I just had a neurologist appt and they are currently checking my levels. Asked for something to curb these short term focals in order to keep working.

I can't keep working full time in this condition. I've already had one seizure here-- luckily I work in health care so I have immediate help. But I feel like I'm close to my limit. It's just getting harder and my seizures are getting worse.

I was diagnosed with this and my neuro said this is extremely rare? It took me awhile to get diagnose and i lived with 8 seizures a day for almost 3 years with many doctors coming back and saying they didn't know what was wrong with me, I mostly ask who here has local-focal seizures and what happens to you, I've never met another person with this and it's hard.

Wish me luck I have the VNS surgery tomorrow!!

I need some photosensitive and medication resistant epileptic friends. I have one friend irl with epilepsy but she isn't photosensitive, can drive, and her meds completely cover her seizures. I'm like the total opposite. It's nice having a friend who understands being on the meds I'm on but I just feel so alone. Halloween was awful, I had to go home early because of all the strobe lights and I feel so isolated. DM me or comment please, I need people to talk to

Anyone have postpartum RCVS and habe the ongoing headaches, focal seizures and tpnoc clonic seizures? All of that happened to me before i was wheele to the hospital via ambulance. I was diagnosed with PP rcvs am on verapamil & Depokote and ibuprofen for pain as needed. I never had high bp or preeclampsia during pregnancy. Was diagnosed at 7 weeks pp. anyone go through this and can share their story? I feel like a nervous anxious mess.

Hi there, don't mean to sound gross or anything but there have been so many nights where I wake up and my teeth are literally molded into my tongue and there is an extreme amount of drool all over my chest. It's gotten to the point where I have to hype myself up in my head (like okay 3...2...1.. GO) and then literally PEEL my teeth off my tongue. Then my tongues numb all day. What the fuck is wrong with me? Is this connected to my epilepsy somehow? How do I make it stop? Heeeeeellllllpppppp mmmmmeeeeeee D:

My girlfriend doesn’t have epilepsy and she wants to take me to a rave but is concerned about it triggering a seizure, I haven’t been epileptic my entire life I was diagnosed after a stroke triggered by a TBI I’m thinking about getting a pair of theraspecs. Does anyone have advice?

I am on 3000mg of keppra a day (nobody believes my dose) but finally the side effects hit me. I've drank quite a but over 5 years without repercussions and finally they're hitting me. The past few day I've been extremely hurtful towards myself, trying to find any way to end it. Sadly, I've also been extremely hurtful and disrespectful to everyone around me. That voice in my head is screaming to stop talking but my body is in control now... the keppra is in control now, it's like I'm now a passenger in my own body from this. Keppra saved me 5 years of my life but now it's taking control of me, my doctor told me I have an appointment in 4 days for it. Honestly 4 days feels like forever. People of reddit who know or have been on keppra what's your expirence.

Tldr: Keppra was great but the side effects are destroying me. What's your expirence on keppra.

I’ve had myoclonic epilepsy since 14 (now 24), and have been off medication since i was 18. Since my only apparent trigger is poor sleep quality, i figured i could manage without the medications (which made me feel flat and tired). I recently had a flare up, myoclonic jerks every morning for about 2 weeks, coinciding with getting full time work. I found a study saying cutting carbs out of my diet, relying on fats for energy, was the original treatment for seizures before anticonvulsants. Since starting the diet 2 months ago, not so much as a twitch. I feel on top of the world, the first time i feel safe getting up early. I’m obviously not telling anybody to go off their medication, just sharing my experience because i wanted to vent. Also, carbs are everywhere, and its been quite difficult to avoid them. I just can’t believe my doctors never even suggested this to me my whole life, and that anticonvulsants were their first and last line of treatment.

TLDR: stopped eating carbs, stopped having myoclonic seizures. Not saying itll work for you, just very pleased 😀

I was diagnosed when I was around 11. I had no signs of when a seizure would come. When I was 19, I had multiple seizures; over 30 in a few hours (tonic-clonic). This affected my health. I don't remember that time at all. I was bedridden, unable to do anything on my own. I was a surgery candidate, but I opted out. I am a dancer/choreographer, and the possibility of my motor skills being impaired was just not an option for me.

I developed auras by that time. There were some sensations that gave me the sign. Now, that has changed. I also saw a study that stated auras as simple partial seizures. My "auras" can be quite overwhelming. My senses change, this includes touch, taste, smell. I've had and, to a degree classified seizures.

Basically, I couldn't understand that you can have more than 1 type of seizures. Tonic clonic are a bit rare, but seizures during sleep have picked up. I have partials that multiple come up at a time, like a body spasm that even makes me sound odd, like a chocking sound, impending doom, and at times facial numbness/drooping. I've "woken" up after a seizure, at times I'm half aware but I cannot understand my surroundings and I start sobbing. Not because I want to, but my brain just does there and I cannot stop crying. I've found myself even questioning if it truly continues being epilepsy.

My point with it all is to ask, what is your experience?

Anything you've noticed?

Is your experience similar to mine?

Do hormones also affect/worsen the amount & intensity of seizure activity?

Have your seizures changed? How about "auras"?

Hello, I am a 19F and I got diagnosed with Epilepsy two days ago and got out of the hospital today. It all started with Deja vu and what I’ve read on here to be “partial seizures” but didn’t know that until today. The other day I had 3 seizures in a row (my first ones ever), starting at work and ending in the emergency room. The doctors were not very helpful and the nurses wish they could’ve told me more about my diagnosis. They saw nothing wrong on my MRI besides a few small scars and nothing wrong on literally any other screening they took. I’m so confused and I just want to know why I have epilepsy? Are there causes? Is it hereditary? I got barely any answers and I just want to know why I seized and why I have this diagnosis?

Pretty sure this is medication-related because I'm on quite a high dose (600mg Lamotrigine / 300mg Locasimide) but I'm unsure. Basically, I keep waking up screaming/yelling and in a couple of cases I've been woken up by my mother while sleepwalking and screaming at the same time. Quite unsettling for everyone involved.

My dreams have gotten super vivid and strange since my last medication increase, but I've never experienced this before or heard of it happening as a side effect. Has anyone else had this happen?

Epilepsy nurse hasn't heard of it happening before either, but it keeps happening. Maybe twice a week.

I’m not handling this well. My anxiety level is 10000%. My brain is going to give up on me before my body does. Im imagining that I’m going feel like I’m in my 70’s while I’m in my 50’s and I’m going to die a slow miserable death with people having to care for me….

Both epilepsy and diabetes affect the brain and cognitive function. My memory is already at a deficit according to an evaluation I had. I’m really scared and nobody seems to understand. They just keep saying it’ll be ok. But they don’t have to do all the work to maintain a functional brain. I’m really afraid of developing dementia. I’m 44 years old.

Hi All,

Has anyone been able to records request the video from their Video EEG?

A couple months ago I had a Video EEG stay - I was in the hospital tied to the bed (awful experience) for 14 days and on the last 3 days had two separate series of cluster seizures. I want the video files for the events in which I had cluster seizures, and submitted a records request but the Doctors are declining it and only offering to show me in person. Is this legal? Has anyone been able to get the video from a Video EEG?

I have epilepsy that is caused by lack of sleep. I’m gonna be going to my first concert on the 24th in NYC (MSG), which is gonna go pretty late, like getting back home around 2-3. Any advice on what I should do leading up to this, to prevent any seizures?

I’m oozing. Just sitting in the corner of a coffee shop after ordering a coffee made with cream (keto diet). I’m tired and scared, acknowledging I’ve come so far intellectually with handling seizures. And then PTSD stuff, auras, a full blown complex-partial not matching up with mindful, evolved thoughts and actions. Moving slowly, taking care, eating, being in sunshine. Ugh epilepsy.

Self-care, self-worth, love, gratitude. Work stress, fear, busy city streets, to-do lists. Workplace rejection. Money. Relationships. My heart hurts. My brain is heavy. My muscles hurt.

I was trying to watch The Void with family tonight but had to leave the room for an essential scene like 1/4 of the way though because it was constant flashing. The movie wasn’t marked with photo warnings or anything at all. I think about 3-5 min of straight up flashing would qualify, no? It just pisses me off that even the most basic warning is too much to give before it’s either “pandering” or I’m “being needy/dramatic” (last gripe not aimed at family, just idiots online who get mad at trigger warnings).

So I'm night one of starting 2k keppra should I notice any changes? I'm also hoping to come back and say I've gone longer than 3 months without having one. I was able to get a hold of my neurologist and he made the adjustment

As the title says: Hi! I just went to neurology today, and while I did get an EMU visit set up, and much sooner than the initial date they gave me, I realized I gave them incorrect info. And I believe that largely because of the time of "when they started", they seem to suspect it's PNES rather than epilepsy.

I checked an app I've been using as a diary to try to backdate when my seizures began and when I first recognized they were probably seizures, only to discover it was a full 3-4 months earlier than when I told them today. The approximate range I gave them happens to line up with a stressful time in my life, but I'd been having these episodes for months before then, and then about a month before THAT, and that's the actual time they started. It also happens to line up with when I was taking Wellbutrin, but trying to get off of it.. I feel like this information is probably crucial enough that I should let them know, but I guess I'm worried they won't believe me since I didn't really try to correct them when they said "began in July 2023". Really, they began in at LEAST March, if not during January or February, which was way before any of the particularly stressful stuff of last year happened for me. Should I let them know about this ASAP, or just wait it out and tell them when I go to the EMU...?

I have a new student in my class who has a medical plan in process for her epilepsy. I still know very little about her diagnosis as we are in the early stage of paperwork.

It’s Halloween and she came to school very excited, but her parents were nervous. Dad informed me that her seizures can be triggered by face paint and gore.

I immediately understood the part about gore, weird textures and the like. But face paint isn’t something I’ve ever considered before. Is this a common thing?

Lights have always hurt my eyes, since I was very young, even on cloudy days I’m squinting like crazy, I have to shut my eyes hard, turn on the light in the room and slowwwwly open my eyes to make it less painful, I watch movies with a lamp on. My stupid ass just realized it’s because of my condition. I mean I thought everyone felt that, i thought it was the way one is supposed to react to the lights….

I'm frustrated. I have a good offer at a CPA frim but the big thing I have to think about is.......TRANSPORTATION. I hate asking my mom to drive me and while it isn't long, it adds up. I have a remote job but it's not year round. But I'm looking for greener pastures as I didn't get called back when I normally do.

But I'm stuck because, well remote. Epilepsy sucks.

I am a 27 yeah old female who has epilepsy. I think I have been dealing with brain fog for the past month. Does anyone have recommendations on how to cure brain fog?

If Trump wins Mike Johnson said they will repeal Obamacare. Meaning insurance companies can deny people with preexisting conditions. Epilepsy is a preexisting condition. It's very possible that we could all lose health insurance for the rest of our life.

If that happens...what the fuck are we supposed to do? If I lose my meds and start having regular seizures again I'll lose my job, my license, any girl I'm seeing, my apartment. I'd be homeless. And I'd rather be homeless then go back and live with my parents because they fucking voted for Trump. Fuck them.

Anybody have good success with Lamotrigine -Depakote( Sodium Valproate) combo?

So… I recently started Lamotrigine (about a month or so ago) and I’ve had minimal side effects (thank goodness) in comparison to Keppra, which messed me up hardcore. But now that I’ve titrated up to 75mg, my memory is shot, and I’m nauseous all the time. Luckily, my neurologist has sent in medication for the nausea, but my memory has just gone out the window entirely. My boyfriend doesn’t believe me, and thinks I’m just being selfish or inconsiderate of him when in reality I genuinely am forgetting just about everything. I have to sit and think about whether I’m 24 or 25. Like not the normal, quick second, am I 25? But genuinely have to do math because I can’t remember how old I am, my brain keeps forgetting. It’s ruining my relationship and I feel so worthless. I guess I just want to hear others say it gets better when you get used to the medication? Maybe?

This last April I was diagnosed with juvenile myoclonic epilepsy after mistaking it for tics. I’m totally lost on what to do with medicine because I’ve had so many issues.

I have tried keppra, lamotrigine, zonisamide, and onfi. Keppra was the only medicine that genuinely worked but I was so unbelievably tired, Lamotrigine flat out didn’t work, zonisamide made me really irritable and I had the worst brain fog, and onfi Is not working. All of the medicine I’ve gotten prescribed is partially working. I don’t have any myoclonic seizures after I wake up but I have myoclonic seizures whenever I close my eyes?

I’m about to go on topamax but my neurologist said that it’s similar to zonisamide. I do not have high hopes for it and I’m really sick of dealing with all of this medicine. I tried to get Briviact but my insurance won’t approve it.

I have thought of getting a VNS but after reading through the side effects I don’t think that’s worth it either. I play two wind instruments and I need to be able to breath. I just don’t feel like anything is working for my lifestyle. With everything thing I’ve tried I’m gaining being seizure free and lm losing doing the things I love.

I’m really confused with all of this and I’m so tired of fighting with my insurance!

I have only ever had a 45 minute EEG before. My neurologist kinda sucks. It took 2 years of me expressing my extreme anxiety over uncertainty of what's happening in my brain, if every twitch is a seizure (i have myoclonic epilepsy) for him to order another EEG. But because my epilepsy is better controlled now (yay!) he ordered a 5 day one to make sure we get some good data. And I am terrified.

Terrified of being stuck alone in a hospital room attached to things for 5 days, sleep deprived and in med withdrawal. I'm traumatized by my epilepsy and this is basically my worst fear. Anyone who had longer EEGs, would you mind sharing your experience? Some more details so I know what to expect? How did you get through it? I know this is a good thing but goddamn I'm afraid

I am currently living with my young brother (19M) and his hard it rough with the seizures. I see how it affects him especially socially and I try my best to still expose him to different experiences just saw he doesn't feel too left out but with caution knowing his condition. If they are some simple ways I can make his life better in anyway I am kindly asking for those tips🙏🙏

I am on a bunch of different meds and found out that THC can actually be deadly with them. Found that out last night when I had a seizure and had no pulse nor was breathing for 6 minutes and 37 seconds. I don't remember any of it but make sure you check your meds before you do anything like that. Please.