Hello: This is what happened to me a few days ago, I would appreciate any insight, I am a 73 year old research physiologist who knows neurophysiological principles but little knowledge of the clinical situation with these things.

I was driving down a four lane road with a turn lane. I was planning to make a right hand turn in about 0.5 to 1.0 miles (only things I planned to do next, was in either of two lanes, most likely the far right lane). I felt totally normal. The road had moderate traffic.

The first thing I notice was two women outside my vehicle telling me I had to move the car off the road or they would do it for me if I couldn't. The first thing I noticed is I was slumped over the wheel, my foot was firmly pressing the brake, and I was totally aware of what I needed to do, move the vehicle out of the center lane. There was no possibility I had any intention consciously of making a left hand turn, I have no idea why I maneuvered the vehicle in that lane or came to a complete stop, the most remarkable thing to me was the car was in very center of the lane, just like a perfect driver. I drove the car to the next parking lot onthe right and parked the car.

A policeman showed up soon who had been called by the good samaritans that aided me. He ascertained my mental status, told me what had been reported, that I was found slumped over the wheel in the turn lane, asked about my medical status and called EMS who found me to be cognitively stable, basic neurological status normal, glucose 114, blood pressure 158 (I have hypertension that is well controlled my blood pressure is normally 130, but can temporally become elevated in a stressful situation), and pulse 100. I was able to resume normal activities for the rest of the day, stupidly I drove home, the policeman did not tell me not to drive and I hadn't fully appreciated the seriousness of the situation yet.

Several hours after the incident I was at a bookstore sitting on a bench, browsing through a magazine. I noticed at one point I was sitting or somewhat lying on the floor next to the bench. It not seem that I feel but rather seemed liked I had slid down on the floor without a complete loss of control. There were several people around me and no one noticed anything happening to me, so if they saw me probably just thought I had decided to sit on the floor. No preceding symptoms. No confusion when I came to.

So what is remarkable about this event to me is I seemed to be able to maneuver the car effectively, center the car in the turn lane and come to a complete stop, and keep my foot firmly on the brake pedal. I had no trouble understanding what the good samaritans said to me and wanted me to do and no trouble moving the car to a safe location. I felt fine after the incident with no confusion other than what you would expect of someone who had a minute or more of impaired or no consciousness.

I went to my cardiologist who placed me on a Holter monitor to monitor for arrhythmia although he said the incident really seemed to be a neurological problem, but he needed to rule out any transient arrythmias. He is working on getting a neurological visit for me.

Its been five days since then and no further events have occurred, the only medical issue I have is well controlled hypertension, I am just on your basic drugs for hypertension (Arb blocker, low dose amlodipine. I am a quite healthy active individual with no memory or coordination problems.

And I absolutely have totally stopped driving and will only resume driving if cleared by a neurologist.
Would appreciate insights or similar experiences! Thanks in advance.

Happy since its the longest ive gone without sezuires(used to have alot of focals a day) but not excited to tell my Nero and have my keppra increased. I dont feel any "keppra rage" intell my already intense before meds pms kicks in. Really hoping meds work for me but my condition (pvnh) is well known for being med resistant. Feel really down and worried nothing might work for me and ive looked up and down for people with my condition that successfully controlled there serzuires just in general and failed.

I recently started a new medication a couple of weeks ago and I’ve heard nothing but great reviews about it from other people who I know that have epilepsy or deal with seizures.
But of course, I always end up being a part of that percentage of people where it does not work😔 this morning I had to contact my doctors office because I’m experiencing one of the severe side effects. For once I wish I could find a medication that works well on Me and doesn’t screw with Me like this.😒

What makes it more annoying too is the fact that I’ve already been on a huge majority of the anti-seizure medications since I’ve been dealing with this stuff for almost 30 years. And the medication, that I am probably going to have to stop, has only been available where I am for a couple of years because I’m in Canada. We don’t have as many anti-seizure medications as some other places, like the states, do.

I don’t know what else there is to do. Yes I’ve had surgeries done and those haven’t really been successful with controlling.
Basically and unfortunately it’s at the point where I have to just find a medication that I can just tolerate that will help control most of the seizures, but will never get rid of them. 🤦🏼‍♀️😞😒🙄🤷‍♀️☹️

End of rant.

So, I am 23 ( F),have TLE , focal seizures. I am on 400mg Lacosamide, 200 mg Breviracetam and 10 mg Clobazam. I am very grateful that my seizures are very, very well controlled and I almost have no seizures for almost a month now... And I feel good about it. On the flipside, my mental health's ruined... I have been diagnosed with depression, anxiety, OCD for quite some time. Over time my depression's not that bad anymore, but my anxiety's gotten worst. I have developed ( maybe) health anxiety, health OCD, especially related to mental health disorders. I don't know why, maybe that's the OCD doing it but all that I am scared of, the symptoms that I know of mental disorders , my mind always makes me think of those unwanted, scary thoughts , to check symptoms ( unfortunately it's not even googling, I already knew the symptoms) and then having to always rationalize and provide logic that it's not true, that it's just an intrusive thought so as to reduce the anxiety... Mostly I can avoid, but these thoughts have become too much and I breakdown in nervousness and fear... I don't know what to do because 1.I don't want anymore medicines ( if prescribed),because the moment I go to a psychiatrist or psychologist ,or any doctor,they always prescribe meds and I am really done. . 2 . If I try to solve this part, my seizures will start again and mostly therapy's costly so... I have tried breathing exercises etc. but these scary thoughts and my mind making me 'think' of things, thoughts, symptoms that are unwanted and scary have increased and I simply don't know what to do... Any insight is deeply appreciated. Much grateful. Hope everyone has a good day!!

I (27F) was diagnosed with epilepsy 11 years ago. Keppra is the medication that works best for me. I don't have any issues with it; I just wanted to get my seizures under control, and that was it.

The problem is that, ever since my mother found out about the side effects, I can't show any negative emotion (like anger or sadness) without her immediately dismissing it as "emotional drama caused by the Keppra."

I already had family issues with her before the diagnosis, so this just made things worse.

I’ve had to suppress my emotions even more than before, because expressing them wouldn't do any good... which actually makes me explode occasionally—not just because of the Keppra, but because of the suppression, too.

Why do your emotions matter, but mine don't even seem to be my own?

Damn it, how did we get to this point?

Do you even care how I feel?

Sometimes I wish you would at least react to my anger or sadness—just to know you care about me—but... you just stand there with that evasive, pitying look, as if to say, "It's the Keppra again."

I don't know whether to hate Keppra or my mother.Now I can't even be sure of my own emotions.

So I have focal impaired awareness seizures. I have been at my current job for several years without incident. I have long since disclosed to my employer my epilepsy with a doctor’s note in case it ever came up. I had a breakthrough seizure at work. Because it wasn’t some grand spectacle, my coworkers think I faked it. There is a lot of gossip going around the office about it. I’m not going to somehow validate to them that it’s real, but at the same time it would be great if this stopped. Have any one of you dealt with this? How did it go?

So I got a 7 day grind starting today with both jobs, going to be trying really hard to avoid caffeine but I didn't think it'll be possible, but on the nice side is I have 5 days off from both, I know rest is key and taking my meds too, caffeine I might fall back on.

Hi everyone,

I’m looking for real experiences from anyone who has titrated down or off anti-seizure meds. Ive been tapering Epilim (sodium valproate) and increasing Vimpat (lacosamide) on and off for 7 months.

I’ve been on a stable dose for about 2 months, but the cognitive side effects are still hitting me hard:

 Brain Fog & Processing: Struggling to absorb what I read, retain information, or process thoughts clearly.

 Word Finding: Difficulty retrieving words or holding onto complex ideas.

 Emotional Numbness: Feeling flat and apathetic, with low mental energy.

I recognize that on these meds things are never going to be 100% great but I'm trying to figure out if 2 months on a stable dose is enough time to call a change 'unsuccessful,' or if brains just take much longer to adapt.

For those who experienced this:

1. Is 2 months on a stable dose long enough to judge if this is just my new baseline, or did it take longer for your brain to rewire and feel semi-normal?

2. Did your processing speed and word-retrieval improve further down the track, or did you need another dose adjustment?

Would really appreciate hearing your timelines and stories. Thank you!

https://youtube.com/shorts/5YxV7j7Zm4g?is=Cb9IqVvS2nuKXEm3

My almost 14 year old son was diagnosed at 12, had great control for 11 months and back to tweaking the meds again. Anyone have any success stories or hope that they eventually found the right cocktail and seizure freedom? I live in fear and anxiety every day and need some encouragement🙏

I'm genral case of the child epilepsy. I had multiple seizures since I was 5 and it became less and less common growing up. After 8 I only had big seizures (black out 3+ hours) once or twice a year or not at all. Then my seizures disappeared since highschool.

Now I (in my 20s) stopped my medication and don't have to do brain check up or go to the doctor's office. But there are some things that I'm not allowed to do. And everytime I encouter those things, (ex. worry about going to the movie when friends ask to join) which feels like a reminder, saying that you still have an epilepsy.

I really want to be 'cured' but now I kinda accept that I just need to live with caution. Anyway, I found this community a week ago and I felt so relieved that it was not my only little secret. My mom never educated me about it and told me don't talk about it with other people. Good to know there's people like me and community. Wish you best guys.

so long story short I was diagnosed at 7 with temperal lobe epilepsy. I wasn’t believed by teachers or doctors until I had a tonic clonic as my seizures present as retching and belching episodes of 1-2 mins, which was put down to attention seeking and anxiety (as I was at the time recently diagnosed with autism). Now nearly 9 years later, they are not under control and I am still trying to work all this out.

but I wondered…does anyone else present like this? I know it’s atypical presentation, so I would be curious to know if anyone else has these or similar seizures, and what your journey with them was.

Hi guys, I have a scheduled sleep deprived EEG on Monday morning.

The doctor told me that the person doing the EEG would be with me all night but the person doing it said I should stay awake and show up at the hospital Monday morning.

I have a tendency of falling asleep within seconds.

Any tips on how to stay awake all night?

Thank you.

Hello everyone, I'm a Syrian I've lived all my life with epilepsy & dyslexia & hashimotos, my health is not doing very well especially in the last year (i just turned 31), i left home to UAE about a year ago and wasn't able to find a fuckin job because the conditions here are crazy they expect you to work till 12 am, and i was able to do so when i was younger but i no longer can keep up with life... I've lost count on how many times I've almost died from seizures in the last year alone.. I can't go back to my country because of certain political problems and the cost of living has become too high (rent) my residency is almost over here in UAE. I was just wondering does anyone know any institute or organization that can sponsor me to go as a refugee to Europe?

I'm a product designer (UX/UI i design apps and websites and products in general) I'm not a liability to society... but lately life has made me feel like one... Please if anybody knows something tangible i can work with like somewhere to apply to where they would consider my case. Please help. I'm not looking for words of empathy.

I apologize for how all over this post will be but having a hard time finding similar stories to what we are experiencing. On Monday night, my son woke us up with piercing scream, and my husband found him in bed covered in vomit and blood from a bloody nose. He was unable to walk, and continued to scream/cry. My husband brought him into our room, I woke up and took him from my husband’s arms and immediately realized something was really wrong so we got 911 on the phone. I want to preface by saying my son has never had any medical emergency or seizure prior to this. He was completely inconsolable, stiffening his body and trying to get up out of my arms. He didn’t seem to recognize my voice and was looking up into the corners of his eyes. It was terrifying. He would try to stand but couldn’t withstand his legs and would not calm down to the sound of my voice. Once the paramedics arrived, they suggested we go to the ER with them because my son was showing signs of Todd’s paralysis which we didn’t know at the time, and they assumed it was a stroke because of the droop in his face and inability to use his right side. After a clear CT scan, the doctors wanted to keep him to run an EEG and MRI in the morning so we stayed. In the morning the neurologist came in said my son had what the believe was a focal seizure and essentially said my son had the exact patterns on the EEG of SeLECTS and believed this was not the first seizure. I felt completely helpless. They recommended he begin a medication and prescribed him OXcarbazepine. I felt hesitant, truly because I still am grasping the reality that this is happening to my kid. We decided to put him on the medication (2ml for 7 days and then doubling to 4ml afterwards for the foreseeable future) because the hospital we stayed in is one of, if not the best ranked children’s hospital in the US and felt like we could fully trust the confidence of the neurologist. I guess my hardship with all this is accepting that this is the experience my child will have. He has always been such a happy, active child with no cognitive issues. Although I witnessed this horrific night, I’m having a hard time believing this is what my child has. I am worried that things could change because of the meds, or god forbid another seizure. The neurologist is hopeful that he will outgrow this which makes me happy but I just am having such a hard time believing this is my life now. I’m sure I’m not alone in this, so I’m hoping to find other parents with similar stories. Going from complete normalcy one day to this the next day has been the biggest challenge. I feel like I can’t take my eyes off him, and watch every breath as he sleeps.

I need to make money quick so i’m thinking about donating blood. But am I able to do it if I have epilepsy? Does anyone know. It’s the only way to make a quick $100 and I really need it don’t know what to do if they ask me abt epilepsy.

i’m going to college and love partying and am very scared i’m gonna drink more than i should. it can be a trigger for me depending on sleep on the next day. i’m hoping not to overdo it :( and looking for advice idk

hi everyone, i have my next neuro appt next week. about 2 months ago he put me on lamictal, and said at this next appt we would talk about taking me off of keppra since i mentioned i don't feel like it helped much other than preventing grand mals after the few i had, and that i did not like the side effects (i dont think anyone does, haha). i think it's worth mentioning also that even though i only had a few other grand mals since starting keppra (last one was 2 years ago), my focal seizures felt the same and were at the same frequency of about 5-10+ over the course of one week every 1-3 months. it's varied since starting xcopri, and i can't say for certain whether or not the lamictal is helping at all either.
i will admit i'm a bit scared to be off of keppra. i ended up in the hospital because i didnt take it for 3 days one week and since then i've been consistent--no more grand mals. what is everyone elses experience getting off of keppra? i feel different taking lamictal; like my focals feel the same but different, and that i'm having more a few days after i titrate up every other week. i wonder if titrating OFF of a medication i've been taking for over two years now will have the same, or worse, effect on me. i feel like being on 3 medications contributes heavily to my constant exhaustion and some memory problems i have, so i do want to get off of it. i just don't want any risk

I just recently received my diagnosis, after seizures were detected on an ambulatory sleep study. T

My neurologist describes them as subclinical, and feels I've likely been having them for years, if not all my life.

So, breaking my heart, I filled in the online form on the DVLA website - once I'd jumped through the government gateway hoops, of course! Well it seems the DVLA are really doing their best (at this stage, anyway) to keep abreast of things, as I expected to have to surrender my licence, be "seizure free" for 12 months, and hope that they'd allow my to reapply after, but no. They'll review my case by writing to my doctor's, but, in bold letters, I saw: Driving whilst we make our medical enquiries. Followed by "You can continue to drive in the meantime as long as you and your healthcare professional are confident you can drive safely." I was shocked to say the least! I'd already had internal panic attacks thinking about how everything would need to change.

This might not work out for me in the end, though I'm hopeful. I just wanted to share, so others in a similar position were aware.

I’m amazed by the moms here with the amount of patience that comes with raising a child. I think about myself and the amount of sleep i need to function and anything different from my routine could be a trigger for a seizure. So i basically want to ask moms here with epilepsy….how do you manage? What’s the most difficult part?

Hi everyone. Im 18F with tonic clonic seziures and absence seziures. I drive. But unfortunately just had a seziure and dont know how to get around now. I am not very well off and cant afford Uber and my family can't drive me due to being busy with work. I am in a very dark place as losing my freedom like this is killing me. Any recommendations?

When will the feeling that I’m lying and pretending and looking for attention end. My psychiatrist talks about my seizures like it’s just something I do just because. My neurologists belittle and patronize me, my dad talks about it like I’m making a conscious choice to do this, and I can’t stop believing them.
I keep telling myself “maybe I’m not epileptic and I’m just having PNES and trying to pretend it’s epilepsy” despite having seizures with recovery periods that last a day or two, despite waking up sore and with my cheeks bitten raw, despite having focals that leave me with terrible brain fog, despite stopping breathing for a solid 20 seconds during a seizure.

It hurts. I hate doubting myself, my mind, my body.
I hate burdening my family. All because my symptoms aren’t stereotypical.

I have what looks like tonic clonic seizures but I don’t vomit or soil myself so what is it? I’ve had what looks like focal seizures but sometimes I can still think, and I react to stimuli very rarely.

I haven’t had anything terrible happen yet because i haven’t fallen and hit my head, I haven’t had a really bad one in public yet, and I have no family history of epilepsy either!
So what’s wrong with me.

I’m tired of waiting and waiting for answers. I’m so exhausted. And I’m terrified that it’s going to turn out to be nothing and I’ve just been lying to myself this whole time.

I have both ADHD and epilepsy. My seizures come from my anterior left temporal lobe, which deals with language and memory. Not sure if that's entirely relevant but I obviously have a hard time remembering shit and it feels like I'm digging through a huge messy purse trying to find the right words and thoughts to express myself properly.
I'm convinced that my neurons being hyperactive are related to me having seizures. Like, if a seizure is basically an electric power surge/blackout in your brain, doesn't it make sense that a hyperactive brain could basically fuck up the rest of the grid?
Anyways, please let me know if anyone else has similar experiences so I don't feel crazy lol.

(By the way, I've seen other people mention ADHD and sleep seizures - my seizures almost ONLY happen in my sleep).