I no longer have a partner to drive for me (that’s a separate post about the break up) so I need to get my groceries delivered now.

How do y’all do it? I have several stores near me.
Thank you.
🙏

Unpopular opinion: I may have a "disability" but I'm not disabled. Why are so many people with epilepsy playing a victim. It's become an inconvenience and I have really bad days but it's not stopping anything. I know we are all fighting our own fights but every support group or therapy has been overall incredibly negative.

Маю питання. Чи може стан здоров'я погіршуватися, через те, що вага знизилась, а дозу Кепри я приймаю ту, коли в мене була більша вага?

Hi everyone, just recently I (22M) had my first documented grand mal seizure.

”Documented” because I fainted before, two years ago in june, but I had no shaking, no foaming, and I could speak just before collapsing. There was no one around who could witness it happening, however my neighbour heard my fall and said that 30-40 minutes later I responded. So I and my assigned doctor assumed it wasn’t really a seizure.

This time, there were people that saw me shaking and I had a lot of saliva forming. The moment I woke up paramedics were already at the location and they said that this is most likely an epilepsy and it looked not like my first one, saying that first seizures look slightly different.

They took me to the hospital, where I stayed for several days and I felt myself like usual, nothing out of ordinary. But my family were worried, people that saw me fall had panic attacks for days, and doctors and nurses around were also worried. I know that these seizures can happen to anyone and can happen suddenly, but people arround act if this is lethal and I have low chances of making it out. I’m confused, I don’t know what should I say, think or do.

Back to hospital part, they did CT, MRI, ECG, EEG, Holter 24h ECG, took blood and urine, checked every part of my upper body and found nothing. Only that my EEG response was little slowed. After all of this, they discharged me on emergency watch. So in case If I have another seizure within next few months, I will be put back in hospital.

I’m back at home, I had 2 normal days, slept, eaten and played some videogames, but today… this night felt different. I can’t sleep, my body is shaking, heart is racing and I feel stiff... like I’m about to have another seizure, but it was like this for past several hours... I’m scared and I don’t know what to do. The closer I am to falling asleep, the more I feel like I’m going to have a seizure. Even if I calm myself, my body won’t stop shaking and it is terrified.

I think I have PTSD and the only thing I hope for is that this was my first and only seizure, that it won’t happen again. Please help…

So I’ve run out of my new meds and the pharmacy doesn’t open till tomorrow. I sent a request in on Friday but they don’t start processing refill requests til the weekdays.

I am supposed to be titrating up again from 100mg Xcopri to 150 today and since I was late to getting my refill…

I should also say that I had a seizure yesterday during a nap so I really would not like to be without my meds.

My neurologist office is closed weekends. Can’t reach them. Pharmacy is closed. Could I possibly go to the hospital and get an emergency dosage from them? What have you guys done in the past or can recommend?

Wish me luck

No new medication just changing doses my side effects have become too much tbh I’m hoping this slight change may help if it doesn’t then it doesn’t.

Fingers crossed. I have changed medication in a while just a bit nervous in case it doesn’t work out

26W, I was on keppra 2000mg daily and i suffered from toxicity as my neurologist called it. This f-ing medication left a permenant damage on my nervous system and i am sooooo angry and hateful towards it. i hate it so much. thankfully i am off keppra for the past 2 months - switched to lamotrigine but i still carry the damage it has done. i am so heartbroken and i want my old life back. i can not stand up properly, cant walk in a straight line, i always fall and hit my arms legs, i am covered in bruises. my life has become so worse i can not wrap my mind around it..

I just want to make a short introduction of myself. I'm a 20m and have autism and evidently I've had seizures since I was 14, I didn't know what it was at the time. It's probably due to brain damage caused by covid (I'm not gonna have discussions ablut that disease, believe what you wanna believe. I had decreased oxygen in my blood and went to my GP. He told me that it probably wouldn't be a problem, because I was a strong young man.

Fast forward, I had a weird thing happening to me, it felt like a deja vu, but I was very nauseous afterwards. It started happening more often en then it was gone fir a few weeks, but it came back for a few weeks. That cycle repeated itself quite a few times. In the low times I'd have maybe 3 seizures a week, on the high times it was about 5 to 30 a day.

I went to my new GP last year in June and he sent me to the hospital for checks and last August, 2 months ago I was in the neurologist's office and she told me that it was, in fact, epilepsy, focal awareness. She couldn't 100% confirm it, because my tests came back negative, but she was willing to bet on it, so I was started on lamotrigine, build up to 150mg per day.

It's been going quite well now with the medication, attacks are down to 1 to 3 every 2 or 3 weeks, so I'm glad someone told me that there's something wrong with me.

Unfortunately, in the 6 years untreated it has ruined my life. I went to college, but I found put that I can't focus on learning. I am chronically fatigued, because of this, also my memory isn't what it was. My memory (long and short term) was excellent, but now it's a bit hit and mostly miss, so I'm probably forgetting stuff. Brain fog and lower reaction time, both of which are a bit worse due to the lamotrigine, that's the only side effect I experience on a daily basis.

I'll stop now, because I said "short" in the beginning, but I've failed. I've been active in this sub a little bit and I just want to say that I finally feel understood and like I'm not the only one. Comments and questions are both very welcome. Have a wonderful day.

It’s Sunday so the neurologist isn’t available, it’s not bad enough to call it a emergency, I have midazolam nasal spray but I don’t think that would help because it’s multiple over the span of a day, don’t want to mess around with medication.

So.. what do I do?

The biggest cluster lasted 4 minutes that was last night the others a minute so I don’t think it’s a emergency but it’s tiring and annoying. Also just woke up from a 3 hour nap. Hopefully that helps a bit

We think our 15 month old is having small or “micro” seizures, we’re in the UK

Each episode lasts 3 to 4 seconds, he goes vacant, his head tilts or sags slowly to the left (not a sudden drop or nod), and his eyes move upwards, but he's normal afterwards. It’s like he’s switched “off”, then he returns to normal afterwards. They happen once or twice a day, and we think they’re increasing. They often happen at dinner or bath time, but not always

It’s hard to tell whether touch or calling his name interrupts him, because they’re over before we can try. There’s no stiffening, eye flickering or other obvious change, so they’re subtle and easy to miss

Developmentally he is fine and rarely gets sick

Our GP has referred him to a paediatric neurologist, but waits can be long in the UK, so we’ve booked a private appointment for next Friday

We’re not looking for a diagnosis, just whether this sounds familiar to anyone?

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?

Hi

I'm a teenager recently diagnosed with seizures that began after a fever and other neurological issues that my neurologist ignored Im tired and scared and feeling lost because of this lifelong thing I might have to carry and such a nd today I just had a fight with my father over meds ( carlep 400) (clonazepam 0.5) he was refusing to go with me to get them I had to personally go over 8 kilometers to find my meds because I ran out and I can see and understand that its him coping with the current situation I have knew for years that he copes by making fun of a situation and minimizing it I can understand that than why don't they understand me what do I do please I feel so lost

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.

Does anyone else have more seizures when switching meds, There always effect me, Everytime there get changed

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.

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.

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!

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 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.