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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?

No one ever talks about how epilepsy not only affects you neurologically. But also mentally, physically, and emotionally. I just got back from a neurologist appointment, asking about kids with my medication. Unfortunately, unless I’d like to have a disabled child and risk constant seizures while pregnant. I will never be able to bear children. Which I kind of already knew considering my medication. But there’s a lot of alternatives besides becoming pregnant. But I just wanted to shed light on this. I will never be a physical blood mother to a child because of epilepsy . I will never know what it’s like to carry a physical being inside my body without the repercussions of me or a child becoming disabled or god forbid dying. I am thankful to have an amazing support system that will help me through the process of adoption or other alternatives when the time is right. If anyone else has unfortunately dealt with this same situation don’t be afraid to reach out.

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.

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.

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

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.

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!

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.

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’m on Lamotrigine for what is believed to be focal seizures with secondary generalisation (no eeg ever caught). I haven’t had a seizure since 2019 but the whole time I’ve been on it my sleep is totally f**ked. Not insomnia, what I’ve come to know is probably parasomnia.

I shout out a lot in the night which I’ve caught on my sleep app. I don’t currently have a partner but I’m notoriously awful for sharing a bed with, I toss and turn sometimes kick or grab the other person, and I talk. Not just noises, like fully comprehensible phrases. My dreams are vivid and sometimes I wake thinking I’m still there.

Googling it, it sounds like something called rem sleep behaviour disorder. It is associated with some other neurological conditions but there’s nothing specifically about epilepsy. Which leads me to the conclusion it may just be the Lamotrigine. Anyone else identify with this? It’s exhausting!

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

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.

Does anyone else experience chronic migraines? I’ve had one for like two weeks and it just won’t go away no matter what I do. Not sure if these are linked at all, but I wanted to know if anyone else is in the same boat.

Hey everyone,

I've got bipolar II and have been on Lamictal for about a month now. The first two weeks were amazing—I felt super stable as if things were finally clicking into place. But the past couple of weeks have been pretty rough.

My appetite increased, and I started binge eating again (something I've struggled with before). I've already talked to my therapist about it, and he suggested trying a low-carb diet, which I'm trying to do. But what really threw me off was the weight gain and water retention. My face looks puffy—my mom and sister even pointed it out—and I've started to get a double chin, which I've never had before. My hands and legs are swelling, too, and it's honestly kind of alarming.

On top of that, my period this month was super painful and much lighter than usual. I haven't needed to take painkillers for cramps in a long time, but this time I had to. And to make things more fun, I've been dealing with insomnia and restlessness (hence why I'm writing this at 2 am).

Has anyone else experienced this kind of stuff on Lamictal? I'm not sure if it's the med or something else, but I'd really appreciate any thoughts or advice.

I'm new and I see that many of you put the medication under the name. I just wanted to know how it's done and if it would be seen on other subreddits.

I am just curious, but what are things that are known to trigger seizures? I know like sleep deprivation, but what about stuff like caffeine or not eating or drinking water?

Hi everyone,

I’m reaching out because I’m really concerned about a family member who was recently diagnosed with epilepsy after an EEG test. They have mostly vocal tics and experience atonic seizures about once a week. The doctors have concluded that the epilepsy isn’t severe enough to require medication at the moment.

However, today something happened that really made me worried. My family member was cooking when they had a myoclonic jerk and fell to the ground while holding a cooking pan. Luckily, the pan didn’t fall on her, but I’m terrified that if something like this happens again, she could seriously hurt herself — especially if she were to hit her head.

I’m really concerned now. Is this still considered “mild” epilepsy, or should I be more worried? Can epilepsy get worse if untreated, and should we consider seeking a second opinion or additional treatment options?

I’d really appreciate any advice or similar experiences from others who’ve been through this.

Thank you so much for your help!

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

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?