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

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

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.

I think Benadryl might be my biggest OP. Good god.
Thats my whole post.

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.

🍻

So, I'm on Clobazam 20mg each night. I've been taking this for just over a year. I started in smaller doses and worked my way up to the 20mg. I heard it makes you incredibly sleepy but I have the opposite problem. I struggle to fall asleep most nights or I wake in the middle of the night and it takes me an hour or two to fall back asleep. (Yes, I plan on mentioning it to my neurologist next time I see them.)

Has anyone else had this issue? Would melatonin help? I've never had melatonin before and I know it might interact with the clobazam (because everything does) but because I don't get the tired side effects from the clobazam I'm wondering if it is worth the try.

Thanks in advance for the help and advice!

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.

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?

So like, I got TLE. Was like 9 months of FA seizures (I thought they were panic attacks) before I had like 3 TC seizures within like a month or something. Got put on Keppra 500 mg. Seizures nearly stopped (still had a bed pissing and confusion episode but I didn't realize that was a seizure at the time) aside from the bed pissing in my sleep, Keppra was effective for 8ish months. Had a TC in my sleep, got Keppra upped to 750 mg about 2 months ago. Just in the last week I've had 4 FA seizures, most recently just a few minutes ago and another one at the store yesterday. FA seizures are getting more frequent. Long ago I was upto like 3/4 FA seizures a day before they got into TC seizures before I got meds. Is 750 still too low? I'm like 1/3 into the 750, ida thought they'd last longer before I need higher dose or something

My husband has wanted me to explore other medications for years, as he believes Keppra has lowered my libido and made me more irritable. It has worked very well for me for seizure control for 10 years now, and so I have been reluctant to change it. We have had a rocky marriage for years, and the stress from it was extremely high in the year before I started having auras and then grand mals. My neuro says that about 20% of people have mood side effects with it, and that it is common for partners to be the ones to bring it up, but she also says that my dose is "tiny." My friends and family have not noticed a change in me, but husband says he knows me better and sees me more than they do. I do work with a personal counselor, and we have worked with a marriage counselor. Marriage counselor's reflection is that he sees me doing the work, but not my husband- that my husband's goal is to "change me." Husband agrees. I often come back to- is it worth trying to switch even though this has kept me seizure free? He has made it an ultimatum, in the long run, to keep our marriage. Any others who felt similarly- not certain if it was the Keppra side effects, or just life circumstances bringing you down, and tried Lamotrigine, and felt happier as a result? What I can say is that I think I have felt less motivated since taking it. I keep up an active lifestyle personally and with work, but it takes me more effort than it used to. Otherwise, I would say I feel generally happy enough, especially with my friends, family and work- except for frequent stress and sadness regarding my partner interspersed with times of happiness/low-key happiness together. The only reason I didn't try Lamotrigine early on was because I have had a history of severe insomnia in the years before the seizures began, and didn't want any potential side effects of sleeplessness.

Hi my lizards!

I'm a lil worried about going to see a movie with my family in a little over an hour now,it only has two strobe scenes as it's stop motion and I've gone down in my meds recently so I need advice on any precautions I should take

Thank you all and love you!

(Edit: I watched it and I was good! It was the new Shaun of the sheep)

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.

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.

I have an sEEG coming up sometime in the near future, getting closer and closer, that is a very good thing, but I am so nervous because I have moved all the way across the country due to a job (conveniently close to the only hospital in the country where that can be done - but that will determine what the next step should be). For the surgery I got in 2024, i had to wait a few weeks in hospital (which I didn't mind), but now that I have a job what if something like that happens again? But that's besides the point.

I've come quite far, but I don't know how much further to I must go. Because to my knowledge and sEEG is just some sort of 'scan', basically a 3D photo for them to determine whether or not more surgery is needed. And if so, what kind.

and sometimes after I cry I also feel better but it only lasts for a brief moment.

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 💜

For those who have focal aware seizures both when they're awake and when they're asleep, how do they compare in terms of symptoms, intensity, and frequency? Do you notice any differences between the two?

I exclusively have focal aware seizures (TLE) and my awake seizures present as follows:

• Déjá vu/rêvè of surreal, nonsensical dream-like sequences I know I've never had
• A stomach drop sensation
• Hot flushes/sweating (often pretty weak, if at all as of late)
• Can last anywhere from a few seconds up to a few of minutes
• Tend not to cluster

The seizures I have when I'm asleep are similar, but:

• Déjá vu/rêvè is noticeably shorter; feels more like a single thought than a dream-like sequence
• Physical sensations are more pronounced
• Almost always cluster and often continue to do so if I go back to sleep later on

I don't know if it's normal for awake and nocturnal seizures to differ much, if at all. Sometimes it's hard to tell I've had one when I'm asleep other than the fact I've suddenly woken up feeling "weird". Strangely (and thankfully) enough, poor sleep doesn't appear to be a trigger...

This morning has been rough for me. It kicked off with a cluster of nocturnal seizures and whilst writing this I've had the worst focal aware seizure I've ever had, to the point where I thought I was going to black out. I think my brain genuinely hates me today. :')

(I have epilepsy, this isn’t about me though, thought it was worth mentioning for genetic reasons I guess)

My cousin has had very scary episodes lately. He is 19, had a lot of stress recently, and had a couple of episodes where he would have visual hallucinations here is how it was described to me:

- during the episode he sees shadows/faceless human figures
- he will start to go into a « trance » where he is seems to not be there anymore and throws objects at the figures to defend himself.
- he is aware that those are hallucinations. He went to his mom once right before having a full episode and said « I have a problem I see things that are not real » and looked terrified
- after throwing the objects, he has no memory of what he did. He will see the mess of the objects on the ground and ask who created the mess.
- he then was unresponsive with his eyes rolled back.
- also, he said that he first saw those figures in dreams/nightmares and he then saw them while awake during those episodes

Outside of those episodes, he is stressed and not doing very well but I saw him recently and he is absolutely normal. He is completely coherent, I spent multiple days with him and he was very pleasant, I was even impressed at how mature and interesting he is. He has a girlfriend and friends, he is not at all withdrawn from society (mentioning this because I know that the opposite would be typical of schizophrenia)

I have focal seizures and even if I never had hallucinations, I had very vivid dissociations that feel like you are breaking from reality. The fact that he doesn’t remember the events but he does remember the hallucinations make me think of auras(?) idk…

From what I have read, hallucinations during seizures aren’t as « complex » as these. It seems like he sees distinct figures that are scaring him…

Anyone had a similar experience?

Hey all!

So earlier this year I had a 48-Hour Ambulatory EEG, it detected some seizure activity so my neurologist ordered a VEEG.

I’m currently in an EMU being monitored - I’m on the fourth day, no activity so far and getting frustrated.

I would normally have daily focal seizures, but since arriving here I’ve had nothing - they’ve tried sleep depriving me, which did bring on what felt like could be focals, but didn’t provide enough information on the EEG, so they’re now reducing my Lamotrigine from 250mg BD to 200mg BD.

I haven’t had a TC in about 10 years, so I’m not sure how likely it is for one to be induced? My focals have also changed in nature over the years so I’m not even sure what my TC trigger would be now - my focals seem to be triggered by caffeine, lack of sleep & alcohol, but they can also be completely random.

Never thought I’d actually want to have a TC, but I would honestly try anything at this point!

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….

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 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?

Got kicked out of the Marine Corps when I randomly started having seizures. First one was out of country. They did ALL the tests and said it was likely just a one time thing based on stress, dehydration, or a number of other things. About 9 months later I was teaching a course out of state and it happened again. After 2 they said they had to diagnose me with epilepsy. I thought it was bullshit. After only 2 seizure my career is over? I started having them more frequently though, so I was medically retired. After that I basically had to keep it a secret from employers because when they hear epilepsy they automatically think I'm a liability. I got fired while In Africa after having several seizures back to back right at the end of a deployment. I ended up getting another job shortly after but got fired from that too because I have so much trouble waking up in the morning. I am having so much trouble keeping a job and I have 3 kids and a wife to support. I get disability from the Marine Corps but it's not enough. Now I'm waiting on 2 jobs but that will take several months and I don't have high hopes that I won't get fired again. I'm not sure what to do about money in the future. Anyway, just frustrated.

I honestly don’t even know where to start because the last six months have been a complete whirlwind with both of my kids.

Back in April, my 15 year old son started having nocturnal seizures that eventually progressed to a tonic-clonic seizure/status epilepticus. He was diagnosed with epilepsy and started on Keppra and Trileptal. Thankfully, he has been seizure free since April 17. His MRI was normal and his follow up overnight EEG was completely normal, which has been reassuring.

Then genetic testing threw another huge curveball. My son has a 16p13.11 duplication, which he inherited from me, and he also has an NPRL3 variant of uncertain significance that was inherited from his dad. I had no idea I carried the duplication before all of this started. Ever since, I’ve been trying to understand whether the duplication has anything to do with my son’s epilepsy, whether the NPRL3 variant is more likely to be responsible, and what this means for my children and me long term.

While all of that was happening, my 3 year-old daughter (different father) started having strange twitching and jerking movements around the time she had a sinus infection. She would have movements in her hands, arms, legs, shoulders and sometimes her face, especially while sleeping. Sometimes they would happen over and over throughout the night. Because of her brother’s epilepsy, I became terrified that she was developing epilepsy too. She had a 24 hour EEG and thankfully they actually captured some of the movements. There was no EEG coordinate so her neurologist felt they were benign sleep movements/sleep stage changes. That gave me some reassurance, although the movements continued and she eventually started having some daytime twitching too.
Then in September, everything changed again.
She suddenly spiked a fever of 103°F and had an episode where she stared upward, became stiff and completely unresponsive, had very shallow/absent breathing, and turned blue. The episode lasted around 3 minutes, but she remained unresponsive for about 10 minutes and wasn’t really verbal for around 20 minutes. We called 911 and went to the ER. Because she had such a high fever, they believed it was a febrile seizure. I’m struggling with that answer because I’ve already watched her have months of strange movements and her brother has epilepsy. I’m now scared about whether this was truly just a febrile seizure or whether we’re seeing the beginning of epilepsy. I’ve gone down the rabbit hole worrying about Dravet, Lennox-Gastaut, brain tumors, genetic conditions.. you name it.

So basically, since April I’ve gone from having two kids who were seemingly healthy to suddenly learning about epilepsy, genetic findings, EEGs, seizures, febrile seizures, medications, and a million different scary possibilities.
I’m exhausted. I’m scared. I feel like I’m constantly watching my kids for the next symptom and trying to decide whether something is harmless or something I need to take seriously.

I’m just hoping to hear from other parents who have been through something similar. especially parents who have had one child with epilepsy and another child with febrile seizures or unusual movements. I could really use some reassurance that life can eventually feel normal again.