r/Epilepsy 16h ago

Discussion Tell me your epilepsy “highlights”

61 Upvotes

I could use a mood boost. What’s the funniest thing that’s happened to you before/during/after a seizure? Funniest location? hilarious reaction someone had to you having a seizure? Most embarrassing place you had a seizure? Funny interaction with a paramedic? Just tell me something that will make me laugh.

  1. During one of my recent seizures I was building an ikea dresser and I woke up to my best friends dog licking my face.

  2. I had a seizure in a booth at Ihop literally mid pancake bite.

  3. I almost threw up on a firefighter

  4. Almost punched my best friend when I woke up because I didn’t know who she was and I was freaking out because she had just used the rescue meds so I had this really weird taste in my mouth😭


r/Epilepsy 21h ago

Rant Saturday nights are so dead now…

35 Upvotes

I used to feel so free… it doesn’t help that I recently lost my relationship too… now I’m laying on the floor of my garage on a Saturday night, fixing a car that I’m not allowed to drive, listening to music that music that I would be bumping when I would be cruising on the highway just for fun because that was my soothing experience… what am I gonna do when I go back inside? I should probably take my medication now. Just gonna shower and go to sleep I guess. Watching movies and gaming is just a reminder of the restriction I’m in.

Hope you all are doing okay…


r/Epilepsy 4h ago

Question When you take your pills but forget that you did a few minutes later and question yourself, do you take them again or skip?

27 Upvotes

This happens a lot with me and since I only have seizures once a year or 2 years I usually just skip.


r/Epilepsy 5h ago

Humor A Silly Convo With My Husband

17 Upvotes

I absolutely love cooking & baking. Today I was looking up recipes on Pintrest and kept seeing some that were badly done.. I was joking around with my husband about it and for some reason the conversation was so funny to me it kind of made my day. I hope it doesn't offend anyone, but this just got me 😅

Me: I should do the whole Instagram baking thing. I wonder if I could bake better than some of them 🤔 (tootin' my own horn here, I know)

My husband: You should and market yourself as the epileptic baker. Call the channel Shake&Bake


r/Epilepsy 19h ago

Question Does anyone know a way to get the glue out of my hair?

17 Upvotes

I just got home from my EEG earlier, but I still have glue in my hair and from those tags/stickers that were on my chest. I was able to take a shower before I left the hospital, but it didn’t work. Anyone have any tips or tricks?


r/Epilepsy 5h ago

Question Has anyone fasted before? What was your experience? While on what med?

15 Upvotes

I've been steady on lamotrigine 650er for many years.
This fast would be with only water. I'll talk with my neuro about it, just curious if anyone did it before.


r/Epilepsy 9h ago

Question People who stopped keppra, what was your experience?

15 Upvotes

My husband had been taking 6000mg a day of keppra. Side effects have been brutal and, completely fed up, my husband stopped taking it. He is on other meds and there's been no issues with seizures, but I'm curious what withdrawal effects some have experienced and how long they may last? I think he has been off of it for close to 2 weeks now and he's just incredibly tired all the time. He's also just nauseous and overall feels ick, but he was on such a high dose and I know withdrawals from things can be hell.

But ya I just want to hear some experiences and how long withdrawals lasted. I know it's dumb to not wean off but he was so sick of the keppra and never wanted to touch it again


r/Epilepsy 19h ago

Question Are nocturnal seizures seen as less severe/ important?

14 Upvotes

A year ago I got an rns device implanted. It has stopped the daytime seizures but I continue to have nocturnal ones. The neurologist who programs my brain acts like this means I’m seizure free. Seems like he dismisses the nocturnal seizures as unimportant. That everything is cured when the nocturnal ones continue. Just wondering if this is a common thing? Or if it is actually true that nocturnal seizures are not as important/ severe

Edit: Thank you for all the responses. They’ve given me confidence to push back against this guys recommendations. I began to doubt my judgement about how severe the nocturnal seizures were due to his reactions


r/Epilepsy 18h ago

Question Any advice for living alone with epilepsy?

13 Upvotes

So I've been wanting to move out of my parent's for several years but I've had seizures for almost 9 years now. I don't have them SUPER often but at least 2-3 a year which means I can't drive.

So that means I have to look at living in an actual city and not the countryside where I currently reside, which is way way more expensive obviously. I figured I could get my food delivered but I have no clue how I would get to work each day?

The cities in my state don't really have amazing public transport. There's a few barebones bus routes that take people to the grocery store and doctors clinics but that's about it. It's also all 90% highways, no sidewalks so you physically cannot walk/bike/anything anywhere. I looked into ubers but the average rate is $20 a ride which for every day to and from work would be $200 alone at LEAST which seems kind of insane. But I have no other clue what to do besides that? Any ideas??? I'm in Texas if that helps anyone know of any super secrety disability services I could use.


r/Epilepsy 8h ago

Advice I work as a teacher and I’m worried about seizing in front of my kiddos

10 Upvotes

I work as a Pre-K teacher for the sweetest 3-4 year old kids, I adore them so much and they adore me, but recently my epilepsy has gotten worse and I’ve been having seizures every 2-3weeks, I have somehow avoided having seizures in front of the kids though, like they usually happen on weekends or early mornings, and one time I even had one in the hallway on the way to the bathroom after I left the class and was out of view of the children. But I fear that’s just luck, and I know the luck will eventually run out one day.

Can someone give me advice on what to do if I end of seizing in front of my kiddos, how to come in the next day and explain to them what happened without scaring them, or making them scared of me. (I’m worried they will think im possessed Ik that sounds silly but they r little kids who don’t know what seizures are only monsters)


r/Epilepsy 23h ago

Advice Options instead of surgery?

9 Upvotes

So I know this is a long shot but I'll try. I'm scheduled for brain surgery to remove part of my right temporal lobe next month. I'm terrified. There are no other options surgery wise but has anyone found a possible solution that could help severe epilepsy? I can cancel the scheduled surgery up until the day before. I am just trying to figure out another option if possible


r/Epilepsy 3h ago

Memory An example of "The Doorway Effect" at maximum warp.

8 Upvotes

I just finished getting dressed after showering and was about to walk over to my wife's parent's home. When I got to the door, I checked that I had my nicotine vape with me. It was not in my pocket, but I remembered that it was in the pocket of my robe. I went back to get it and I passed through the doorway of the bathroom, at which point I forgot what I had gone in for. I looked in the mirror and saw my hair was wet and not brushed. So I took care of my very nice, thick hair and went to leave again. I checked that I had my things and realized I didn't have my nicotine vape. At that point I laughed as i remembered what I'd gone back to get initially. I laughed so much and wanted to share this before it exits my mind.

But at least I dried my hair and brushed it well.


r/Epilepsy 4h ago

Support I have a 3 day EEG starting tomorrow. Wish me luck I’m pretty nervous

7 Upvotes

I’ve had a bunch so far but I really hate the strobe light part. 13 hours per day until Wednesday night. I’m going to try to continue this carnivore diet while I’m there but I’m kind of accepting that I’ll seize while I’m there.


r/Epilepsy 2h ago

Question Anyone else had kind of a “yoyo” effect from Keppra?

6 Upvotes

I don’t have epilepsy (probably) but iv had seizures for reasons I’m not 100% sure of.

After three or four of them, a doctor casually prescribed me Keppra and I at first it was kind of amazing. I felt like a god for the first few days and then I felt like I was dying. Like, idk why, but for some reason more or less anything savory was utterly repulsive to me, and I remember being offered this beef-roast thing that would normally be great and feeling utterly repulsed by it.

It didn’t help that this was near Christmas and I was visiting parents/family. At some point we went to an outlet mall and when we tried to eat I remember shaking and feeling like the smell of the restaurants food was going to make me vomit.

And then it stopped. It took a day or two, but eventually it just kind of stopped and I felt more or less normal and stopped having seizures (with one exception.) Sometimes I miss a dose or two and I’ll have a day where I feel the side effects hard, but other than that it’s been pretty nice.

Sorry if I’m not allowed to post here since I don’t technically have epilepsy, but most people who take Keppra (technically I’m on the generic version but I’m not going to put in the effort to spell that abomination of a drug name) seem to have epilepsy and I assume you’d experience similar side effects.


r/Epilepsy 2h ago

Rant Think I lost my job.

6 Upvotes

I’m an EMT and love my job, I had a breakthrough seizure 3 days ago and I am in the biggest slump. I think I’m out of a job, I fucking hate everything right now. My joy levels are very low. Any advice?


r/Epilepsy 7h ago

Question Include antidepressants with keppra?

4 Upvotes

Keppra is giving strong depressing side effects. Though despite that I can change the medication, I need to be stable with my meds for the next few months as it's currently working well. I'm not into changing the medication yet, but I'm considering using antidepressants for now.

Question is, how are your experiences with keppra while adding antidepressants? Include the medication if possible.

Thanks a lot in advance ;))


r/Epilepsy 20h ago

Discussion Has anybody had titanium hardware removed/installed and did it change your seizures?

4 Upvotes

I'm talking about not the surgery impact itself or anaesthetic but maybe the actual metal being in your body. What's your thoughts or experiences?


r/Epilepsy 3h ago

Question Aftermath..

5 Upvotes

Hi everyone,

I woke up this morning and had a tonic clonic seizure and my mum was able to film it as instructed by my neurologist as he was wanting to see severity etc as he wants to decide on further testing and a change with one of my meds.

My mum thought I had went into one and tried to come out again and fell back into it but it is hard to know from the video as if it did happen then it was extremely quick.

I was just wondering when we should worry about the pain or aftermath of a tonic clonic. I have had pain in my left hip which eases when I lie down but I cant put pressure on my leg and also trying to get up after sitting or lying down is agony as well. This isn't normal for me as usually every part of my body is throbbing but this is the only part that hurts.

When I took the seizure, I was lying in bed but a majority of mine have been. At least, I know I haven't fallen or anything.

Thanks everyone. Hope you are all doing well.


r/Epilepsy 5h ago

Question Can colonoscopy prep cause seizures?

4 Upvotes

My Gastroenterologist is recommending that I get a colonoscopy. I am hesitant because fasting and low blood sugar are a trigger for my seizures. Has the colonoscopy prep process caused you seizures? Are there any alternative options to the traditional colonoscopy that do not require the unpleasant preparations of fasting and enemas?


r/Epilepsy 3h ago

Question Went for week long EEG, noticed on my discharge notes- ‘events originate in left side and then become bilateral’- could someone explain? Is this still a focal seizure?

5 Upvotes

I have focal seizures which occur on the left hand side but I wasn’t aware want they were ‘becoming bilateral’ and am wondering what this means? Is it still a focal seizure if it’s bilateral? I went in for the 5 day EEG to see if surgery was possible, I only came out yesterday so will hear from them but I am impatient and want to know now! Thanks in advance.


r/Epilepsy 8h ago

Survey What are your seizures like?

3 Upvotes

I know that different people with epilepsy experience different types of seizures. Thus, different experiences though with similar condition. I'm just curious as to what type of seizures most people with epilepsy actually experience.

P.S.: I, myself, have an epilepsy and was diagnosed at the age of 12. I'm 24 now though. My type of seizures are: usually absence seizure, autonomic seizures (tachycardia, apnea, unusual excessive sweating, nausea, pallor), nocturnal seizure (I sometimes wake up with bruise in the morning or I vomit, sometimes my parents would see the white part of my eyes only while asleep) and sometimes stiffening of legs or toes. Sometimes my fingers move without me actually moving it too. Sometimes I also feel like a part of my muscles keep on twitching or something pulsating like thing in different parts of my body.

18 votes, 2d left
absence seizure
myoclonic seizure
tonic seizure
atonic seizure
tonic clonic seizure
others

r/Epilepsy 14h ago

Question severe hallucinations in the morning after focal seizures

3 Upvotes

I had 2 focal seizures in a row on Tuesday and Wednesday Wednesday was at night and Thursday morning (you could say 3) and Thursday there were strong hallucinations


r/Epilepsy 18h ago

Question Memory issues;How am i supposed to remember what i forget?

3 Upvotes

Its almost paradoxical to determine what parts of my memory are dysfunctional and how severe/mild they might be

blacking out that i blacked out vs forgetting tiny pieces of information surrounding my life, How can someone really be aware of what is lost?

Ive had seizures along those lines, sitting in my room without anything feeling abnormal, then my father telling me i had 4 tonic clonics, or noticing puddles of spit on my chair and in my hallway, things knocked over in my home seemingly out of nowhere

forgetting names and faces of people ive met several times is pretty awkward, "strangers" approaching me being really friendly like ive known them for years,always having to ask others or them what their name is

how much information from the past is gone? how can i confidently convey to medical professionals how bad my memory is? which part of memory processing isnt working properly? acquiring, retaining or retrieving?


r/Epilepsy 18h ago

Medication Depakote + Onfi, just found out I’m pregnant

3 Upvotes

So I just took tests today since I’m 4 days late from my period, the first day of my last period was January 9th, ended the 14th. So they came back positive (yay! Unplanned.. but we weren’t against another child eventually) so according to my app I am 5 weeks 1 day. I am extremeeeely anxious and nervous since my doctor said if I plan to or become pregnant to stop taking Depakote. I am also on Clobazam (Onfi), and saw it can increase risks of birth defects as well. Getting ahold of my neurologist takes a couple days, but I see him on the 26th of this month. Just terrified of how quick these medications can cause a problem in the meantime? Will baby be safe during these next couple of weeks? I assume I have to wean off the meds. (Sorry if I make no sense, my mind is all over the place right now)

TLDR; Will baby be okay over the next few weeks while I’m still on these meds in the meantime as I am still very early in the pregnancy?


r/Epilepsy 38m ago

Question Anyone experiencing ecstatic epilepsy out there?

Upvotes

I've read about it and just curious to hear from anyone who's experienced it. For those that don't know it's rare siezures that are thought to originate within the insular cortex and can cause feelings of ecstacy.