Hello, I just made this account to ask about this and I'm sorry about my wording, orthography and punctuation, English is my second language.

How can I manage my medication when the time changes? Like... Three in the morning becomes two and four becomes three and I take the meds at 8:00 am... Do I take them at 9:00 am or keep it at 8:00 am? (I sound kinda dumb, but I don't have too much time with the medication)

*Juvenile myoclonic epilepsy*

My backstory: I had my first seizure at 13 years old (23 now). Everything is finally stable, but the PTSD is still there because it was so traumatic. Does anyone know how to cure that? One of the most frustrating aspects is the lack of understanding & empathy. Or, they give out ”good advice” with good intentions, but it only makes you feel worse. Watching others your age living the life you could, but have not been seizure free enough to drive/living in fear.

But just recently, some told me that they have epilepsy and it felt so nice. Finally. There is someone who knows what it’s like. When I tell others, they say “sorry” and to be honest, part of me likes that (sort of pity) but the major half hates it because it makes me look weak 😭lastly, having epilepsy really ripped away all sort of happiness (finally getting some back) and I just hope it’s not just me.

~ bella

last night i was having a very intense dream and in the dream my entire body tensed up really bad and i started shaking. i could hear a distorted whooshing noise as well. after just a few seconds i forced myself awake, i couldn’t tell if i had actually been shaking in real life because the first few seconds of me being awake i wasn’t fully awake but once coherent i knew i wasn’t moving at all. i do know i was clenching my jaw like crazy it was sore for a few minutes. i laid there for a second because the dream was pretty scary and i didn’t want to get out of bed. when i got up i felt like a fullness in my head but it went away in just a couple of seconds. i checked my phone and it was 5:30am, i had only been sleeping for a little over an hour and a half. i went back to bed until about 12:30pm, when i woke up i felt normal other than some brain fog for about an hour, now it’s 7pm and ive felt fine all day just tired. should i be worried or was i just having a wild ass dream lol?

For those of you giving your dogs liquid Keppra, which compounding pharmacy do you use, and can they make it with minimal additives?

I saw a review that mentioned a small toy poodle who became very sick after taking the liquid Keppra formulation containing the sugar alcohol, Maltitol, which is used for people and dispensed by a regular pharmacy.

My 8 pound toy poodle has frequent stomach issues and flares, so I’m concerned about finding a formulation that is meant for dogs and she can tolerate. She would need 1.2ml 3x per day.

I’d really appreciate recommendations and experiences with compounding pharmacies!

My 6 month old daughter’s pediatrician is suspecting that she is having drop seizures and we are supposed to be having an EEG and an MRI soon to confirm it but I am terrified of how this might impact her future. If you have any experience with these seizures how does it impact your life? What was the cause of the seizures in your case? Are they manageable? Any information about this would be greatly appreciated.

Hi everyone,

I’m wondering how people are going through their recovery process after experiencing a seizure. I just experienced my second GTC after 7 months & assuming it was a single unprovoked seizure. this time i’m on keppra and made significant lifestyle changes so i wonder if this is like a path to recovery.

I don’t know why i’m in a constant state of worry and quite frankly i’m severely traumatized and way more traumatized than my first seizure since i assumed it was circumstantial. I already have anxiety issues but i’m just so scared i’m gonna have another seizure again and I really don’t want to experience this for another time. I’m sure many of us have had aura’s or random things/feelings that are so similar to their aura that you just prepare yourself for another seizure.

I don’t know what to do. i’ll say that this time there’s so many changes that have been added to my life whether it’s lifestyle or medication but idk why i feel like no matter what, its gonna happen again.

I wonder if anyone has had any success stories, advice, or pathways to recovery experiences that you’re willing to share. This year has been so unexpected and i am unsure on how to move forward and remain positive.

Helllooo all,

I’m currently 125mg Lamictal which has given me 100% seizure reduction until 2 days ago when I had a grand mal in the shower. I’ve been on meds for 4 years and have only had two seizures since being on medication - I’m really not interested in upping my meds and I’d rather try Rick Simpson Oil (RSO) or Charlottes Web <Bud> to experiment as an added layer to my meds - or - because I believe in miracles - just swap entirely to plant medicine. I’m sick of not understanding my body, triggers etc. and I truly have heard wonders for Charlottes Web / RSO

the catch: I’m in Chicago and I can’t seem to find a heavy medical marijuana dispo, they aren’t always focused on conditions since it’s rec and I can’t find this strain or RSO anywhere. I’m willing to travel (with friends) acrosss state lines - I imagine there are growers in MI or elsewhere that are dealing with similar medical issues or know where how to get high quality medical products. If anyone has any information please share 💜🫶🏽 DM plz

In july I had two focal seizures (two days apart). Completely terrifying being conscious and was alone when they happened. Had my third like two weeks ago. This time I was unconscious and I don’t remember anything at all. I just remember it starting and then being at the hospital. My husband and I have been racking our brains on what could’ve triggered them. I am 24. Never had anything like this happen before. The only thing we can think of is that I was hungry?? Also not sure why the third was so different.

I’m on my 6th year of college and it looks like I might flunk this semester.
I’ve missed more classes than I’ve attended.
My sleep schedule has been destroyed.
I’m bed ridden most days. Work is mad at me for being late. I’ve been let go by my internship. My relationships have degraded. I’ve neglected everything in my life from my dog to my hygiene to my friends.
When I do go out with friends, I feel guilty for having a good time when I’m missing so many responsibilities

I’m realizing that I’m not as capable of living alone as I thought but I can’t move in with family without dropping out of college.

Everytime I think I’ve escaped this part of my life I’m dragged back into it.
I just wanna give up

A couple of months ago I had a 5 day stay at a Epilepsy Monitoring Unit in a large hospital. They glued about 30 sensors to my scalp they were to measure my seizures. To induce seizures the neurologists abruptly took me off of my seizure meds--Lamotragine and Xcopri. I have been taking Lamotragine for 16 years and to have been taken off of it cold turkey gave me a migraine that I had for most of my stay.

You are constantly monitored by video. And there are nurses constantly coming into the room to take my blood pressure. Going to the bathroom was unusual because they had to put a large belt around my chest. I had to wear a football helmet! I had a seizures on my second and third days. The neurologists didn't do a good job of telling me what they found but they seemed to be happy with whatever they found.

Let me know if you have any questions about my stay.

Hi Everyone! I posted on here a bit ago. I’ve had two seizures this year at 30 (nearly 31). I just had an appointment with my neurologist (really a nurse practitioner, but I trust them) and I’ve seen her twice now and I can’t help but feel that she just expects me to…..get over the fact that my life has been messed up? That showering causes me to panic? Like all of a sudden I’m supposed to be completely ok with “you know, seizures can kill you!” conversations? Idk, I’m thinking of getting a second opinion or just a new provider, but maybe this is just my emotions. I don’t even want to think about any of this because I just fly into a rage when I do (trying to get back into therapy, yes). Do you EVER figure out what causes seizures!!! Like ffs am I just supposed to never trust my body again???

Maybe it was something about how seizures affected everyday life, the uncertainty around them, changes to routines, driving, work, relationships, or simply how much there was to learn about the condition.

Was there something you wish someone had explained to you earlier?

For anyone living with epilepsy or supporting someone who is, we'd love to hear what surprised you most.

I’m a 21 year old female that’s just recently within the last few months have been experiencing episodes ( that I have been referring to as seizures) where I will get a huge wave of exhaustion, nausea and fatigue. My heart rate will slow, my breathing becomes hard and labored. I will slump and twitch/shake all over, face twitching especially… So much so I will get cluster headaches right after. While in it my insides feel hot and uncomfortable, and I am confused and violent after being brought out of it. While in these episodes I cannot move any part of myself other than maybe a hand or a finger, I cannot speak and I will grunt, gargle and groan. I have not had an accident on myself nor foaming at mouth, just drool. These episodes can range from 30 seconds to up to 10 mins sometimes even longer, I can feel myself get weaker and getting close to one as well, I blank and lose energy to speak. Doctors near me say there is nothing wrong and I’ve been sent in ambulance already, but I know my body and I know this isn’t me. Please help any idea and insight about what this is, is appreciated. (No new life style changes or medications)

.. today has been horrible, I get incredibly sick with them and fight them off all day.. can’t even go out anymore it’s ruining my life please help.

I’ve been having these episodes that probably aren’t seizures… but I just remembered that a doctor once ordered an EEG like 8 years ago because he thought some childhood experiences might have been focal seizures. So maybe it’s worth reconsidering! I will say that I've been taking Lamictal for bipolar for ~7 years, so it's hard to know what my brain does at baseline.

Childhood: Brief but intense episodes of déjà vu and dissociation (I’d say depersonalization). Also, feeling foggy and “out of it” in certain conditions (e.g. specific lighting). I rarely have déjà vu these days. Dissociation sometimes. The spaciness I feel often, both in certain enviroments and during random episodes.

“Episodes” I have now (more frequent after having Covid this summer). Usually there's an acute moment and then I feel off for a while.

-General unwell feeling, like I need to be horizontal.

-Spaciness, confusion, fog—doesn’t quite feel like derealization or depersonalization, I just feel out of it.

-It feels like I can’t think… my own thoughts are impressionistic and hard to follow, and I have trouble following and remembering what people say.

-Can talk, but struggle to have ideas and put them into words.

-Can move, but often sit still anyway and feel frozen.

-Shaky, heart racing, chilled, flushed, and/or nauseous.

-Apart from those episodes: mundane memories I haven't thought about it years pop vividly into my mind, like neurons are randomly firing. It will happen a handful times in a few days and then not again for months.

Two examples:

-Had to leave work because I suddenly felt ill, weak, nauseated, confused, was having trouble using the computer and talking to customers; took a "five minute break" and sat down with my head on a table until my concerned coworker came to find me.

-In a psych hospital. Said “I feel frozen" to a nurse because that was all I could say for some reason. They did a neuro exam, by which time the feeling was fading. They said it was a panic attack. I walked past the nurse later and he did a double take and said “ohhh I see what you mean! you look way better now and your walk is different!’

I have had panic attacks and strong freeze responses, but this feels more physical to me (not that panic attacks aren’t physical). I thought it was blood sugar, but bloodwork is normal. I’ve even tested my glucose at home and haven't been hypoglycemic.

I would love it if anyone either can relate or has thoughts about whether these could be focal seizures!

Out of know-here yesterday because I thought I could hear yelling and I thought I was not talking my voice was hurting but it hurt but the scary part is that I’m aware and I get all emotional and I hide it but it’s easy to spot through in the night mood swings sometimes my veins hurt and ache I think it’s a focal awareness seizure but it’s in the veins and it hurts like it’s about to pop but it doesn’t

Something different is happening now. I no longer live in a state where marijuana is legal, so I’ve transitioned to hookah. Recently I’ve noticed that when trauma comes up, I drool just a little bit when I cry. But the good news is that I don’t experience partial paralysis anymore. I still occasionally have death auras, and it seems my body has a will to live now, and even when I feel tempted to let depression or PTSD take over, my eyes will stop the death aura from happening.

I feel grateful that my eyes and brain together fight for me.

Hi everyone!

I’m a biomedical engineering student at an Ivy League institution working on an early-stage project to develop a seizure detection device designed specifically for children, potentially as something wearable.

I wanted to ask this community because I think the people who actually live with epilepsy, or care for someone who does, are the ones who understand the needs and challenges that engineers might overlook.

I’m especially interested in hearing from parents and caregivers, but I’d love to hear from anyone with personal experience using seizure detection devices, too.

A few questions I’ve been thinking about:

• What worries you most about seizures? Is it not knowing when one is happening, being unable to respond quickly enough, nighttime seizures, false alarms, or something else?
• Have you ever used a seizure detection device? If so, what did you like about it, and what frustrated you or made it difficult to use?
• If a child were wearing one, what would matter most? Comfort, size, battery life, durability, being discreet at school, ease of use, or something completely different?
• What would make you trust a device like this? For example, reliable alerts to a parent's phone, minimal false alarms, or clear information about what happened during an episode.
• Is there anything about existing devices that you feel is missing or hasn't been designed with children and families in mind?

You definitely don't have to answer every question! Even a small detail about your experience could be incredibly helpful.

I'm not here to sell anything or claim to have a solution already. I'm still in the early stages, and I'd genuinely like to understand what people need before making design decisions. I also recognize that everyone's experience with epilepsy is different.

If you could change just ONE thing about current seizure detection devices, what would it be?

Thank you for taking the time to share your experiences. I really appreciate it! ❤️

I'm at a complete and total loss.

I do not have epilepsy. I've been taking seizure medications for over 20 years at this point. Within the past several years, they've gotten a lot worse.

They dont know why I have them. Therapy doesnt help. CBT doesn't help. The 500 mg twice a day of keppra and 175 mg twice a day of lamictal doesnt help. The Lexapro and abilify didn't help.

Nothing.

Helps.

Should I even be on medication? Obviously I will discuss this with my neurologist, but I just don't see how good its doing. I'm so lost

UPDATE: Thank you all for your kind words, sharing your own experience, and teaching a lot of information. I've read every single response to my son and we've been researching everything you all mention here, you guys have been an invaluable learning tool and I can't thank you enough for that.

The more we read and learn, the more we are sure he's been having not only in sleep seizures but focal onset aware seizures for most of his life. In some ways, despite scaring the crap out of me, him having the big seizure on Monday might end up a good thing by finally making us aware of what's going on. He has his first doctor's appointment today.

Thank you all so much ♥

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I am new to this subreddit so please forgive me if I forget info or post something incorrect.

Today my early 20's son had a grand mal seizure. I've never been more scared in my life seeing him like that, with his skin color and the noises he was making I honestly thought I was watching my child die. I rolled him on his side so he wouldn't aspirate, put my hand between his head and the dresser so he wouldn't give himself a concussion (he was laying almost on it), and had 911 on the line all the while.

Ambulance came, he slowly came to but was super out of it. It wasn't until he was in route to the hospital that he realized he wasn't dreaming, he was really in an ambulance but he had no idea why he was or how he got there. At the ER, his CT, blood work, and urine all came back normal. They sent us home with instructions to call his PCP and neurology, both of which we're doing ASAP in the morning.

I was reading about seizures and something flashed in my memory: I am now wondering if he's been having seizures in his sleep for months but we didn't know it. He keeps waking up with major bites in his tongue, complaining about weird pulled muscles, headaches, etc. We just wrote them off as deep sleep or pulling something the day before when out walking or something. But now, I am worried today wasn't his first seizure but rather just the first one we caught? Thoughts or opinions? I'm not gonna lie, I am stressed TF out worried about him.

My roommate had a massive seizure (he wasn't hurt) and his girlfriend asked me to find out if there are any natural remedies or drugs (OTC or prescription)that can speed up recovery after a seizure and/or prevent more from happening.

"Anything that isn't just rest," she says. The list I gave her from an Epilepsy website was stuff she already knew, so not useful.

A few things

- He had an Ativan prescription for something related to mental health, but his doctor has refused to refill his Ativan for 4 months now

- he is a daily marijuana smoker (he likes Indica), which I hear helps?

- We're out of CBD gummies

I can't remember any other pertinent details.

Thanks for reading.

Roger

I’ve had seizures since my second birthday and got put on lamictal 200mg before when I was younger it didn’t affect me moving up a dose but recently since then I’ve been having major mood swings is that normal?

What is your take on this medication?

What has brought about a drastic change in your epilepsy? I realize, of course, that there are unavoidable factors beyond one’s control; however, in my own case, I’ve noticed significant correlations between my absence seizures and factors like sleep timing and stress. While I can only control stress to a certain extent, I have complete control over when I go to sleep. Perhaps you have some insights or ideas that could help me identify other factors—things that might be affecting my condition without me even realizing it? Thanks in advance for your advice