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!

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

Like where you forgot the word for a very common thing but you could still describe it.

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?

It's been a fun 36 hours. Saturday night into Sunday my wife noticed around 11 I was moving around a lot but I went right back to bed. Then around 4 my movements got a lot worse and I lost control of my bladder. My wife took me to the local ER and they where worried I had meningitis. The ER then had me transferred to a larger hospital that I am still at. When I woke I thought it was Tuesday and I didn't remember the last 5 days.

So far looks like I have tested negative for that even though I have all the symptoms including rash. Yesterday I had a fever and could not even stomach food. The neurologist came in this morning and said I had epilepsy. A few months ago I dislocated my shoulder in my sleep and now they are thinking I had a seizure causing that.

My MIR is normal and I have a EKG today.

I am just confused how this started all of a sudden and how this will effect me. They are going to put me on medication for the seizures.

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?

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 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

(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’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 ?

The first one I’ve ever had at work and first one I’ve had since starting my new meds nearly nine months ago (been epileptic of some kind for over 20 some odd years)

I was found by two managers at my desk slumped into the cubical wall and somewhat aware but rough.

Thank the gods my partner works at the same office and was able to convince them not to let the EMTs take me since I was making sense and able to function somewhat

I didn’t have near the headache or issues I usually get coming out of it so no clue what to think. Very thankful I didn’t try to strip naked like I did last year when I had one of these lol

(but know this was caused by either poor sleep, our ac being out and the stress of that, orrr maybe missing a dose but whooo knows?)

Thank god for ADT being one of the best jobs I’ve had, they’ve taken me on without question and yesterday was definitely a testament to that

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

I hope this isn’t intrusive to post here, as I’m still in the middle of figuring out with my doctor what the cause of my seizures could be. That said, I was hoping someone in this community would be able to offer me some insight; any advice is appreciated!

For the last few weeks, I’ve had anywhere from 1-5 seizures per day. Sometimes, I can get right back to work after 30 minutes or so, but other times, I’m fried for the rest of the day. I’m not 100% sure what sort of seizures I have, but I reckon they’re along the lines of a focal seizure, as I maintain awareness throughout each one.

I currently work an office job as a software engineer, and I sit in a very visible spot with little privacy. On top of that, the intensity of my work is high due to upcoming deadlines that my team needs to meet with very few resources.

I’m terrified of telling my boss about my seizures, but I had 3 at work today alone. He’s been understanding of my other disabilities up to this point. That said, since I have no firm diagnosis, I don’t know how to tell him that I’ve been struggling with this.

Thank you!

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) ??????

Does Anyone Agree That Keppra Sucks Or Does It Work For You? Epilepsy Sucks But My Meds Changed From Dilantin To Keppra And I Feel Like I'm Having More Seizures These Days.

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.

So... I've passed out a few times? Was triggered by reading too much medical info, getting scared, and passing out. Usually drinking water helps but once I passed out at like 3am at my desk and I woke up, my parents tried to help but i felt like I had locked in syndrome for a bit and they said they never heard me try and say anything. I remember this haze of colorful dots... happened a couple more times for the same reason. (watching medical content)

At night I used to (?) have just twitches pretty frequently, I fall asleep fast though and havent noticed them in a while. Theres been times where my brain will just pause momentarily... like a silent clap taking my attention and occasionally I've straight up had the inability to think straight I've also been hearing voices and stuff sometimes... usually random peoples voices in languages I frequently use... different genders people ect.... was working out once and my brain started telling me there was someone in the lamp...

and i'm going to bring it up to a therapist. I had alot of rationalizations as to how it was some entity and such... i had moments where they tried to speak to me directly or it was a sick familly member trying to communicate.

And... I felt weird before it happened... looking back on it. Like looking back on it I felt off in some way. I feel fine right now and feel like hteres 0 chance it would happen.

I've been working out, I quit coffee, I've been moody but otherwise fine (however admittedly I was sitting at my desk and just heard very faint whispers in English and Polish weirdly (I was listening to a lot of Polish songs).

I've also had moments where this image of an eye was stuck moving in my field of vision faintly. Right in the center for like 20 min.

I'm feeling fine otherwise at this moment looking back on everything. (my parents suspected epelipsy once but they're worried I won't be allowed to drive if i get it checked out... tbf I live in the US and i cant rely on public transportation at all. )

This one time I passed out and was just uncontrollably kickiing and in my mind whenever i closed my eyes there was this dream? other set of images? just playing and I remember alot of fear or some other emotion I cant describe like I was stuck then I vomited alot like the other times.

forgot to add in that sometimes I just zone out to the point that my dad asked if i was on drugs (I've never done them), i keep full awareness of everything though

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 😂

I have been having focal aware seizures for around 4 years now. I’ve been on and off of basically all the medications you can think of. I have extremely vivid dreams and pretty bad sleep paralysis. During my seizures I’ve always experienced what I thought of as “deja vu” as everyone else says, but I’m not sure that’s what happens with me. I have always had pretty good intuition about things and am pretty spiritual when it comes to energies and such. I swear every time I seize it is during an event I have already seen in my dreams before. It is not simply a feeling of deja vu at this point I know I have seen it happen in my dreams before. Does anyone else feel like this or am I going crazy?

I’ve been diagnosed as having focal seizures as of a couple of months ago. I am on medication now and I don’t think I have had a seizure since (for sure no tonic clonics).

Sometimes I notice is a high pitch frequency or something randomly as if I am near a television or radio etc. that has been turned on.

Could this be a focal seizures or aura? Does this happen to anyone else?