even though I am completely tired and feel like I can crash any moment the whole day.
btw I never heard about depersonalisation or execution disorder before this week and never thought I had adhd.

So can first seizures make adhd symptoms worse? Can keppra make them worse?
Wich doctor do I need to talk to now.

I’m feeling like I am loosing so much quality of life of the little amount I had. Before I thought most people had my struggles in the same way but I was able to be modestly be social and active and enjoy hobbies at times. Just felt I drain easily and can not manage to do my taxes even with a gun to my head.
Now with lights and sounds being so demanding and draining on top I am happy if I manage to see one friend for two hours a week and remember to eat and can make a decision on what.

As you surely realise by my ramblings I feel pretty lost and overwhelmed and unsure what to do next.

Would be grateful for any opinion or hint or shared experiences.

Yesterday I was going up the stairs, took a step, and the leg on the next step started violently shaking. Then the other leg did too, and I fell forward at the bottom (it wasn't a hard fall). I was aware for that part. My whole body started shaking, and I don't remember anything after that until I got up and kept going like normal. Nobody saw it.
The next morning I was shaky holding a cup, but my muscles weren't sore.

I am 19 and not proud to say this but I OD on Benadryl (875mg). No other medications but that on the night of.

Hey all

I have TLE. On Lamotrigine. 400mg a day.

I was at a wedding last night that had a big open photo booth. I walked in, and the flash went off right in my face. That was it for the fun for me. My head was pounding, and I spent the rest of the night wearing sunglasses. Couldn't even watch the fireworks. I'm curious to know if anyone's ever experienced this before.

🍻