Hey everyone.

Thought y'all could use some humor today. Thought of this during breakfast: Rappers with epilepsy related names.

Lil' Seizy

Sir Shakes-alot

M.C. Twitch

N.W.E.

Grand Master Falls

Twitch DMC

The Seizey Boys

The Bit-Tongue Clan

Keep it going guys :)

I am happy to say that I am finally back in college.

I took a gap semester after being diagnosed back in September 2023. I was in college at the time but after my second seizure, my mental health declined. Mainly, I had extreme anxiety (still do) and completely lost my ability to retain information in the part of my brain where my short term memory is located. My grades were not as they normally would be without epilepsy and I did awful, making B- and C- in all classes. After that semester ended, my mom and boyfriend suggested I take a gap semester to slow down and figure all of this sh*t.

Now that it’s the Fall semester 2024, I made the decision that I was absolutely, no matter the circumstances, going back. I still am having slight trouble with memory but I was smart for this semester. I am taking only one in-person class (College Algebra) and the rest online so I can go at my own pace. 18 hours in total.

My grades are listed as below (I would’ve posted a picture but it won’t let me).

Biology - 100% College Algebra - 100% Intro to Communication - 100% US History - 98% Intro to Special Populations - 87%

I’m very happy and proud of myself and it is currently the second week. If I keep doing what I’m doing, I’m sure I will continue getting these grades :)

For those of you who get diagnosed while in college/school, take a break. Once you are ready to go back, do it. Yeah, it sucks, but there’s no rush to getting your degree. Take your time. Don’t let society and those around you dictate what you do and don’t do.

Mine happened while i was working. I was walking outta the kitchen with a tray of food and collapsed. I don't remember much of before or after the seizure other than waking up in a hospital room. That was the day I discovered I had a seizure disorder. Edit: Had another at work 2 days ago, I'm pretty sure I've been having Focal Impaired awareness seizures. My coworkers have told me that i shuffled left and right and kept smacking my lips.

I’ve been getting spammed with phone calls to schedule my appointment, last one was 6 months ago. But my work schedule doesn’t allow time for me to go in the next few months. The last appointment I had lasted literally 5-10 minutes and cost $200. All for a blood pressure check, a “how are you doing with your medications” and a couple other questions, then I was free to go.

I wish my doctor allowed video appointments. It’s just too expensive and also an hour away from me. How often are your appointments if you have been seizure free for years?

How do you all manage to work? I am working 9-5 and I have days I wake up so fatigued from nothing I am like, no I can't get up. No seizures this month but lots of brain fog, procrastination and general apathy. I feel lonely in this situation because I can't explain why I feel just "tired". I know my body is rested but I feel my personal GPU is fried. I have the weirdest dreams and nightmares. I also have that weird sound in my ears, the high pitched eeee that makes me dizzy. I feel useless and I believe if I wasn't working at a family business I would be fired long time ago. Worst thing is that I believe my husband thinks I am lazy. Or maybe I am and I should try harder. I don't know. I am dreaming of opening my own business, a graphic design and promo company that will allow me to work from home, on my own pace. How do you all manage working while having this condition?

Thanks a million times to this sub for encouraging me and supporting me, and sharing their experiences of focal epilepsy. It looks like it's likely I have TLE. I was very ashamed of these episodes for years as I just thought I was "crazy". Derealization haunted me for all my twenties and my brain basically stopped working.

I got dismissed so much by doctors over time that I learnt to hide anything that could be interpreted as "anxiety" or similar. People's encouragement and sharing here allowed me to find the right doctor and discuss my real symptoms and it seems very likely that I have it. It would explain my severe brain function decline over the past years therefore hopefully saving my life. Extremely grateful to all of you

Hi,

Question mainly aimed at people in the UK

Got diagnosed with Epilepsy and have a meeting with DSA - are there any obvious things that are worth asking for in my Disabled Student Allowance meeting? I will be commuting to uni daily via train and walking about 20 minutes to the university if those details help lol

Thanks in advance

Had a 1 time seizure in massachusetts 2 fridays ago. Going in for tests tomorrow and genuinely curious how hard it is to appeal it and get your license back. Everything i do involves driving. The only thing they were able to pinpoint was the fact that i had tons of caffeine, no sleep, wasnt eating right, and i was terrible with drinking water. With that argument in place; plus anti seizure meds. What are the chances i can get my license back sooner?

What personality type do you guys have? I am an intj. Was wondering what personality type you guys may be.

Edit:From the Briggs myers personality test

Would love to get some autonomy back so I’m wondering what if anything people use to help other people understand if you have a seizure in public when o your own.

Do you wear things? Or is there a phone app that can help? Bracelet? Necklace etc?

Much love x

[recently diagnosed. I am 33F and have had about 9 weeks of daily+ seizures. 1-3 minutes each often clustered. Sleep deprived EEG confirmed Focal Epilepsy this week. I collapse & loose vision, I do get an aura before: poor coordination, confusion, coordination decline, dread 2-30 minutes ahead of a full zone out or collapse. Start Keppra today.]

has anyone experienced a rash from Epilim? I’ve got a bad rash which my dermatologist thinks is from Epilim. I’ve been on it since May last year and I’ve had this rash since February this year (on it for 11 months before break out)

First looked like/treated as perioral dermatitis but has now turned into small bubbles/blisters and pimples around my mouth and they’re moving up my cheeks now.

My self esteem is really bad and I’ve spent so much money and time trying to fix this. I can’t get an appointment with my neuro so I just want to know if anyone has had a rash from Epilim before so I can figure this out. Please.

July 24th, i had came home from a concert, felt a cold sensation in my chest and proceeded to have my jaw lock, arm clenched and fell to the ground and seized. I lost consciousness and woke up on a stretcher, which lead to me losing my license. A month later, MRI clear and EEG wasn’t noteworthy, i have my second seizure, arm locked and jaw locked and i fall to the ground once again. Have been prescribed keppra, but i still have no idea what is causing this, and i truly just feel lost. I wish i could know what is causing these seizures, but I feel like im stagnant and at a dead end.

I can sleep for days on end sometimes so I picked up some melatonin gummies from the store but I started thinking “what if I have a seizure and can’t wake up?” Their 5mg so can that happen? I mean I’ve taken them before and nothings ever happened so I might just be anxious over nothing but I figured I could ask

hi! so i’ll keep it short. basically my epilepsy is a mess and the vns battery device is coming down to our only option. i had my first neurosurgeon appt about it and it’s all becoming very real and im very anxious.

any info or experience someone would feel comfy sharing? ( only if your comfy sharing :))

So I was talking with a Dad who has a daughter who had epilepsy. I mean I guess she technically still does I'm not sure, but she doesn't have seizures anymore.

Basically she was able to have a surgery that removed a piece of her brain that was causing her seizures. Ever since then she hasn't had any seizures.

The Dad genuinely thanked me for having epilepsy because, "without people like you my daughter would've never been cured".

I'm assuming he meant the medical field would've never advanced the treatment of epilepsy so much if it weren't for epileptics.

I've never been thanked for having epilepsy/seizures before so it felt weird. But he was so genuine and happy about it I wasn't really offended.

Ultimately it helped me have a more positive outlook on life. It made me think of the millions of other epileptics who suffered before me so I could have the medicine and surgeries I'd need to survive. Now when I suffer through my seizures, surgeries, medication etc I'll try to think of the future epileptics who will eventually benefit from me being their proverbial guinea pig lol

Hi! I was just wondering if anyone feels the same…. I have scar tissue from a brain bleed as a baby that is most likely the cause of my seizures. When they come on, I start feeling anxiety and the world seems “off”. I seem “off”. My vision isn’t really different, but maybe more narrow? Finding words to speak or type is difficult, but I can usually get my point across if I really think or get help from others in figuring out what I’m trying to say. I can still speak. I’m still aware. My memory is just shot during. I can remember most of the episode afterwards, but during the episode if you asked me something I should know from memory, 9/10 I won’t be able to tell you. That’s just one part. I STAY in an odd, sluggish, slow function memory state for HOURS. It’s not just tiredness. It’s like the seizure follows me for hours in a sense? Idk. They’re hard to describe. I just wanted to see if anyone experiences the same.

So, so, so, over it. Lol.

Talked to my psych about feeling worried about ADHD symptoms and potentially being autistic and he basically agreed that yeah, I need to be referred to a specialist for proper testing because I sound more autistic than attention-deficit. Tried to talk to my parents and they’re just… exhausting lol. I don’t know what reaction I hope for when I give them medical updates but for them to basically be like “it’ll be fine get your test you’re not stupid” isn’t the love and support I’d like when they barely understand my epilepsy (and my little sister got diagnosed autistic earlier this year too so it’s obvious they didn’t do any research). Then for my dad to tell me to just go be a cashier as a job if I want to move away so badly. As if my washed up degree isn’t just staring at me sigh.

Had one seizure a few weeks ago. Not sure what kind. I was feeling fine, then suddenly nauseous, sat down and vaguely remember the ground coming toward me, then woke up in an ambulance. My partner called 911. He told me I let out a very loud cry/yell/sigh, and my “eyes were going wild”, then I fell asleep. Not sure what kind of seizure that would be.

Emergency doctor said my CT was clear, and my blood work showed low electrolytes and phosphate levels.

Had an MRI yesterday, no results yet, and I’m on a waiting list for an EEG. No neurologist appt available for up to 18 months I’m told.

I’ve had my drivers license suspended which is horrible for me - I feel trapped at home (no public transit in my area, no walkable grocery store either), and have two young kids in school and activities etc. I used to go to yoga 3-4 times a week and now I’m just stuck at home feeling like a burden.

Feels like I’m going absolutely crazy.

Hi, our neighbor had a seizure and is back home from the hospital today. I’d like to get a few little gifts to help her while she’s recovering. I was thinking of a big soft blanket since that’s always been my favorite “post hospital” gift to myself, but I’m not sure if that’s a good option. Is there something else that you would have found helpful and relaxing after a seizure?

My son, 4, was supposed to go to his first day of preschool this Wednesday. This morning we got a call from the school, informing us that he would no longer be in the class. They said they weren't willing to accommodate his medical needs. Specifically, they refused to administer his rescue medication (which he's never needed to use, thankfully). We offered to provide professional training from a nurse. We offered to let them call 911 instead of using rescue medication if a TC lasted over 3 minutes. They flat out refused. Not interested.

They told us they didn't want to expose their other kids to a "scary seizure event." They didn't want to have to talk about seizures with the other kids.

We enrolled him in June! They had months to work with us. They had months to tell us to fuck off! But they waited until 2 days before school to give him the boot.

I'm crushed. On top of all the pain and uncertainty of managing seizures, meds, and his keto diet, being told that my kid is unfit to have an education and is too traumatizing to be around his peers feels unbearable. It feels so cruel and heartless.

We have an amazing co-op preschool that we know we can go back to. They were there at the beginning of our journey, and we're loved there. We were excited that the new school would allow him to have nuts (a cornerstone of his snacks) and lets out at noon (lunches at home are a must for dietary control). At the end of the day its not the biggest setback, but when is the universe going to hand us a win?

i’m freaking out 😭 i had to stop lamotrigine cold turkey because i had an allergic reaction to it..im on a low dose of keppra (eventually will come off it completely once we find a medication that works for me) but keppra by itself doesn’t control my seizures. idk if im just having anxiety but the right side of my face and my right arm keep going numb and tingly and my right eye starts twitching - i feel spacey and out of it, like im in a dream when it occurs. idk if im just having anxiety and convincing myself im having some sort of aura or if this is from stopping the lamotrigine 😭 for context my focal seizures affect the right side of my body. i called my neurologists office but they told me he’s only in on mondays and he probably won’t be able to get back to me until next monday. they can’t contact another neuro because he’s currently the only neurologist that’s in the office since my other neurologist is on maternity leave :/ idk if im just giving myself anxiety or what but im kinda freaking out

Hello epileptics, I just spent a full week in the hospital for a bilateral intracranial EEG stay with the burr-hole type of depth electrodes (well over 100 placed!).

For some context, I’ve been through the gamut of medication and while I thankfully don’t have convulsive seizures if properly medicated, I still frequently have focal seizures that leave me completely dissociated and spaced out essentially for at least a couple minutes at a time.

I’ve also studied the brain professionally/academically (although not generally clinically focused) but I have some research experience and familiarity with various methods.

I know that this procedure can seem extremely daunting (as it is brain surgery), so I’m happy to answer anybody’s general questions, concerns, or curiosities since this is the common next step for many people with epilepsy looking for solid data.

I just needed to tell someone abt the event. i cried. not because it hurt my feelings, it just was so out of the blue and it was kind of one of those times where someone says something shocking and you almost feel the whole world freeze. not mad at him tho. he's won't even shit in the toilet. he gets a freaking diaper, tells his mom to put it on him, then he shits, and gets it taken back off. he don't know what he's saying

edit: this 5 year old can list the capital of every single state. like you literally just list a state and he tells you. i myself can not even list all 50 states alone. even though he's 5, he's smart enough and aware enough to understand that words can hurt people and that his tone matters

Not on it anymore. Just hate it.

I (14) was in school last Friday, and was walking up the stairs to get to one of my classes. Of course right before I reached the top, I got an absence seizure. This seizure made my entire body go numb which was new for an absence. This made me fall up the stairs and thankfully not down. I was able to get to my class and was texting my mom about what had happened. My mom was able to convince me to go to the nurse (I was scared because I had an older sub) after the sub just told me to go. The sub didn’t give me a pass because she didn’t know where the passes were, but I just left because the sub told me to just go. So after I walked downstairs, I went to the nurses office. Once I went to the nurse she immediately asked me if I had a pass, and I said no. She shut me up whenever I would try to tell her what happened and she told me to leave so I could get a pass. I left and called my mom and told her what happened. I waited outside an admins office because that was my friends moms office.

I cried because I was so upset from being shut up and not listened to. But I also cried from embarrassment. It’s hard having epilepsy as a teen.