I am a speaker (with epilepsy) and I find myself at a lot of medical conventions and advocacy events. I was having a discussion with someone who said something that struck me.

‘What if we just ditch the e-word?’ ‘What if we just call it a seizure disorder’. ‘The word conjures fear before we get a chance to explain.’

Would it help? Would ‘seizure disorder’ give us a fresh start?

I’ve dedicated my adult life to advocacy. I’m in the camp that for many it’s the stigma, not just the seizures, that are keeping us down.

To be very clear - I’m not advocating one way or another. But it makes for an interesting discussion.

And this isn’t about identifier words. (Epileptic/person with epilepsy/etc), it’s all personal preference and whatever feels right is your business alone. To me, this is a different question.

I thought it was interesting when she said that bipolar disorder used to be called manic depressive disorder. And the switch, at least in part, hoped to overcome a fearful image.

Most of advocacy is trying to reset what epilepsy means to the public.

I have no shame around my condition. I was lucky to be taught not to hide it. And yet I do wonder. How much of the weight is just wrapped up in the word?

Your thoughts !

Edit - Lots of responses! Some context -

1. Absolutely not endorsing this or claiming it as my opinion, as I said above. I was approached, by a physician, with this perspective, and thought it would be an interesting discussion. Sometimes there is a divide in discourse between two worlds because patient groups are often not in the room to respond with their perspective. That’s why it matters!
2. Some comments here that I am encouraging hiding or shame around the language we use. Wild take. My whole world is about encouraging people to speak up. That’s why this perspective was interesting to me. Does the language have that much power or does focusing on language totally miss the point? That’s the discussion.

3. I kept my perspective out so as not to color this. I am in the camp that the words are not the source of the problem. Now we have a thread that this physician could be shown with a nuanced response. Overwhelmingly, the epilepsy community here would disagree with them. That’s productive.

4. There is a medical distinction for a reason, that’s correct. Interesting that this perspective was from a physician, at a conference, which was called out here in the comments.

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.

So I am on lamotrigine and was on 200 (prescribed by neurologist) until earlier this year my psychiatrist brought it down to 150. Ever since it’s been on the 150 I’ve been good, no problems possibly one aura but also might’ve been dehydration as sometimes my symptoms present similarly. Well I went to see neuro two weeks ago and neuro bumped me back up to 200, cue the same issues I had earlier this year. I called, they told me to go to the hospital to get checked on. I refused, they waited, I called back Monday and explained again trying to get ahold of my neuro and I was threatened that if I did not go to hospital they’d send an ambulance to my work. In the end I got out fine and both hospital doc and neuro agreed to change my lamotrigine to 150 but idk if I want to go back to their office after that.

Backstory : i passed my high school last year but didnt go to a collage and decided to take a drop to get into better collage then what i was getting after giving a year a competitive exams for med school and engineering school i didnt get good results and now i am left with these options either take mbbs from abroad take b.e/btech in other states of my country or abroad or take a bsc or btech collage in my local collage near my home my parents want me take the local admission and then go for ms abroad if i would wish at that time but the issue is that those local state public collage and universities are amoung the worth of my country like they dont have placement nor do they have good education and startup culture and bsc collages are their just for sake of being called graduate they dont even teach but i wanna learn and study from a good uni so that i can become a good successful person in future and i honestly have a thing for learning as this is the only feild that didnt betray me due to my disease my counter argument is that i other states or abroad i am getting way better collages in all three type of undergraduate programms so i wanna persue their but my parents arent happy with that idea and they just keep saying that health is biggest issue and i should solely think about it only that i am not fit to live in a hostel like its true that epilypsy will make it difficult for me to live abroad in a hostel but what can i do burn down my carrier to the ground and stay at home just hoping that the disease leaves me in next four to five years so i can focus on my carrier like this disease has been with me since i was in 4th grade how long do i need to wait i have just ran out of patience just because of this sucker of a disease i was not able to get a good collage in my state now that i am getting a good collage somewhere else they want me to leave it for something thats not even Comparably to it what should i do i am soo much done with it like i can force them to let me go but it scares me that what if something happens at same time i cant watch my carrier getting burned down to ground while i just keep watching plz help

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!

Weird question, but im 22 and have always said “if i could restart my life, i would be a lawyer” and i know im still really young, and i could be a good lawyer. But I have zero memory due to epilepsy/my meds, so I feel like law school (let alone the bar exam) would be impossible. I am barely finishing college without chatgpt. So, any of yall lawyers? Im in the U.S

I had my eeg last week and I am still waiting on the results. I had one uncertain episode which was listed as vagal episode/ potential first seizure.

When I did my eeg I experienced eyelid trembling during the hyperventilating part and it really freaked me out. When I called the clinic to ask if the report has been sent to my family doctor she said “the neurologist looked over the EEG but hasn’t finalized it yet and she will go over specific parts with you during your follow up”

Is this normal? Why does she want to go over it with me during the appointment. Does this mean they found something?

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

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....

Always hate the first couple days after getting my medication changed. I'm just all over the place, fumbling things, irritable, can't even write properly sometimes.

Any of you have similar experiences with lamictal increases?

Went to the neuro today. I started having an episode in the lobby. Staring off, started shaking, could hear people but not respond well. The nurse gave me my rescue med that is only for my tonic clonics? They took me back and laid me in the bed in the little consul room. Then I started shaking again, eyes fluttering, breathing out so hard I gasped for air, etc. he asked me to wiggle my toes, which I couldn’t do. He tried to get me to say my name, which I couldn’t do. He just stared at me and said he thought I should go to the hospital. My husband interjected that the ER does nothing for me. They just say to follow up with my nuero and take my meds. Then he left. That was the whole appointment.

Idk. I feel like the whole appointment was weird. The dr is upping my meds again within the past 2 months. 🙃 I guess I just needed to vent.

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! 💕

Do you guys ever get auras that like make you see things in your head before they happen? They dont always happen but its almost like mental visions of things happening or that could happen. But sometimes it does happen and it makes everything worse. Like I freak out and it makes me feel more sick.

My boyfriend was diagnosed with left frontotemporal epilepsy four years ago, which the last neurologist he saw described as “severe.”

We weren’t together at the time — I didn’t even know him yet — but from what he has told me, he spent the first two years going back and forth to hospitals for countless neurological appointments and tests. Eventually, I think he just gave up on the medical system. One of the last things that happened was a doctor suggesting that he be hospitalized for antiviral treatment, despite the fact that no virus had been found in his spinal fluid.

We’ve been together for a year now, and I’ve watched his condition gradually deteriorate.
For a long time, he attributed everything to some kind of “neurodegenerative disease,” but that has never actually been diagnosed. The only neurological condition that has been formally diagnosed is his epilepsy.

He describes his deterioration as happening in “stages” or “steps.” He will suddenly get worse, reach a new baseline, and feel like he never fully comes back from it. His symptoms have become increasingly disabling: heavy and painful legs, short-term memory problems, difficulty speaking and finding words, among other things.

I’ve spent an enormous amount of time reading through this subreddit and looking for people with epilepsy who experience similar symptoms. The more I read, the more I wonder whether these episodes of deterioration could actually be happening after nocturnal seizures. He doesn’t have the kind of seizures most people picture — no shaking or obvious convulsions.

He has become extremely careful about his lifestyle because he is terrified of triggering another “step down.” Sleep, stress, hydration, everything. The last time it happened, he had simply forgotten to drink enough water before going to sleep, and by the following morning he felt noticeably worse again. Obviously, I can’t know whether the dehydration actually caused anything, but this is how sensitive and unpredictable his condition feels to him.

The part that worries me most is that he currently takes no anti-seizure medication and hasn’t seen a neurologist in several years.

I’ve booked an appointment with a new neurologist in two weeks because I desperately want someone to reassess his entire case from scratch. He has already been seen by several epilepsy specialists in Paris, France, so this time I simply booked an appointment with a neurologist in private practice who had availability. At this point, I feel completely out of my depth and I don’t know what else to do.

I watch the person I love suffer and slowly lose faith in his future. Making medium- or long-term plans feels almost impossible to him because he is convinced that another deterioration could happen at any moment.

It’s heartbreaking.

I love this man more than anything. I want to marry him. I want us to have a life together. But sometimes it feels like we’re trying to build that life on shifting ground, never knowing whether what feels stable today will still be there tomorrow.

I guess I’m posting because I’m looking for hope.
Has anyone here experienced anything similar — especially worsening neurological symptoms after nocturnal or focal seizures, or periods where you felt like you had permanently reached a “new baseline”? Did treatment eventually help? Did any of you spend years thinking you were progressively deteriorating, only to improve once your epilepsy was properly managed?

I would especially love to hear from people who were untreated for a long time before eventually finding a medication or treatment that made a meaningful difference.

I’m not looking for a diagnosis from Reddit. I just really need to hear from people who have been somewhere even remotely similar and made it to the other side.

I recently celebrated 3 years seizure free (yay!!!). It has been a really tough road and I’m so grateful to have the opportunity to celebrate! I was diagnosed at 18, so it was during a very turbulent period of life, which was difficult. Although I’ve been seizure free for a while, I get bad seizure-related anxiety and struggle with stress about how this will affect the rest of my life. I went to a local epilepsy community group to hopefully meet people in the same situation, but most people were in much more difficult situations and I felt stupid even being there. I just feel like the longer I stay seizure free, the less involved I’m “allowed” to be and the more insignificant my problems feel. I know this is absolutely not a huge problem compared to what others are going through, but I was just curious if anyone else has experienced this.

I was folding napkins at my waitress job, said “can I please sit down?” Main manger said “no you’re standing up” and I fell over bc my oxcarzepine makes me dizzy. I asked “what accommodations can I get if I speak to my neurologist?” and she responded with “we don’t do that here”.

I haven’t had a seizure in months my neurologist just added medication and is adjusting doses. I explained to them “I’m fine in the afternoons and evenings, just not as soon as I finish my meds”. the person who was watching me (assistant manager?) is speaking to my head manager today. Isn’t the “we don’t do that here” illegal? I feel like asking for a chair to fold napkins isn’t that bad or asking afternoon and night shifts only for a bit isn’t that bad either. I kept saying “what notes will you need from my neurology team?” and they kept saying “none. We don’t do that here” is illegal?!??? This job is next door to my apartment so I was so happy to start working. Idk what to do next. I’m devastated.

Edit: I’m in America, Michigan to be more specific.

even after my diagnosis, i used to be very, very sleepy. i always believed what people said: that i was just being lazy and that it was because i didn't want to do anything.

it's not narcolepsy because my doctor ruled that out, and she said that this is completely normal, not only because of the medication, but also because it's part of the condition, at least for a large number of people with epilepsy.

i don't think people understand this, even when i waste my time explaining it to them (which i shouldn't). i just keep getting annoyed when someone says that i'm too lazy and that it's just because i want to escape from my responsibilities, especially when it comes to work.

i just can't control it, any advice?

edit: in this case, i'm looking for advice on how to feel less groggy or sleepy during the day.

I’ve been taking Keppra(500mg twice daily) with lacosamide (100mg twice daily) for two years because I had a breakthrough seizure in 2023(covid.. my mom took me to urgent care bc I had two episodes in a span of 7 hours). And before then, I was just taking 1000mg Keppra twice daily.

Because as of July of this year, controlled substances can’t be filled with a discount card and the lacosamide is a controlled substance with $1k for a month without coverage. I’ve asked my neurologist if there’s anything I can take instead of the lacosamide because of the controlled medication and he (the neurologist) offered up Zonisamide as an option.

My options now are to A) continue with the lacosamide and the dr will just have to write a letter for better coverage (I had a hard enough time getting the insurance I have right now), or B) Taking the Zonisamide. Any advice or help is greatly appreciated!

I’ve started my Lamotrigine titration and am finally going to drop Keppra in a few months. I’m really excited. Keppra has made me such a flat person, super foggy, gave me bad memory and just made me feel miserable for the year I was on it. It feels like a year I won’t get back.

I’m really hoping Lamotrigine helps with the depression and brain fog, I’m sick of feeling like I’m separated from my self.

How was the titration process for others who have switched from Keppra? Or just started Lamotrigine in general?

My daughter just turned twelve. A couple months ago she’d woken up after sleeping for an hour, and she was fully aware but shaking in her arms and legs - like small, random jerks. We thought it was because she hadn’t eaten for a while so we were told to just monitor her. A month later, same thing happens again. Each time was at the first day of her period, she’s been menstruating about two years.

We took her to the neurologist in our city and they did a metabolic blood test and cbc, etc, to check for diabetes or anything else. Those tests were all good. Her EEG was normal, and then was ordered an MRI. Because of the physical presentation of her episodes (what we told them they looked like) she was started on depakote prolonged release. Her MRI came back normal - where I live, the neurologist reads it themselves and because of this, I recently asked a pediatric neurologist to take a look at it, too, for my peace of mind. The neurologist in our city sites a wide range of patients and works for the hospital as well, but I still wanted a second opinion.

My daughter only experienced seizures in her sleep, both significant episodes woke her up and lasted a couple minutes, so her dosage is 250 mg morning and 500 mg night.

She doesn’t wake up with those episodes anymore. But I’ve noticed her hands still twitch sometimes along with her upper arm sometimes.

She’s been on treatment for about two months now.

I don’t know anyone else with focal epilepsy that’s mostly nocturnal. The neurologist said it’s possible that she could outgrow it, but obviously it’s a wait and see.

If anyone has a similar presentation, I’d love to hear about your experience, because I feel alone. Thankfully, my daughter has really high spirits and was just annoyed about taking a pill. Any input is appreciated. ❤️

1st of September 2016. That was the date when I got my first seizure. I remember it like it was yesterday

Absolutely embarrassing first seizure too. I was on the toilet when it happened and my mom found me and called the paramedics. Yep. That happened. Since that dat ive had seizures consistently throughout my life.

I was still a kid and little did I know what my life would become after that one incident. I dont really know what to feel today. Like when I think about it I just feel sad. In some weird way it feels like I wasted 10 years some how, even though i didnt. Its more like because of this condition it feels like i didnt live my life to the fullest. I get anxious and worried a lot, I feel like an alien in social gathering because im always on alert just in case I feel weird and im always the first to leave because I need my sleep.

I remember back when it first started happening I would hope ot would disappear in a few years like a "oh but it will get better in a few years" and physically it did, I get less seizures but somehow I feel mentally worse.

However in someway I also feel weirdly proud of myself for how far ive come. I went through every major life stage with this condition and fought with a shit load of mental problems, but im here now doing way better and doing the things I love and everything currently right now in my life is pointing to my dream career and future. Im in a relationship with a man I adore who accepts me for who I am. Something I was always scared of doing.

I dont know what thos post is about, more like yapping my feelings out since I have no one to tell this to. But yeah 10 years, a decade. Cheers to me

What does everyone do for work? If you are on disability, what was the process like?

I currently work at a school district in an autism support classroom as a teacher's assistant. It's only been a week and I almost had a tonic-clonic and had to leave early. Then this past Sunday, I got sick and am fighting the flu or a cold with no cold/flu meds because they can lower my seizure threshold. I'm on the mend now but am reconsidering the specific classroom I'm in.

Its very overstimulating, I love our students but I get hit, scratched, have things thrown at me, and listen to screaming most days. I want to ask to be switched to general ed support (learning support) but it's only been a week so I'm wondering if I should wait it out.

I'm currently in college to become a teacher and am rethinking my career options.

I haven't had a tonic-clonic in over a year, I have right temporal lobe epilepsy and am on 2500mg of Keppra and 300mg of Lamictal. I have focals daily.

I was diagnosed with non epileptic seizures due to severe trauma and with epilepsy and for the first time in years I’m now 2 months seizure free as of today. I’m so excited about this I feel like I finally have control of my life agin. And just wanted to share that with someone who would understand how huge that is.

I can't sleep, my tongue is chewed up, my joints ache, my neck is screwed up after the seizure, my teeth ache. I could barely handle ibuprofen but it's all that would help and the pain is still there. I'm so anxious after having a breakthrough seizure after two years of none. My body is just not the same and it hurts so much more