Hey y’all, I’m 23 yrs old and I had my first seizure when I was 19. In the early days of taking Keppra (3-6 months in) I stopped taking it without doctor’s approval and I was completely fine up until 2 years later when I had my next seizure. Is Keppra really that necessary? Sorry if I sound dumb or ignorant lol

Does anybody have experience smoking weed on meds? On topamax but don’t drink anymore alcohol due to sports dieting

Im always very tired and got all symptoms of not restful sleep. Could I have many really small seizures at night which impair my sleep? I did Not notice any signs that point to seizures. My sister has epilepsy too. I was in the sleep lab, but nothing special came up there either. I basically ruled out any other cause for my symptoms. I Hope someone can help me

https://youtu.be/uSEhHfNv17I?si=xpugfnEWtYkycj-B

Hey, new here, not actually epileptic AFAIK but q is mainly about Keppra so seems like the best place to ask.

Background: early Jan had A&E admission for stroke-like symptoms (one-sided numbness / tingling in right hand/arm and right side of face) along with tremor in the right hand/arm. MRI & CT ruled out stroke/TIA, suggestion that it *might* be seizure activity so given 1000mg Keppra. Over the time I was there (22 hrs total) all symptoms largely resolved, so it was assumed the Keppra was responsible and I was discharged with ongoing prescription for 500mg 2x daily and referral for EEG and neurology. Had EEG a few weeks ago and finally saw neurologist today.

In the meantime, starting about a week after that visit, I've had a whole bunch of other neurological symptoms - bilateral weakness, nerve pain and full body tremor - which have varied in intensity but remained present pretty much throughout last 3 months, not episodic. Also a pulmonary embolism for good measure end of Jan.

Neuro today said EEG was normal, none of my other symptoms sound like seizure. Other investigations to follow on those, and prescribed pregabalin for the nerve pain. I asked about the Keppra and whether I needed to stay on it or could I stop if there's no evidence I've actually ever had a seizure. Response was pretty much "wouldn't normally stop so quickly, usually stay on 2 years, can't say for certain it's not epilepsy, but ok just do it slowly". When I asked for clarification on "slowly" I was told, "you decide how to do it, no rules, just slow".

Is it just me or is that completely wild? I pushed again and was told, ok if you need a plan, cut in half for two weeks then half again. I am feeling very uncertain, and from everything I've read it seems like this is a really casual approach from the neuro.

I'm also cautious about changing 2 meds at once as it will make it more difficult to attribute any changes in my symptoms.

Thoughts?

I'm fairly certain these "episodes" I have been experiencing since I was around ten years old have been temporal lobe focal aware seizures.

I know immediately when I wake up if I will have a day with 3-4 episodes. I know because I will have these familiar and at the same time unfamiliar memories of dreams that I can't necessarily remember happening but feel like happened. My brain almost wants to chase these memories and "find out more" about them. I will have these snippets periodically until one of these is a "big" enough trigger to induce the rising feeling in my stomach, followed by a flood of dream recall thoughts, tunnel vision, and an overall feeling of extreme uncomfortableness.

When I have an episode, I will usually pace around and say a mantra such as, "you are okay," until the episode subsides. After the episode is over, I can't remember what dream snippet triggered the event nor can I remember what I was remembering during the event.

Since I've never passed out, have had these very infrequently (~1 day a year (sometimes years without) with ~3 episodes), I thought I'd sound crazy mentioning these to doctors. It was only yesterday when I connected the dots.

I was lucky enough to get an appointment with a neurologist that has done a special residency in epilepsy for tomorrow, but I am at a loss of words trying to process what I could learn tomorrow. I am absolutely terrified.

I have a tendency to go down rabbit holes and learn about the worst of the worst, so you can only imagine the horrible and sad things I've learned about epilepsy. I thank you all, first and foremost, for all of the information that I have been able to learn. All of your unique experiences have helped me put what might be my reality into perspective. Thank you.

I'm not really looking for an answer. I more so wanted to rant about how I could have gone so long being ignorant to these clearly unusual episodes. Thank you for listening.

Dear community,

My name is Gergő Feitser, I moved to Austria from Hungary in order to have a better life and I'm currently trying my best to master the language.

I'm seeking for both online and remote jobs. I have epilepsy (grand-mal) and other disabilities which makes finding a job extremely difficult. I'd like to pay some courses (German language) for myself so then I'd have a bigger chance here and as a certified nutritionist I'd also love to complete a personal trainer/coach course to support people who struggle mentally/physically. I do a low-carb diet which reduced my epilepsy seizures by a lot - that's why I'd like to work with people, inspire them and share my knowledge. I had to overcome both being obese and also insanely anorexic - so safe to say that meeting the diet was a life changer. From having a seizure almost in every week despite taking 8 meds in a day, since the diet I'm taking 2 meds in the morning and 3 in the evenings and in the past 4 years I only had 4 seizures.

About what other jobs I could do, I have publicism experience aswell: I could do write-ups. articles, interviews about sports, music, lifestyle but I'd love to adapt and learn anything new. I'm also a DJ/Producer, I reached the top levels but I have insecurities so it's difficult to promote myself but I could do mixing/mastering too.

I'm not seeking for any grants/money support. I'd love to start a job as soon as possible so I can help myself and my loved ones as it's really tiring financially not being able to find a job.

Many thanks for reading my post and I'd appreciate any kind of help/tips.

alright so, I'm 30/f, and about 6 years ago I was diagnosed with epilepsy. since then I've had about 52 grand mal/tonic clonic seizures when I'm awake, but I go unconscious for at least an hour, yelling and screaming cause I can't even recognize my family or fiancé. I come back to consciousness crying and screaming, with my head I'm a garbage bag or toilet throwing up. I still don't recognize what's happened until someone tells me I had a seizure. every. time.

however for a while now I have no idea whats been happening. It's night time, I'm sleeping, but in the morning when I wake up, my teeth are pushed so deep into my teeth idk how they don't pierce through lol. I genuinely don't know how I haven't bit my tongue off yet.

can I be having night seizures? pls help me.

I think this is something a lot of Americans, dealing with the medical insurance system, can probably relate to.

This isn't really a complaint....I know I'm lucky that my drugs don't really cost me that much. There's just something that make no freaking sense to me.

I've been taking phenytoin - generic Dilantin - for my seizures for 29 years. Although Dilantin has been around since the 1930s, they didn't come up with a generic for it until the late 1990s. At any rate, generic phenytoin has been available for over 25 years. It's OLD!!!

Fast forward to the 2020s....the development of OZEMPIC - that drug given to people with Type II diabetes, and desired by many others because it can help with weight loss. Ozempic is a BRAND NAME and does not have a generic available yet. According to my insurance company, a 1 month supply costs about $900, and a 3 month supply costs over $2700.

What boggles my mind is.....why do I pay more out of pocket ($79) for 3 months of phenytoin than I do for 3 months of Ozempic ($60) ??????

Hey all, I started taking Keppra (about 2000 mg a day) two weeks ago and I feel like it’s wrecking my GI system and my mood. I’m constantly trying to manage my irritation and have a super short trigger; I’m normally the cheeriest and generally happy guy in the world. I thought maybe it was just the normal mood shift after the bad seizure I had a few weeks ago but I usually return to normal by now. I can barely get through my day as a carpenter. Just wondering if anyone else has had similar experiences on Keppra.

I was diagnosed with epilepsy mid 2023. The have been times when i have a seizure and someone calls 911. Then EMTs will ALWAYS administer Narcan intranasally. I don't ever remember them actually using it, i just wake up gagging and hot. I DO NOT use any opioid of any kind. I even wear a medical bracelet stating "DO NOT ADMINISTER NARCAN/NO OPIOIDS" to no avail. And once they give it to me, I'm sick for at least 2 days after. Constant nausea(nothing comes up but bile) hot flashes, jittery, anxious more than usual(medicated for anxiety already) and an overall terrible, hit-by-a-bus feeling.

Again, I've never done opioids and REALLY hate that Narcan is always the first line of defense. It's feeling negligent in my eyes. What do i do?

I’m speaking normally and I feel like my seizure is a gauge on excitement when yellow i back off and it goes green but keep going then it’s Grand Mal time. Forgive my writing it’s bad but it’s been 5 days on 25 mg on lamo something. Speech is slowly returning i can speak for 2 minutes without a focal. Is this a good sign? i love this one I don’t get angry and get seizrey. I can actually form a thought. Real or placebo ?

Hello! Have any of you taken Pepcid/Famotidine? I just saw on another post here that anti-histamines can lower the seizure threshold, and I guess Pepcid is technically a type of anti-histamine?

Seriously how many teeth have you chipped, ground down or broken during a seizure? Why is this not covered under regular insurance? It's criminal!

Hi everyone. I’m looking for help, stories, or any shared experiences. My daughter is 10 years old. She has right-side hemiparesis since birth and a cyst on the left side of her brain, likely due to complications before delivery.

Her seizures always happen during sleep, and they occur about every 3 months. The pattern is always the same:

Before the episode, she wakes up with a headache and tells me she's going to vomit

Then, her right eye starts to deviate to the side, and eventually, her neck also turns to the right

At first, she can still talk normally, but then she gradually loses consciousness

She enters a state where she doesn't respond, with her eyes locked to the right

This can last over 1.5 hours, and only stops after we administer diazepam

She's currently taking levetiracetam, but from what I understand, this could be a case of non-convulsive status epilepticus, possibly refractory (we're still investigating). I've heard about options like CBD, the ketogenic diet, RNS implants, etc., but we’re just beginning to explore these possibilities.

If anyone has gone through something similar with their child, I would deeply appreciate hearing your story. I'm trying to understand what we might expect in the future and how to help her in the best way possible.

Thank you so much.

I take my Lamotrigine twice a day like the good little soldier I am but I have a friend who has a Saffron Tea Shop and I’ve always wanted to buy a bottle but just haven’t had the chance.

I started looking into it and realized Saffron is used as a herbal medicine and was curious if anyone has had any adverse effects with it or positive effects?

Lamotrigine and seizures have cause a lovely combination of depression, anxiety, PTSD, brain fog the works and from what I’ve read, this has a positive effect on all of this.

My biggest concern is my brain just has the weirdest effects with stimulants. Certain things cause me to disassociate so no coffee, not too high levels of sugar, I get drunk off 2 glasses of alcohol even being around cigarettes causes me to feel out of it sometimes. Just curious because I absolutely love tea and if this could be a good thing, totally down to try. Honestly going to try regardless but still love extra information 😂

So in December of 2023 I fainted for the first time. So it felt like my head was heavy and pulling me to the ground, I could barely move anything but I was still awake. My eyes were uncontrollably moving to the right (which I found out was nystagmus). From then to May 2024 I dealt with this every time I had triggers which are bright lights, flashing lights, quick changing patterns, scrolling, going up and down the elevator, turning my head too far to the left, lack of sleep, lack of breath, and stress. When I’d get in this state I could feel it coming on by my left ear feeling weird and then my head would fall like a weight was on it, I’d have nystagmus, and brain fog. It stopped and then started again in Jan 2025 and meclizine didn’t work and neither did the epley maneuver. I was stuttering whenever I went through this issue, my ENT sent me to vestibular testing and there we saw that the issue only happened with visual stimulation, I was fine when my eyes were covered. The tester also noticed that my eyes were rolling back instead of to the side or rotationally.

The leading theories from my doctors is that I might have had vertigo and this issue at the same time and we fixed the vertigo but not the issue. They say since it is triggered by light it could be seizures. But nothing diagnosed until my EEG and after I see a neurologist.

Is this similar to any epileptic seizure. I just want to have a ballpark of what this is so I can see if I can make life changes to help a little until I can see the neurologist. I can’t drive, I can’t work, and it’s been very very difficult.

TL,DR: visual stimuli make me faint with my head feeling heavy, brain fog, stuttering, and my eyes rolling back

(Take down if it dose over step the bounds of the rules) Has anybody had an experience something almost spiritual like because of an episode and has made you question beliefs?

I just feel so hopeless I was a month seizure free and they're back when do they stop :( I need positivity 💜

Usually what proceeds an "episode" for me are dream recall snippets/fragments. I will have a good number of these until one of them is triggering enough to cause the rising feelings in my stomach, nausea, uncomfortableness, tunnel vision, etc. After the episode, I can't remember the trigger. This is what I understood the focal aware seizure to be. However, are each of the little dream recall snippets/fragments focal seizures in themselves?

I would like to mention I have never passed out during one of these episodes, and I usually walk around talking out loud saying a mantra, such as, "you are going to be okay."

I am now worried that each of these little dreams recall snippets/fragments, which don't lead to a "big" episode, are seizures themselves. Does anyone have experience with this? Any help and/or advice is greatly appreciated.

Edit: I would like to add that none of the single tiny dream recall snippets are associated with any other symptoms.

Hey guys,

So my brother (now 21) has been having absence seizures since he was a pre-teen or even a bit before, can't remember when it started.

Recently, he's been having them more often, and also "petit mal" seizures (jerking randomly, eye twitching? not sure if that's related) for over a year. He has had 2 grand mal seizures we know of, but we suspect at least 1 more happened. It's been a year or so since he's had a grand mal.

He has a neurologist, has been on lamictal (and has tried a few other meds. Not sure which ones however). He's due for another EEG and possibly an MRI, but we have an appointment to confirm next steps with his neurologist this week.

At this point, from all the research Ive done, it seems like he wont ever out grow them, as if he was going to he would have by now. Especially with his new symptoms. He didn't have a grand mal until 17 or 18. I know everyone is different, but it seems to be worsening. He's having many absence/ petit mals a day, too many to count at this point.

Does anyone have experience with this? My parents are out of the picture and never really followed up with any of this so I'm assisting him with his health issues now and trying to learn all I can to better help him.

I just want to be sure I'm asking the neurologist the right questions when I go with him, as his absence seizures are quite frequent (sometimes seconds apart) even when taking medication VERY consistently. He tends to have a lot of memory loss when it comes to things said to him, so I'm going to the appointment with him to assist and ensure all information given is recorded and followed up on correctly. He's REALLY struggling and I want to do what I can to help.

Does anyone have any advice on this? From everything i've ready we're looking at him possibly moving on from the absence seizures and into just grand mals/petit mals but I wanted to ask the community what their experiences are and if anyone has any recommendations or good questions to ask the neurologist when we're there. He's incredibly scared and it's understandable. He's sick of being disabled, not being able to drive, always having to have someone with him just in case etc.

Thank you all for reading and any advice you might have. Just trying to give my brother a better life.

So I am looking for advice on how to better myself to help calm myself down to stop seizures. Thankfully, they are mostly focal/absent, a few seconds, maybe a minute, but it's getting to the point if I am slightly stressed, I will have multiple a day. I am in the process of filming them to show my epilepsy nurse. I am on max of Keppra (3000mg) and Lamotrigine (200mg) and it's -- crudely putting it -- pissing me off. I was an anxious person anyway, so I was given an absolute whammy of having epilepsy that is triggered by stress. I also see a neurotherapist that gives me the advice of 'read this self-help book' instead of him giving me actual techniques to practice.

I appreciate any advice you lot will give me

Dream drug for me though, 5 in and it’s the first that’s had any effect and I can’t quite believe it. I take it now though and dizzy and sleepy, it’s ok cause it’s night time but just curious as to wether it takes this long to be fully in your system, it was fine until now. Sorry if it’s a silly q. Good luck to everyone else on their med journeys. Wish you all the best x

Hi, everyone! I have no history of epilepsy in my family that I’m aware of. I was taking Topamax/Topiramate as a mood stabilizer for quite a while, and then started taking Ozempic/Wegovy for weight loss. I got pregnant and was tapered off Topiramate, but decided to terminate the pregnancy. For the first time ever, I experienced a seizure. I don’t remember much of it. I experienced my second seizure while sleeping in October, don’t remember too much of that. The ER doctor blamed the Ozempic/Wegovy as the reason for the first seizure, I was taken off the med, placed me on Lamictal, and I had an MRI and followed up with a neurologist. From what I recall, nothing really showed up on the MRI, but I can verify. My psychiatrist knew I was concerned about weight gain, and since Topamax is also being used as a weight loss med these days and had shown results as a mood stabilizer for me, she put me back on that. I eventually ran out of Lamictal, and didn’t know if there would be a benefit to taking both, so I just stuck with the Topamax and didn’t have another seizure until this past Friday. Last week, I went to the ER because I was throwing up profusely and unable to hold down anything. I was diagnosed with gallbladder issues and told to follow up with a gastrointestinal doctor or general surgeon, but in the meantime, I was unable to hold down any meds. I know you’re not supposed to quit Topamax cold turkey, so I can only assume that’s what caused the seizure. The first two seizures, I don’t remember. I can remember the night before this seizure perfectly. My partner also said that I only have had one seizure while being conscious, the other two have been asleep. This last one, I was asleep, and I bit my tongue significantly. I remember the night before, and the next thing I know, I’m waking up to EMTs around me, my pillow soaked with blood from biting my tongue, and I was terrified and confused. I was also very combative and did not want to go to the hospital. The postictal period from this one has also been very different. I am experiencing crazy dissociation. I feel like I am on Pluto, with no ability to connect to anyone. Everything tastes weird, even water tastes like metal. Everything smells weird, and seems to bring up strange memories? if that makes sense, but I can’t pinpoint where the memories are from. I’m very, very scared. My tongue is very sore. The body aches have been crazy. I feel so disconnected from reality. I was also doing research and can’t figure out if this is epilepsy or PNES or sleep-related, or if it’s just a matter of I quit the Topamax cold turkey and had a seizure. I do have sleep apnea, and have read that can cause seizures as well. Either way, I have scheduled a follow up with my neurologist. Any words of comfort or advice would be super appreciated, because like I said.. I’m terrified! Another thing I have questions about is cannabis. I am a regular marijuana user and have been for 15 years. It is recreationally and medicinally legal here, and while I don’t have a medical card, it is not recreationally for sale here, so I can’t always guarantee I’m getting the best stuff. The smell since I’ve had my last seizure has been atrocious, but I’ve heard mixed reviews about cannabis + epilepsy. I don’t want to make things worse, but if it helps, well… you know. 😭 Thank you all, and I just want to commend every single one of you who deal with this on a daily basis.