5 years of Seizures/Epilepsy...

Since I started having them, probably have had like 100-150, Grand Mals, All types....

I wake up a lot in the Hospital Emergency Rooms, with out any memory of the prior days, or what I did, have done, dates, names, I can't remember alot.

When my memory does come back , it's slow and and chopped up.

At this point, not being able to tell , the difference between a memory or a vivid Deju Vu, ...

Do I have Brain Damage?

I've been in multiple Comas, some lasting as long as 10 days or more...

I've fallen, and hit my head multiple times, pretty hard on cement, fallen off of ladders at work, hit my head. Blocking out, isn't something new, to me at all, happens a lot. My memory and anger is bad, guys, bad bad bad, to the point, I can't even hold down a basic part time job. I can't sleep good, or regular, my depokte medication, makes my stomach hurt bad, to the point I'm having digestive issues, but I can't take the keppra, makes me suicidal.

Seems like I can't live a regular life now at all....

Hi everyone- I posted yesterday from my hospital in an ativan/keppra/post-ictal stupor.

I has a breakthrough seizure on Monday morning at work as I worked my Sunday overnight shift. I work in a hospital so I guess I was in the right place. I kept ignoring some mild dizziness/head floating feeling for a few days and on Sunday it got bit worse. I was going to a pt's room and decided to turn around an sit behind the nurses because I didn't feel well. All i remember was sitting down and passing out, limp and falling out of the chair. Shortly after I starting having my typical focal motor seizure clusters. My awareness was very spotty. At one point I was aware enough to hear doc say "she's in status" due to how many I had back to back. After IV Keppra and a ton of Ativan they stopped and I remember barely anything from that moment until I came to at some point on Monday when my friend and my boss were standing at bedside checking in on me.

When i was initially medicated September 2025, I was started on 25mg Lamotrigine 2x daily; I was a still having plenty of auras multiple times a week but they were short and I was able to manage until May 2026 when I had an increase in auras and had a full episode and Neurologist increased dose to 50mg 2x daily. Since May I have only had about 3 auras until Sunday night/Monday morning's episode.

I was kept in Observation for an eeg that lasted all of 45 minutes, after I had been blasted with IV Keppra and Ativan some hours before, and given 100mg of Lamotrigine some time before they hooked me up to the eeg. OBVIOUSLY IT ALL CAME BACK NORMAL AND once again has pnes plastered all over my chart.

I have been feeling frustrated bc I was doing well for a few months until this flare up. I don't see my neuro until 2 weeks from now and I'm not sure what next steps should be. All my eegs have been negative and I thinking of asking for at-home eeg without meds to see if that shows anything.

Lastly- when you're medicated in the ER, is your memory fuzzy from the meds, from the seizures, or both? I have slept more than I have ever slept since this happened; I'm not sure if this episode just took me our or the combo of seizure and meds have me infinitely sleepy.

I had my first grand mal seizure in 2014. Diagnosed epileptic and put on Keppra. My normal dose of Keppra is 750 mg 2x/day. I had another grand mal seizure the other day- my first in 12 years. I am also 3 months post partum, so my doctor thinks my dose wasn’t high enough mixed with post partum hormones and that’s why I had one. Doctor is having me take 750 mg 3x/day now. I’m now on day 5 of this dosage. When can I expect the medication to fully get in my system? Is it immediate or does it take a few weeks?

I used to never worry about my epilepsy. It was so well controlled, but now after having 2 kids under the age of 2, I’m so scared to be alone with them now. I was holding my new baby the other day when I had my seizure. Thankfully he’s ok, but I can’t help but worry about that now. Any words of wisdom, comfort, or advice is also appreciated! I think I’ll feel a bit more comfortable when the medication is in my system longer!

Hi, so I’m 27 and live with my mom and husband. I have had epilepsy since I was 10. I have had all different seizures throughout the years. Currently I am having drop seizures, where my body locks up I am completely unaware and fall. I also have stare off ones where my arms come up and I start pumping them at myself almost like punching. I am wanting to have a child soon, but am not allowed. I can’t have a job because I’m unreliable, I can’t drive. I can’t be alone ever because they can start at anytime. It’s so difficult. Any suggestions as what to do at my age?

I’ve been dealing with a lot of panic and anxiety lately specifically around my epilepsy and I wanted to ask for advice I guess?

For context, my epilepsy is controlled with medication (edit: I have only grand mal tonic clonic seizures when I do have seizures I feel like this is relevant for my anxiety), which also and the times that I’ve had seizures over the years, which has been once every one to one and a half years, has for the most part been my fault tbh (not taking good enough care of myself, not tracking meds). But recently, as in the past two years, I have been very diligent in taking care of myself so I genuinely don’t need to be as scared as I sometimes am.

What will happen is that, for example, something will confuse me or I’ll be thinking of something and lose my train of thought. I have some sort of confusion and it reminds me of a seizure symptom. I then get a little panicked for a moment and that feeling of panic or fear reminds me of impending doom.

Therefore I have two different potential “symptoms” of a seizure and it will FREAK me out. I then have to calm myself down. This happens frequently and for the most part it’s just little 5 to 10 second moments that come in strong then pass; however, recently I had a severe and prolonged state of panic. It was multiple hours of fear then calming down a bit then fear again. I’m really at a loss of what to do. To be fair I was a little extra brain foggy that day which added to the fear, but it’s not a unique experience to when I’m having a bad day in particular.

Does anyone else deal with this? How do you guys deal with this? And before someone says it, yes I have a therapist and will bring this up there too, I just wanted to come to people who understand too!

Im a 22f diagnosed with generalized epilepsy. I had my first grand mal seizure when I was 13. Within a week I was on keppra. I continued having seizures/seizure activity on an eeg until I was 14 ish. I am currently on 1000 keppra AM 1250 keppra PM. I have been on that since my last seizure at 14. I have remained seizure free since the last med increase. I typically nap and need about 8-11 hours of sleep a night. The keppra kicks my ass. Or so I thought was the keppra. In the past 6-8 months I began to experience severe short term memory loss and cluster headaches. I mentioned this at my yearly med refill appt so Neuro ordered a 72 hour ambulatory EEG. Turns out I had a 4 min and 20 second focal seizure. Neuro wants to increase my keppra to 1500 twice daily. I am very nervous for this as I had major keppra rage going on it when I was a teenager. I am also reading that a lot of people with epilepsy get a specific brain scan. I have never had one. I’m wondering if I should ask my dr about this. Part of me just feel feels like more should be done. How many other people have had seizures just completely switched up like this ? Would a brain scan be worth looking into?

Side note: This news has been devastating for me. I thought my seizures were controlled and I was at a good place to maybe discuss a possible wean. And now I feel like I am starting all over again. My fiancé and I both want to have a baby within the next 2 years. I feel like I can’t even do that anymore.

is it safe to take psychedelics like lsd or mushrooms or could that increase the possibility of having a seizure? i take epilepsy medication. i don’t want to accidently mess my brain up just because i was being stupid one time.

I’m currently on Keppra (levetiracetam) 1500mg twice a day and Tegretol (carbamazepine) 200mg twice a day. (I’ve been on this dosage for over a year now after switching from 1000mg carbamazepine and before that I was just on lamotrogine since I was 12)

I don’t really know life or what I’m like without being on some sort of epilepsy medication

Over time I’ve had a bunch of symptoms that I’ve never really been able to pin down, including:
● Nausea
● Muscle fatigue / my muscles feeling tired or heavy
● Lightheadedness
● Occasional proper dizzy spells (not super often)
● Feeling like my nervous system is just… heightened? Like my body is very easily overstimulated/on edge with muscle spasms and things like that
● Anxiety
● Mood swings / being quite emotionally sensitive

l have had what feels like every test and scan under the sun, and nothing else has been found to explain them.I’m really just interested in lived experiences. I see SO many posts on here from people describing weird or unexpected things they experience on epilepsy meds, and we all know these medications can be pretty brutal 😂 So I thought I’d come to the people actually taking them:
Has anyone on Keppra and/or Tegretol experienced any of the above? Especially the muscle fatigue, lightheadedness/dizziness, nausea, or that weird “heightened nervous system” feeling?

Please keep this epilepsy related only, I don’t want suggestions of what other things I might have cause I’ve tested for them all 🫠

For about 3 years I’ve had seizures in my face to shoulder area. I stay conscious during it (which might make diagnosis harder) though not fully aware, have feeling of impending doom, urge to eat an edible despite actually not wanting it because it contradicts my ADHD medication, have my face go stiff and numb and it’s VERY easily triggered by light. My EEG show vertex sharp waves but not in clusters and I had an actual seizure on level 3 out of 20 with flashing.
And I still can’t get diagnosed. My neurologist tells me to do one more EEG in sleep deprivation after already having 3 and reacting in 2 of them, progressively getting worse (one time a tech told me to „calm down” as I was convulsing and seeing myself in 3rd perspective, because they diagnosed tetany before. Tetany doesn’t explain the flashing and I take a whole load of magnesium, no reaction. I’m not made of money. I can’t go a week without having a seizure. I’m getting mad, I’m a swimmer who has to exercise as a recommendation by psychiatrist and I can’t do it if I’m gonna be yanked under water by my own neck or suddenly can’t open my eyes on a bike.
Sorry for rambling, I needed to vent

hello, I was diagnosed with temporal lobe epilepsy last year after a snowboarding incident in 2023. I am 25 and I take 75mg of lamotrigine a day and haven't had any seizures in while. i have focal awareness seizures so not tonic clonic. I did ketamine a few times before my TBI and now that its been 3 years I was wondering if anyone had any experiences with K while on lamotrigine. i've read articles that say its good for it and articles that say other wise. I have also read that lamotrigine can cancel out K's effects. I am super curious to see what anyone has to say. i don't drink anymore, i am fine smoking weed but i quit a couple of months ago because my new job does the 5 panel urine test. curious about micro-dosing shrooms as well and K experiences. Thanks for the feedback!

Hello!

My question is, do you get auras before a seizure? How are they and how long before the seizure they happen?

I don't feel anything before a seizure, I just wake up confused, dizzy, with a headache and nausea and am told I had a seizure so I wonder what it's like to get a warning. I wish I had a warning too! But they are so sudden and unpredictable.

Thank you! Have a nice one! 💕

My doctor (a seizure specialist) mentioned getting a vagus nerve stimulator implanted because my seizures appear to be drug resistant. Does anyone here have any experience with the device and if so what's it like?

Thanks.

hello everyone!

This is my first ever post on this website and I’m hoping somebody can give me some advice.

so for me, partial complex seizures started around the age of 14 or 15. I am now 32 with two kids back living at home with my parents. I have been through a lot with my epilepsy and it has been hard. in the past 17 years, the longest I’ve gone without a seizure was six months. so many tests and scans have been done. But none showing more than strange activity in the right frontal part of the brain during an episode. So they know where it comes from, but they don’t know why. And this honestly annoys me. Now as I’ve gotten older, we seem to figure out that during my menstrual cycle is usually when they happen more often.

During pregnancies, I don’t remember having one seizure at all, but as soon as I getting my period again, seizures started happening.

now I am tossed because I am finally in a great place with a great man and we were talking about having a baby in a year or two and I just found the medicine xcopri and it’s helping!! Anyone had an experience with Xcopri and pregnancy?? everything says it’s never been tested!!

I've been diagnosed with JME since 2014 but I only ever experienced morning muscle twitches. Last year I had my first (and only, hopefully) TC seizure. My neurologist didn't question it as part of the JME and since I started medication, both my symptoms and my EEG have been clear.

Now there are two things that confuse me:

1) before the TC seizure I had roughly 2 minutes of visual impairment, where I was still walking and able to talk but all the lights started moving and I felt something wasn't right. Then I lost consciousness. According to what I read, this aligns with focal-to-bilateral seizure...

2) an MRI showed I have mesial gliosis which is scarring in the temporal lobe, and occurs in people with temporal lobe epilepsy

I definitely have JME, but I wonder if it's possible to have TLE as well. Theoretically it is, but I have no idea what focal seizures might be like. Maybe I've had them without knowing.

I will try to discuss this with my neurologist, but he tends to be quite dismissive, so...

to those of you that use seizure detection devices, how well do they work? would you recommended them for someone who has regular tonic clonic seizures? i live with my boyfriend but when he is at work i get worried that i may have a seizure and not be able to alert him in time and i could go into status epilepticus or have a bad fall or something. if you have one and they work let me know what kind you have!

What are your after epileptic episode care routines to help recover quickly

Basically, are we hooped??? Looking for info and experiences.

The onset of my epilepsy (TLE) coincided with the onset of my first perimenopause symptoms at age 37, which was 11 years ago. I noticed the catamenial pattern before I even knew the name for it.

Now I’m at a stage where I’m looking at HRT for my peri symptoms but I am afraid to take estrogen because it will make my seizures worse.

When I asked my epileptologist whether HRT is ok for me he waved it off and said it’s fine. No discussion. But that’s how he is.

So… anyone have experiences to share? Or info?

I have an appointment with my PCP soon to discuss it and would like to be better informed. 🤦🏻‍♀️

TIA!

Keppra has turned me into a different person. I’m so sick of feeling like a zombie. Brain fog, SI, sex dysfunction, constantly tired, memory zero. Haven’t felt myself since started taking it. Just totally over it. Will it literally kill me to stop? I was thinking of weaning 250mg a month. I’m scared, but willing to take a risk I think? Anything to feel even slightly normal again.

I’m on many different seizure medications plus an RNS device. Currently I’m on:

XCopri 50mg
Trileptal 3000mg
Zonisamide (zonegran) 600mg
Briviact 50mg
Briviact 100mg
Klonopin 0.5 as needed

XCopri will be bumped to 100mg and Zonegran will be lowered to 500mg taken all at night.

I’ve done something like this once before and it caused seizures. Can anyone tell me what their experience was with trying to wean off a seizure medication?

*body horror warning*

A guy had to drill into his skull, cut out a piece of his brain, and jam it into a slot to stop an electrical current from zapping him to death.

Fun fact: brain tissue still conducts electricity. Like... pretty efficiently, actually

Hola a todos, llevo con epilepsia desde mis 9 años. Siempre he sido una atleta, amo los Triatlones, el Trail, TODO... Pero ahora me han hecho un nuevo diagnóstico, EPILEPSIA GENERALIZADA IDIOPÁTICA. Anteriormente no había problema, pero ahora con un nuevo diagnóstico me han cambiado toda mi vida entre ellas: No puedo correr, no puedo nadar,... Solo yoga.

Mi pregunta es la siguiente, hay alguien con un diagnóstico similar y que puede hacer su vida en relación con el deporte con normalidad??

Gracias

Yes I know they worry and stuff because they care. I get that. And they do their best to not show. My dad conceals the best because he had seizures before. But damn, I fucking hate worrying people. I feel bad for my ex because I traumatized her. And they didn't even have to say anything. I knew. Just as I know with my parents. My mom can't hear a weird noise in the house without getting scared and yelling my name to make sure I'm okay. And like I don't like talking about it because of all the "oh it will get better", "I can do it all for you don't worry", and the "I'm just worried about you". Like damn it I'm 21 and feel like I can't do anything without worrying someone. And hell because of all of it I'm scared to date anymore. It takes a huge toll on people around you. And I don't want to put anyone else through it. And not to mention my grandparents health have been declining and my mom is just saying "oh it will be okay. Don't worry about it. They are being taken care of". How am I not going to worry about my grandparents? I love them with all of my heart and have learned a lot from them. Like damn it. I know they mean good by it. But just the thought of it all hurts. I've been dealing with them for about 3 1/2 years now and I just have started feeling defeated. I can't find a good job (I live in the middle of nowhere. I don't have a neighbor for a good mile) so I feel like I'm freeloading. I know it likely won't get better about me feeling guilty for putting everyone through this but I wish they would stop worrying sometimes.

When I was a kid I was first diagnosed with low blood sugar and then epilepsy. Fast forward twenty years and I finally have a general dr. She is noticing my hemoglobin has been low for the last 12 years, suspecting low iron. I have to do blood work tomorrow but it got me wondering on the connection between low iron and seizures (there was never a cause found for why I had them other than possibly the high fevers I used to get as a kid to the point I would tremor). Has anyone else here been diagnosed with iron deficiency anemia?