Absolutely. I second guess and triple guess EVERYTHING. i have had post ictal amnesia so many times i never know what i don't know because i have forgotten. It can be overwhelming.
Some people online are ignorant men who judge what they don't know and they fear people because they really don't know about it. Hopefully people will stop listening to negative people online.
As someone with epilepsy I like when people ask questions. By them saying things like "should I hold you down" opens up a dialogue where I can explain that that won't do any good and then I show them the recovery position. I was in a club with strobe lights and my best friend quickly covered my eyes and brought me outside, I couldn't stop laughing because I'm not photosensitive but I thought it was sweet that he got all panicky for me. My epilepsy is a medical condition that I have it's not part of my personality and if you have questions please, ask away because that's the only way we can allow others not affected by it to be educated.
Joy-Colleen Murphy i cant completely relate but I kind of understand because my mom and my sister have epilepsy (so theres a possibility that i might have it) but they dont get it from flashing lights they get seizures from stress (usually)
Space cow Alien hi there! If you're experiencing seizures I wish you luck on your journey to diagnosis and stabilisation :) mine tends to be triggered by stress too. Photosensitive epilepsy only affects 3% of all people with epilepsy. I hope your mum and sister are doing well :)
emma lovely I understand. But the point I was making was that I corrected him after he did that and it never happened again (because I explained my triggers and what to do if I have a seizure). It came from a place of genuine concern. I'll never be angry or offended by people caring about my wellbeing, but comments like "it's just a seizure" or "I don't think you should be classed as disabled" that's when I will get angry haha 😂
Oh, no, I understood you! Was just lamenting in the epileptic woes with you, haha. And ahhh, I can't stand that either. People in middle school said I used the elevator simply because I was lazy, even though it was widely known that I had seizures and having one on the stairs would be absolutely nightmarish. The ignorance towards epilepsy is outrageous.
mikemy100 flashing lights. Her epilepsy is light sensitive so ambulances' blue flashing lights may trigger a seizure in her, which is ironic as ambulances are meant to treat your condition, not cause it.
"When someone says to me, thats not a disability, I invite them to have a seizure, wake up in their own piss and now they have to think of what they just did" as a person with epilepsy that makes me laugh because it's completely relevant.... everyone with epilepsy whether you have incontinence or not knows the feeling of coming out of it and having no clue in hell what just happened or where you are, Im absolutely drained for two days after mine.
I haven't been able to drive since 18 I'm now 23... ☹️ My license ended with me pulling into my driveway just about to park and seizure came, I slammed the gas and ran into my front porch 😳. People don't understand you are stranded with out a car most of the time unless you can get dang rides, I've done bit the shit out of my tounge and most recently BOTH sides of my cheeks I'm about to get tissue removal surgery thank God I can. Pills help but will never take them away. I feel so bad for ones who can't get surgery. I've had epilepsy unknowingly since 13. I kept getting into these wierd feelings of scared, butterflies, and not wanting to speak even though I could. I never knew they were seizures until my first grand Mal. I work down the street from my house so I can walk ☹️ can't rely on rides from people or the bus to get to work so I can't go anywhere until this surgery... I've been living this life for 10 years.. I know how it feels. It really makes you kind of hate yourself in a way. Or that's just the feelings I get sometimes. I feel like my whole life is screwed and I'm so behind in life because of this. Graduated high school, offered a scholarship and boom epilepsy. I get into my feelings a lot I wouldn't wish this on my worst enemy. Yesterday morning I had a seizure while sleeping. My boyfriend heard small coughing noises and woke me up out of my seizure. I bit both sides of my cheeks BAD. The rest of my day everything I drank tasted so sugary? I've never experienced that before. Has anybody heard of this? My dosages haven't gone up at all. My cheeks are now swollen hardcore but my taste came back today. Weird.
@@gocowboys51411 yup. I haven't experienced it with taste, just hearing and occasionally smell. The coughing he heard might warrant a trip back to the EMU because it is a sign that your seizures are effecting your ability to breathe so mention it to your dr.
@@Karen-pk3uv I ended up not being able to get tissue removal surgery.. I was only able to get the RNS implant device.. going to take a whileeeee to start working but this is what I'm stuck with ☹️ we will see how things go but my hope of getting rid of these seizures is pretty much gone. We will see how good this device works in the next year.
@@gocowboys51411 i haven't responded to any of the meds and the only time I seem to be able to go without is when I'm in the EMU. It is so frustrating constantly trying hold onto some bit of hope. I really miss friends, working, school, and driving. I hate it. Please let me know if the RNS ever works as advertised
Coming out of it and finding myself in the middle of puking and blood spots on a towel because I’ve bitten the hell out of my tongue is something I hope I never have to experience again in my life.
Maddie Pickard that still gives you no right to talk badly about someone you don't know if they have it either. If they don't they still care enough to be educated so please be quiet keep your rude outbursts to yourself.
As a child I had "absence seizures" which are basically really short seizures every few seconds that are not noticeable. Because of this I was behind on reading and writing and I couldn't listen to a complete sentence. My mom thought I was just being a little shit, but no, these seizures were literally interrupting my train of thought. They eventually grew into full blown 3-4 minute long seizures. After years of careful monitoring and a specific diet, I actually have been dismissed and haven't had a seizure in about 8 years :)
Beans yes! I have partial seizures several times a day and a lot of people don’t seem to realise that’s a thing. I’ve only ever had 6 tonic clinics in my life.
I have both absence seizures and about once a year i have a "physical" seizure, can u tell me more about what you did to reduce them? My doctor just told me to learn live with it😑
sindy rietvink my seizures have always fluctuated a lot as they started when I was 12 and I turn 20 in July, so hormones had a huge impact as well as poor mental health. We’ve tried a lot of different meds but the ones I found most helpful was lamictal for my partials and phenobarbital stopped my TCs. Could you try seeing a different neurologist for a second opinion?
Vishva Kumara if someone asked me if I was possessed, I’d look them dead in the eye with the most serious expression and say “yes”, just to scare them a little.
Thank you for this. I'm epileptic you are truly asking things people have asked me. Education on epilepsy is vital there are people in psych wards. That should not be there. There is no cure but I have hope and I live each day more greatful for waking up.
I haven't been able to drive since 18 I'm now 23... ☹️ My license ended with me pulling into my driveway just about to park and seizure came, I slammed the gas and ran into my front porch 😳. I'm about to get tissue removal surgery thank God I can. Pills help but will never take them away. I feel so bad for ones who can't get surgery. I've had epilepsy unknowingly since 13. I kept getting into these wierd feelings of scared, butterflies, and not wanting to speak even though I could. I never knew they were seizures until my first grand Mal. I work down the street from my house so I can walk ☹️ can't rely on rides from people or the bus to get to work so I can't go anywhere until this surgery... I've been living this life for 10 years.. I know how it feels. It really makes you kind of hate yourself in a way. Or that's just the feelings I get sometimes. I feel like my whole life is screwed and I'm so behind in life because of this. Graduated high school, offered a scholarship and boom epilepsy. I get into my feelings a lot I wouldn't wish this on my worst enemy. Yesterday morning I had a seizure while sleeping. My boyfriend heard small coughing noises and woke me up out of my seizure. I bit both sides of my cheeks BAD. The rest of my day everything I drank tasted so sugary? I've never experienced that before. Has anybody heard of this? My dosages haven't gone up at all. My cheeks are now swollen hardcore but my taste came back today. Weird.
@@gocowboys51411 ever had dejavus? Ive had them along with many other things like what you've mentioned. Had enough of them by 32, was like bouncing between dimensions or something. Was then diagnosed with temporal lobe epilepsy, and ye lost my job and driving licence. As far as i know i only have focal seizures but i have had strange experiences while sleeping and have woken up to find ive chewed my lips and cheeks up and swallowed most of the blood 🤢 starting to wonder if i have generalised seizures in my sleep.
@@dazparry1580 yes I do have deja vu I'll try to explain it as good as I can. first off feel something in my stomach like butterflies or like I'm scared it'll take over my whole body quickly and I will have to stare and I feel like I've sat in that same spot and looked at the same thing. start to lick my lips and I feel like I'm going to throw up because my mouth starts to water. I'll sit there for a few seconds and once the feeling goes away I will feel tired and stressed. I have temporal lobe seizures as well but we figured out they bounced over so the other side of my brain causing the convulsions. I'm going to be getting EEG surgery put under my scalp and sit in the hospital until I have a seizure and all of these years they've only captured one seizure and it was when I was asleep at the hospital. I've woken up to a bit tongue before. It's really a scary feeling I may feel a little tiny bit of this and then fall over and start convulsing or it just won't go that far and go away in about 40 seconds.
@@gocowboys51411 i have the exact same.. I havent fallen down or started convulsing but i do get shaky and off balance. Once my dejavus got too intense and i felt like i was in the matrix or something, i insisted that i saw a neurologist. They twigged it straight away, now im just waiting for a medication which stops them. On my 4th kind so far but still having them.
@@dazparry1580 I've tried 5 different medications, none of them took my seizures away completely but they manage them. I'm a female and a lot of people have seizures because their hormones fluctuate. Around the girl time of the month I'll have my seizures right before then. Always the first or second week of the month. Hopefully they can do tissue removal surgery for me. It might not even change anything, or it can change my life. I wish good luck to you and myself because we need it. It's hard to live with I know I think anyways.
Ryan Bryant-Smith I've dealt with a crap head teacher people said they would take a bullet I would take bullets for people who have been in my situation
SmellamyBlake heya, I'm the woman in the video that had a seizure on a five year old. I saw your comment and thought I'd clear up the question as while I explained the situation when filming it unfortunately didn't make the final edit - basically, I've been diagnosed with absence seizures since I was 13 and have since had myoclonic, atonic and one tonic clonic. I'd gone to visit my mate for his 21st birthday. We'd been out drinking for it, it was really sunny that day, I was stressed because my dissertation hand in was that week coming and I'd taken my meds late (don't try this at home) I'd had 20 atonics that morning but had been told by my neurologist that it was likely just low blood sugar making me collapse so I didn't think anything of it - I now know it's a seizure type. I was saying goodbye to him at a bus stop so I could get my train home. I remember the bus pulling up and hugging him goodbye at that was it. I passed out after that tonic clonic and when I woke up I was being lifted into an ambulance. The paramedics asked my friend how I'd fallen because I didn't have many injuries considering I'd gone down on a pavement - it turned out that there'd been a kid stood next to me at the time so when I went down he basically became a child shaped seizure mattress, saving me from injury but also scarring him for life.
Yikes, that's quite a story. Poor kid. Out of all places to have a seizure! Glad you were okay though. Hope that is the only tonic clonic you ever have to endure.
I hope so too! That was May 2015 and haven't had one that scale since. I think it was just a bad accumulation of every trigger I get rolled into one. I was more annoyed that I'd been a year seizure free and had applied for my driving license. It had taken months to go through all the medical processing etc... it arrived in the post two weeks later after I'd had that seizure. Never been able to use it.
Jena Selle no worries! I'm glad I've managed to help raise a bit more awareness even if it's not much. It's a shame that they didn't include any of the discussions filmed about different seizures, but I guess you can only fit so much into one video when it's this length and in a light hearted format.
i feel like all people need to do is ask what the triggers are (if they have any) and then asking the person what to do if they have a seizure. thats reasonable, right?
If someone knows that you have epilepsy, I'd say asking what to do if they have a seizure when you're around them is very reasonable, especially if you spend a fair amount of time around them. Asking then if they're comfortable sharing their triggers, I would agree, would be if you know them better. All of my friends that I'm around consistently and my work supervisors know what to do if I have a seizure.
Some triggers are not so straight forward. For example low blood sugar, unexpected stress, dehydration and a whole range of other things that are sometimes unforeseen
Thank you for posting this. I have been battling epilepsy since a car accident about 10 years ago. I am just now being treated for it and seeing positive differences in my life. I am actually making CZcams videos on the subject of my battles with TBI, epilepsy and myeloma. This is well needed! Thanks for posting this...epilepsy sucks!
Let's just go for the obvious here: Don't make fun of seizures/fake seizures in front of someone with epilepsy! "Look dude. I'm having a seizure. Haha." That happened too many times growing up.
That happened to me in school. Thought a kid was making fun of me. Turns out he had an asthma attack. Don't worry, the kid ended up being alright afterwards.
You can't sit there and say that epilepsy is not a disability because I can't remember what I've done the day I have a seizure. Then I'm completely drained for the next two days. Also, I can't drive and to be honest I don't want to because I've had three seizures in cars before and I don't want to hurt myself or someone else. Just the thought of driving gives me anxiety.
Angel Damers you're not alone sis. I've had epilepsy since 12 years old and I have seizures in random places sometimes like in church, on the toilet, etc. It's not a walk in the park. When I wake up from one I feel so dazed and I have no idea what to do with myself. I'm 19 now and I've had seizures all year so I'm not able to drive :(
yah like because of my epilepsy I developed a learning disability that causes me to struggle in school. I have gotten my license but I do get nervous when I get tired so I end up not driving that day or unless I am more energetic.
Saaim Ali Sorry dude, hope you're getting by ok! Having too many severe/long seizures or lots of milder/short ones *can* damage your brain I think - at least your memory. Not sure on that, but definitely temporary impairment always happens after a seizure, with memory being especially damaged! Based on what i know, the chemical receptors most imvolved with seizures are the NMDA receptor and GABA-A receptors. NMDA receptor is *key* to memory, it has a special function no other receptor is known to have - called "coincidence detection" - and that is central to memory. A seizure really messes with NMDA receptors, overloading them which causes a rebound effect of them being desensitized after the seizure, which impairs memory for a while. That's my theory and I'm sure there's muuuch more going on than that simple account I just gave, but I'm no expert and have no idea what else is going on haha! I easily notice my memory is *terrible* straight after a seizure - like i can't even remember my name - and bad in the days following. Overall, it has like a "reset button" effect on my brain, clears away any previous emotions and fascinations and lets me develop new ones, which can be good or bad, sometimes it's nice when I was feeling groggy before, to be "reset" and feel more upbeat and energetic afterwards. But other times it's been the other way round - just luck of the draw I guess.
Some of these responses are really inspiring. It's taken me eight or nine years to come to terms with my epilepsy and I'm only just now getting past the self-pity and the 'why is this happening to me' attitude. Hearing about other people with epilepsy who just get on with life and don't let it hold them back is, well, like I said, inspiring. Thank you for doing this video and thank you to everyone in it
I am one of those people with photosensitive epilepsy that is minimised in this youtube thing.. Yes, I do want you to turn off the bloody lights. They are unnecessary and hurt me. Yes, glary days, old computers and gigantic tv hurt my head. A bit of consideration would be nice. Be happy they ask. It is a rare thing I can tell you.
Right? Please, ask away! Otherwise I have to make a choice between 1)feeling like a party-pooper / shitty person for asking, again, that the lights be turned off just for little me, or 2)leaving without saying anything because I don't want to bother people. If people ask me if they should turn the strobes off, it shows they're thinking about my well-being and that they think it comes before their party lights. That they want me to stay here. It means SO much to me.
Me too. I understand that people don't always think about it or forget but I can be so ill from flashing lights which are so easily preventable especially when Put in tv or film unnecessarily
Ash Ley No but I do get aches and stiffness in my jaw but I get that in my legs too especially on the right side because my seizures are right sided. No advice to give other than keep going the best you can and know that unfortunately you are naturally at a disadvantage so don't compare yourself to others. For me my memory and processing is really bad from my seizures so I know that I can't do as well in an exam as other people and have now learned to accept that my best is my best.
When there's flashing lights I feel weird and my vision goes slightly weird for ages and suddenly I'm drowsy and my head and eyes start hurting I had a seizure on Christmas Day and at the moment I'm having tests and also in the past i have blacked out 2 other times in the past....
"That's not epilepsy" in my case. Cause people can't seem to grasp that Epilepsy is not only falling and flopping around on the floor, there are a ridiculous amouth of difrent seizures and me personally i get agressive and i wake up tired as shit, still.... That's frontal lobe Epilepsy. And for he love of god... DON'T SHAKE AND SHOUT AT SOMEONE WITH A SEIZURE!
Preach! I have temporal lobe epilepsy, and although I have had grand mals, I don't just drop and shake. I haven't had a grand mal since 2015, but I do have petit mals, and anyone who didn't know me wouldn't even know I was having them, but the psychological and physical after effects are awful and people don't seem to realise it. Even after a small petit mal, I'll be wiped out for a couple of days, really grouchy and spaced.
Steve Lee - my baby brother was fascinating to doctors and scientists. Due to his brain damage, he could have a 6 hour long grand mal, be out for about 5 minutes afterwards, then sit right up and start chanting, "Go go go." (He was mostly non-verbal due to the same brain damage, but he knew both the sign and the word 'go' and knew exactly what they meant.)
I just got petit mals and even if i just shake like a chihuahua mostly unless someone touch me and i'll most likely go full on the hulk if that happens. i'm feel like i've been running a marathon, my muscles feel like death and i'm so tired i could sleep for days. Yet since they're not big and dramatic, people don't understand how bad they are mentally.
yeah mine are petite mal (probably not the correct term but I don't know how to spell the other name for it oops!) which is were you suddenly zone out kinda for a few seconds?? It's much worse but you might blink a lot of have face twitches or more noticeable stuff. Though I've had grand mal, that doesn't mean that all epilepsy is is people randomly flopping on the ground jfc. I wish these types of seizures were more well known.
The amount of times I would have a petite mal seizure in class and my teachers would call my mother and tell her I wasn't paying attention, even though after them I would go right back to what I was doing is mind boggling. It's like none of my teachers through out my school career didn't acknowledge my Epilepsy.
My mom met with my teachers every year.(until college) Those teachers knew what was happening. They even communicated with my mom by special stars and notes in my homework and memo book.
That's me. I have petite Mal sezuires. I'm 14 and recently got diagnosed this year. None of my teachers take it seriously. They think I'm fooling around. It's very annoying
It is a disability! I can't drive, can't have certain important medication( certain antibiotics etc) It's scary I can drop while I'm walking. Stress and my period can trigger a seizure.
@@kaylalloyd869 a disability is a condition that affects the body or mind, my Epilepsy definitely comes under that term. It's not something I want, it's something I have and have had to learn to deal with.
Maybe not to talk about their height and yours also. ...bragging about your own height will must be very heart breaking to them I know how it feels becoz my cousin is passing through all this
I have epilepsy and i couldnt go into work because i had a seizure after 7 months and i was on pain for hours. She said "well if i had the flu i would be in trouble for missing work" i said how the fuck do you think you are for comparing the flu to a grand mal seizure ( which is the worst kind ) you try having one and getting up feeling fine.
Triston caudil what business would you get in trouble for missing work due to flu? I think that’s basic protocol for not passing pathogens on to your coworkers
Danielle Barton I'm 17 and haven't had a big one for 5 years, but about 30 little ones a day. They are not noticable easily for others, so not many people know about it and I can avoid questions this way😊🙈
I remember telling a kid at camp about my epilepsy when I was younger and her response was to turn her flashlight to strobe mode and point it in my eyes to see if I was lying. thankfully, my seizures aren't light-triggered, but she had no way of knowing that. that's probably my worst encounter so far of people not acknowledging the seriousness of it, but absolutely NOT the only one. most people don't understand the extent to which epilepsy can affect a person's life. for me, I had both tonic-clonic and absence seizures. the tonic-clonic seizures were the most traumatizing in terms of growing up with epilepsy (waking up on the floor of random places with no memory of how you got there, with strangers panicking all around you, etc.) but what people especially don't realize is that absence seizures exist and are also very serious. growing up with them means having them several times a day in school, which also meant not remembering many of my lessons and needing to work even harder to maintain my grades. for the first few years I lived with severe denial of what was happening because I didn't want it to be true. when I came to terms with it I was in middle school and I would stay awake at night crying because I hated how scared my family must have been every time I had a seizure. as an adult I'm often kept awake at night by flashbacks to the times I had seizures (the auras, waking up confused and afraid, seeing the fear and worry in people's faces) and although I've been seizure-free for a few years now (thank goodness, and knocking on wood) I still find myself in fear of having another seizure at times. even little things like the head rush you get from standing up too quickly can give me panic attacks sometimes because for me they feel similar to an aura. epilepsy is a serious condition, yet I hear jokes about seizures fairly often from people who are unaware of the how negative seizure disorders can really be. there need to be more videos similar to this out there so that people can gain at least a little bit of knowledge and stop being hurtful.
*In the E.R* Me: dry cough. She taught I laughed Bully: Don't make fun of someone. You don't know, what they're going through. Me: Epileptic side (smile trigger) I said daddy. Bully spit fullness, tried to kill me, using our 1st aid against me & repetitive phrases. The entire time. Covered it up by lying, why she did it. Thank god I'm a smile/nervous trigger type
Someone at my school went and used the flash feature on their phone when they found out I had epilepsy to see if it would trigger a seizure. Luckily I'm not light sensitive and even if I was, I might have been controlled by medicine. The thing was, this was also done in a classroom at the top of the English block building so if I didn't appear to recover from the seizure I would have had to have been carried down about 100 stairs. Would you really have wanted to do that?
I lived most of my life without seizures (as far as i know anyway) but 3 months into full menopause started having them. All types. I was in denial too for a couple of years. After each one, I thought, it won't happen AGAIN. Kept driving too. God didn't let me wreck and hurt anyone. To this day that amazes me. I have finally made peace with it. My grandchildren are not freaked out now when i have one. They know just roll me on my side and monitor. I can even joke with my family about it, God knows i have cried enough. I choose to laugh now. Some people truly don't think through what they are doing. They have no concept of how it may have wrecked our lives and what we have overcome to just deal with it. They really don't. Some wouldn't care anyway but some would.
Wow, I had no idea the extent epilepsy was belittled. Even as a child before having an epileptic friend I knew seizures = serious condition. It also baffles my mind that some still try to use religion as a reason someone may be ill. Ridiculous.
Ideges_Csillag my dad tried to force me to do some prayers....I've been praying all my life but yet I still have seizures so it's not spirit that is tainted...
Ideges_Csillag my grandparents wanted to bring me to a church so we could pray and be pious together (which is something I'm really not into). I ask you, what would that have accomplished more than me taking my medication?
I get what you're saying but if they know that someone has an eating disorder they should probably be trying to get them help and not putting them in a CZcams video. No offense though.
As someone with epilepsy in school, when people say it isn't a disability it annoys me because they've never woken up on the floor in a pool of their own urine with saliva dripping down their mouth, not even being able to comprehend where they are, still to have people laughing at you and looking at you funny and bullying you for it. It's a disability, just because you can't see it doesn't mean it's not there.
someone: **is talking to me** me: **has a petite mal seizure** me after the seizure, trying to get my brain together: hey sorry can you repeat that? I think I might have had a seizure? someone: oh my god stop having seizures and just pay attention me: **explodes**
Um wow ok definitely not someone who deserves any friendships at all. Petite mal seizures are no joke and all they were worried about was their story??? Yikes
SmellamyBlake true! i just think for people who dont know much about epilepsy its just a question to ask to make sure theyre safe. dont see how thats wrong in any way (of course not in a dramatic condescending way!)
Gabrielle Vachon I feel that if someone knows their own triggers, they'd let others know beforehand if there was a possible issue. It's not like you're just going to run by like a lunatic taking pictures of strangers and ask if they'd prefer the flash to be off because of POSSIBLE light sensitive epilepsy...
I’m 31 & got diagnosed with seizures (officially) about 4 months ago but between before being officially diagnosed & now I & others always said seizures or episodes or incidents NEVER used the word epilepsy & it didn’t even hit me (idk why it just didn’t) till I watched this video that I actually have epilepsy now & it kinda hit me like a brick across the face all of sudden & was like wow & frankly cried a lil bit & then was thankful for this video. I don’t know anyone who has epilepsy so I felt a lot less alone when the brick hit me while watching this video so THANK YOU!!! I appreciate this video a lot!!! Never forget everyone, always keep love in your heart & be safe!!!
I'm epileptic since I was 16 I'm now 40 and if I don't take my medicine 2 times a day I have drop seizures that being said I have traveled through Europe,Asia whole life by myself & I'm going to climb to mt Everest base camp in December this year Don't throw a pity party for us we are stronger and more determined than everyone else
My brother started Epilim (the main medicine for epilepsy) a few days after being diagnosed with epilepsy, about 3 years ago. And I'm so thankful for the fact that he hasn't had any seizures for 3 years since.
izzak jenkins you need to change your doctor then. if they prescribed you Keppra and it doesn't work, they prescribed you medicine for a different type of epilepsy. I take Keppra since I was diagnosed and I only had a few slip ups bc I forgot to take it and stressed myself out a lot.
I started having seizures and was diagnosed with epilepsy when I was 22, 12 years later and I do still find it hard sometimes. But that was so good to watch, it’s nice to hear other people saying the same things I feel and knowing I’m not the only one. Thank you for making it!
Honestly, I have epilepsy and I always come back to this video and get just as pissed as everyone in it. Please if you don't fully understand what you're talking about don't talk about it like you do. It's not something someone can control and just because someone doesn't have a seizure-like what you're expecting it to look like absolutely does not mean they're not epileptic. It comes in so many different forms so don't assume you know what you don't. I 100% love this video and how it keeps people aware thank you for this because I don't see a lot of videos surrounding epilepsy as a topic
I actually got really angry watching this video. I do not have epilepsy, but I have seen many people have seizures. I volunteer to assist people who are homeless and have drug/ alcohol addiction issues. I just get upset when people ask such rude and ignorant questions, as they discussed on the video. I think the video is really well done. The fact that people walked past someone having a seizure astonishes me (ie @ 02:45).
yes it would be nice for them tu explain the difrence. People always ask me "aren't you supposed to be fat or were you fat once?" And i have diabetes type 1 so there isn't anything i could do about it. Still people with diabetes type 2 don't always have to be unhealthy.
Me, I just had a seizure on Monday and I bit my tongue really bad and it hurts 🥺 I’ve had epilepsy for a year now and I’m 16, I have seizures in my sleep due to unbalanced hormones and stress. Though I always feel grateful that my mum helps me when it happens. 😊
William Parker most people associate PTSD only with soldiers, but any other traumatic event (hence the name of the disorder) can actually cause it aswell
You know, this is a great comment. I was in the military during Iraq; I never saw combat personally. Well, let's put it this way: I never was getting shot at or in harm's way. I was definitely part of the "front line" but as more of a behind the scenes player. I was a translator. Anyway, I never realized how much of a toll it took on me while I was in. But when I separated from the service, there was a solid year and a half that I could do nothing. First thing I'd do every day: roll out of bed and puke my guts out. Couldn't meet new people, couldn't leave home. Extreme anxiety. It was horrible. I eventually became friends with an elderly neighbor and he was kinda my gateway friend back to a normal life (I'm very extroverted). But I *never* thought this was PTSD until I met a young woman this last fall who was a classmate of mine. She shared a little about a story from her past involving some trauma and what she went through in terms of her ptsd. And I thought "holy shit, that sounds like what I went through in 2008-2010." And she was basically like, "yah, sounds like you had ptsd." So it wasn't until I met a noncombat ptsd person that I ever even considered what I went through as ptsd. funnily, I am here watching this (awesome) epilepsy video because that also started at the end of 2008 and I'm pretty sure it had to do with my service. So, as a "combat" vet, I can assure anyone reading that a brain is a brain is a brain, and ptsd can come from any kind of experience.
"Are you possessed?" Oh thank god I'm not the only one. I had childhood onset epilepsy and a guy from church once told my mum it was because of demons -_-
One dude told me that when i was a kid but since i was a "genius".... my brain went to: "I'm in a club for people with epilepsy.... ARE WE A CLUB OF DEMONS?!" never seen my mom so mad! I was so weirded out!
Because I get that question way more than is nessacary I've just started answering yes like growing up in the south it's a bit fun to watch some people believe you
Epilepsy changed my life for sure. The most defining feature of epilepsy, it’s different for every person who has it. If anyone wants to know more, I’d be more than happy to share more about epilepsy! Just never know if people give a shit haha
Yasmin Bleek I have epilepsy, it can be genetic but it’s usually quite rare. My triggers aren’t light, they are stress, strong hormones and changes in sleep patterns. Epilepsy can be quite scary as when I’ve had seizures, I have them whilst I am asleep so I don’t feel them and I just wake up on the floor because I fall off my bed, I always bite my tongue though which can be very painful for a while. Most people bite their tongues or wet themselves, it depends on the person. I also have absence seizures, they’re the nasty ones as it happens when I’m awake and is scary because it feels like an even worse version of sleep paralysis. I was diagnosed when I was 15 and I now I’m 16, I just recently had a seizure on Monday. I can’t tell you what is like as I never feel it as I am unconscious. Feel free to ask questions as I certainly don’t feel that is rude and think it would do the world of good to get people to understand about epilepsy as it effects so many different people in different ways all around the world. -Moxley
Yasmin Bleek It can be genetic- the form of epilepsy I have is genetic. Took a while for my family and I to figure that out because my sister and I were the only ones with seizures. We both started having seizures around 16/17, which is a characteristic of a certain type of genetic epilepsy. It is forsure scary. The best way I can describe it is that I have simply had to accept that I don’t always have control over my body. I only experience grand mal, or body shaking seizures that cause me to go unconscious. Luckily I do not lose control over my bladder. The hardest part has just been finding the right medications to stop my seizures from happening.
It's quite strange for me to hear that there is a stigma against epilepsy. I have it and have never had a single negative reaction from anyone. They usually ask me how many seizures I've had and if I'm on medications. But that's it. Nobody has ever treated me differently because of it.
NemoVanessah yeah I don't usually get negative reactions. People are usually just super uneducated about epilepsy and know nothing about it. But they're concerned and curious
mypupismup okay, that's good for you. you *usually* don't get negative reactions when you tell others about your epilepsy. (Though, I'm surmising there was a time you did actually get a negative reaction since you used the word 'usually'...) However, just because you haven't experienced that stigma, you ignore or rule out that there is a social stigma surrounding epilepsy. People are uneducated about the issue and stigma arises from lack of awareness, lack of education, lack of perception of the issue.
Could you do an episode on Chronic Illness or Invisible Illness please. This episode sort of addresses how people are perceived as healthy and fully functional based on physical appearance. Love the series. ❤
during one of my seizures i started laughing like a maniac and bit my brother and looked in the mirror and smiled . I walked around the entire house singing something .. now i get why people think we are possessed
To anyone who has epilepsy who reads this, is it okay to ask what triggers your seizures just to make sure I avoid it? (such as camera flashes or similar) And is it okay to ask what to do if you get a seizure when I'm around? Yes, I would definitely call for an ambulance but I'd wanna know what to do while it's on its way. I'm asking because I know a few people with epilepsy but I don't want to upset them, even though I know that everyone responds differently to everything, but i'm asking so I can help if it's needed/wanted.
Hey, sure ask them otherwise you'll never know how to help them. Most seizures (of which there are over 40 different types) don't require an ambulance anyway. But your friends should be able to tell you about their epilepsy. Also, only 3% of those with epilepsy are affected by flashing lights! It's great to ask questions so thank you. PS I'm one of the people in the video. 🙂
I once pulled myself out of a seizure by mentally reciting (verbatim) several chapters of Harry Potter and the Goblet of Fire... I did once freak out two thirteen year olds by having a seizure once. I was at school, during lunchtime, and started having a seizure and they started to massively freak out. At first they paid no attention, then they noticed and then it got to "Okay stop it now!" as I clung to a barrier. Then I was on the floor full on seizing at which point they ran up the steps that I'd been trying to go up the moment I realised I was starting to have a seizure. The stairs to the nurse's office. Also, when I was in Year 9, my English class was studying Lord of the Flies. Although it's not specifically stated, it's implied one of the boys has epilepsy, he later dies due to a seizure. My teacher started to describe epilepsy in a really horrific way, me getting slowly angrier in my seat. I was just about to start talking when my friend Phoebe caught my eye across the classroom and just shook her head minutely. I sat in that lesson slowly seething.
Look I wasn't going to sit there and take that shit nah didn't matter what my friend say this is exactly everybody has a misconception about epilepsy its either they talk about it and spout shit or they don't talk about it at all. But that's just my opinion😂😂
Taylor Duda I feel the same way. It's like as soon as you tell someone they either laugh or start treating you really weird. I just keep it to myself nowadays.
my older sister had epilepsy, she sadly passed in 2015 due to having a seizure. when people tell me its not that or when people make fun, It really does make you realise how little awareness we have of it
I’ve only had big seizures in my bedroom because they happen when I’m asleep but I’ve had an absence seizure in a public toilet before and I started crying for my mum, it was really embarrassing, I was 15.
I had an absence at work, forgot I was working & thought I was just out shopping. Thought I’d lost my bag and was confused when a customer asked me a question 😂
I have Epilepsy and a bit ago a guy I knew said like "I don't know if it's one of those questions you're not supposed to answer. But do you have seizures often?" And I don't know. I can count on my fingers how many times I've had big seizures (tonic clonic ones) yet I have myoclonic seizures and absence seizures all the time. And I never know how to answer that question. Everyone asks. Anyway. I love this video and I watched it like a million times. It's so funny and it shows epilepsy in just that kind of way I'd like to do it (try spread Epilepsy awareness. It's hard, nobody listens) I loved that it wasn't all about tonic clonic seizures and flashing lights. Thank you so much to the people making this video and I hope you have a good and seizure-free week.
Amanda Hanahan stand up straight. Sit properly. Straighten your shoulders. Quit leaning. Is it really that bad? Does it hurt? Can I feel it? You wouldn't be able to tell.
If you have scoliosis why don't you wear a brace? And my personal favorite from my doctor "you've stopped growing, so it won't get worse. Surgery isn't necessary."
lmao right, people are so surprised when I explain how much I prayed for my surgery! And when I woke up in the morning with my night brace unstrapped with no memory of doing it :'D
This is one of my favourite vids ever seen , need more content like this on epilepsy! Best way I believe to help informally educate people and make it a bit of a laugh (dare I say it) at the same time!
I had a friend who actually died related to epilepsy. He went into the water alone after a hike and maybe his body was more exhausted than he thought and he basically drowned before we realised what had happened. But even before that when we learnt he had it, we genuinely would ask him, what his triggers were, what we should do if he had a fit, stuff like that. He was super chill about it too. He had a fit one old years night and because we had talked with him about it so much, we knew exactly what to do. TBH i was scared but being prepared was an excellent thing, u just go into save mode. Someone went to his house got his meds some fresh clothes and came back. When he woke up and got himself together, he took his meds, had a bath and we had a blast til like 9 am. No one judged him or asked dumb questions about it. sigh, I miss him so much :(
Seriously, brought a tear to my eye. I think I have just enough paranoia to not go swimming because of this exact nightmare scenario. And it makes me sad and just mad sometimes, because I know my seizures aren't as bad as many others' I've met and it seems like they tend to happen more at night (the grand mals, anyway), though they have happened during the day too. Still, I feel for people who just want to have some damn fun from time to time, maybe a drink on New Years, or a little weed, or just go for a damn swim. Because we can't even drive and you get mad sometimes thinking about all the limitations. I'm sure your chum loved that day you guys had together.
So sorry for your loss. I know it's a general rule of thumb for people with epilepsy to not go swimming alone for that very reason (but idk how many really follow that), but my epileptologist wants me to try and make sure someone is home when I take a shower because I have a history of falls. It's interesting what epilepsy can do..
I was photo-sensitive when younger, but epilepsy evolved to a different, unknown cause later on. Because of having so many petit mals so often, the neurologist said that there's about a 0.1% chance of the next medication working. He recommended a surgery after my whole 24 years. 11 years later, no seizure. Not everyone's so lucky, but I know a bit of their pain (take that literal or figuratively). And just about everyone refers to flashing lights to this day when I talk about it.
I'm with you guys, thank you for sharing information about epilepsy. I can relate alot since I have epilepsy. Sometimes comments are hurtful and it is important to inform people about epilepsy. It is horrible. Almost everytime I have a seizure I think I'm going to die. I belive that it's not talked about because many people are worried of it's consequenses. For example: Since it's an "invisible dicise" it's easy to hide and to not talk about. I know some people with epilepsy ignoring to talk about it because of that also because their afraid of how the society will react. Obviously everyone is different so decide for yourself. I really appriciate this chanel and belive epilepsy is important to talk about. I also think that the other videos are very informative and important. I've never shared this much about my thoughts on epilepsy. I wish everyone a great day.
I have epilepsy and only my close friends know. I hate it when boys in my class always be like, 'James show jack your spaz thing'. I just hate the word spaz. Anyone else? Like if you do too. 👍
I’ll punch them virtually if that helps. And I agree, when people refer to my seizures as ‘spaz attacks’, I pretend to not get offended but on the inside I get super pissed.
When ppl learn I hv epilepsy they go "Oh! That's that thing where you spaz out!" I'm just like "Technically ur wrong. If you want though I could repeatedly punch ur head until u have a seizure though!"
Okay, I was into the whole subject of epilepsy, and if they have a seizure, do NOT hold the person down. Do NOT stick things in their mouth. It’s best to use a sweatshirt to put under their head so they don’t bump their head or hurt it. Timing for a seizure usually doesn’t last for more than 5 minutes. If it does, dial the emergency services.
This was a great video & yes were possessed & so is my cat lol...jk Two yrs ago I was diagnosed for nocturnal epilepsy. I still drive, go to school, and have a job. It is stressful but I will not let this disability render me from living the life I want. I was taking medication but I still would get them. Now when I switched to marijuana, my seizures slowed down & I haven't had one in 8 months.
When the guy in blue said there were times he woke up from a seizure and he so felt happy to be alive, that really got me. I'm on the bus and I'm glad it's not that full, I shed a tear and had to pause the video. I'm binge watching this series so much right now.
THANK YOU for this! The “it’s not a disability” conversation really hit hard. I can’t get assistance with public transport (U.S.) because I can physically get to and stand at a bus. It often feels like we are too easily forgotten in the discussion.
I know it's a rare disease, but it's extremely poorly misunderstood, so PLEASE consider doing a "Things not to say to someone with RSD/CRPS". I'm so tired of people telling me they know exactly what it's like to be on crutches because they sprained their ankle once. Okay, come back in 10 more years of crutch use and tell me the same thing. And yes, I'm *that* sensitive to the sun, and heat, and cold, and touch, and and and...
As an epileptic what I personally dislike is when I 'come out' as an epileptic and the first thing they say is 'omg are you OK?'... Well I haven't had a seizure since I opened my mouth a minute ago, so yeah I am doing amazing today
mahala Clarke but the question "the worst place you had a seizure?" Is a great story to tell, if you didn't want to share you could just make a very short copy to tell or tell about another story
fofomoon it's great if that's the persons sense of humour!! Sadly people who have friends like myself who have died from seizures don't always find it a laughing matter
I haven't been epileptic all my life they found out when I was 25. But i say the worse place so far for me was the top floor then being in the hospital that sucked
This has made me feel so much better about my epilepsy. I get the "that's not a real disability" all the time and it's very rude/disheartening to be invalidated like that. Knowing that I'm not alone makes me feel better though, so thank you.
People who asked these questions you can tell they dont know anyone who has seizures or have them themselves but its a great thing to know so I love these videos because they make explaining a condition so easy to someone
I like when people ask questions about my epilepsy or about how they can help! It really bothers me when I tell people (who know that I have epilepsy) that I just had a seizure recently and they say "awww, ohhhhh!" with a bunch of pity and sadness. I usually have two seizures close together every three weeks. My epilepsy is always there! Why are they acting like it's a new thing?! If they feel that sad then they should react like that every time they see me! "Do you still have epilepsy? No seizure control? Awww! Still sad!" (That would be weird too like it would to react to any person with a long-term disability). It bothers me because it's like people don't understand that epilepsy always affects me, not only after the seizure.
My GP referred me to a neurologist because I've had seizures and body jerks and now disco and flashing lights effect me. Watching the people in this video talk about their experiences, has helped me make sense of my own over the last couple of years. When I get my appointment and results and if it is epilepsy, I hope I will speak about it as confident and as freely as those in this video
"If I'm possessed by anything it's not epilepsy, it's crippling self-doubt" SAME.
Absolutely. I second guess and triple guess EVERYTHING. i have had post ictal amnesia so many times i never know what i don't know because i have forgotten. It can be overwhelming.
Some people online are ignorant men who judge what they don't know and they fear people because they really don't know about it. Hopefully people will stop listening to negative people online.
:(
Try not to doubt yourself you can Atchieve great things if you have the desire to
True!
As someone with epilepsy I like when people ask questions. By them saying things like "should I hold you down" opens up a dialogue where I can explain that that won't do any good and then I show them the recovery position. I was in a club with strobe lights and my best friend quickly covered my eyes and brought me outside, I couldn't stop laughing because I'm not photosensitive but I thought it was sweet that he got all panicky for me. My epilepsy is a medical condition that I have it's not part of my personality and if you have questions please, ask away because that's the only way we can allow others not affected by it to be educated.
Joy-Colleen Murphy i cant completely relate but I kind of understand because my mom and my sister have epilepsy (so theres a possibility that i might have it) but they dont get it from flashing lights they get seizures from stress (usually)
Space cow Alien hi there! If you're experiencing seizures I wish you luck on your journey to diagnosis and stabilisation :) mine tends to be triggered by stress too. Photosensitive epilepsy only affects 3% of all people with epilepsy. I hope your mum and sister are doing well :)
Whew, I cannot STAND the eye-covering. I understand where it comes from a place of concern, but c'mon. I know my triggers!
emma lovely I understand. But the point I was making was that I corrected him after he did that and it never happened again (because I explained my triggers and what to do if I have a seizure). It came from a place of genuine concern. I'll never be angry or offended by people caring about my wellbeing, but comments like "it's just a seizure" or "I don't think you should be classed as disabled" that's when I will get angry haha 😂
Oh, no, I understood you! Was just lamenting in the epileptic woes with you, haha. And ahhh, I can't stand that either. People in middle school said I used the elevator simply because I was lazy, even though it was widely known that I had seizures and having one on the stairs would be absolutely nightmarish. The ignorance towards epilepsy is outrageous.
"Don't have a fit!"
"Strangely enough, I *can't* control them."
This is my favourite quote 😂
*don’t
@@beah8316 can’t*
Literally
“It’s ruined parts of my life. But it’s not going to ruin my life.” A quote to live by.
'I'm possessed by crippling self doubt' OkaY buT ME
can we have things not to say to someone called Noah...
More Wolfy ahaha oh awkward
NoahLouiLife Tumblr please.
NoahLouiLife SAAAAME
TransitioningGhoul if👏🏻that👏🏻ain't👏🏻me
"Ambulances are irony on wheels" haha
Let's Talk Living I don't get it 😭
mikemy100 flashing lights. Her epilepsy is light sensitive so ambulances' blue flashing lights may trigger a seizure in her, which is ironic as ambulances are meant to treat your condition, not cause it.
Anniemaniac17 thank you
Let's Talk Living HEHEHEHEHEHE GOT IT
Living Zebra so true tho lol
"When someone says to me, thats not a disability, I invite them to have a seizure, wake up in their own piss and now they have to think of what they just did" as a person with epilepsy that makes me laugh because it's completely relevant.... everyone with epilepsy whether you have incontinence or not knows the feeling of coming out of it and having no clue in hell what just happened or where you are, Im absolutely drained for two days after mine.
I haven't been able to drive since 18 I'm now 23... ☹️ My license ended with me pulling into my driveway just about to park and seizure came, I slammed the gas and ran into my front porch 😳. People don't understand you are stranded with out a car most of the time unless you can get dang rides, I've done bit the shit out of my tounge and most recently BOTH sides of my cheeks I'm about to get tissue removal surgery thank God I can. Pills help but will never take them away. I feel so bad for ones who can't get surgery. I've had epilepsy unknowingly since 13. I kept getting into these wierd feelings of scared, butterflies, and not wanting to speak even though I could. I never knew they were seizures until my first grand Mal. I work down the street from my house so I can walk ☹️ can't rely on rides from people or the bus to get to work so I can't go anywhere until this surgery... I've been living this life for 10 years.. I know how it feels. It really makes you kind of hate yourself in a way. Or that's just the feelings I get sometimes. I feel like my whole life is screwed and I'm so behind in life because of this. Graduated high school, offered a scholarship and boom epilepsy. I get into my feelings a lot I wouldn't wish this on my worst enemy. Yesterday morning I had a seizure while sleeping. My boyfriend heard small coughing noises and woke me up out of my seizure. I bit both sides of my cheeks BAD. The rest of my day everything I drank tasted so sugary? I've never experienced that before. Has anybody heard of this? My dosages haven't gone up at all. My cheeks are now swollen hardcore but my taste came back today. Weird.
@@gocowboys51411 yup. I haven't experienced it with taste, just hearing and occasionally smell. The coughing he heard might warrant a trip back to the EMU because it is a sign that your seizures are effecting your ability to breathe so mention it to your dr.
@@Karen-pk3uv I ended up not being able to get tissue removal surgery.. I was only able to get the RNS implant device.. going to take a whileeeee to start working but this is what I'm stuck with ☹️ we will see how things go but my hope of getting rid of these seizures is pretty much gone. We will see how good this device works in the next year.
@@gocowboys51411 i haven't responded to any of the meds and the only time I seem to be able to go without is when I'm in the EMU. It is so frustrating constantly trying hold onto some bit of hope. I really miss friends, working, school, and driving. I hate it. Please let me know if the RNS ever works as advertised
Coming out of it and finding myself in the middle of puking and blood spots on a towel because I’ve bitten the hell out of my tongue is something I hope I never have to experience again in my life.
People: *"Are you possessed?"*
Me: *"Yes. Go, before I eat your soul"*
Well, hellø there, felløw human! 😂 I should start saying that
My life with Epilepsy Eloise ayyy do it lol you’d be surprised at the amount of people who look genuinely shocked
LMAO
Omg people are so ignorant about this disease, i fell u
sasa mohd tell me about it😅
i love these series bc it educates me on stuff i never knew i needed to know.
sahco I agree 100%
You really dont need to know this bollocks
have u ever even known what it's like to live with this condition, its shite only talk about things you know
I said that because I have epilepsy and did you really just call someone you don't know a hoe?? that's very rude
Maddie Pickard that still gives you no right to talk badly about someone you don't know if they have it either. If they don't they still care enough to be educated so please be quiet keep your rude outbursts to yourself.
As a child I had "absence seizures" which are basically really short seizures every few seconds that are not noticeable. Because of this I was behind on reading and writing and I couldn't listen to a complete sentence. My mom thought I was just being a little shit, but no, these seizures were literally interrupting my train of thought. They eventually grew into full blown 3-4 minute long seizures. After years of careful monitoring and a specific diet, I actually have been dismissed and haven't had a seizure in about 8 years :)
Beans congrats☺
Beans yes! I have partial seizures several times a day and a lot of people don’t seem to realise that’s a thing. I’ve only ever had 6 tonic clinics in my life.
I have both absence seizures and about once a year i have a "physical" seizure, can u tell me more about what you did to reduce them? My doctor just told me to learn live with it😑
sindy rietvink my seizures have always fluctuated a lot as they started when I was 12 and I turn 20 in July, so hormones had a huge impact as well as poor mental health. We’ve tried a lot of different meds but the ones I found most helpful was lamictal for my partials and phenobarbital stopped my TCs. Could you try seeing a different neurologist for a second opinion?
These kind of comments make my day
When someone asks "are you possessed" assume that they have time traveled back from 16th century.
Vishva Kumara if someone asked me if I was possessed, I’d look them dead in the eye with the most serious expression and say “yes”, just to scare them a little.
When ppl ask me that I say "yeah, apparently the devil can control me at random times"
Colonizers.
Thank you for this. I'm epileptic you are truly asking things people have asked me. Education on epilepsy is vital there are people in psych wards. That should not be there. There is no cure but I have hope and I live each day more greatful for waking up.
The girl who said she couldn't drive and its a disability yasssss queen thank you i would love to explain all of my epilepsy to twats I know
I haven't been able to drive since 18 I'm now 23... ☹️ My license ended with me pulling into my driveway just about to park and seizure came, I slammed the gas and ran into my front porch 😳. I'm about to get tissue removal surgery thank God I can. Pills help but will never take them away. I feel so bad for ones who can't get surgery. I've had epilepsy unknowingly since 13. I kept getting into these wierd feelings of scared, butterflies, and not wanting to speak even though I could. I never knew they were seizures until my first grand Mal. I work down the street from my house so I can walk ☹️ can't rely on rides from people or the bus to get to work so I can't go anywhere until this surgery... I've been living this life for 10 years.. I know how it feels. It really makes you kind of hate yourself in a way. Or that's just the feelings I get sometimes. I feel like my whole life is screwed and I'm so behind in life because of this. Graduated high school, offered a scholarship and boom epilepsy. I get into my feelings a lot I wouldn't wish this on my worst enemy. Yesterday morning I had a seizure while sleeping. My boyfriend heard small coughing noises and woke me up out of my seizure. I bit both sides of my cheeks BAD. The rest of my day everything I drank tasted so sugary? I've never experienced that before. Has anybody heard of this? My dosages haven't gone up at all. My cheeks are now swollen hardcore but my taste came back today. Weird.
@@gocowboys51411 ever had dejavus? Ive had them along with many other things like what you've mentioned. Had enough of them by 32, was like bouncing between dimensions or something. Was then diagnosed with temporal lobe epilepsy, and ye lost my job and driving licence. As far as i know i only have focal seizures but i have had strange experiences while sleeping and have woken up to find ive chewed my lips and cheeks up and swallowed most of the blood 🤢 starting to wonder if i have generalised seizures in my sleep.
@@dazparry1580 yes I do have deja vu I'll try to explain it as good as I can. first off feel something in my stomach like butterflies or like I'm scared it'll take over my whole body quickly and I will have to stare and I feel like I've sat in that same spot and looked at the same thing. start to lick my lips and I feel like I'm going to throw up because my mouth starts to water. I'll sit there for a few seconds and once the feeling goes away I will feel tired and stressed. I have temporal lobe seizures as well but we figured out they bounced over so the other side of my brain causing the convulsions. I'm going to be getting EEG surgery put under my scalp and sit in the hospital until I have a seizure and all of these years they've only captured one seizure and it was when I was asleep at the hospital. I've woken up to a bit tongue before. It's really a scary feeling I may feel a little tiny bit of this and then fall over and start convulsing or it just won't go that far and go away in about 40 seconds.
@@gocowboys51411 i have the exact same.. I havent fallen down or started convulsing but i do get shaky and off balance. Once my dejavus got too intense and i felt like i was in the matrix or something, i insisted that i saw a neurologist. They twigged it straight away, now im just waiting for a medication which stops them. On my 4th kind so far but still having them.
@@dazparry1580 I've tried 5 different medications, none of them took my seizures away completely but they manage them. I'm a female and a lot of people have seizures because their hormones fluctuate. Around the girl time of the month I'll have my seizures right before then. Always the first or second week of the month. Hopefully they can do tissue removal surgery for me. It might not even change anything, or it can change my life. I wish good luck to you and myself because we need it. It's hard to live with I know I think anyways.
once my principal told a girl to stop having seizures because theyre distracting the learning community
Who? Why? I.. That's just fowl. Completely fowl.
Ryan Bryant-Smith yeah lmao just take out the distraction. She can't stop having seizures wtf?
+jadecoolness101 Exactly. I mean. Seriously.
+Mr Troller Awww! That would be so sweet of you to do that for her!
Ryan Bryant-Smith I've dealt with a crap head teacher people said they would take a bullet I would take bullets for people who have been in my situation
Am I the only one who really wants to hear the whole story on the woman who said she had a seizure on a five-year-old.
SmellamyBlake heya, I'm the woman in the video that had a seizure on a five year old. I saw your comment and thought I'd clear up the question as while I explained the situation when filming it unfortunately didn't make the final edit - basically, I've been diagnosed with absence seizures since I was 13 and have since had myoclonic, atonic and one tonic clonic. I'd gone to visit my mate for his 21st birthday. We'd been out drinking for it, it was really sunny that day, I was stressed because my dissertation hand in was that week coming and I'd taken my meds late (don't try this at home) I'd had 20 atonics that morning but had been told by my neurologist that it was likely just low blood sugar making me collapse so I didn't think anything of it - I now know it's a seizure type. I was saying goodbye to him at a bus stop so I could get my train home. I remember the bus pulling up and hugging him goodbye at that was it. I passed out after that tonic clonic and when I woke up I was being lifted into an ambulance. The paramedics asked my friend how I'd fallen because I didn't have many injuries considering I'd gone down on a pavement - it turned out that there'd been a kid stood next to me at the time so when I went down he basically became a child shaped seizure mattress, saving me from injury but also scarring him for life.
Yikes, that's quite a story. Poor kid. Out of all places to have a seizure! Glad you were okay though. Hope that is the only tonic clonic you ever have to endure.
I hope so too! That was May 2015 and haven't had one that scale since. I think it was just a bad accumulation of every trigger I get rolled into one. I was more annoyed that I'd been a year seizure free and had applied for my driving license. It had taken months to go through all the medical processing etc... it arrived in the post two weeks later after I'd had that seizure. Never been able to use it.
Hahaha thank you for the explanation (also for the rest of the video).
Jena Selle no worries! I'm glad I've managed to help raise a bit more awareness even if it's not much. It's a shame that they didn't include any of the discussions filmed about different seizures, but I guess you can only fit so much into one video when it's this length and in a light hearted format.
i feel like all people need to do is ask what the triggers are (if they have any) and then asking the person what to do if they have a seizure. thats reasonable, right?
Yes & no. I've had helpful ppl, but help (nervous) triggered mine. As well as spiteful ones. Trusted ppl only
If someone knows that you have epilepsy, I'd say asking what to do if they have a seizure when you're around them is very reasonable, especially if you spend a fair amount of time around them. Asking then if they're comfortable sharing their triggers, I would agree, would be if you know them better.
All of my friends that I'm around consistently and my work supervisors know what to do if I have a seizure.
One of my triggers is doing intense physical activity without having water for 30 minutes. Another one of mine is strobe lights.
Some triggers are not so straight forward. For example low blood sugar, unexpected stress, dehydration and a whole range of other things that are sometimes unforeseen
Thank you for posting this. I have been battling epilepsy since a car accident about 10 years ago. I am just now being treated for it and seeing positive differences in my life. I am actually making CZcams videos on the subject of my battles with TBI, epilepsy and myeloma. This is well needed! Thanks for posting this...epilepsy sucks!
Let's just go for the obvious here: Don't make fun of seizures/fake seizures in front of someone with epilepsy! "Look dude. I'm having a seizure. Haha." That happened too many times growing up.
missylks123 Happened to me today when a light in a classroom started flickering 🙄. At least they realized I was there and stopped.
That happened to me in school. Thought a kid was making fun of me. Turns out he had an asthma attack. Don't worry, the kid ended up being alright afterwards.
missylks123, it’s not funny.
Athomas Eternallove. I know.
Athomas Eternallove I agree. It’s terrible when CZcams posts seizure pranks.
You can't sit there and say that epilepsy is not a disability because I can't remember what I've done the day I have a seizure. Then I'm completely drained for the next two days. Also, I can't drive and to be honest I don't want to because I've had three seizures in cars before and I don't want to hurt myself or someone else. Just the thought of driving gives me anxiety.
Angel Damers you're not alone sis. I've had epilepsy since 12 years old and I have seizures in random places sometimes like in church, on the toilet, etc. It's not a walk in the park. When I wake up from one I feel so dazed and I have no idea what to do with myself. I'm 19 now and I've had seizures all year so I'm not able to drive :(
Angel Damers same here. I'm afraid to drive because I don't want to have a seizure while driving. I get tonic clonics
My sister became a quadriplegic because she fell and broke her neck during a seizure......very important to take those meds regularly.
yah like because of my epilepsy I developed a learning disability that causes me to struggle in school. I have gotten my license but I do get nervous when I get tired so I end up not driving that day or unless I am more energetic.
Saaim Ali Sorry dude, hope you're getting by ok! Having too many severe/long seizures or lots of milder/short ones *can* damage your brain I think - at least your memory. Not sure on that, but definitely temporary impairment always happens after a seizure, with memory being especially damaged!
Based on what i know, the chemical receptors most imvolved with seizures are the NMDA receptor and GABA-A receptors. NMDA receptor is *key* to memory, it has a special function no other receptor is known to have - called "coincidence detection" - and that is central to memory. A seizure really messes with NMDA receptors, overloading them which causes a rebound effect of them being desensitized after the seizure, which impairs memory for a while. That's my theory and I'm sure there's muuuch more going on than that simple account I just gave, but I'm no expert and have no idea what else is going on haha!
I easily notice my memory is *terrible* straight after a seizure - like i can't even remember my name - and bad in the days following. Overall, it has like a "reset button" effect on my brain, clears away any previous emotions and fascinations and lets me develop new ones, which can be good or bad, sometimes it's nice when I was feeling groggy before, to be "reset" and feel more upbeat and energetic afterwards. But other times it's been the other way round - just luck of the draw I guess.
I died when she said “I can’t focking drive.”
It sucks on not able to f@cken drive 😒 if I could u’d see me driving nearly every time of car or truck and no I can’t ever ride a motorcycle either
It is horrible
😂
That's when I realized I'm going to be okay in life with my epilepsy
Some of these responses are really inspiring. It's taken me eight or nine years to come to terms with my epilepsy and I'm only just now getting past the self-pity and the 'why is this happening to me' attitude. Hearing about other people with epilepsy who just get on with life and don't let it hold them back is, well, like I said, inspiring. Thank you for doing this video and thank you to everyone in it
I am one of those people with photosensitive epilepsy that is minimised in this youtube thing.. Yes, I do want you to turn off the bloody lights. They are unnecessary and hurt me. Yes, glary days, old computers and gigantic tv hurt my head. A bit of consideration would be nice. Be happy they ask. It is a rare thing I can tell you.
Right? Please, ask away!
Otherwise I have to make a choice between 1)feeling like a party-pooper / shitty person for asking, again, that the lights be turned off just for little me, or 2)leaving without saying anything because I don't want to bother people.
If people ask me if they should turn the strobes off, it shows they're thinking about my well-being and that they think it comes before their party lights. That they want me to stay here.
It means SO much to me.
Me too. I understand that people don't always think about it or forget but I can be so ill from flashing lights which are so easily preventable especially when Put in tv or film unnecessarily
Ash Ley No but I do get aches and stiffness in my jaw but I get that in my legs too especially on the right side because my seizures are right sided. No advice to give other than keep going the best you can and know that unfortunately you are naturally at a disadvantage so don't compare yourself to others. For me my memory and processing is really bad from my seizures so I know that I can't do as well in an exam as other people and have now learned to accept that my best is my best.
Thank you very much. I am glad I could help!
When there's flashing lights I feel weird and my vision goes slightly weird for ages and suddenly I'm drowsy and my head and eyes start hurting
I had a seizure on Christmas Day and at the moment I'm having tests and also in the past i have blacked out 2 other times in the past....
"That's not epilepsy" in my case. Cause people can't seem to grasp that Epilepsy is not only falling and flopping around on the floor, there are a ridiculous amouth of difrent seizures and me personally i get agressive and i wake up tired as shit, still.... That's frontal lobe Epilepsy.
And for he love of god... DON'T SHAKE AND SHOUT AT SOMEONE WITH A SEIZURE!
Preach!
I have temporal lobe epilepsy, and although I have had grand mals, I don't just drop and shake. I haven't had a grand mal since 2015, but I do have petit mals, and anyone who didn't know me wouldn't even know I was having them, but the psychological and physical after effects are awful and people don't seem to realise it. Even after a small petit mal, I'll be wiped out for a couple of days, really grouchy and spaced.
LilEvilJane yes!!!!! i've gotten that.
Steve Lee - my baby brother was fascinating to doctors and scientists. Due to his brain damage, he could have a 6 hour long grand mal, be out for about 5 minutes afterwards, then sit right up and start chanting, "Go go go." (He was mostly non-verbal due to the same brain damage, but he knew both the sign and the word 'go' and knew exactly what they meant.)
I just got petit mals and even if i just shake like a chihuahua mostly unless someone touch me and i'll most likely go full on the hulk if that happens. i'm feel like i've been running a marathon, my muscles feel like death and i'm so tired i could sleep for days. Yet since they're not big and dramatic, people don't understand how bad they are mentally.
yeah mine are petite mal (probably not the correct term but I don't know how to spell the other name for it oops!) which is were you suddenly zone out kinda for a few seconds?? It's much worse but you might blink a lot of have face twitches or more noticeable stuff. Though I've had grand mal, that doesn't mean that all epilepsy is is people randomly flopping on the ground jfc. I wish these types of seizures were more well known.
The amount of times I would have a petite mal seizure in class and my teachers would call my mother and tell her I wasn't paying attention, even though after them I would go right back to what I was doing is mind boggling. It's like none of my teachers through out my school career didn't acknowledge my Epilepsy.
That's so me. I have petit mal seizures to. I forget what im doing after the seizure.
I wasn’t diagnosed till grade 8. I have the same kind too. I take 14 pills a day. They are controlled now but still.
My mom met with my teachers every year.(until college) Those teachers knew what was happening. They even communicated with my mom by special stars and notes in my homework and memo book.
That's me. I have petite Mal sezuires. I'm 14 and recently got diagnosed this year. None of my teachers take it seriously. They think I'm fooling around. It's very annoying
It is a disability! I can't drive, can't have certain important medication( certain antibiotics etc)
It's scary I can drop while I'm walking. Stress and my period can trigger a seizure.
It’s not a disability, it’s a medical condition. Stop wanted to be disabled so bad
@@kaylalloyd869 a disability is a condition that affects the body or mind, my Epilepsy definitely comes under that term. It's not something I want, it's something I have and have had to learn to deal with.
@@kaylalloyd869 How do you know that exactly? It's a chonic neurological disorder and disability. By the bloody definition.
True
What not to say to someone with dwarfism would be super nice to know!
Local Hobo - I want to say that one has been done...Not sure, though. But I'd try hitting the archives.
How's the weather down there. That's a mighty tall order. high five...i'll let myself out.
Maybe not to talk about their height and yours also. ...bragging about your own height will must be very heart breaking to them I know how it feels becoz my cousin is passing through all this
Local Hobo Does Santa know you left the workshop?
The newest video added
Do "Things not to say to someone with social anxiety"
Astrid Nielsen I wonder how that would go because they'd be around people and cameras
Carmen Becker social anxiety doesn't mean you can't be around people at all...
Carmen Becker If a video about social anxiety is made, I really hope you watch it.
^^^
Astrid Nielsen YES!
1:01 "if i'm possessed by anything it's not the epilepsy, it's the crippling self doubt" *that hit different*
I have epilepsy and i couldnt go into work because i had a seizure after 7 months and i was on pain for hours. She said "well if i had the flu i would be in trouble for missing work" i said how the fuck do you think you are for comparing the flu to a grand mal seizure ( which is the worst kind ) you try having one and getting up feeling fine.
Triston caudil what business would you get in trouble for missing work due to flu? I think that’s basic protocol for not passing pathogens on to your coworkers
I usually tell HR in the beginning that I may need more sick days because I’m epileptic
i have epilepsy and i'm only 16 and i've been asked every single one of those questions!😒 but yay me, i haven't had a seizure in 2 years!😊❤
Danielle Barton I haven't had a seizure in two years as well :)) they switched my medication and it's been so much better
Danielle Barton I'm 17 and haven't had a big one for 5 years, but about 30 little ones a day. They are not noticable easily for others, so not many people know about it and I can avoid questions this way😊🙈
What age were u diagnosed
Awesome! You go girl! Sorry about the questions tho...
That’s good to hear fingers crossed 🤞🏻 it it is still that way for you
I remember telling a kid at camp about my epilepsy when I was younger and her response was to turn her flashlight to strobe mode and point it in my eyes to see if I was lying. thankfully, my seizures aren't light-triggered, but she had no way of knowing that. that's probably my worst encounter so far of people not acknowledging the seriousness of it, but absolutely NOT the only one. most people don't understand the extent to which epilepsy can affect a person's life. for me, I had both tonic-clonic and absence seizures. the tonic-clonic seizures were the most traumatizing in terms of growing up with epilepsy (waking up on the floor of random places with no memory of how you got there, with strangers panicking all around you, etc.) but what people especially don't realize is that absence seizures exist and are also very serious. growing up with them means having them several times a day in school, which also meant not remembering many of my lessons and needing to work even harder to maintain my grades. for the first few years I lived with severe denial of what was happening because I didn't want it to be true. when I came to terms with it I was in middle school and I would stay awake at night crying because I hated how scared my family must have been every time I had a seizure. as an adult I'm often kept awake at night by flashbacks to the times I had seizures (the auras, waking up confused and afraid, seeing the fear and worry in people's faces) and although I've been seizure-free for a few years now (thank goodness, and knocking on wood) I still find myself in fear of having another seizure at times. even little things like the head rush you get from standing up too quickly can give me panic attacks sometimes because for me they feel similar to an aura. epilepsy is a serious condition, yet I hear jokes about seizures fairly often from people who are unaware of the how negative seizure disorders can really be. there need to be more videos similar to this out there so that people can gain at least a little bit of knowledge and stop being hurtful.
*In the E.R*
Me: dry cough. She taught I laughed
Bully: Don't make fun of someone. You don't know, what they're going through.
Me: Epileptic side (smile trigger)
I said daddy. Bully spit fullness, tried to kill me, using our 1st aid against me & repetitive phrases. The entire time. Covered it up by lying, why she did it. Thank god I'm a smile/nervous trigger type
Fiona Mendell oh gosh I hate tonic clonics! I bit a chunk of my tongue one time and woke up with blood all over my shirt
Someone at my school went and used the flash feature on their phone when they found out I had epilepsy to see if it would trigger a seizure. Luckily I'm not light sensitive and even if I was, I might have been controlled by medicine. The thing was, this was also done in a classroom at the top of the English block building so if I didn't appear to recover from the seizure I would have had to have been carried down about 100 stairs. Would you really have wanted to do that?
I lived most of my life without seizures (as far as i know anyway) but 3 months into full menopause started having them. All types. I was in denial too for a couple of years. After each one, I thought, it won't happen AGAIN. Kept driving too. God didn't let me wreck and hurt anyone. To this day that amazes me. I have finally made peace with it. My grandchildren are not freaked out now when i have one. They know just roll me on my side and monitor. I can even joke with my family about it, God knows i have cried enough. I choose to laugh now. Some people truly don't think through what they are doing. They have no concept of how it may have wrecked our lives and what we have overcome to just deal with it. They really don't. Some wouldn't care anyway but some would.
Irony would be if these bullies suffer stroke April fools anyone
It’s ruined parts of my life. But I’m not going to let it ruin my life. That actually made me cry a little.
I love this, people do need a better understanding of epilepsy and how it happens/works. So thanks for making this.
Wow, I had no idea the extent epilepsy was belittled. Even as a child before having an epileptic friend I knew seizures = serious condition. It also baffles my mind that some still try to use religion as a reason someone may be ill. Ridiculous.
Ideges_Csillag my dad tried to force me to do some prayers....I've been praying all my life but yet I still have seizures so it's not spirit that is tainted...
Ideges_Csillag my grandparents wanted to bring me to a church so we could pray and be
pious together (which is something I'm really not into). I ask you, what would that have accomplished more than me taking my medication?
Amen true good health to all and I'm only saying amen not hugely religious
Also love their British accents tho some I think r more flamboyant guys:)
please do one on "things not to say to someone with an eating disorder"!!!
Delyth Evans, yess!
Delyth Evans I believe they already have one
Delyth Evans YES
I get what you're saying but if they know that someone has an eating disorder they should probably be trying to get
them help and not putting them in a CZcams video. No offense though.
I was just about to comment this
When he said that he invites ppl so have a seizure in a puddle of their own piss I'm just laughing at how relatable that is🤣🤣🤣
As someone with epilepsy in school, when people say it isn't a disability it annoys me because they've never woken up on the floor in a pool of their own urine with saliva dripping down their mouth, not even being able to comprehend where they are, still to have people laughing at you and looking at you funny and bullying you for it. It's a disability, just because you can't see it doesn't mean it's not there.
someone: **is talking to me**
me: **has a petite mal seizure**
me after the seizure, trying to get my brain together: hey sorry can you repeat that? I think I might have had a seizure?
someone: oh my god stop having seizures and just pay attention
me: **explodes**
Ashton literally me
Um wow ok definitely not someone who deserves any friendships at all. Petite mal seizures are no joke and all they were worried about was their story??? Yikes
That offends me so BAD
Wtf
Them: are you listening?
Me: (shakes head to try and refocus) what?
I feel like asking if i should turn the flash off is reasonable? Like,, sorry im being kind and paying attention to your triggers jeez,,
Also photosensitive epilepsy is quite rare and the lights have to be flashing at a very specific frequency for it to trigger a seizure.
Daney Meads of course don't be dramatic af. its just the way they said it its like its a crime to ask a considerate question😂
SmellamyBlake true! i just think for people who dont know much about epilepsy its just a question to ask to make sure theyre safe. dont see how thats wrong in any way (of course not in a dramatic condescending way!)
I understand its to make sure you are okay but sometimes it drives you nuts when you always get the same questions.
Gabrielle Vachon I feel that if someone knows their own triggers, they'd let others know beforehand if there was a possible issue. It's not like you're just going to run by like a lunatic taking pictures of strangers and ask if they'd prefer the flash to be off because of POSSIBLE light sensitive epilepsy...
I’m 31 & got diagnosed with seizures (officially) about 4 months ago but between before being officially diagnosed & now I & others always said seizures or episodes or incidents NEVER used the word epilepsy & it didn’t even hit me (idk why it just didn’t) till I watched this video that I actually have epilepsy now & it kinda hit me like a brick across the face all of sudden & was like wow & frankly cried a lil bit & then was thankful for this video. I don’t know anyone who has epilepsy so I felt a lot less alone when the brick hit me while watching this video so THANK YOU!!! I appreciate this video a lot!!! Never forget everyone, always keep love in your heart & be safe!!!
I'm epileptic since I was 16 I'm now 40 and if I don't take my medicine 2 times a day I have drop seizures that being said I have traveled through Europe,Asia whole life by myself & I'm going to climb to mt Everest base camp in December this year
Don't throw a pity party for us we are stronger and more determined than everyone else
" *i'm waiting till marriage* " I LOVE THIS DUDE LMAO
Derrick lip (1:26😂) biting.
My brother started Epilim (the main medicine for epilepsy) a few days after being diagnosed with epilepsy, about 3 years ago. And I'm so thankful for the fact that he hasn't had any seizures for 3 years since.
AmyHasNoLife my mum takes four of those a day, but you can always tell when she's missed a dosage because she's so spaced out. I'm so glad it exists
AmyHasNoLife I had taken that for bout nearly ten years now
AmyHasNoLife I take sodium valporate
izzak jenkins you need to change your doctor then. if they prescribed you Keppra and it doesn't work, they prescribed you medicine for a different type of epilepsy. I take Keppra since I was diagnosed and I only had a few slip ups bc I forgot to take it and stressed myself out a lot.
I take lamotrogine and as long as I don’t miss a dose, I’m good. I haven’t had a seizure for 2 years now.
I started having seizures and was diagnosed with epilepsy when I was 22, 12 years later and I do still find it hard sometimes. But that was so good to watch, it’s nice to hear other people saying the same things I feel and knowing I’m not the only one. Thank you for making it!
Honestly, I have epilepsy and I always come back to this video and get just as pissed as everyone in it. Please if you don't fully understand what you're talking about don't talk about it like you do. It's not something someone can control and just because someone doesn't have a seizure-like what you're expecting it to look like absolutely does not mean they're not epileptic. It comes in so many different forms so don't assume you know what you don't. I 100% love this video and how it keeps people aware thank you for this because I don't see a lot of videos surrounding epilepsy as a topic
I actually got really angry watching this video. I do not have epilepsy, but I have seen many people have seizures. I volunteer to assist people who are homeless and have drug/ alcohol addiction issues.
I just get upset when people ask such rude and ignorant questions, as they discussed on the video. I think the video is really well done. The fact that people walked past someone having a seizure astonishes me (ie @ 02:45).
make a video about diabetes please.
headgaming biesel Especially Type 1 Diabetes because there are lots of misconceptions around it
yes it would be nice for them tu explain the difrence. People always ask me "aren't you supposed to be fat or were you fat once?" And i have diabetes type 1 so there isn't anything i could do about it. Still people with diabetes type 2 don't always have to be unhealthy.
Same with me.
I once had this kid say to me: "It's not my fault you were once fat."
(I'm type 1)
please! I have type 1 and I can relate so much
Would this include diabetes insipidus? Just curious, I don't have the condition but it is one of the more rare and lesser known forms of diabetes.
I have epilepsy and when I was little I went to a catholic school and the priest wanted to do an exorcism on me 😂
I would so agree on that😹
Libby K 😂😂😂
Really? What’d you do when you came out of it? 😂
Ha! Might have been interesting watching HIM! Just try not to giggle while he's doing it.
That’s freaking messed up.
How many of the ppl watching video have epilepsy...?
👇👇👇👇👇👇👇
Me, I just had a seizure on Monday and I bit my tongue really bad and it hurts 🥺 I’ve had epilepsy for a year now and I’m 16, I have seizures in my sleep due to unbalanced hormones and stress. Though I always feel grateful that my mum helps me when it happens. 😊
J Turkington Know how that feels. I was diagnosed on my birthday
I was in a car accident 20+ years ago and soon after started having simple and complex partial seizures. No meds so far control them.
I take 14 pills a day. I have petite mal epilepsy, totally controlled now.
Epilepsy since I was 5
as a (semi) newly diagnosed epileptic it’s really comforting to see other epileptics in this comment section :0)
i don’t have a name ! Welcome to the club, haha sorry I shouldn’t say that😅
You should do one on noncombat ptsd. As someone with (noncombat) ptsd I've heard so many things that are super shitty and invalidating.
McKenzie Rouge YES
William Parker most people associate PTSD only with soldiers, but any other traumatic event (hence the name of the disorder) can actually cause it aswell
You know, this is a great comment. I was in the military during Iraq; I never saw combat personally. Well, let's put it this way: I never was getting shot at or in harm's way. I was definitely part of the "front line" but as more of a behind the scenes player. I was a translator. Anyway, I never realized how much of a toll it took on me while I was in. But when I separated from the service, there was a solid year and a half that I could do nothing. First thing I'd do every day: roll out of bed and puke my guts out. Couldn't meet new people, couldn't leave home. Extreme anxiety. It was horrible. I eventually became friends with an elderly neighbor and he was kinda my gateway friend back to a normal life (I'm very extroverted).
But I *never* thought this was PTSD until I met a young woman this last fall who was a classmate of mine. She shared a little about a story from her past involving some trauma and what she went through in terms of her ptsd. And I thought "holy shit, that sounds like what I went through in 2008-2010." And she was basically like, "yah, sounds like you had ptsd."
So it wasn't until I met a noncombat ptsd person that I ever even considered what I went through as ptsd. funnily, I am here watching this (awesome) epilepsy video because that also started at the end of 2008 and I'm pretty sure it had to do with my service. So, as a "combat" vet, I can assure anyone reading that a brain is a brain is a brain, and ptsd can come from any kind of experience.
They should also do a mild cerebral palsy film aswell. even though I do have epilepsy I’ve also have mild cerebral palsy
"Are you possessed?"
Oh thank god I'm not the only one. I had childhood onset epilepsy and a guy from church once told my mum it was because of demons -_-
One dude told me that when i was a kid but since i was a "genius".... my brain went to: "I'm in a club for people with epilepsy.... ARE WE A CLUB OF DEMONS?!" never seen my mom so mad! I was so weirded out!
Because I get that question way more than is nessacary I've just started answering yes like growing up in the south it's a bit fun to watch some people believe you
Epilepsy changed my life for sure. The most defining feature of epilepsy, it’s different for every person who has it. If anyone wants to know more, I’d be more than happy to share more about epilepsy! Just never know if people give a shit haha
How did you get it? Sorry if that sounds terrible, but I wonder if it's genetic? What's it like? x
Yasmin Bleek I have epilepsy, it can be genetic but it’s usually quite rare. My triggers aren’t light, they are stress, strong hormones and changes in sleep patterns. Epilepsy can be quite scary as when I’ve had seizures, I have them whilst I am asleep so I don’t feel them and I just wake up on the floor because I fall off my bed, I always bite my tongue though which can be very painful for a while. Most people bite their tongues or wet themselves, it depends on the person. I also have absence seizures, they’re the nasty ones as it happens when I’m awake and is scary because it feels like an even worse version of sleep paralysis. I was diagnosed when I was 15 and I now I’m 16, I just recently had a seizure on Monday. I can’t tell you what is like as I never feel it as I am unconscious.
Feel free to ask questions as I certainly don’t feel that is rude and think it would do the world of good to get people to understand about epilepsy as it effects so many different people in different ways all around the world.
-Moxley
Yasmin Bleek It can be genetic- the form of epilepsy I have is genetic. Took a while for my family and I to figure that out because my sister and I were the only ones with seizures. We both started having seizures around 16/17, which is a characteristic of a certain type of genetic epilepsy. It is forsure scary. The best way I can describe it is that I have simply had to accept that I don’t always have control over my body. I only experience grand mal, or body shaking seizures that cause me to go unconscious. Luckily I do not lose control over my bladder. The hardest part has just been finding the right medications to stop my seizures from happening.
How often do you experience your seizures?
Rest In Peace Cameron Boyce😪
not necessary
everyone should be forced to watch this video because of the stigma against epilepsy.
It's quite strange for me to hear that there is a stigma against epilepsy. I have it and have never had a single negative reaction from anyone. They usually ask me how many seizures I've had and if I'm on medications. But that's it. Nobody has ever treated me differently because of it.
okay, that's good for you but just because you've never experienced it doesn't mean the stigma I and many others have experienced isn't real.
NemoVanessah yeah I don't usually get negative reactions. People are usually just super uneducated about epilepsy and know nothing about it. But they're concerned and curious
Jessica yes exactly. there's such a stigma and it hurts.
mypupismup okay, that's good for you. you *usually* don't get negative reactions when you tell others about your epilepsy. (Though, I'm surmising there was a time you did actually get a negative reaction since you used the word 'usually'...)
However, just because you haven't experienced that stigma, you ignore or rule out that there is a social stigma surrounding epilepsy. People are uneducated about the issue and stigma arises from lack of awareness, lack of education, lack of perception of the issue.
Could you do an episode on Chronic Illness or Invisible Illness please. This episode sort of addresses how people are perceived as healthy and fully functional based on physical appearance. Love the series. ❤
Epilepsy is very hard to understand unless you have it
during one of my seizures i started laughing like a maniac and bit my brother and looked in the mirror and smiled . I walked around the entire house singing something ..
now i get why people think we are possessed
As someone with epilepsy, I agree wholeheartedly!
👋
To anyone who has epilepsy who reads this, is it okay to ask what triggers your seizures just to make sure I avoid it? (such as camera flashes or similar) And is it okay to ask what to do if you get a seizure when I'm around? Yes, I would definitely call for an ambulance but I'd wanna know what to do while it's on its way.
I'm asking because I know a few people with epilepsy but I don't want to upset them, even though I know that everyone responds differently to everything, but i'm asking so I can help if it's needed/wanted.
Depends on their intentions. If you're really close friends, they'll tell you. Other than that no, it can be used against us.
That's understandable, thank you 💝
You're welcome, first aid videos can help.
Ok, I'm gonna check those out
Hey, sure ask them otherwise you'll never know how to help them. Most seizures (of which there are over 40 different types) don't require an ambulance anyway. But your friends should be able to tell you about their epilepsy. Also, only 3% of those with epilepsy are affected by flashing lights!
It's great to ask questions so thank you.
PS I'm one of the people in the video. 🙂
I once pulled myself out of a seizure by mentally reciting (verbatim) several chapters of Harry Potter and the Goblet of Fire...
I did once freak out two thirteen year olds by having a seizure once. I was at school, during lunchtime, and started having a seizure and they started to massively freak out. At first they paid no attention, then they noticed and then it got to "Okay stop it now!" as I clung to a barrier. Then I was on the floor full on seizing at which point they ran up the steps that I'd been trying to go up the moment I realised I was starting to have a seizure. The stairs to the nurse's office.
Also, when I was in Year 9, my English class was studying Lord of the Flies. Although it's not specifically stated, it's implied one of the boys has epilepsy, he later dies due to a seizure. My teacher started to describe epilepsy in a really horrific way, me getting slowly angrier in my seat. I was just about to start talking when my friend Phoebe caught my eye across the classroom and just shook her head minutely. I sat in that lesson slowly seething.
Look I wasn't going to sit there and take that shit nah didn't matter what my friend say this is exactly everybody has a misconception about epilepsy its either they talk about it and spout shit or they don't talk about it at all. But that's just my opinion😂😂
Thank you from America! I really appreciate you all taking part in this!
I have seizures and I refuse to tell anybody besides a doctor or family that I have them because I'm so scared that I'll get made fun of
Taylor Duda I wouldn't make fun of you 😊
Taylor Duda aight. Now you told the internet you have epilepsy.
yeah everyone on the internet knows who they are in person....
Taylor Duda I feel the same way. It's like as soon as you tell someone they either laugh or start treating you really weird. I just keep it to myself nowadays.
Taylor Duda I felt like that a first but now iam totally fine with mine
things not to say to people with insomnia
“Don’t have a fit”
I-
my older sister had epilepsy, she sadly passed in 2015 due to having a seizure. when people tell me its not that or when people make fun, It really does make you realise how little awareness we have of it
My top three worst place I've had seizures
1. During my mums wedding ceremony
2. Homeroom on the first day of high school
3. The friggin toilet
1. First day at work
2. Toilet
3. Whilest speaking to the police
1. While riding my bike
2. At my old job in the middle of customer service
3. In the middle of the street
I’ve only had big seizures in my bedroom because they happen when I’m asleep but I’ve had an absence seizure in a public toilet before and I started crying for my mum, it was really embarrassing, I was 15.
I had an absence at work, forgot I was working & thought I was just out shopping. Thought I’d lost my bag and was confused when a customer asked me a question 😂
1. shower
2. special occasion at my grandparents house
3. in the middle of a sidewalk around people
I want to know why BBC isn't censoring the audio but is censoring the captions.
Or it's a mistake.
Those are youtubes captions... not the BBC.
Satemama, no. If they were CZcams captions, they'd say "auto-generated".
Maybe for the algorithm to not get the video age-restricted
BBC Three You're Buzzfeed UK.
Why asking about the flash is bad? Specially if you don't know whether the person is triggered from light or not?
Nellie VDS . Intentions!.
Some people will say it in a sarcastic tone; as if theyre making fun of you
Animation Chronicles I had a friend who used to do that, she was the most toxic person I’ve ever known
@@moxleyismad7212 my own brother used to do that to me
I have Epilepsy and a bit ago a guy I knew said like "I don't know if it's one of those questions you're not supposed to answer. But do you have seizures often?" And I don't know. I can count on my fingers how many times I've had big seizures (tonic clonic ones) yet I have myoclonic seizures and absence seizures all the time. And I never know how to answer that question. Everyone asks.
Anyway. I love this video and I watched it like a million times. It's so funny and it shows epilepsy in just that kind of way I'd like to do it (try spread Epilepsy awareness. It's hard, nobody listens) I loved that it wasn't all about tonic clonic seizures and flashing lights. Thank you so much to the people making this video and I hope you have a good and seizure-free week.
things not to say to someone with scoliosis please!!!
Amanda Hanahan stand up straight. Sit properly. Straighten your shoulders. Quit leaning. Is it really that bad? Does it hurt? Can I feel it? You wouldn't be able to tell.
Quit slouching. It's probably because of your posture. Told you not to sit like that.
If you have scoliosis why don't you wear a brace? And my personal favorite from my doctor "you've stopped growing, so it won't get worse. Surgery isn't necessary."
Nicole Knight "stand up straight!"
lmao right, people are so surprised when I explain how much I prayed for my surgery! And when I woke up in the morning with my night brace unstrapped with no memory of doing it :'D
Things Not To Say To Someone With ADHD
Cristina Tacaciu YES PLEASE THIS IS NEEDED
yess!
Cristina Tacaciu HELL YEA BOI
Yessss!!! Please I need this!
This is one of my favourite vids ever seen , need more content like this on epilepsy! Best way I believe to help informally educate people and make it a bit of a laugh (dare I say it) at the same time!
“That’s not really a disability.” *His reaction with the ‘up yours’ is gold!
I had a friend who actually died related to epilepsy. He went into the water alone after a hike and maybe his body was more exhausted than he thought and he basically drowned before we realised what had happened.
But even before that when we learnt he had it, we genuinely would ask him, what his triggers were, what we should do if he had a fit, stuff like that. He was super chill about it too. He had a fit one old years night and because we had talked with him about it so much, we knew exactly what to do. TBH i was scared but being prepared was an excellent thing, u just go into save mode. Someone went to his house got his meds some fresh clothes and came back. When he woke up and got himself together, he took his meds, had a bath and we had a blast til like 9 am. No one judged him or asked dumb questions about it.
sigh, I miss him so much :(
Wow, I'm sorry for your loss. I hope you feel better.
thanks. It's been a few years now, but sometimes it's still hard
Seriously, brought a tear to my eye. I think I have just enough paranoia to not go swimming because of this exact nightmare scenario. And it makes me sad and just mad sometimes, because I know my seizures aren't as bad as many others' I've met and it seems like they tend to happen more at night (the grand mals, anyway), though they have happened during the day too. Still, I feel for people who just want to have some damn fun from time to time, maybe a drink on New Years, or a little weed, or just go for a damn swim. Because we can't even drive and you get mad sometimes thinking about all the limitations. I'm sure your chum loved that day you guys had together.
So sorry for your loss. I know it's a general rule of thumb for people with epilepsy to not go swimming alone for that very reason (but idk how many really follow that), but my epileptologist wants me to try and make sure someone is home when I take a shower because I have a history of falls. It's interesting what epilepsy can do..
Things not to say to someone who has depression please !
Saya N one: "have you tried being happy?"
" You're just sad ! "
" stop being sad all the time"
" your life is so perfect though "
“Get over it”
They have it now!
I was photo-sensitive when younger, but epilepsy evolved to a different, unknown cause later on. Because of having so many petit mals so often, the neurologist said that there's about a 0.1% chance of the next medication working. He recommended a surgery after my whole 24 years. 11 years later, no seizure. Not everyone's so lucky, but I know a bit of their pain (take that literal or figuratively).
And just about everyone refers to flashing lights to this day when I talk about it.
When I was younger I would have more than 30 petit mal seizures a day
I'm with you guys, thank you for sharing information about epilepsy. I can relate alot since I have epilepsy. Sometimes comments are hurtful and it is important to inform people about epilepsy. It is horrible. Almost everytime I have a seizure I think I'm going to die. I belive that it's not talked about because many people are worried of it's consequenses. For example: Since it's an "invisible dicise" it's easy to hide and to not talk about. I know some people with epilepsy ignoring to talk about it because of that also because their afraid of how the society will react. Obviously everyone is different so decide for yourself. I really appriciate this chanel and belive epilepsy is important to talk about. I also think that the other videos are very informative and important. I've never shared this much about my thoughts on epilepsy. I wish everyone a great day.
how is "shall I turn the flash off?" offensive? its just making sure they don't trigger a seizure...
ChaCha Charlie . When we know them. Asking constantly becomes annoying.
I know this comment is 3 years old but it’s because not every seizure is like that and it’s quite annoying
I have epilepsy and only my close friends know. I hate it when boys in my class always be like, 'James show jack your spaz thing'. I just hate the word spaz. Anyone else? Like if you do too. 👍
Mili Mai I'll bite their faces for you
I’ll punch them virtually if that helps. And I agree, when people refer to my seizures as ‘spaz attacks’, I pretend to not get offended but on the inside I get super pissed.
When ppl learn I hv epilepsy they go
"Oh! That's that thing where you spaz out!"
I'm just like "Technically ur wrong. If you want though I could repeatedly punch ur head until u have a seizure though!"
I hate when people do a joke about epilepsy and they didn’t know what epilepsy is... I really hate that
I have mild epilepsy and i never think about it in a serious light but when it comes to ppl who have severe epilepsy its very eye opening.
Okay, I was into the whole subject of epilepsy, and if they have a seizure, do NOT hold the person down. Do NOT stick things in their mouth. It’s best to use a sweatshirt to put under their head so they don’t bump their head or hurt it. Timing for a seizure usually doesn’t last for more than 5 minutes. If it does, dial the emergency services.
I hate when people are like to me don't fit or spass out. it just really makes me upset because I'm like I can't control my epilepsy
This was a great video & yes were possessed & so is my cat lol...jk Two yrs ago I was diagnosed for nocturnal epilepsy. I still drive, go to school, and have a job. It is stressful but I will not let this disability render me from living the life I want. I was taking medication but I still would get them. Now when I switched to marijuana, my seizures slowed down & I haven't had one in 8 months.
When the guy in blue said there were times he woke up from a seizure and he so felt happy to be alive, that really got me. I'm on the bus and I'm glad it's not that full, I shed a tear and had to pause the video. I'm binge watching this series so much right now.
THANK YOU for this! The “it’s not a disability” conversation really hit hard. I can’t get assistance with public transport (U.S.) because I can physically get to and stand at a bus. It often feels like we are too easily forgotten in the discussion.
Everyone in this video has such a hilarious sense of humor, it's great. "I'm possessed by my crippling self doubt" mE
I know it's a rare disease, but it's extremely poorly misunderstood, so PLEASE consider doing a "Things not to say to someone with RSD/CRPS". I'm so tired of people telling me they know exactly what it's like to be on crutches because they sprained their ankle once. Okay, come back in 10 more years of crutch use and tell me the same thing. And yes, I'm *that* sensitive to the sun, and heat, and cold, and touch, and and and...
Hi there, just curious about this condition. U don't have to, but would you be able to tell me something about it???
As an epileptic what I personally dislike is when I 'come out' as an epileptic and the first thing they say is 'omg are you OK?'... Well I haven't had a seizure since I opened my mouth a minute ago, so yeah I am doing amazing today
I have focal seizures so I’m always afraid of getting “that wasn’t a seizure, you weren’t even convulsing on the floor!”
Same, i just think to myself " id like to see how you'd handle it" like staying awake during a seizure is an enjoyable experience.
"Ambulances are like irony on wheels" I love that haha
100% Iv been Epileptic all my life and most of these do annoy me 😂
mahala Clarke but the question "the worst place you had a seizure?" Is a great story to tell, if you didn't want to share you could just make a very short copy to tell or tell about another story
fofomoon it's great if that's the persons sense of humour!! Sadly people who have friends like myself who have died from seizures don't always find it a laughing matter
mahala Clarke I haven't had mine for all of my life I had mine since I was 16
I haven't been epileptic all my life they found out when I was 25. But i say the worse place so far for me was the top floor then being in the hospital that sucked
This has made me feel so much better about my epilepsy. I get the "that's not a real disability" all the time and it's very rude/disheartening to be invalidated like that. Knowing that I'm not alone makes me feel better though, so thank you.
I care for people with epilepsy and I've never really heard people say anything like this to them
Someone asked me if I was being controlled by some demon. I told them, ssshhh no one is supposed to know.
Ive had someone flash a light in my face because they didnt believe that im epileptic...
that's awful. is light your trigger?
Me too but light isn't a trigger for me
bluedragon859 who the actual hell would do that?
People who asked these questions you can tell they dont know anyone who has seizures or have them themselves but its a great thing to know so I love these videos because they make explaining a condition so easy to someone
Loved this a member of my family suffers with epilepsy and he's the most amazing thing in the world! Bless you all! 😘😘
Having a dad who is an epileptic and myself,I get asked these questions. It's annoying, please stop asking these questions😐
“Should I turn the flash off?” How is this offensive? If someone doesn’t know about your triggers, it’s a good thing to ask.
Schluben No I’m epileptic and I agree with you.
It’s still rude because what if it’s just a flash light
My life with Epilepsy Eloise People don’t know how photosensitive epilepsy works. It’s better to ask than risk giving them a seizure.
Aimee Loftus But wouldn’t the person tell you if you shouldn’t be watching it because of the flashing lights?
I like when people ask questions about my epilepsy or about how they can help! It really bothers me when I tell people (who know that I have epilepsy) that I just had a seizure recently and they say "awww, ohhhhh!" with a bunch of pity and sadness. I usually have two seizures close together every three weeks. My epilepsy is always there! Why are they acting like it's a new thing?! If they feel that sad then they should react like that every time they see me! "Do you still have epilepsy? No seizure control? Awww! Still sad!" (That would be weird too like it would to react to any person with a long-term disability). It bothers me because it's like people don't understand that epilepsy always affects me, not only after the seizure.
My GP referred me to a neurologist because I've had seizures and body jerks and now disco and flashing lights effect me. Watching the people in this video talk about their experiences, has helped me make sense of my own over the last couple of years. When I get my appointment and results and if it is epilepsy, I hope I will speak about it as confident and as freely as those in this video