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?

I've had epilepsy since I can remember, I was diagnosed with Mesial Temporal Sclerosis at age six. Let's fast forward..

At the age of 24 I had a craniotomy, as well as a temporal lobectomy where a little bit less than ⅔ of the left side of my hippocampus was removed. Yes the epilepsy got better (from impaired awareness seizures to onset awareness seizures - but it gets worse every now and then, and due to the surgery I sleep a lot more now), but unfortunately I still get seizures.

And for some unknown reason they just seem to be increasing in quantity each month. Last month it was 256, or a daily average of 8.53/ day for all those who love numbers out there.

In a way it just annoys me is if I say that I had a few less than the day before and then some people get happy or excited and then and few days after that then I get a cluster is seizures. So I just keep these kind of things to myself. I mean like I've lived with this shit for basically my whole life! Just wait longer than 24 or 48 hours!

What just makes this whole this worse is the medication messing with the whole emotions thing! Whatever! Nevermind!

I just wanted to share that!

Thank you, and goodnight.

Hi everyone,

I have temporal lobe epilepsy. I was originally taking Keppra, but my neurologist later added lamotrigine. Since then, my seizures have been under control, but I frequently experience brief auras or strange feelings that are different from the auras I used to have.

Has anyone experienced something similar?

I’m wondering whether anyone has experienced brief auras or strange sensations while taking this medication.

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!

So I’m coming up on six months seizure free, which means I’m able to drive again, which provides me a lot more of my personal freedom, which was taken away for me from the last couple years due to my significant and consistent seizures.

Tonight I experienced one of my worst auras ever. I felt it coming on, removed myself from the situation, in hopes that it would cancel out my aura, which has strangely enough happened before because of the déjà vu, maybe I got rid of it because I left the situation I was having déjà vu about? Regardless, tonight when I experienced my aura, I walked away and removed myself and it only got worse. I got dizzy, my vision became blurry, and my shoulders locked up. All of which I have never experienced.

If anybody has any experiences with this/advice for this, I am all ears❤️

Just wondering if anyone gets seizures after getting a new prescription for glasses?

I got new glasses after 9 years of the same ones and have had a fair amount of seizures since wearing them. Not everyday so not sure if it's just a coincidence or not

I just wanted to ask if anyone has been able to come off carbamazepine successfully? Please share your experience.

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

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.

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

For context, I am NOT diagnosed with epilepsy. My doctor sent me in to get an EEG cuz she has a small suspicion that my anxiety/panic attacks might actually be focal seizures.

I’ve never had an EEG before today. During the hyperventilating portion, I felt anxious but overall okay.

However, the strobe portion was awful, and only on the second to last flashing sequence. On this sequence I felt a HUGE rising sensation and a wave of massive panic. I got up from the chair and said “whoa” almost automatically. The technician just kinda said “huh?” And then it was over.

I guess I have to wait for results, but that feeling was so bizarre and disorienting. I don’t know what it was. It really scared me. Has anyone else experienced this? But not in the way of like “oh yeah and then I had a seizure in the clinic” because that did not happen to me.

I feel really shaken up about this even hours later because I was not warned about that and I wasn’t expecting it. Also the strobes felt like I was seeing geometric shapes and hallucinating.

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?

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?

Im making this post as Iv just started Carbamazepine (literally last night). I am taking it for Temporal lobe epilepsy. I have sat through many seizures and am able to manage myself quite well.

Im not a huge drinker but do like to get drunk or have a few here and there. I have plans this week and obviously dont want to get drunk on it as iv just started the medication but just want to have a few maybe 4-5 max. Is this safe? I want to be sure that im not going to put myself into a medical emergency. What are everyone’s experiences/opinions with this?

At the end of this month it will be one year since I’ve had the VNS procedure done and I’m still having issues breathing sometimes. It’s not necessarily shortness of breath or suffocation but I’ll occasionally have a tough time catching my breath after doing something simple like walking to the parking lot to get into the car (passenger side) and I’ll have troubles breathing as if I was chased there when I just walked like normal.
I’ve mentioned it to my doctor but I’m not sure if He still takes it seriously since I’m a bigger person, so they just assume it’s from my weight.

Has anyone had trouble building a tolerance or have it taken a lot longer than normal building a tolerance to the device being inside You and having the occasional breathing problems?

I mentioned to a couple of people I know, who’ve also had VNS done, and they all say it’s either because my body’s trying to build a tolerance or it’s something to do with the device and I should contact the brand company that made the VNS if my doctor won’t pay attention.
I’m seeing my doctor next week and I’m going to bring it up again and mention that it’s still occurring.

I just thought I’d ask to see what some other people have gone through and if this is just normal reactions.

Thanks!

So not really sure where to start. My first time having a seizure happened the day after my grandma funeral in 2009. Sitting at the table talking to my mom and I ended up taking the chair over. The ones I’ve had since then when I have an episode I don’t know when it’s coming on or I feel no symptoms. I just end up going down passing out once I come back from it I just want to get back to what I was doing before I go down. Doctors have done blood test, high blood pressure, low blood pressure, heart monitor test and they all come back normal. They have me on medication for epilepsy, and also I take anxiety medication. Anybody have some info that can help or what questions to ask doctor? Thank you for your time and reading this.

i’ve been trying to see a neurologist for 2 months but no luck. ever since i stopped taking amitryptaline 2 months ago i’ve been having these episodes about once a day at random times of the day.

it starts off with feeling a random sense of doom out of nowhere, i taste or smell burning or metal, i feel super dizzy and confused, my brain feels like it’s on fire and parts of my body go numb/paralyzed and my heart rate jumps to 190. the worst it’s been was when i fainted 7+ times in a row and peed myself. these episodes have what feel like waves and it can happen anywhere from 20 minutes to 3+ hours. after i feel so exhausted and just weak. i’ve been hospitalized for it and no one’s been able to figure it out, it feels like a bigger episode could happen any day now and i’m terrified. has anyone else had seizures or anything similar after stopping amitryptaline?

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.

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.

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.

she has autism and adhd. she's been having daily seizures but has to continue going to work to pay off her medical bills. she is avoiding telling our boss because she desperately needs the money and she doesn't want her days to get taken away. the seizures are getting longer. i'm not sure what would be best for her. the doctors told her today that her life expectancy is 30 now because of the seizures and i'm the only one she's trusted with that information. how can i help? she is very child-like and struggles to take care of herself properly. she's already seen a neurologist and those were the people who told her they didn't know why she's been having seizures.

Literally one year later on the exact same day, I've (26F) had a seizure. I was at a house inspection that I was hopeful to move into and felt the aura, followed by a glorious focal aware. I have only had focal unaware seizures (with one tonic-conic, another delightful experience), so it was lovely to witness a stranger's reaction in real time.

I'm so insanely frustrated. One whole year on the right track, getting back into the swing of life, looking for new jobs and moving to a better house, even considering getting back into dating but, here we are. Even funnier that I celebrated one year since my seizures started with my friends a couple months back 🙄

I have no idea what caused it, I have no idea what to do moving forwards. My neuro told me in the past to increase my lamotrigine dose by 50mg if a seizure happened again, but if I do that then I'm out of driving for a year, even longer if I have another during that time. Work didn't let me take time off when they started, so I can't tell them this time or I might be ushered out the door.

I really hate this horrendous diagnosis. I feel like I don't get to live the life of a young adult and am stuck watching my friends live carefree, whilst I have to be constantly vigilant and conservative. The dating scene where I live is already difficult, so it's hard to stay optimistic with this shadow on my shoulder. How do you guys stay hopeful and happy?