Is anyone else not afraid of dying? Like you’re not suicidal, however somehow don’t care? I’ve left everything ready. I have a cemetery plot. I have life insurance ready to be cashed out. Everything is set. I love my life. However somehow I don’t care? It’s weird. I don’t wish for it. However it everything is ready.

So I got diagnosed with cortical dysplasia when I was 16 probably the worst time to be diagnosed as a teenager😭 but like all of you I have to accept that this is my life now. I’m 21 now and my condition is fine my seizures are manageable but there is one thing that I still can’t get over. Once I was diagnosed I was basically told I couldn’t do anything I once aspired to do or be I can’t even set out to do because I have epilepsy. I can’t join the military, I can’t play football anymore, Im not allowed to be a firefighter, I can’t become a boxer, I can’t become an astronaut. All things I wanted to do in my life or at least attempt because yes realistically I wouldn’t have done all of them but I could’ve tried but now because of epilepsy I won’t ever know. I’ve been thinking about it a lot lately thinking if I’m happy with my career and what life would’ve been like if I didn’t have epilepsy. So I guess the question after that rant is does anyone else have and dreams or goals you wanted to do but can’t because your condition?

People with epilepsy, how do you want your family to treat you? I mean, are we making any mistakes in understanding your problems and feelings?

Also, Caregivers, please share your thoughts on this.

(30m) I hope no one here ever has to experience something like this in their lives.

I had previously thought I was experiencing panic attacks for years, the entire time they were siezures.

Back in February of this year I suffered a siezure at work. I was clueless of what was going on and while standing up straight, I broke both of my femurs, nine discs in my back, as well as one rib.

Since this incident I've felt very upset at myself (wrong choice of wording) about my situation. I was told I had epilepsy that I let go undiagnosed for years. That I may never walk the same way again. I may have back pain for the rest of my life.

At the same time the very same doctors are impressed. On the other hand to me it feels like I am a test subject. The more I read into this and the more I ask doctors I think my case is extremely rare. That fact alone alienates me in my mind.

Has anyone else felt this in their journey woth epilepsy? Whether it be bones breaking or feeling like your experience is too unique for a doctor?

I am sorry for the long story, I am so new to all of this. Beyond overwhelmed. I hope you all have a blessed week!

I'm recently diagnosed with focal seizures. They started me on Keppra and though I was scared after reading all of the horror stories online of Keppra rage / brain fog etc, I've been pleasantly surprised to find no ill side effects yet. And I'd even say my brain fog and fatigue are lower since starting it 2 weeks ago. Possibly due to no longer having the nocturnal seizures but I don't know. Maybe I'm just one of the lucky few who tolerate Keppra well. Anyway, I'm currently on 500mg once a day (taken before bedtime each night). And overall I feel great. I don't think I've had any focals since starting it. Now, I KNOW it's early so I could have one anytime. I'm not working right now and my stress levels are relatively low so I was having only about 1-2 a week before Keppra(but the brain fog & fatigue would last days after so I was basically always tired / foggy). Before taking keppra & while working and during stressful times id have multiple a week.

Anyway, I just notice a lot of people are on like 2000mg / day & more so I'm wondering if there's others out there that maybe got to stay on a lower dose. Im not afraid of raising my dose or switching meds if my seizures start up again. Im just pleasantly surprised to already be having relief on just 500mg / day. Anyone else stick to a lowish dose of Keppra or other anti-seizure meds?

I am 18M and I was recently diagnosed with focal/Partial Epilepsy. It stole pretty much most of my adolescence and all of my teenaged years. I remember the night it all started, which was when I was 11 and it was Christmas Eve of 2018. I was playing Fortnite with my online friends and I suddenly got this weird feeling that felt like the world around me and my perception was distorted. Like I was looking in a dream. Unfortunately I couldn’t explain it to my mother that well due to the fact I was only 11 years old. She took me to the eye doctor and I coincidently was diagnosed with dry eyes. For 6 years after that I lived with that feeling in the background constantly. It was chronic, and never stopped. But I learned to deal with it and after 2 years with it. It was a low enough baseline that I didn’t even notice it any longer. But I could feel that something was different. My memory and short term memory was worse than before and I could notice a slight drop in my emotional output. Like it was dimmed. Overtime I adapted to this feeling as well as the emotional dimming and difficulty with short term memory. This all went downhill around October of 2024. I was diagnosed with Adderall and started taking it for my anxiety problems, this is when this “feeling” that I had spiked. I was freaking out because of how it felt. Pretty much everything I once explained had gotten 10x worse and it was permanent. It was like my baseline had spiked, and never went back down even when the adderall was completely out of my system. Me and my mother went from place to place, we went to my primary doctor, 3 phycologists, an eye doctor, did an MRI, then did an EEG, all came back with normal and “nothing out of the ordinary” results (even though I had braces at this time and they couldn’t see my full brain after the MRI) I then started to get these “wave like” episodes. Where I would feel like I was floating on water. Or drifting through space.I always got this episode right before I entered REM sleep. I would sometimes even zone out during these or just randomly. I would get frequent Deja Vu almost everyday. I then now remember that I would As I dug through every thing on the internet and explained my symptoms to chat GPT and other AIs that could search the internet for me. I zoned in on TLE. It met very single one of my symptoms and me and my mom pushed and pushed and pushed for a neurologist. But after I saw one and explained everything to them they just pushed me aside, saying it was “anxiety” or “sleep deprivation” but I knew it wasn’t. It then started to get worse due to my starting of abuse of weed and alcohol. It got so bad to where the events that just happened 2 months ago where I started violently shaking after getting a little buzzed on weed. I was completely calm, my mind wasn’t racing. It was my body that was freaking out. And once again my perception got worse. And by this time my emotions were dimmed so much to the point where I became a husk and a zombie. I was at the lowest point of my life and I thought about ending it more than once. I just moved through life like a daze. I don’t know why I developed a chronic aura. I don’t know why I had to be the one with and it and why it is destroying my life and my understanding of life as I know it. But it happened. I couldn’t feel love, joy, or any other positive emotions. I couldn’t even cry because of this. I finally got into a neurologist office and they finally agreed to get me on lamotrigine. They said my symptoms don’t exactly match up but they knew my desperation and situation. So they got me onto it. I go up by 25 mg intervals every week up to 200 mg. I’m now at 75 mg and I already feel better. My episodes have almost disappeared and I feel my emotions and head clearing up already. This is a sigh of relief. I went through all of this and finally got my answer as well as a way to combat my brain. It took my childhood but it won’t be taking my whole life with it. I will say fuck my brain and epilepsy but it isn’t my brains fault entirely. Thank you for reading my story if you’ve made it all the way down

For me, it smells like a hospital. Not sure why lol, just something I've noticed. But I'm curious as to why this is? I mean the seizure I had last night happened in the shower, so, again, why a hospital?

Hii! I have photosensitive epilepsy and have had it for ten years now. I absolutely love live music and have done my whole life but have only been able to watch videos online. When i was 15 i went to a gig and had to leave early unfortunately due to me not feeling 100% i’m now 18 and wanted to try again, i’ve noticed i’m getting better with lights maybe more of a tolerance than i did a couple of years ago! so i went to see Chappell Roan yesterday i had vip so wasn’t to close but not to far away that i couldn’t see! and i didn’t even need to use my glasses i have for flashing lights! (not blue light glasses but a particular shade of sunglasses) due to scar tissue unfortunately i won’t grow out of epilepsy but i don’t think that means i shouldn’t get to enjoy the things i love! it was super nice to not be anxious or anything. Had to speak about it here because everyone’s sick of me already🙈 i’m always careful and 100% know my limits but this truly felt like a milestone for me!

I'm sure you are all wondering why I asked you to read this today. The short and sweet of it is that I'm starting day 4 without falling down.

The is a huge accomplishment for the US as well as the world economy.

I'd like to think Chuck Noirs and Keanu Reeves for getting me this far.

Hello everyone i have a question about Epilepsy Monitoring Unit? What should I expect? Can I take book with me? And are is portable game? And what does this mean for me am I epileptic? Or non epileptic? Thank u for reading

Hey all! Basically the title! I just started college, and am hoping to have my cat join me here soon. I'm not supposed to be behind a locked door, so I keep the dorm door cracked, since they lock automatically. I'm going to talk to the college to see if my door can be changed, but how do I keep the door cracked and not have the cat roaming the halls when I'm asleep? Is there a secret method I'm missing out on?

I had a really bad time on keppra (almost took over my life, literally). I told my epilepsy team I don't want to be on it atall so they took me off and swapped for different medication. However since coming off, although I feel 'better' mentally as well as I can be, I'm having panic attacks and nightmares with the reminders of the effects keppra had on me. Has anyone else ever had this?

Don’t most people end up ok after having a seizure by themselves if they lie down and put cushions on the floor where they might fall? I can’t be with my wife 24/7 but right now I only leave the house to take my daughter to school. I installed camera as well so I can see inside the house while away. But none of this seems like it would be enough. Has anyone had a seizure while alone and how did everything turn out?

I've been on 100mg of Lamictal (50 morning 50 evening) daily for about 1.5 years now, we tried a taper because of good scans, but I had a seizure 40 days after finishing taper so back on meds now. Went back to my same dose, but had an EEG still showing epileptiform activity, so increasing to 75mg morning and 75mg evening

Just wondering, has anyone had an experience where they didn't really have side effects, but then going to a slightly higher dose caused worse side effects?

I don't really feel anything on my current dose.... maybe if I take the evening one slightly too late, I have a bit of trouble falling asleep. But other than that, nothing. I've always been happy to take my "low" dose because I don't like the idea of something changing my brain every day forever, but at the same time, I really don't want to have a seizure again so of course I'm going to increase and stay at the higher dose. Just wondering what to expect. Starting tonight.

Thanks!

I have an appointment with neurology today and I want to know when to stop and listen. I have read a lot of studies about epilepsy and I have the gut feeling that maybe it actually is my diagnosis (got and EEG, CT and MRI and I noticed some things)

I read about the meds normally prescribed for epilepsy and there are some that I don't want to accept if prescribed due to their side effects. How can I advocate without giving "crunchy girl who did her research"?

Update: He didn't diagnose me lol, he said he needed to discuss my case with colleagues, is that a good or bad sign? Anyway, he was super nice! I had everything on a paper like a comment suggested and he was happy to answer every single question I had. Thank you all! Guess a lot of exams are coming my way soon lol

I was diagnosed with epilepsy in January in the beginning of this year. Prior to that, I had been losing some motivation and focus but I thought it was related to my ongoing migraines or issues with ADHD (inattentiveness). I am 33f

After January, I started taking 300mg of lamotrigene (extended release) and just started taking Qelbree for ADHD as the stimulants can be too intense for me. I have had anxiety/depression since around the age of 12.

I am just wondering if things will get better in terms of focus, motivation, depression/anxiety, and just general demeanor the longer I take the medications/continue living with the epilepsy? Things have just felt so much more difficult than I remember them being so I am just curious about other peoples’ experiences with the feelings of motivation loss or depression surrounding an epilepsy diagnosis. Will my thoughts and feelings ever change? Or is this new grey and cloudy perspective the “new” normal?

I did get an FMLA leave from work, which has helped some. The person at work who is helping me with this was also diagnosed with epilepsy, so it is nice to have someone in my corner. She told me it took her about five years to feel “normal.”

Ok full disclosure I don’t have an epilepsy diagnosis. Asking here because I know you guys are nice and know a lot.

I have only ever had one seizure which was around 2 weeks ago. Full tonic clonic, 2.5 minutes. Probably triggered by incorrect medication, and on a side note I’m pretty terrified to take any medication of any form at ALL at the moment…

Since the seizure my sleep has been particularly awful. I’ve never been a good sleeper - frequently sleepwalker, even in adulthood, and struggle with both falling and staying asleep. I do everything correctly in regards to sleep hygiene, I think…

I get up early with my huge doggo everyday and go for a big hour long walk. Don’t eat after dinner, avoid alcohol and caffeine, but nothings working. Work full time in an active job. Have a dark cool room with white noise yadda yadda but … not working.

It’s now 2am, I woke up yesterday morning at 5:15 am. I gotta be up again to do the same in 3 hours, but I can’t sleep. This pattern of 2-3 hours a night has become my new average.

Any advice or tips to help me? During the day I’m so exhausted that sometimes I feel like I’m dying, but at night i just can’t sleep no matter what time I try.

Hi All! My partner has epilepsy and is on Keppra (3000mg 2x per day), Vimpat (200mg 2x per day), and Carbamazepine (400mg, 3x per day). His biggest complaint is his tiredness and lack of energy. His doctor is starting a titration of Xcopri to try to help, but his seizures are currently well managed will few ill side-effects, other than the tiredness. If Xcopri isn’t the solve his current neurologist thinks it is, wondering if anyone has any recs for what they do for sleepiness/fatigue on their meds?

I’ve seen folks simply recommend sleeping 8 hours per night and that helps, so all recs are welcome!

I'm very new to focal/partial seizures. My neuro told me my EEG, MRI and MRA was clear. I told her I've had depression and anxiety for 8 years and this year has been the most stressful living with family members that have connected with childhood trauma. That being said, I brought it up to her that my therapist mentioned it could be dissociation. She dismissed it, ordered a 3 day home EEG and a medication. I noticed I get more episodes when I'm stressed and have feelings of anxiety or depression. Is this also common for focal seizures? I'm very lost and scared as this could be literal seizures or just dissociation involving my stress. I dont feel comfortable starting medication if there's a big possibility its just dissociation, as I'm extremely sensitive to pharmaceuticals, usually getting every side effect.

Has anyone come to the conclusion that their suspected focal seizures have ended up being dissociation or vice versa?

Alright. So I just moved to Wisconsin from Michigan. I’m on disability and have insurance to match.

I’m trying to find a doctor to prescribe my medicine, I’m being turned away because I can’t afford upfront payments, and my Michigan Medicaid doesn’t work here.

I’ve called SSA and updated my address, and I’ve called all of the half dozen numbers given to me by hospitals and clinics to get my insurance swapped to Wisconsin. It’s taking for fucking ever.

I’m about out of meds and I can’t stop taking them. Especially now that I have a job here. I have regular tonic clonic seizures without them. Any suggestions?

Hey so exactly 7 days now I’ve been on keppra 750mg. No side effects so far except daytime sleepiness. Last night there was an incident I believe I was sleepwalking and my grandma thanks so too. My fan was moved but my grandma said she didn’t move it. On my right side I have bruises on my hip, knee, and a bump on my head. I have no memory of this happening or how it even happened to me. I was wondering if this has happened to any of you or any advice. To note I do plan on calling my nuro in the morning and talking to her about this.

I started zonisamide recently and my brain fog is awful! You know the feeling you get when you walk into a room and then forget why you went there? Yeah that's me but 10x worse! So like I'm thinking of something that I need to tell someone so I tell myself to write it down so I don't forget... but then I forget to write it down. However, when I do write it down I've forgotten I've written it down so then I still don't get to say what I needed to say. Sorry if that doesn't make sense! Does anybody else experience this?

I got my neurologist appointment last week and I waited 18 months (Canada) for it. I could've maybe been a bit more prepared for the appointment but I knew it was going to be a bit pointless.. Last year I went through a stressful event where I could have had a few seizures and they included shaking and bending over and I dropped something that was in my hand involuntarily. I've always had "brain zaps" even before (like 5 years before ) I took Sertraline or any medication at all for OCD. My brother is an epileptic. I have a normal MRI.

When I first entered the room, I was greeted by a student studying under the neurologist of the hospital. He took down my story but I felt like he just chose a cluster of my symptoms and didn't take account of the other things. He asked me if I took medication and what for. I told him that.. he asked if I have a history of Tourette's and I said yes it's in my file and I feel after he looked at that file the appointment was over and they found the reason... He called in the neurologist and he explained I'm experiencing brain zaps and it's nothing to worry about no EEG not tests. I tried to ask him for an EEG at least once in my life but he said that's not needed.

But I feel like I experience visual changes and my brain shifting. And I tried to explain that. I had other neurological symptoms like I told him I have experienced deja vu and burning feet and asked him what does it mean in this context? He said nothing see a podiatrist..? I tried asking him what about minor seizures? And he gave a really stereotypical example of a focal impaired.

Should I push for an EEG next time I see my doctor? I felt really shorted especially to wait 18 months to not get any test.