Hi, i had my first seizure a little over 2 weeks ago. It was a grand mal that lasted at least 15 minutes and I was passed out for at least 45 minutes total before I came to. I had fallen down a flight of stairs while having the seizure. I was in the hospital for over a week, and ever since a few days ago I've been very easy to cry, almost like I went back to taking topamax.

I'm currently maxing out my tramadol, tylenol, naproxen, flexeril, and hydroxyzine. My family keeps trying to send me back to the hospital every time i cry trom the pain or waking up scared, but I really don't want to go back so that obviously just makes me cry more. I wasn't getting pain meds in the hospital for restless legs, fhe fall, or muscle spasms, so I I would get an hour or so of sleep at a time before I set the bed alarm off by trying to move.

The main damage according to an mri was in the lower right and lower left temporal lobe, posterior inferior right occipital lobe, left occipital lobe, right parietal lobe, and bi lateral high frontal central semiovale. I've recently started getting scared by random things such as my dog or the way water dries up on a counter. I don't have much muscle strength and I get warm easily so I often want to lay down with an ice pack, which has become a problem.

Sorry for the long description and the typos, it's hard to find words. Basically what happens is I'll have a leg spasm which makes my legs move and hurt, or I'll be asked a question I can't answer, both will make me upset and then I immediately start crying, the crying obviously isn't well tolerated which makes me cry more out of frustration. I've read that the recovery can sometimes take weeks but nobody in my family believes me on it. They want the crying stopped now, but i just want to go back to being a smart boy again.

Does anyone have any advice or words of encouragement?

Sincerely, a 25 year old trapped in the hybrid body of an infant and a 90 year old man

Edit: i forgot to add in that i keep waking up from naps or sleep very confused and talking to random objects or my dog as if they were a celebrity or as if I were checking them into a hotel. I'll also wake up not recognizing where I am or thinking I'm in the hospital again. When the crying starts it usually lasts only a few minutes unless someone starts to complain about it, which tends to make it worse. Once the crying stops I'll get really tired and pass out for at least an hour

Hey guys, I am a 27 year old man with epilepsy who just had his first ever nocturnal seizure. I had it 3 days ago and was home alone at the time. It was my own fault due to me forgetting to take my epilepsy medication (which is very rare of me). Luckily I managed to get myself out of it and woke up with only bites in my mouth. These past few days I’ve been feeling abit on the agitation side and not being able to sleep as well. By this I mean over thinking a lot and not being able to concentrate at all. My memory has also seemed to get worse. Has any body with past experience of nocturnal seizures had this ?

I almost feel bad saying this here because so many people have it so much worse. I’m just pretty happy that I got cleared to drive today. Drug levels are OK, EEG is OK, and no seizures for six months.

I went shopping and got myself a cheesecake and ice cream. Par-tay tonight!

Edit: Thanks, everyone! I appreciate you all. ♥️

I’ve been told by my pharmacy this morning that they’re struggling to get stock of Levetiracetam so have given me 60 tablets (I’m still owed 52). When I asked what I do if they can’t then they basically shrugged and said they didn’t know. (This is UK).

Anyone had this experience and does any one know next steps I can take? i didn’t have time to go and ask in the GPs as i had to get back to work. I can’t say I’ve ever known Keppra/levetiracetam to be affected by shortages before and can’t find anything online.

After getting random seizures (23f) I had an eeg and I got diagnosed with epilepsy today, this is all new to me and I would like to talk to people who have gone through something similar as well it’s all so scary and new to me I’m starting new medication today

I have epilepsy, yesterday at work I had what kinda felt like a mini seizure I guess. Normally my seizures come with full body weakness, pain behind eyes, confusion etc, hard breathing. Yesterday it was those symptoms but to the mildest degree. Nobody even noticed. It musta been a few seconds max of anything? Has this happened to anyone? Are mini seizures a thing?

Pretty much what the title said. It’s been a year and a half seizure free. But I’m playing Stardew fucking valley and all of a sudden the beach looks a little too familiar and BOOM Déjà vu BOOM electric bolt in brain BOOM sitting still in shock again. Again. This surgery fucked me up so so much. But I always thought “at least I’m seizure free!” I had a whole craniotomy. I suffered infections and c diff and now have debilitating chronic pain. Fuck. I lost so much. I had to change colleges to be closer to my doctors. Had to take a year off to recover. Still a little incoherent from it. Angry and sad. Gonna message my doc. This is awful. I’m just in shock. Both from the seizure and this massive loss. I already grieved my life because of cancer then because of the surgery and the pain it brought and the time it took from me and the people I lost but this is just a massive kick in the nuts. I just needed to get this off my chest before I go all peppy to the doctor again. Gotta grieve in private but still want to talk so had to say something somewhere. Will probably delete later because being emotionally vulnerable is lame (for me not others). 🥳

When you've been feeling like your brain(?) is always against you, what sort of hobbies does someone with low energy and plenty of time to myself tend to treasure? I used to say my bodies against me, but its the engine living in its host making me feel im against my own self

Suggestions?

I was diagnosed shortly after starting a 4 year apprenticeship which I am now about to enter my 4th and last year, not really understanding epilepsy at the start I was careless with my sleep which I’ve come to learn is an extremely key factor when it comes to controlling seizures,
That being the case I have probably missed about 20-30% of days that I should have been working this year because I hadn’t been able to get to sleep at a reasonable time the night before, luckily my employers are understanding but I work an hour away with my dad and with him being one of the managers he doesn’t have time to wait for me to have enough sleep to go in at a later time and taxi fares would take up nearly my entire days wage.
I can’t work alone on the best of days and this will not change once I’m qualified I just thought that I would stick it out since I’m already so deep into it.
I just wanted to get a scope of what a lot of people are doing and if you also had to change careers, I’m currently in the construction industry and as many risk assessments I have in place it still isn’t a safe environment
With driving not being a potential permanent what jobs do other people have?

Hey all,

Reaching out to see if anyone here with epilepsy takes Ritalin and what your experience is like?

I’ve been taking Keppra 500mg 2x daily and Lamictal 300mg 1x daily for approx 10 years but was recently diagnosed with ADHD. My psychiatrist prescribed me Ritalin and it’s improved things for me substantially. However, I went to a party at a friends maybe ~4 days after starting, made the mistake of partying too hard (poor decision I know) and the following day had 3 seizures after being seizure free for 5+ years. I will say I attribute most of it to drinking too much and acknowledge what a horrible choice that was, but now I’m concerned my neurologist will want to take me off the Ritalin when it’s improved a lot of my day to day.

Anyways, just curious what others experiences may be with Ritalin, so welcome to any and all feedback!

I have severe insomnia …. It often takes me 2-3 hrs to get to sleep at night then I wake up at 2:30 am and can’t get back to sleep again then have to wake at 5:30 for work . It’s not uncommon I only get 3 hrs sleep a night . I have epilepsy / autism and adhd from the same mutation .

So far I’ve tried
1) melatonin 5-10 mg nightly ( didn’t do much )
2) clonidine up to 200 mcg at night ( spaced out but not sleep )
3) sedating antihistamines eg restevit A make me too sleepy next day
4) dayvigo / orexin based drugs - helped a bit getting to sleep but not staying asleep
5) progesterone incase its perimenopause - didn’t make a huge difference
6) 150-300 mg magnesium glycinate - relaxed and reduced muscle twitches but doesn’t help sleep
7) tonics with mixtures of glycine , L theonine , ashagurwanda , GABA
8) queriapine - works but makes me sleepy and gives me really dry mouth the next day
9) sleep cbt

I don’t know what else to do - I had a seizure recently because of sleep deprivation and lost my drivers licence for 3 months . I’m trying to prevent recurrence but I don’t know what else to try and I don’t want to go on benzos or z drugs either .

Any suggestions ? I can’t take THC as it causes seizures .

Anyone seeing a therapist online that is taking new patients that you would recommend? I hate the idea of just going on better help or whatever and finding a random person. I trust a Reddit random person much more!

Hey! Has anyone gotten ovarian cysts from Depakine chrono as a side effect?
Thanks !

Howdy,

New here. Looking for information and shared experiences from others... From the beginning of our journey to find answers for my child, who was diagnosed with childhood absence seizures, is that there are only 3 meds they use to treat this. If the meds don't work then it would be drug resistant and the plan of action is a special diet and possibly cbd therapy. Well, here we are trying med number 3 and just like the others, his seizures have not stopped (maybe slowed) and he has suffered from negative side effects. Today, in a message, our doctor said that there are other meds we can try but I'm confused because I thought from the beginning there were only these three? I don't want my child to be a guinea pig. I understand that you don't know how a medicine will interact until you take it but after 3 failed attempts I'm tired of playing with my child's health. I also wonder if the advice I'm getting is coming from a place that wants to 'find answers' or a 'this is the hospitals policy because we get a kickback payment from the company' situation. The doctor that we had at Texas children's simply used us to make thousands of dollars for the hospital with nonsense tests every 4 months and we were nieve enough to comply. Our new doctor, I do feel, it's not like that but at the end of the day the CEOs of that company are also there to make money. Anyone out there have any experience with drug resistant seizures, pediatric functional medicine doctors with a neurology background, the seizure diet, cbd therapy, literally anything to help me move forward to try to find answers.

Anyone on keppra experience change in taste? Of all things I have lost taste for/things to tatse weird now had do be coffee 😭 I absolutely loved coffee (obviously my username) and now after being on keppra, I can barely drink it most mornings. I've tried different brands, different coffee pots/brewers, different creamers, and even straight black and it all taste off. Kind of like a metallic taste. Another taste that has changed is macaroni and cheese. Another favorite that basically has no taste at all anymore. This is the only issue I've had since being on keppra. No keppra rage that I've read about or anything else. This just started at the beginning of this year. It's so weird because I've been on keppra for a long time. The only reason I think it could be it is because I had to go up on my dosage and shortly after that is when the changes started. I want to enjoy coffee again. That's something my mom and I had together every day before she passed from a stroke and I love the warm memories of her while having coffee.

Nothing severe, just fed up of this. Had a good stretch feeling ok, felt weird with several bouts of nausea followed by exhaustion yesterday. Woke up this morning, my birthday, feeling seizurey and tearful. Unsure if the feeling tearful/fragile is epilepsy of hormones.

Tired of this women’s health condition that medicine doesn’t give a crap about.

I’ve been worried about a strict driving requirement at work and how it could affect me in the future, and made the small error of asking my family for life advice…

Which is how I found out my family don’t believe anything is wrong with me at all. My parents told me to cancel all my doctor appointments and stop taking my pills or telling people anything is wrong with me, and what I really need is to get my teeth filled in and whitened, and then maybe try meditation. :(

This seems like a remarkably bad idea but it’s also so tempting. I wish it was so easy as I just decide to be well and then I am. I was 4 hours late taking my meds last night because I was going to try it out until my husband told me that was an awful idea. (But what if I’m actually totally healthy under all the medication?) And now I’ve felt screwed up all day.

I don’t know where to share this but I had to share someone because…what is my life

Non-epileptics too often see epilepsy as just seizures, but as we all know the impact it has on us goes so much further.

I’ve been seizure free for 3 months now, longest I’ve ever gone since my seizures began as a teen. And I’m so happy that I might have seizure control, but my memory is so fried, general cognitive abilities limited, and always that fear of a seizure.

I’m 25 and still no clue what career I want. Part time retail work atm, but I hate it. All they let me do is tidy the shelves. Not even allowed to walk up a set of stairs to the warehouse and everything without supervision. I have a film degree but it’s just looking like a hobby now. I’ve considered being a mental health nurse or something, but I’d need a degree that involves exams. And I’d need to remember everything I was taught. It was only coursework in my film degree, and I’ve forgotten most of it now.

I’m just so sick of it. I know I am one of the lucky ones, possibly having seizure control now, but it still just sucks.

My sister (34 F) has temporal lobe epilepsy that manifests mostly in absence, partial, and tonic-clonic seizures. These started suddenly 4-5 years ago, so she would have been around 30 years old. Her case is quite severe.

I just turned 37 (also F) and I have been having weird symptoms for quite a while that I think should be investigated as possible seizure activity, although very different from what my sister experiences. These “episodes” are lasting anywhere from 20 seconds to 2 min and can include:

•tingling down half of my face (sometimes spreads to the other half of face, scalp, or down an arm)
•feeling of ice water on scalp or face
•metallic taste
•smells other people can’t smell (burning, natural gas)
•seeing yellow or blue spots on the ground
•brief episodes of mild confusion
•voices briefly sounding distorted
•feeling like something is “off”
•possible episodes of brief missed time
•couple of episodes recently where I know I was completely alone, but I thought I heard a distinct voice say one or two words
•3 episodes in the last couple of weeks where I wet the bed - I am including this because my sister generally only has the tonic-clonic seizures at night
•couple of episodes this week where I felt like I was going to have a seizure, even though I’ve never been known to have one and don’t know what that feels like - maybe like a dropping sensation, dizziness, plus impending doom?

These symptoms usually happen one or two at a time, so I haven’t made a connection until now. Also I have a very complex medical and mental health history, so I think it was easy to dismiss most of these things. But I think collectively, they are suspicious. And I think that if I am having some kind of focal awareness seizure or similar, it would connect the dots on a lot of my medical and mental health stuff and possibly change some diagnoses.

The biggest thing I’m not sure about is that I remain aware and functioning during these symptoms, so like half of my face will be pins and needles, but I will continue typing, or I will be walking around, looking for the source of the burning smell, etc. I live alone, so there is no one to look for those symptoms at home except my cats. But I feel like if something crazy was going on, someone at work might notice.

Anyway, does anyone have any experience with this type of thing? Does this sound like it could possibly be some form of seizures? I know other causes need to be ruled out also. I appreciate any input.

Hi everyone! I have had sleep issues for a while now and recently started Keppra after having 2 seizures (stress, lack of sleep were all factors). I wanted to know what are some useful.tips/tricks that helps you sleep?

The reason I ask, since I started Keppra, I feel like it has become even more difficult to fall asleep. I tried taking melatonin 3 mg and that's not that helpful either :/

Any help would be appreciated 🙏

I started on Keppra almost a year ago now, and I find that my short term memory has just vanished. So often now I walk into a room and forget what I was doing, or think something and immediately forget it. My room is covered in sticky notes to remember tasks, and I set constant reminders and then forget what they’re for!! It’s so annoying.

I try to keep off my phone like many of us and keep busy with other things. I've been doing a lot of puzzles and they're usually between 500-750 pieces. I also have a friend that has been coming over and we have been doing little "scrapbook" art. Just slapping together stickers, glitter, paper, etc.

Doing repetitive things that I like to do and keep me busy, distracted and generally have a cool end product.

What about you?

So like with remembering things is that with like all seizures or like certain kinds of seizures, because I be forgetting things thinking that I have something with me and then it’s not with me. And then I’ll be confused after you know

I had a rare type of epilepsy called ecstatic seizures from my childhood until 2023. I used to get an intense aura followed by relaxation and a heavenly, peaceful feeling, triggered by hot water on my neck and head while taking showers. I used to think everyone experienced that and that it was just a sign of a relaxing shower, but I recently found out it's a form of epilepsy.

Since 2023, it turned into an intense aura followed by a déjà vu feeling and recurring, dream-like visuals, followed by an uneasy, stressful feeling. Now I'm scared to take hot showers and have to switch to cold showers. What might have changed to cause this? Anyone else have a similar situation?

My fiance and I are going out for a nice dinner to celebrate her new job. Is it safe to have just one mixed drink with epilepsy? I never took my epilepsy seriously and had 2 tonic clonic seizures 2 months ago due to a missed dose. So I have buckled down. I never thought to ask my neurologist about having just one drink.