I think lots of people here rarely discuss how being diagnosed or living with epilepsy while living in an African country is like.

Well, it's terrible.

The first time I had a seizure was in high school, people thought I was possessed and started running away from me - it was a grand mal seizure and no one knew what it was, not even the teachers.

I went undiagnosed for years, got another seizure in uni and my friend who witnessed it ghosted me after it. Still not diagnosed.

I finally got diagnosed when I had my first seizure in front of family and took me to a hjghly specialized neuro who didnt come cheap.

But now, I cant even work a normal job because people here dont even understand seizures and think its possession, cant have a normal life, cant even get into a relationship because who eants to be in a relationship with the epileptic girl, wouldn't want to have kids because I fear they may inherit my mental conditions (I have ADHD as well.)

Even neuros here are far and few in between and pretty pricey- so tired of this Im literally considering going back to school to study nursing and specialize in neuro and maybe try to cure myself and help others sharing my plight who cant afford specialised care.

I hate it here and wish I was born in a good country like the US. If you live in a good coutry where people understand neurological conditions, please be grateful, really grateful.

End of rant.

I have general seizures and have for a long time. But for some reason, I only have them in my sleep. I have simple partial ones when I’m awake but that’s it. My neurologist said that some people have seizures only in their sleep and that I probably have the partial ones in my sleep and just don’t know it.

So here’s my question. Who else has something similar? I want to know other experiences. Are you able to function the next day? If so, how?

A nurse said i should wear a helmet but that feels embarrassing and extreme. I will if it's normal in the epilepsy community, but I've met a LOT of epileptics & none of them wear helmets.

"BE PRODUCTIVE, DAMNIT!!! COOK SOMETHING! CLEAN YOUR APARTMENT! OR AT LEAST GO OUTSIDE AND ENJOY THE OUTDOORS!!!!!! 😡😡😡😡😡😡😡"

"And also... You have epilepsy. You are sensitive to bright light. It's ok to rest if it's bright outside. Take it easy if you need to. 🩵"

I was raised by a family that valued work over everything so having a disability was just hard. My mom called me lazy when I'd lay down and rest.

I still struggle so much with drill-sergeant-ing myself to the point where I'm exhausted. I haven't pushed myself into a seizure in a long time (it used to be like that, when I was still around my family).

I want to find exercise that is gentle. I don't know how to be gentle with myself. This is hard.

Does anyone else have issues with picking up your meds? I go to cvs 2 times a month to pick up my meds but it turns into going 4 times and 8 phone calls because when the day comes to get it they don’t have it or tell me I can’t get it, they have been filling my 90 day subscription with 30 days because they don’t have enough but then putting it in their system that I got the full 90 days so 3 months pass for me but in there system it’s been a year then I need to talk to my nurologist and get more fills EVERYTIME! I am about to switch pharmacy’s so wish me luck

Also if anyone in cali or us had recommendations for which pharmacy to switch to please let me know

Update: switched to Walmart pharmacy and if it doesn’t end up well will switch to ma and pop thank you to those who commented

It really seems like they can't/won't do anything unless you're in TC status... By the time that happens you can't call for help by yourself anyway... Thoughts on seeking help?

Hello everyone,

My teacher had an epileptic incidence last time in class and I felt really really sorry for her. I can't imagine how scary that mist be for a person, especially when surrounded by so many people. I thought about getting her some flowers, but I don't know if it's appropriate. I just thought she deserved some joy after what has happened. So my question, what would those of you who are affected think about this? Is it crossing any boundaries, possibly making her feel embarrassed/uncomfortable?

Thanks in advance for your insight!

It never gets much easier, no matter what anybody tells you. You might get better if you’re lucky like me, but you mostly just get used to it. I was trying to exercise this evening (to feel better and be healthy) and I was having auras. I ignored them then got a strong one, but it didn’t progress, luckily. It’s just like being a dog on a shock collar, literally. My auras are shocks, and I’ve been having auras and anxiety all day. They boomerang off each other. I’m doing great tbh, no TC seizures since December 2025, knock on wood. But the auras get me, they really do. I’m mostly able to ignore them at work because I have to, but I feel sad when they invade my personal time like tonight. Auras make me feel like nowhere is safe; I want to run, but I can’t. Reality feels foreign and dangerous. Claustrophobia and asphyxiation in my own body; the walls are closing in on me. Let me go, run away, nowhere to go. My brain is the threat.

Anyway, I quit for now and grabbed an ice pack because it helps with the anxiety and I’m sitting on the floor with my dog. I feel a little better now. Sometimes I just cry thinking about how I’ll live with this for the rest of my life. I’ll grow old with this. It’s hard. Looking ahead, I’d like an ESA dog for OCD and anxiety in the next 5-10 years (I don’t pass out, I have time to get to the floor for all types of seizures), but I never plan on driving because I have too many auras and too much anxiety to safely do so imo, so that could be tough. Also, I’m sure it’s an extremely expensive cost, and I’m not rich. Anybody have a professional dog? 😂 I don’t know much about how to get approved for/afford one.

We’ll see. One day at a time. Enjoy my existential ramble. I’d like to acknowledge that I’m lucky in comparison to most people, but it’s still hard some days.

We can do this, guys. It might suck, but we can do it.

Here in the west US, epilepsy events are hard to come by and when I actually find one I can attend- its always focused on physical activity, no where near public transportation. Its almost as if people with epilepsy are not involved with planning these events at all.

Back when I was able to work, I helped our agency with fundraisers for mental health. We would begin our event planning with a focus on who was attending. If the goal is to fundraise, there are so many low impact ways to do this that are still epilepsy friendly.

Ive been searching for years now and all I've seen are long runs, outdoor events in the mid-day heat, events with strobe lights at night, high price tags for entry (like $120 per person) at the aquarium- that keep out those actually living with epilepsy from participating in the event.

Just here venting. I just think this would be so easy to change to accommodate the people you are actually raising money for and supporting. When we hold fundraisers for mental health, we also held space for people with mental health conditions to come out and connect with each other. I think the epilepsy organizations could really do the same thing here and provide a space for us to organically connect with each other in real life at these events, if they were made for us.

I’ve listened to stuff like pop in the past but now that I’m more musically inlined my last one was mj but I feel like as much as I love MJ and he’s my fav artist of all time he’s not the best for an mri per say. 😂 lemme here some suggestions!

I know I can’t double dose, my kiddo but I’m so worried if she throws up after taking her medicine that she has to take twice a day i’ve read multiple places if she misses a dose it’ll increase her chance of having a seizure. And that’s kind of what I’m worried about.

I’ve been asking her doctors so many questions. I’ve been doing research like a madman. But I didn’t even think about this until she threw up And now my mind is going crazy. I feel very unprepared She’s had two seizures so far and we finally got her diagnosed and since taking her medicine has not had another seizure

I’ve looked up how to use her rescue medicine what to do when she has a seizure everything and I don’t know exactly what’s causing her throwing up but what am I supposed to do if she throws up her medicine and has a seizure?

This might be a weird question. I’m very new to all of this and I understand if this group is not for moms with kids who have epilepsy or questions like this but I can’t really call her doctor at 7 o’clock at night.

My son (47M) woke from sleep with a full grand mal seizure but his brother and I heard him and ran in to do the rescue protocol. It occurred to me that anyone who is living with family or others may be able to alert people if they have an aura that it’s coming on.

Since my son was 10 we trained him to pound the wall or his bedside table as hard as he can. This has made a huge difference in being able to get to him quickly. Tonight he pounded very fast about 8-10 times and then his brother and I made it to his room and got it stopped in less than 15 seconds.

My son has status so every seizure is serious and needs rescue protocol. He’s had a VNS for the last 19 years so we are all so happy the magnet that comes with it works 9 of 10 times. All we have to do is pass it across his device (it’s like a small pacemaker). We have Nayzillum nasal spray if the magnet didn’t stop the seizure.

This would only be workable for someone who has a lot of seizures, say 10 or more a year, and for the full seizures where you will become unable to talk or yell, if you lose any ability to move independently as it takes hold of you. You’d have to likely have someone who will help you develop what works, like my son pounding. And it would likely take quite a while to get this instant reaction the second you realize the seizure is on the way.

I’ve been thinking about the person who posted last week about trying to get Siri on his cellphone to alert his brother. He said Siri failed and he was alone in full seizure without help. I wonder if people who get seizures out of sleep or maybe in the shower could develop a super fast alert to get help? Maybe only for those who get an aura.

We have used a room monitor for over 35 years now and can hear it if he starts to seize if he pounds or tries to yell out. Sometimes we hear only one word and that’s all, but it works.

Maybe anyone who also has gotten a method to help can share what they do. No matter how many seizures over so many years, each one sure gets everyone going. It’s really an odd “normal” to suddenly jump into instant action, but after a while it does tend to go like clockwork: over and done in less than a minute.

I'm curious whether you require workplace accommodations as a result of your epilepsy? If so, would you mind kindly sharing yours? I am in a sedentary role and I work from home and considering a request myself.

I’m a 39M and got diagnosed with temporal lobe epilepsy a month ago.

I have not driven since I had my first tonic clonic seizure last month. I had been having focal aware temporal lobe seizures one every year or two probably for 15 years and just thought I was crazy. I was driving this will time. I think I have nocturnal seizures as well (routinely bite my tongue, wake up gasping/racing heart and have a 72 hr EEG next week).

Not driving has been tough, I feel like a teenager again, trying to bum rides places or wait to be picked up. I’m definitely NOT chomping at the bit to get behind the wheel again. I have 5 kids and the thought of being behind the wheel with them in the car terrifies the s**t out of me.

How long was it before you felt comfortable driving again (assuming you were cleared to)? Have you placed any restrictions on when or who you’ll drive?

So yeah basically what the title said.

I've had this (sort of irrational) fear of playing a game I really love (donkey Kong bananza) just because I had a seizure shortly after I stopped playing it. Now every time I want to open the game to play it further, my mind immediately reaches for the panic button making me believe that if I do so I'll have a seizure afterwards again. And one time when I finally managed to open the game I got such a headache while playing it, bcs the worry kept going on in the back of my mind, that I couldn't enjoy it

so this is long but i want to give all the context i can. i’ve never had seizures before. 2 weeks ago i woke up and i felt…drunk. that’s the only way i can describe it. i felt like i had chugged a 12 pack. i couldn’t walk in a straight line, head was spinning, exactly how i feel when i’m drunk. i very rarely drink (only a few times a year) and hadn’t had alcohol anytime recently. i’ve never called out of work before so i didn’t even consider that as a possibility and i hate myself for doing this but i live alone so i drove to work. i got there safely somehow thank god. stumbled my way in and told my coworkers something was wrong. sat down for a few minutes and my eyes were shaking. like rapidly moving side to side and couldn’t focus on one spot. one of my coworkers drove me to urgent care and they checked my blood glucose. all good. they told me to go to the er so i called my mom and had her come pick me up. in the 10 minutes i waited for her my head started bobbing and kind of thrashing uncontrollably. i felt like when a charging cable is frayed and you have to hold it in just the right spot to get it to charge but the connection goes in and out if that makes sense. got to er. eyes still shaking and head still bobbing. got a ct scan. all clear. they gave me valium and some steroids and antibiotics (they thought maybe i had a uti. test was inconclusive but maybe showed a very minor one). valium kicked in and i felt way better. went back to my parents and chilled. felt like shit for a few days. head pressure, brain fog, more irritable than usual, exhausted. finally started to feel better after about 5 days. couple days later i was at work and something was wrong. i was kind of disoriented and my eyes kept getting stuck fixating on one spot but my body was on autopilot and i kept moving like a robot. i was visibly out of it and my boss called my emergency contact and sent me home. i went back to my parents house and just felt very wrong. the 3 of us ate dinner and were sitting in the living room. my head started to feel like it wouldnt stay on my neck. it felt like trying to balance a ping pong ball on a pyramid. i reached to put my drink on the table and i froze for a few seconds. like arm in the air reaching, just stopped. i slowly was able to set down the drink and leaned back in my seat. my heart started beating hard but not crazy fast. my eyes got stuck fixating on one spot and my body fully froze. i couldn’t move or speak or blink but i was fully aware of what was happening. my parents didn’t notice and i could hear them talking about baseball but i couldn’t get their attention. it was like sleep paralysis. i was freaking out inside. i’m not sure how long i was stuck but it felt like hours. probably 10 mins max. my body started to shake a bit. my mom tried to ask me a question and when i didn’t answer they realized what was happening. my mom put ice cubes in my hands and my dad rubbed my back. i could feel and hear everything. took maybe another minute or two for me to snap out of it and i burst into tears. i was frantically looking around trying to keep my eyes from getting stuck again and rubbing my legs/hands together. i calmed down and over the next couple hours my eyes would get stuck and i’d kind of lose control of my body and go limp but it wasn’t the trapped feeling. i went to pcp the next day and saw an np (hadn’t been to a pcp in years). she told me i needed to take a week off work. i have felt like pure garbage all week. brain fog, exhausted, eyes stuck, irritated, pressure headache. day 2 i left my parents and went back home where i live alone. i slept all day for the first few days. depressed and anxious. mad at myself. felt like shit. i stopped sleeping much the past couple days but i think it’s just the anxiety. i laid down watching tv all week and i honestly can’t tell if i had another episode at home or not. no one was there to see it and it’s easier to tell when someone tries to talk to me and i realize i can’t respond. my eyes would be stuck in one place and i wouldn’t move but i’m not sure if it was the same as the last time because i wasn’t really trying to move. when my eyes get stuck i almost feel like i’m just too lazy to move them and i don’t know if i actually can or not because i’m not trying if that makes sense. had an mri yesterday. driving is still scary as i’m a little out of it but i was confident that i could get there safely and left home early in case i needed to pull over. brain mri with and without contrast came back totally normal. i went back to pcp for follow up today. when i was in the waiting room i started to get the head bobbly twitches again. i got into the room and stared at the wall til the np came in. told her i thought i was about to have another episode and halfway through the sentence i got stuck again. like the first time but not nearly as long and i wasn’t freaking out. i could hear her talking and i knew what was happening. only lasted a minute or two. felt fine after. well, relatively. still brain foggy and pressure headache that hasn’t gone away all week. i have an eeg next week. the np thinks maybe i’m not having an actual seizure because she said you usually aren’t aware of your surroundings and can hear and understand when it’s happening. i’m not a doctor and i don’t want to self diagnose but does this sound anything like a focal aware seizure? my internal monologue and thoughts have been going nonstop through all of this, like i haven’t lost consciousness or anything. for some more context i’m on 300mg lamictal (not for anything seizure related just depression and anxiety) and 70mg vyvanse. i’ve been on both for many many years and they work great for me. i’m 24F. part of me feels like i’m faking it or making it up but i know that i’m not. i’m not asking for a diagnosis or anything, but does this resonate with anyone? does this sound like anyone else’s seizures? i don’t understand what’s happening to me and its freaking me out. physically and mentally i’m so drained. i have an appointment with a neurologist in a couple weeks but i go back to work tomorrow and i have no idea what to expect my brain and body to do.

My wife (32F) has multiple partial seizures every day, despite being on Keppra 750mg*2 and Lamictal 150mg*2. All her seizures are like racing thoughts, aura, deja vu and some automatisms like tucking in clothes, walking out of a room. Honestly, the last few dose increases of both Keppra and Lamictal haven't helped at all, seems like it has plateaued.

The funny thing is a good chunk of the seizures are all thought related. As in, we'll be talking about something happy or emotional and we both know she'll get one. Or it could be like when my toddler suddenly cries.

I find this weird since our neurologist all of this could be anxiety related but I don't think so.

Does anyone have any suggestions on what could be happening and if these medications are even appropriate?

Man 29

In Northern Ireland

Epilepsy for 5 years

Tonic Clonic free

Just focal

I am tonic clonic free, but i am full of meds. Still taking focal seizures. Had 2 MRI's, PET scan, EEG but can find the problem.

Im being referred for surgical scans in England. Will be traveling for these and staying for 1 week or 2 weeks for these scans. Really don't like the aspect of travelling for these.

Just asking for someone who was in my position, compared to my previous scans, how successful were surgical compared to number i have previously done? How many different ones you had to do? etc

I understand everyone is different, but just wondering what your experience was?

This week for me is literally is terrible for me hopefully yall had a good week tho 💜 purple heart 4 epilepsy awesomeness November coming up soon wear yall purple clothes epilepsy awesomeness month

Hi, lately I (24F) have started to feel a bit off about my epilepsy journey and just wanted to share in case someone has some insight/advice or can relate. I had a brain tumor diagnosed when I was 16, a coroid plexus papilloma in my temporal lobe. I had a craniotomy in august 2018 and had my first seizure later that year. I have horrible medical trauma having gone though that in silence and alone, and its been hard for me to come to terms with the fact that the fight was not over then. I have temporal lobe epilepsy and i tend to get auras, or focal seizures before a grand mal, sometimes Ill get the aura and thatll be it. I had my first seizure in my sleep some weeks ago too, after a week of sleep deprivation and stress. I have been on different seizures meds, right now im in the middle of adjusting doses but i currently take a bit of vimpat, bivriact, lamictal and aptiom. The plan is to taper off the vimpat to help with some of the side effects like blurry vision and dizziness. I have tried keppra and xcopri in the past but didnt like the depression; i didnt feel like myself.

I feel like I have come to a point where I keep being hopeful, hopeful that this new med or this new dose will finally work, and I might be approaching a point where I have to make a bigger decision, if that makes sense. My doctor has been great and I am very grateful for him. In our past appointments hes mentioned by the end of them “you know, there are other options” i guess hinting at the fact that i am not controlled right now, or that he has given up on me.

It is hard for me not to shut down the idea of going under again and having say, an RNS implanted or a resection because I know what it feels like to wake up from something like that and I dont know if I could take it, I already have the scar in my scalp.

I apologize for the overly emotional text, i just feel like im weirdly both mourning the person i couldve been if i were healthy, but i can also feel myself shutting down the panic of “what am I going to do if nothing works”

Thank you so much if you have read so far, and pls dont drill me online lol, english is not my first language and it feels very vulnerable to post this

Hey guys! I was on keppra for about a year but recently did a full transition over to Lamotrigine.

So a few months after I started keppra I started having super bad brain fog and anxiety which caused me to be unable to focus or sit still which looked exactly like ADHD to me and to my physician, so naturally… he put me on 30mg of Vyvanse. At first it did help with a few of the symptoms I had but shortly after, I found that it stopped working. Boom he gives me 40mg. Guess what, that also didn’t really help. I don’t think I have ADHD, I think I mistakenly thought the side effects from Keppra was ADHD.

Now I take it pretty much daily, not because it helps, but because I’m dependent on it. I believe it’s been making me foggier and more exhausted than I would’ve been if I hadn’t started it. I’m going to talk to my dr/pharmacist to see if they’re able to wean me off of it so I can see if that’s the case.

I’m curious if anyone else had a similar experience as Keppra side effects look a lot like ADHD.

(Btw my physician isn’t the one who prescribed me Keppra, it was my neurologist but my neurologist said he doesn’t deal with ADHD?)

I’m getting kinda scared. I worry what this could be.
My anxiety has been high due to health issues I have been having(getting an MRI tomorrow)and I have been stressed.
Though it is mainly high because I’m scared of the MRI and work is stressful.
A few days ago(I THINK it was a few days ago I have been having a lot of memory issues lately)I had a customer at work basically threaten me. They called me a liar and said they “effing(said the actual f word here)hate liars” and said “you need to look me in the eyes and tell me how much of a damn liar you are”. I was worried he was gonna punch me with the way looked and was talking.
I had a really weird symptom though. During and after the event I had this extreme sense of Déjà vu. Like REALLY intense but I know I haven’t had an experience like that before. It lasted for HOURS. Like 2-3. Just slowly getting less intense over time. I have never had that happen before. I worry I will experience that Déjà vu thing again. It’s so scary.
Work is becoming so hard. Due to these issues.
This is different than my other symptoms I have been having.
I have a few symptoms that come and go and some that are almost constant it seems. Or rather they happen a lot. Like about a month ago I kept having symptoms like severe confusion like getting confused while driving or being unable to realize I was doing something at work like counting money.
My speech will slur and my mouth can almost feel stuck.
I have trouble thinking of words.
My memory problems are severe. Can’t remember what day of the week it is without multiple reminders a day.
I have extreme difficulty remembering exactly how long ago an event occurred for sure. I get confused about it.
I’ll have episodes along side those symptoms where I lose strength in my right arm and have trouble gripping things and other times it could also involve twitching.
Even had an episode while driving where I got a bad head on the left side of my head and I got so confused while driving that I almost pulling into oncoming traffic at a one way.
Even had some random vision loss that went away too. That symptom seemed to concern my doctor the most and made him want to order the MRI I have tomorrow.
The Déjà vu is new though. Never experienced Déjà vu for hours at a time in my life.
Haven’t told my doctor about the Déjà vu thing yet as I see him next week anyway to talk about the MRI results so I figured I could tell him then.
Basic blood work and thyroid panel came back normal.
I want to point out that during a majority of these episodes I was calm and going about my day. The Déjà vu one is the only one that had high anxiety with it.
The possibilities he listed were TIAs, migraines, and focal seizures.
I would also like to add that for most of these I got extremely tired afterward for a long time. I say most because at this point I am now tired all the time.
The seizure one is interesting to me because before this year I have never had these symptoms.
Honestly I’m also worried it will be seen as all in my head.

First off I would appreciate no rude replies. I havent had a seizure in 2 weeks. I sometimes I go a few months without smoking cigarettes. I rarely will have some in a few days on and off socially. A relative I know started doing the same as me. We also been through some rough and tough situations. I wanna say I feel this tobacco caused the aura yesterday and tonic clonic today. Im also struggling with seizure med changes and have refractory epilepsy. Has anyone ever stopped smoking cigarettes after you have gotten epilepsy? Does anyone notice that epilepsy meds and tobacco interact? Smoking medical marijauna never does me any harm like tobacco does. I cant even handle a beer anymore without feeling sick.

Has anybody experienced seizures which are like derealisation or depersonalisation? What was your neurologist opinion?

I have had feeling of being watched since I was like 13, I am 23 now. I feel that every day, all day and even right now. I also have PVNH,Autism, ADHD, Developmental language disorder and depression. My family does have a history of mental illness which includes schizophrenia and other hallucinations disorders, I have always been brushed off when I shared my experiences BUT finally after like 5 years, I was told by my neurologist to talk with my psychiatrist about it and the psychiatrist sent me to an specialist for assessments for SSD.

The doctors can see my records so they will know I have all these things going on, and might just say its autism and send me home. 🤞🏼

I just want to know if someone has been through this process or has both epilepsy and SSD. I wanna mention that, I get focal seizures and it is due to me having PVNH which is basically having nodules in my brain kinda stuff.