I know I have yall, I know you all understand the despair we can go through, but in the real world, offline, I feel obsolete and non existent. I dont really have anybody. I'm just stuck. Stuck and in misery and fear, alone.

Idk how to explain it usually feels like you’re zoning out something like that and it’s so frustrating

It always seems like i'm doing good then boom. Nope. It's been 15 years since I was first diagnosed. I have been on so many medications, had multiple surgeries, but nothing works and I don't know how to not just sit here and cry sometimes.

Sooooo I had the lovely experience of having a focal last night - after being on a new med for over a month - and was able to perform a terrifyingly high amount of actions requiring motor functions. I put away some groceries and went to feed two dogs, then went to the bathroom. I remember starting to put away groceries before it happened, but I have no fucking clue how my body was able to get the dogs fed based off of muscle memory, and I’m kind of fucking scared. Like, what if I’m just fucking walking and I decide “well, it’s time to cross the street into oncoming traffic”? Has anyone done way more stuff than they should be able to during a focal seizure? I need some support.

Hi... I'm new here, and new to Reddit in general. I just wanted to share my story and rant a little.

I'm 29F, and in 2017, I started having episodes. At the time, I didn't know what they were. I used to call them "freezing episodes" because, during those moments, I felt trapped and desperate because I couldn't move, speak, or think straight. These episodes used to last anywhere from 1 to 30 minutes, and afterward, I always felt weird and lightheaded. When they first started happening, I wasn't sure if I wanted to tell the people around me about them. Idk, I guess I felt ashamed.

Months passed, and eventually, it happened in front of my older sister. She was terrified. We told our parents, and then we went to the doctor. I had an EEG and blood tests, but nothing showed up. The doctor said it was just anxiety, which made sense to me because I was in my final year of college, working on my final project and doing an internship, so, sure. I went to a therapist I didn't like for months, but it didn't help at all. The episodes continued.

And just like that, seven years passed, and I eventually got used to living with these episodes. Somehow, they became a joke among one of my sisters and my friends. I didn't really like it, but it seemed to lighten the mood, even if just for a little while. My mom died in December 2022, and I moved to São Paulo in March 2023 (BTW, I'm from Brazil). I didn't live in a small town, but the city wasn't known for having great medical care. As usual, I kept having episodes, although much less frequently than in previous years. But it wasn't until May 2024 that I had a stroke, and everything changed. I went to a neurologist and had an EEG, blood tests, and an MRI. The MRI revealed that I had a cavernous malformation in my brain, a condition I was born with that involves abnormal blood vessels and can cause bleeding. And that's exactly what happened. By then, I was taking Keppra and Vimpat, they helped a lot. At the end of September of the same year, I had brain surgery to remove the malformation and clear out the blood. Everything went well, and my recovery was good. My doctor told me to keep taking the medication for at least another two years to prevent further episodes, even after the surgery, just to be safe. After that, we could see how I would do without the meds.

In September of this year, I started tapering off the medication with my neurologist's permission. The process was gradual and took four weeks. So, last night was my second day without taking any medication, and it happened again. I've always had focal seizures, and this one was much shorter than the ones I used to have.

But it was so frustrating. I was so excited about finally being able to stop taking medication and not having to worry so much about losing control of my own body. I thought I wouldn't have to feel that same fear I had always felt whenever it happened.

I know that, considering the possible outcomes after surgery, these little episodes might not be the worst thing that could happen, but I still feel sad. I'm already struggling with my speech, my memory is awful, and I'm extremely sensitive to noise and light. I just wanted this to be the one thing I could finally have control over.

I have had epilepsy since 12 years old . Had a kind of a normal life until I was 38 trying for a baby. Was taking sodium valproate. They took me off it the baby thing didn’t work and won’t put me bk on it. Going in shops scares me bright lights and walking not far then get scared of having one is that normal and need advice to be normal agin. I’m on 300mg of lamotrigine it’s not helping my side effects.

Having to show up for work 6 days a week and not being able to drive can have a lot of mental strain that just sits. I work at a big factory and don't live to far (5 miles) and have a co worker who will take me to work and take me home, when he has his girl friends car, his is sitting broken down at my house. If his gf needs the car and has to drop him off he texts me before work and I have like 4 co workers who I can ask and they will take me.

So anyways I'm sitting waiting for him to show up and he is late, and I go into the message app and there is a message that I didn't see that he isn't going to take me. Oh shit its too late to call any other co worker because they are already at work.

My neighbor is an old grandma who always is nice and says she will help out anytime. So I call her and she doesn't answer. So I walk over to her house and knock on her door. Her dog barking wakes her from her nap. I tell her my ride didn't show up, she puts on her shoes and tells me to get in her truck. Tells me anytime. She always says that but having epilepsy for this long, I know that for a lot of people they don't really mean that.

Just nice for all the anxiety that I had walking over to her house, I thought that if she was home she would do it, but I didn't expect to see the excitement or joy that she had helping me out.

Recently been diagnosed with Epilepsy… had my first seizure at work and it was a grandmal. I am 29 and I was just starting to get my life together and working at succeeding at a job I really love… now I can’t work for who knows how long because I keep having seizures. EEG came back saying I have abnormalities in my left temporal lobe. I wake up every day with migraines and this is making me so depressed. (I already have BDP AND PTSD and anxiety) I’m going to have to go on disability and I just feel worthless. I feel like my life is over. Does this ever get better?

This isn’t a promotion post, just want to talk here.

I won’t lie, I’m really scared. I guess I never thought I would be doing something like this. However I just don’t want my epilepsy to hold me back. The charity is for meningitis, which I think is an important thing to spread awareness about, especially because it’s common for students like me.

Epilpesy can’t hold me back. At least, I’m going to try my best to not let it. I want to put some good in this world. I want to try to live life too. I just want to do things me a few years ago never thought I would be doing when I first woke up with paramedics standing around me.

Just hoping I don’t have a seizure. I’ve been tonic clonic seizure free for a few years, so I hope I’ll be ok. I’m nervous though.

Wish me luck.

Just wondering, when people are seizure-free, do they ever get to the point where they feel normal, or are they always worried that it might happen again?

I always feel on edge whenever I experience any sensation, whether that’s nausea, feeling overtired, etc

I’m 8 months seizure free but over the past week I’ve been ill, run down, tired and on top of that, stressing because I may have a seizure because of it

I’m not sure if it’s just me but does anyone else with epilepsy have really bad memory? I don’t know if it’s because of the medication, the seizures, or if I just have terrible memory help 😭😭

Don’t remember if I took my night pills or not…(my fault on not re-filling my pill box) should I risk the consequences of double dosing and take my PM pills anyways? Thanks in advance!

oh and for more info I take Briviact, Xcopri, and Zonegran at night!

Do you have and wear any medical ID bracelet/ necklace? I have had status epilepticus twice am wondering how many people on here wear medical ID accessories.

My partner has epilepsy and she has been taking lamotrigine for the last 7 years. She had 1 seizure around 3 years ago and 1 this morning. She had a massive one, stronger than last time. Her face turned blue, gasping for breath and she kinda puked as well.

Just before going into the seizure she asked me if she took her meds last night and took her dose this morning and woke up. She takes them twice before sleeping and in the morning. She has a big last night involving alchol (maybe 7-8) shots of alcohol in total including all drinks and cocktails. She slept less tha usual, she usually sleeps 8-9 hours but it was 7 today. So I know that less sleep, alcohol and missed dose is the worst combination for her.

So my question is whether she needs to take her dose again as I suspect she might have puked it out?

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

I had to switch generic brands on my brivaracetam because no pharmacy could get the one I had been taking. I'm always sensitive to med shifts of any kind so get the same generics, but I was out of options.

The new one has different binders and the meds are peaking HARD between about 90 minutes and 4 hours after taking, and a few hours after that I'm crashing disastrously - pretty sure I had at least one seizure last week. Obviously now my clock resets and I have no real assurance that I'm controlled, plus the side effects are also swinging constantly. I feel as if I'm always overmedicated or in withdrawal.

Does anyone have any tips on slowing down absorption? Already taking them with food and not seeing much effect. Breaking up the doses would involve splitting pills and I'm hesitant but open to the idea. My neurologist just basically said there's not a lot they can do , which I get, but this is bad enough that if something doesn't change I'm going to ask for a medication change, I can't be this sick, tired and incapable all the time.

Today I had very difficulty at rand moments: This sudden wave hits my mind which weirdly somehow I like and frightened off at the same time. I can't even explain it. I feel like my brain enters a new dimension. It feels like watching a horror movie, liking for thrill yet scared of it. When my mind hits this state I forget what was I doing, where am I, and mistake things and directions. Some kind of strange deja vu thngs float around while I have subtle half distorted vision. I am just afraid that what if this happens when I am doing heavy work, crossing roads or driving etc. Also my heart beat rises rapidly during this time. As I mentioned, I also like this feeling without a proper reason. Does anyone relate to this?

Does anyone know of any cheap options available? I can’t afford that much…and really want to get one. And, what do I put on the bracelet? If anyone has any pictures of theirs they’re willing to share lol that’ll be great!

I have been in a more active season of seizures recently and with that my depression and sewer sidal thoughts and ideations have been much more prominent. I cry intensely after some of my seizures and migraines and looked it up. There is some drop in serotonin & dopamine levels during these times. Ahh, okay. I call it seizure weather or season when they are more active and I have been in a season for the last few weeks and this time the depression & ideations have me struggling as much as my physical health. I think mine are Focal Seizures where I get an aura or sensation first then it feels like while I’m on pause while the world & time goes on around me in a really weird & uncomfortable way. Strange gut punch and gravity drop sensation with nausea. I’m kinda aware of my surroundings but I can’t do anything about it if something bad was happening and I needed to act, I’m just stuck. My face gets itchy, eyes get blinky and my face twitches a little. I may experience what feel like hypnic jerks a little further into it. Still waiting for a 48 hr EEG for more conclusive results. My first two EEG’s inconclusive they were unable to capture activity. I feel so weird because as I talked to my neuro about it, just felt like it’s not standard Grand Mal so we don’t have anything to discuss. Feeling lost and out of control. Has anyone else experienced any of these things?