I just had my third vns surgery on the 27th, everything went fine. I figured the sore throat was just from the tube they shove down your throat, I was very wrong it feels like im being strangled every 3 minutes and swallowing glass. I couldn't reach any doctors due to it being a holiday and its been constant phone tag this whole weekend, thankfully it should be getting fixed tomorrow but its taken such a mental toll on me

I'm do want to go for solo overseas trip but I'm concern what if I suddenly have a relapse in a foreign country and no family/friends around. Has anyone gone solo overseas trip even after getting Epilepsy?

I’ve been reading this book, Dangerous Grains, and I’m curious if anyone on here has changed their diet to gluten free and had positive effects with less auras/seizures? I’m digging again to find out what’s causing my seizures - a whole lot of trial and error. For 11 years every couple months I go into a rabbit hole of “what ifs”.

Thoughts?

Hi guys. First off I don't exactly know if I should even be here, but I figured this community was the best to ask. I have not been diagnosed with any seizure disorders as of yet, mainly because I haven't had health insurance for more than a few months at a time. But I do have seizures. Problem is, my fiance wants to go to a concert, but the lights aren't exactly ideal. I've been told I have seized because of lights before but I also don't know how to manage them? Like some people can tell i think, but if so I don't know how to read the signs. Anyway, I really want to go to a concert with him, but is there anything I could do to not have to look at anything but still enjoy myself? I suggested my blind fold i use for sleeping, because I need complete dark when I sleep, but my fiance said some people might find it weird. I don't really care about that because it would benefit me? Is there glasses that block stuff out? Please help Im a bit stupid. Also I am aware I need to get checked out, but I do not have health insurance right now. Good news is my work health insurance starts kicking in next month so that's cool.

My partner was recently prescribed Lamictal after a brief history of seizures recently (three seizures in a row a few weeks back, possibly one a few months back and their very first seizure close to the start of summer). I am an extremely anxious person and I have been having a lot of trouble stressing over what I can do. I struggle to sleep at night with my partner as every time I get thoughts of “what if they have a seizure again right now”, and I end up being very audio sensitive to the noises they make to the point where I have mini panic attacks if I hear something slightly similar to what I heard during a seizure. At one point I thought of getting some kind of long distance baby monitor just to be aware of them having a seizure when I’m not around (we dont live together). Is there anything that I can do that can make both mine and my partners lives a bit easier and stress-free?

I'm on Lamictal *XR, 500mg (2 pills of 250mg). The soonest I could come off my medicine, if I waited until I talked to my doctor, would be mid-February. I'm not waiting that long.

Would it be best to cut a pill in half, and take 1.5 pills a day? Or is there a better way?

Hi I (22F) have JME and grand mals for reference, but I was wondering if anyone here has/is doing the carnivore diet and noticed any difference positive or negative and if so would you recommend it? I’m on so much medicine and have been since I was 14 (along side a VNS that I got a year ago) and my seizures are getting worse so honestly any help or advice is welcomed. Thank you:)

I was diagnosed with absence seizures 8 years ago. And everytime someone or the dr asks me when did i last get it i have no idea how to answer it. Mostly because idk what counts as a seizure in my case. When i get headaches do they count?? I’m get them from too much electronics, lack of sleep or missing meds. The feeling of a zap going through my leg or arm, is it a seizure?? Not a jerking movement, just like a zap? Focus has been good for a while but now not so much too. Zoning out could also be out of boredom. So i have really no idea except for the jerking movement. Memory at an all time low rn :) if u have anybtips would be great.

I’m going to start strong by saying I have been having seizures off and on for the last almost ten years of my life for, according to neurology, no apparent reason.

I was in a severe car accident when I was 11, despite my injuries (brain damage included), I made a fairly stellar recovery all present issues aside. Though, at the tail end of 7th grade, I suffered from two back-to-back Grand Mal seizures. Convulsions, foaming at the mouth, whole 9 yards.

Three of my four teachers came to the hospital to comfort and talk my mom through what happened, and simultaneously the doctors were telling me and my mom that it was simply “Mild Heatstroke” caused by dehydration, but my teachers called the BS instantly.

After recovering from those seizures, I had an uneventful 8th grade, started high school, and was going great!

Then, in October of my freshman year, I had another seizure while at the state fair with my dad. I didn’t convulse or anything major, but I lost consciousness I think. It wasn’t a severe enough incident to be hospitalized, but I stayed in the first aid station until my mother came and got me, and that’s when both my parents came together to get me set up with a neurologist.

Long story short, they ruled out photosensitive epilepsy (flashing lights and whatnot), and dehydration. What they suggested though, was a myriad of things. Low/high blood sugar/pressure, stress, anxiety. They even suggested they were simply sporadic with no root cause. After the incident in my freshman year of high school, things calmed down.

I would have the occasional “stare-off” seizure, which sucks, but sure beats the alternative. Then, just last month on the 17th, I had a severe Grand Mal seizure. Mom timed it. Eight whole minutes. Convulsions, foaming at the mouth, demolished my tongue (still can’t fully feel part of it).

Went to the hospital, stayed the night, had all sorts of scans. They came back inconclusive, said everything was fine. Clearly, everything is NOT FINE. Now, a smidge over two weeks later and I still feel disoriented and awful from the latest seizure. I constantly have that aura, no matter what I do, and it’s just killing me. I can’t drive, can’t learn to do it to begin with. It gets in the way of finding work, being active. Everything.

I just feel like a husk. I feel lost, I feel confused, I feel like a burden. I just want to know what’s wrong with me, I wanna feel normal. It’s been nearly half my life living in constant fear, and I’m sick of it.

Does anyone else get attitude when you can’t make a social event because of a seizure? I’m very lucky that I don’t get Tc’s. I have temporal lobe epilepsy so my seizures really fuck me up mentally. Weird thoughts/voices/memories. Just the strangest, nauseous feeling overcomes me. Then I’m left with a weird feeling and pounding headache. I’m sorry I can’t make it to your baby shower, but if you were in my head you would be telling me not to come. Just frustrating!

hello,

i’m currently sitting in the ER because my symptoms are really starting to freak me out. i am fairly certain at this point it’s my brain and not just my mental health.

how can i get them to stop focusing on anxiety/panic attacks ? i’ve never even been one to be super anxious and have panic attacks. i know the difference, whatever is going on is much more sinister and my brain is so foggy, getting foggier by the day. i am alone and a young woman and i am very bad at advocating for myself.

thank you

I smoke a good amount every night and I’m going to do some tests to see if I can qualify for brain surgery will weed affect the test results

How do I explain to someone the effects Keppra had on me? I am treated like sh!t by my sister in laws husband and his family because of some stupid stuff when I was taking that medication. They don’t understand and don’t care to listen to a thing I say, like I’m not allowed at my sister in laws house and not acknowledged when around them. My sister in law has tried to say things to them about it too but they don’t care to listen to her either. It makes everything harder. I am kinda at a loss because we can’t do anything without issues. I guess having an invisible disability makes things 10x harder for people to understand.

I'm 17 and my last seizure was over a year ago now (early November 2023), there was also a couple times I think I had one in my sleep but wasn't certain, but I still feel worried it could still happen anytime. around 6 years ago when I was first diagnosed and they said that dying was a possibility, that stuck with me. I could be laying in bed, thinking about it then I start feeling stressed and keeping me up. There's more but I won't go on here.

I'm in England (Yorkshire) and feel like I need to talk to somebody in person about the effects of my epilepsy. I looked at the NHS website but to sign up you needed to be 18. Are there other ways to go about this?

I had my scariest seizure a little over a week ago. Up till now I would black out before the seizure started and come to after it was done. But this one i was conscious going into it. It was absolutely horrifying. My eyes started darting back and forth then my head started moving. I couldn’t stop it and its just really been fucking with me. I was crying when i came out of the seizure which has never happened before. Any advice on how to mentally soothe myself? When i think of it i start to panic and or cry. It was just so scary.

I’m 15, and having epilepsy sometimes sucks and sometimes is the best, It’s embarrassing explaining to other teenagers that I have this condition because I’m embarrassed of it and I hate it when I’m having a bad day and I can’t go out with my friends.

what’s your experience?

Since I started here I always see people saying that they have, for example, 6 seizures a year, 5 seizures a month and things like that, so I started to get scared. I thought people had seizures at the same rate as me. I am drug resistant

I have recently been diagnosed with temporal lobe epilepsy. It began two weeks ago after being given an overdose of anesthetic at the dentist. I have had some very weird symptoms that I have not heard anyone talk about, and I'm wanting to know if these are effects that anyone else has experienced or if I should be worried there is something additional going on. Basically, it started out that I felt people had lost their mental "profile pictures". Like, I could imagine people's faces in a literal sense, but it didn't feel like them. It felt like I couldn't conjure an image of the person in my head, I knew various facts about them but I couldn't intuitively attach it to an identity. It began with a few specific people and then spread to more and more over the coming days. At this point I feel deeply confused, almost like the different people in my life are merging into each other, my feelings about one getting attached to a different one and so on. It's very scary. I know about jamais vu and deja vu as symptoms of the seizures, but it basically feels like they're not going back to normal afterwards, even after the seizure stops people don't look all the way like themselves anymore (although they are somewhat closer than during the seizure aura), and each time I have a seizure it gets worse. And it feels, as I said, like different people are merging into each other and getting mixed up in my mind.

Note that I don't think my seizures are lasting an especially long time, they're focal aware seizures and I'm never losing consciousness, but I am having seizure aura symptoms basically 24/7. I can talk with my neurologist tomorrow but this is all new to me and it's extremely scary, so I'm trying to look for some comfort before then.

I'm worried that even if my seizures get treated, all my loved ones will be so scrambled in my mind at that point that I won't know what I feel about who, which is a really really troubling possibility.

I’ve been on Depakote ER (1000 MG) to treat JME for 27 years. I’ve been seizure free for 6.5 years. Previously I had break through seizures while on Depakote and gone through periods of being seizure free while not on Depakote. I had male pattern baldness which I stopped with finasteride for 20 years. Recently (past 2 years) my hair is thinning all over my scalp and I’ve tried almost everything to address it (switching from finasteride to dutasteride, taking oral minoxidil, microneedling, PRP treatments, Ketoconazole 2% shampoo). I’m thinking my Depakote could be causing the diffuse hair loss. My doctor keeps encouraging me to try to taper off Depakote (since it can cause hair loss and damage my liver), but I’m not sure if I want to risk it. I could also switch to Keppra, but switching might make me more prone to seizures than tapering off Depakote and possibly going onto Keppra later. What are your thoughts?

Those of you with lights being a trigger for seizures, how do you handle going outside at the moment & during that whole Christmas time? I feel like my sensitivity for lights gets much worse every year, once it’s dark outside I can’t even leave the house anymore because everywhere is shining christmas lights and decoration…

I've been seizure free for around 3 years now. My current life is now better my levels are normal. I was 4th in heavyweight in my Conference for wrestling. And now I'm pursuing my college education in the fire service / ems. (Sorry for being very direct I'm bad at telling storys)

for a few years now i’ve had these strange head sensations that i can’t describe very well except that they’re scary and make me feel like something bad is going to happen. more recently i’ve been getting a rising feeling in my stomach that goes up to my chest and i start to panic. i would like to say first that i do have anxiety and a panic disorder (which i’ve had most of my life) but i never had feelings like this growing up. i’m on clonazepam for my panic attacks but wonder if it’s actually stopping seizures?? i go down a rabbit hole every time i have a strange sensation and it’s driving me crazy.

My friend has seizure, and so far he got 5 seizures this year. Is he safe? 😢 How about you? do you keep record or are you taking notes?

Is there anything you have found that has helped overcome the daily fatigue & horrible sleep? 40m.

I’m active duty Army. Last year, I took a flight from Alaska to North Carolina, which marked a drastic change in climatic conditions. I spent my time in North Carolina conducting a training event in the scorching heat. (The average temperature during my stay was between the 80s and the high 90s degrees.) Shortly after returning to Alaska, I immediately conducted another Field Training Exercise (FTX), sleeping in a tent outdoors in northern Alaska. The temperatures plummeted to as low as -40 degrees. About two days into training, I had a seizure. To my knowledge, I’ve never had a seizure before.

I’m curious if there’s a chance that exposure to extreme weather changes over a short period of time could be the cause issues with seizures?

TLDR

I have had epilepsy, absences and tonic-clonic seizures, sinze age 9. I am now 38.

A few weeks ago I had forgot to take 1 500mg keppra in the morning and later that day I got a tonic-clonic seizure. This was an whole corfuffle, due to it I also locked myself out and my parents drove all the way over to here and even paid for fixing the lock..

But today (now) I suddenly feel it is back. The same feeling I had that day. I think I dó might have an aura, even though I never thought I did. For hours now I am lost for no reason in my 193ft (geez that sounds suddenly big if you say it in feet lol) appartment.

I think everyone knows that feeling when you walk to a room and forgot what you were going to do there. I have that now in the same long-lasting episodes (room after room after room as if in a maize) as when I got the last seizure. I have not forgotten my keppra today :'( Which might mean the epilepsy is just back back... it would have been more handy if the forgetting the keppra was the easy culprit...

I have let my loved-ones know by the way. I have my first appointment in januar with a neurologist. And then probably in april my first EEG. Because healthcare waiting times JAAAY! :)

What can I do in the meantime? TLDR What are things people with active epilepsy can do to protect themselves?

- I already have planned to buy an emergency bracelet and dogtag.

- Some kind people in here told me about an app that is basically the same as the energency bracelet and dogtag

- I reluctenctly decided to I guess... just walk everywhere then. Sigh. Normally I take the bicycle for things that can be easily walkable. Sorry I live in the Netherlands. Really great place for people who are not allowed to drive lol! But now with my bike I am afraid to fall harder; so I guess walking is safer.

- Are there other tips I might be missing? Does headgear/headscarf do anything? I might be to vain to wear an full-on helmet; but a hoody might be better then nothing?? I wear headscarfs so I ám kinda thinking to secretly sew extra padding in it lol

- etc.

Are there people who lie to their doctors to keep their driving privileges? Would you ever lie about your condition to maintain your driver’s license?

Where I live, I rely on public transportation to get where I need to go, so having a driver’s license isn’t essential for me. Additionally, hospitals in my area are required to report information about seizures to the DMV.

I'm aware during. Sometimes I hold my phone during the episode to record, sometimes I can't. The pain feels like a electrical shock wave from the top of my head to the bottom of my foot. I don't feel it every time during, but I do seem to say OW afterwards even if I don't feel it during.

Been to multiple doctors with no answer. They won't even give any answers what the episodes could be.