I too suffer from epilepsy and those auras can be pretty scary. Mine occur when I get that deja-vu feeling and my body just completely freezes and my brain starts racing with thoughts as if everything you're thinking are repeats of past auras, and that's exactly what they are. Every time, it's the same memories playing in my head of thoughts before going into a seizure. There's been plenty of times where I'm able to fight off going into full-blown seizure mode when the aura occurs depending on how severe the seizure is. It's very important to take your medication every single day. I am human and I do forget to take my medication even though I have an alarm on my phone to remind me. There's times when I'm super busy and before I know it, there's the aura followed by completely blanking out. My last one left my tongue chewed up and super numb where I couldn't even talk. The next day, the numbness would start going away only to get replaced by annoying pain that doesn't let me talk or eat comfortably.
This is the best description I’ve ever heard of how it feels. I was diagnosed when I was 22 and I’m 34 now so it’s been a few years, and some of that time was very unpleasant. Listening to him makes me feel sad and happy at the same time, it’s sad because it’s just such a horrible thing, but it’s nice to hear someone else who deals with the same things, and be able to understand exactly what he means. You do feel alone in a way, even though you know you’re not, when none of your friends have epilepsy it’s hard to try and explain it and in some ways it can be quite embarrassing. Waking up on the floor surrounded by people is not a nice experience. But it’s really good to hear him saying he doesn’t let it rule his life, it makes me realise I don’t have to let it rule mine either.
I have this same grand mal seizure problem. Severity level, back and shoulder problem posture problem the auras and such. I just recently bit the right side little part of my tounge off as well. 😪 and yes the lonely feeling. I feel we should all just start reaching out more like they’re doing here. And try finding more of each other to be around. Environment understanding and such. Comfort just like others do for themselves, where we I believe tend to make the choice to spend more time on others before paying our own self attention.
I'm epileptic It feels like you're being electrocuted and feel like you're vomiting, gasping for breath When I wake, I feel like I have a hangover Literally like I'm learning to walk again
At 3 months old I was diagnosed with epilepsy and attention dificit disorder and intellectual deficit disorder I'm 28 will be 29 on the 13 of October it's been hard with people bullying me about my seizures and them saying I'm faking it and I'm not so it's hard making friends and I understand him a lot
Ive suffered with Temporal Lobe Epilepsy since i was 10yrs old, am now 38. Sometimes focal seizures, sometimes starting as focal seizures and spreading to become Tonic Clonic. Has had such an effect on my life. But, i am NOT giving up and letting it control my life
Such a wonderful and articulate way with words. I just had my first seizure 5 days ago and lost part of my tongue. Even if it doesn’t happen again, this was very comforting. Extremely bizarre and scary stuff - I have nothing but respect and empathy for those with epilepsy. Keep on trucking.
44 years old now and just had another one a couple weeks ago. Had it since a teen but they've spread out over time. The description in this video is pretty spot on. Deja vu and auras suck. Just commenting to say F*** Epilepsy. I know I'm not alone and the best thing I can suggest is don't live in fear. You can't. I have to tell myself that everyday. I'm blessed with so much because I continue to climb the mountain. I don't have them daily , thankfully and my heart goes out to people that have it worse then me. Hopefully my comment helps someone reading this. You're not alone 🤙
I call my “Aura” spicy deja vu, because it’s more intense than regular deja vu. I’ve recently been diagnosed in February with tonic-clonic nocturnal seizures and it’s nice to hear others perspectives to help understand myself. I find it so weird just experiencing the before and after, and being told by others what happened and not even really knowing myself. And afterwards the pain is like being hit by a bus! Thankyou for sharing 💕
I just call mine mad dejavu, ive had them all my life without being diagnosed until 32yo, they got to a stage where i would be able to tell people what's about to happen next, if i was able to communicate during. Ive recently realised i have tonic clonic in my sleep too. Either that or i have reoccurring dreams of riding some crazy horse or something. 😏 haha
@@dazparry1580 I had the spicy deja vu my whole life and thought not much of it, then it started getting worse around the time I developed epilepsy! The worst part of it is I was watching a brand new tv show and was bored bc I felt like I had already watched it and knew everything that was going to happen!! 😭 it’s almost as if you’ve dreamt it all before, it’s weird af 😂
@@josieunderdown3971 ye i know the feeling. Worst thing was trying to explain these things to people when i didnt know what it was. I used to just get 🙁 or 🙄 faces. But sometimes im able to predict things spontaneously without any strange feeling, just point something out before it happens. That gets 😧or 😳 faces.
@@dazparry1580 yeah I get that, i just kept it to myself, I couldn’t think of a way to explain it to people, I literally thought they’d call me crazy! I felt a bit crazy or like I had some weird gift, I didn’t know that others had it! When I tried people were just like 🤷🏼♀️ I get deja vu too.. but it’s not the same 😂
The way he describes it is 100% accurate. I’ve had epilepsy since I was a baby and I used to have absent seizures. Now I have paralysis seizures. Every once in a great while will I have a grand mal seizure. My last known seizure was when I was pregnant and it was scary as hell. They are so exhausting even just the absent ones.
@@susieleong6852 no because the person is unconscious the person will not be able to hear see or feel pain during the seizure but after the seizure is done and the person is recovered they may feel sore tired confused one person described it as though he felt he ran a marathon
I started having Grand Mal seizures in my early 20's and the doctors could not determine what was causing them. I even ended up having brain surgery to remove a large cyst they had found on my temporal lobe, however, the seizures returned shortly after the surgery. Now I was in complete desperation mode, losing hope and tired of feeling like a zombie with all the sedative drugs I was being prescribed. I then realized that God was the only one who could help me and after praying for about 8 months or so, his answer came to me at a 711 convenience store early in morning. I had purchased a coffee and added a non-dairy creamer to it and after only a couple of sips it started to give me my usual pre-seizure warning signal, which was a weird deja vu feeling. I then realized that it had to be something in that creamer since coffee itself had never given me any problems. It was the preservatives in the creamer(since it was non-dairy it required something to preserve it). So, long story short, I no longer eat anything with food preservatives, take no medication of any kind and 30 years later I am still seizure free! I thank God every day for giving me this insight because when I told my medical doctors about my discovery all of them ridiculed me and said that the acids in my stomach would destroy the preservatives. This was apparently not the case and later through my research on food preservatives I also found out that most of them are even carcinogenic. I hope this can possibly help at least one person out there as I know the horrible situation it is to have seizures.
My sister had epilepsy all her life and sadly passed away in 2017 at the age of 47. Like you she motored on every single day living life despite all she was dealing with. I always admired her for that and I admire you for telling your story and not letting epilepsy define you. God Bless
I was born premature weighing 1 pound, and 10 ounces. Because of this I developed retinopathy of prematurity, causing me to lose all of my sight in my right eye, and most of my site in my left. I decided that blindness was not going to define me as an adult however, I developed epilepsy. I took medication that seemed to control it very well for several years until I got Covid two years ago. Now I have tried several medication‘s, the ketogenic diet, and have even considered surgery. I am trying to get to the place where like my blindness I refuse to let my epilepsy define me. Thank you so much for your words of encouragement.
I appreciate you so much. I'm a Mother of a 19 year old with Grand Mal Seizures. My son is none verbal and autistic. You gave me tremendous in-sight into his experience.
It is different for everyone tho. I will say that. My grand mal lead me to losing all memory. I’ve now lost years of memory. My worst feeling is waking in a hospital knowing I’ve a 2 year old at home. Talking about it while the government screws me has me dying inside. I’m sorry I’m ranting but I just need to see it and at least say it out loud once…
One of my friends from back in the day just passed away from injuries sustained during a seizure attack. He was alone at home when it happened, usually he'd feel the seizure coming and take himself to the nearest clinic, but this time it must have hit him when he was asleep and therefore could not preempt it. Rest in Peace Edgar.
The deja vu, the squeezing feeling, the soreness after the seizure. After the soreness, it's exhaustion. Those are what I feel when I get mine. To the people who have helped me, thank you and I'm sorry. I don't mean to be an inconvenience.
You are NEVER an inconvenience. Both of our kids have epilepsy & it’s scary as heck but never have we looked at it as an inconvenience & I know your family doesn’t either. All we want to do is take care of y’all & make sure you’re okay. ❤
I ended up on life support 6 times in last 2 years. Bad seizures I'm allergic to most meds I have violent reactions. It is not fun 😕. My uncle died in a bar from a seizure. I won't give up
My triggers are sleep deprivation and being too hot. The feeling I get before is always deja vu, bad taste or random chills. Gosh I know what he means when he says none of his friends have epilepsy and he wishes he had someone to relate to. This was so well said!
I just had my first seizure yesterday whilst on holiday for my birthday, according to my girlfriend I was out for a minute and a half. I’m still trying to comprehend it and the way I feel about the whole situation today, truly the most terrifying thing I’ve been through and I’m scared of it happening again. I don’t really recall much other than darkness so even though I’m exhausted going to sleep scares me.
How are you doing, now? I just had my first one while on an international flight, but thankfully still close to Japan. I felt awful for inconveniencing my best friends, who insisted they stay with me, and an entire flight. Though I know my friends do not feel inconvenienced but rather they are truly just glad I am okay. I hope you’re well x
The darkness will set you free. I experienced that darkness through both meditation and psychedelics, it’s something worth exploring. I used to be so scared until my last seizure when I truly recognized that I wasn’t the one having the seizure, I was the one experiencing my body having the seizure. After this seizure, my life turned around and many things clicked that hadn’t before.
@@mizzmayhem3685 Despite taking keppra meds, I have been having occasional absence seizures for 8 years. The trigger is frequently - being in a strange or unfamiliar situation, or travelling abroad. Three times I have had one while on a plane, it’s as if my heightened state of expectation spirals into a meltdown. I haven’t stopped travelling though, I just expect the worst, then am pleasantly surprised if it doesn’t happen.
The way he describes this in detail & how he explains everything so peacefully & enthusiastically is from someone who really suffers from it & I appreciate these kinds of videos.
This video has helped me understand what my 2 year old goes through when he has a seizure. I would love to see a video on here on the parent perspective of raising a child with Epilepsy. I often feel alone in my journey to raise him and make sure he’s well while dealing with the overwhelming emotions I feel myself while seeing him deal with this
Hey Bianca, there is a Facebook group for support you could join, lots of parents on there, in fact it was created by a parent of a child with seizures. facebook.com/atkinsforseizures/groups/ hope that helps some.
Big storm in the brain. Perfect description. I began having tonic clonic at 16. I have been seizure-free for over 20 years with medication. This video is spot on.
i didn’t have the smells or sounds he described as an aura before, i just saw “cartoons” and a couple seconds would feel like 10min-1hr, with extreme confusion
I started having tonic clonic seizures a little over 2 years ago after I recovered from a brain aneurysm and comments like this always make me feel better and gives me hope I will find the right meds and I'll stop having seizures some day. I had my most recent 2 nights ago, I was lucky I was with my parents and my dad recorded it to send to my specialist and it's crazy! I had no idea what they looked like, from my perspectice I just tense up a but then pass out
Hi Please can you tell what meds you take, that have you seizure free for 20 years? I’ve been on a few different ones over 9 years, but only achieved 10 weeks max without a relapse. 🙏🏻
I have epilepsy been recently diagnosed in November 2023 at the age of 25. Whatever you have said is bang on. I have tonic clonic seizures. My ones start off as focal and can spread into the tonic clonic, so every time I get a feeling of a focal seizure, I don't know whether it will spread into a tonic clonic or not. When a focal seizure is about to come on, I get a feeling of it and know it's coming. I know you said that you don't think, 'what if I have a seizure here and what will these people think if I have one', but that is exactly what I think. I need to get rid of those thoughts but I just can't. Thank you for this video, helps me feel I'm not alone. I feel like my life is on pause. Can't do all the usual things I used to do. Currently can't enjoy life until seizures are controlled. Memory loss is a big thing that I'm suffering from. I've forgot a lot of events that has happened in my life, forgot how to do activities and forgot passwords. After my tonic clonic seizures, apparently I get extremely aggressive. I start to walk and keep falling to the floor. I start to cry and shout. But at this point I'm still unconscious and my body is acting on its own accord.
I love this video because he makes me feel not alone. I got diagnosed with epilepsy when I was 13 years old and I'm 23 now. I have grand mal seizures as well. Today I had a seizure, experiencing the feeling of deja vu, pacing around my apartment, and feeling light headed a few minutes before. After my seizure I woke up in bed exhausted, bite on my tongue, and no memory of what happened or how I even got on my bed. How he doesn't let epilepsy define him is inspiring to me
I had seizures as a child and luckily had surgery that cured it. I am just in shock by his description of the feeling before having a seizure as a “déjà vu.” That is SPOT ON! Wow!!! There is no way I could have described it as such when I was 8-9 years old, but that is exactly right!
LaraD He’s explaining from his own experience. All of the videos are people explaining from their own personal experience. Of course one person’s is not going to define/match everyone else’s.
Whoah..... so i had a seizure a few times and didnt know rhere were multiple kinds. The past 6 weeks i had 2 and this was the first time i feel and bit my tougne and had body aches. The ones where i got deja vu in the past .. i remember pausing and having intense memories out of no where... i feel alil dizzy and then i sit and wait for it to pass.
I was on Tegretol throughout my childhood for brain seizures. We stopped it when I hit adolescence. Starting in my 20s, I would have episodes of temporary amnesia, which I never mentioned to anyone because I didn't think anybody would understand me. I had an incident last November, which I described to somebody, and she told me it sounded like a seizure, so I started talking to doctors. I was just diagnosed a couple weeks ago with complex partial seizures. I, like Patrick, feel alone and would love to meet other people with whom I could share experiences. I'm in New York, and the closest Epilepsy Foundation is in Maryland. It is lonely, and I would love to meet other people who understand me.
Read Mark Chapter 9. Siezures are curable. Genuinely Give your life to Jesus Christ. I adopted a homeless epileptic with an autistism. EPILEPSY is a demonic attack. Doctors dont believe so because they will loose patients. Ask Jesus Christ to come into your heart to be your personal savior. Attend a non denominational bible study and learn about Jesus Christ.
The first time I had a seizure I thought it was from the heat. The next time I had one was in my sleep. I remember coming to and looking around and seeing a look of horror on my girlfriends face and all my friends in my room. My first thought was like, it's 3 AM get out of my room. Then everyone told me I had a seizure and that I need to go to the hospital. After the 5th time I would know what happened with in about 2-3 minutes of waking up. If it's a particularly violent one, if I hit my head on a floor or something for example, I noticed my cognitive functions were a little slower. Reaction times slower, comprehending situations was slower. My memory isn't that great either. By far the scariest was having one while I was asleep purely from the surprise aspect of it even though having a seizure in bed is one of the safest places to have a seizure.
I’m glad he at least said that the “aura” is different for each person. But it is actually a seizure in itself, a simple focal, old name simple partial. And I’m surprised to hear grand mal, I didn’t know people even said that anymore nowadays, instead of tonic clonic. This whole thing should be prefaced with the fact that this is all very different for everyone. And what you described is very different to my seizures.
@@dhines7892 HI I SMELL LICORICE! sorry for yelling but im just looking for answers personally. i started having “spells” where i get dizzy and my body tenses up and i have deja vu about what feels like a dream. i smell something bad or usually black licorice (which is also bad). it feels like an out of body experience because even though i know generally whats happening on the outside, i feel like i cant tune back in. I’ve been debating seeing a GP after asking some other professionals that dont have answers for me. I dont mean to infodump about my life recently, but i feel really validated in just reading your comment. I feel more seen, so thank you for sharing
I've had two seizures once when I was 20 and again at 21 My seizures tend to be audio based. when I hear a certain frequency or sound my ears start ringing and I slowly lose control of my body. My eyes fade to black and when I wake up I feel disoriented, tired and confused. I'm currently 22 and thankfully the medicine I take prevents them from happening.
This video and these comments are relatable. My now 40 year old daughter has had major seizures for about 10 or 11 years now. Sometimes 2 minutes long, sometimes 7 or 8. She had to surrender her driver license and has 2 weeks peace sometimes. Initially she was having like 5 a day. Now its mostly only one or two a day, usually 1 to 2 weeks apart. She does take several meds and they help somewhat. She does live with us for the past 8 or 9 years, pretty hard to be independent! Everyone here be blessed.
Every person who has episodes/seizures are different, but there is definitely much I can practically relate to here. Thank you, for talking about this!
My first and last seizure o was out for 20mins I couldn't walk for a week and lost my memory it's taken me a long time to get back to normal. It's been horrendous. I describe it as a computer rebooting, you do get back to normal We're all different just take your time.
You nailed it that’s how I felt before I had a seizure I had grand mal seizures for about 15 years and now I don’t have them anymore and just all I can say is hang in there and it sounds like you’re living a pretty good life
Im thankful for this video. I got recently diagnosed with epilepsy as well… Having a hard time to cope up with it but im so grateful that u shared your experience.. i really admire your courage to speak up for it
I had my first seizure on a plane when I was 11. The sheer confusion I felt when in my eyes I was falling asleep one minute and waking up in a hospital the next was insane.
I was diagnoised over 14 years ago and those auras are dead on but i also cry and get dizzy and can't walk. Lately I've been having several auras monthly and some result in a seizure others dont but my neuro told me they're actually seizures. That's scary to find out I'm having more seizures than i thought. I also have gran-mal and my after seizure effects are way worse than what he described. Eveeyone is different though. I would like to speak to him. He seems down to earth and is always nice to talk to people who know and feel what it's like to deal with seizures
I’m 22 and I just got diagnosed with Epilepsy a week n half ago. I don’t remember 3 days out of the week. Woke up at the hospital asking my family why do they all look so worried not noticing I’m the one in the hospital bed. I don’t know what to expect. I’m still sore still got a headache. Everything feels so off almost like I’m in a dream
The same just happened to me waking up in a hospital bed all bruised up and confused can't remember anything from that Wednesday it happened or Thursday
@@Kwame92. It’s been 7 months for me still don’t remember anything from it. It’s rough. Haven’t had any seizures since then but on a bunch of medication.
I SO agree about HATING when I feel the deja vu coming on!?!?! I used to love when I’d get a deja vu! But that was before my stupid seizures!?!?! Now… ugh… I dread it.
I'll be 40 in November and I've had epilepsy for about 7 years. I had a TBI on August 9th 2007. I was expected to die and if not, not fully functional. After the surgery and my consciousness came back enough, the neurologist put me on Dilantin for precautionary measures because it's not necessarily common, but happens enough to notice with people that had a TBI. Especially a bad one. It made me feel like crap so i asked to be taken off of it and i was fine for about 9 years. Suddenly one evening after i got home from work, i was watching TV and next thing i know, I'm in an ambulance. No aura or anything. So i was diagnosed with epilepsy, my TBI making the most sense to be the cause of. For the next 5 years i had 15 total including the initial one. I've finally found a good neurologist and the proper medication and dosage(300 mg of lamotrigine twice a day) I've never had an aura leading up to one and i only remember right before it happened two times. I always turned to my right when i had them (i don't know if that's coincidence because my brain injury was initially on the right side) Because of that, if I'm looking for something and i turn to my right more than once i get super anxious with my first thought being about me having one. I've had deja vu situations also that do the same thing. I have grand mals as well and they usually last for about three minutes. My entire body stiffens for a little bit and then goes to the violent muscle jerks. I'm sore for about a week, give or take, after the seizure. Thank God I'll be serious free for two years in a month 🙏🏻
I love how he lives his life! I hope one day I will reach that level of confidence to live a full life without a fear of getting a seizure ❤ You are a real inspiration
I had a gran mal yesterday I fell And now my bf says he was worried I sustained spinal injury which I didn’t I realize I have to go to the er now because I’m walking like a Forrest Gump o braces
It’s shocked to hear all it’s information, you even know when it’s coming, you even know what type you have.. 😢 I just lost a sister this year 17th May. I wish she got this opportunity to hear all this information. It’s wisdom
I don't get an aura.. but I'm not even sure what type of epilepsy I have. One day it's the tonic clonic, the next day it could be just not being able to speak. This shit scares me.. Neurologys diagnosed me w/ gelastic epilepsy but something tells me that isn't right..
Man, when people ask me what happens to me when I am seizing. I tell them, I am in the world between worlds. " Dead " or i guess that in between space and time or the hyper NOW. Sometimes I see peoples faces from another life time. " Wait , I know her, or wait omg I remember that!" I also can HEAR the people around me, " dont touch him! " Saddly, I hardly remember anything for a few hours, or it hurts to much to think to try to remember. And I am in so much pain, head ache, stomache nausua, FEAR, doom and gloom, panic, scared of losing out money from work. Paranoia and worry in " HOW AM I SUPPOSE TO WORK AND PAY MY BILLS WHEN EVER I GET A SEIZURE I CANT EVEN WORK FOR A FEW DAYS. "
i have epilepsy with grand mal seizures so this is the best description of grand mal epilepsy. i could never explain how my seizures went and this guy put it in the best way. everyone is different when it comes to epilepsy
I have just been diagnosed with it, i have all the full blown tonic seizures and what not, and it's good to hear it explained this way. Thank you 🙏 i feel like it goves me slight psychosis when i have my episodes, its scary.
I also have epilepsy also known as a seizure disorder here is my story When I was a baby I had a febrile seizure I stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived I stopped seizing. As i grew from baby to toddler my parents began to see that i was delayed. So i started early intervention at 3 years old I had occupational therapy and PT . In pre k I would get angry and punch any thing that was in front of me after my parents had been observing me in a pre k class and talking to the pre k teachers it was suggested that my parents should take me to a therapist to rule out any behavior issues. he took one look at me and said that I was having seizures he then referred me to a neurologist. At the at the age of 5, I was diagnosed with childhood absence epilepsy but I have been seizure free since the age of thirteen. And so was taken of meds which caused massive weight gain a hand tremor and memory loss. The point is meds are good up until a point and then it becomes a pill, no pun intended. My triggers are flashing lights, the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. When i had an absent my pupils will go from normal to pin point that is the only physical sign the eye can lasts My seizures last one second and happened every minute to every minute and a half. So there are 60 seconds in a minute and 24 hours in a day then I was having seizures every 1440 minutes or 86400 seconds so in total I would have 86400 seizures per day with meds. my parents were told to treat me as a normal child and to see how fare I would develop and look at me now I have graduated high school with honors . I am in collage as you can infer I was not expected to do much of what I just mentioned The effects of my seizures is that I have Aspie like tendencies due to my epilepsy which I know is difficult to understand to put it in simple terms as a result of my seizures my brain compensated and rewired itself i also have severe in Processing disorder Perceptual Reasoning, and Working Memory, Coordination,Dexterity, Fine and gross Motor Skills, Hand Strength, Visual Perceptual Skills. When was 19, my father died, and it seems I have had a relapse if that is possible.I still have my absence seizure but it is not enough to put me on meds. When I was thirteen I had my last EEG and my seizures showed up as misfired neurons not seizure activity per say and the Dr. called them “flurries", so here is what my flurries are typically like: I will become very spacey, I can not interact with my surroundings, I also felt locked in to place. I am completely aware, my vision becomes like a tunnel, and thing start to move or vibrate on their own.
I've had a similar form of epilepsy ever since I've been 16 years old. I'm 22 now and granted while I do get seizures every now and then...I've learned to live with it.
Had another Grand Mal yesterday, first one ever in the bath and lucky I wasn't alone in the room. My tongue is raw with so many bites, feeling all these little bits barely holding on the sides, both red/dark raw cuts brushing against my teeth and cheeks, it's a nightmare every time.
I found this on accident and I don’t like to talk about my epilepsy but I’m glad someone can talk about it, grandmal seizures have affected me it’s made me depressed and it’s making me have memory loss bc of how many times I’ve hit my head and I used to be active not anymore I don’t feel like the same kid I used to be I feel like my old self died and isn’t gonna come back, If you have seizures and are depressed don’t be me talk to someone please
ayye bro i got the same seizure too. Avoid sleep deprivation and think positive all the time, no matter how bad rhe situation gets. having a mild seizure? calm yourself down and be like okay yeah i got seizure. Gonna be fine in a minute. acceptance is a HUGE thing in controlling or reducing the frequency of epilepsy. work out
I have epilepsy seizures too. I also wish there was a cure for epilepsy. One of the seizures I have is I fall down and shake and saliva comes out. The most ones I get is my body goes out. I mostly dont know when it comes.
How do you drive??? I have wrecked 2 cars...I never know when it's going to happen..but he just described the way it feels like.the dijvu started years before I had my first seizure
A member of my family never had a seizure their whole life, and has had THREE this year. I read somewhere that prescription medication can be the cause. The first one was scary, my mom ran up to me and told me they were "mumbling about something", almost like they were dreaming, and weren't making any sense. I gave them a sip of their favorite water, and it was like flicking-on a switch, they came right back! About 2 mos later, they were sleeping in the kitchen and started SHAKING really badly!! Then I calmed them down, gave their favorite water, again--normal. The most recent one was only last week, and was by-far the most-scary. Lots of blood out of mouth and on front of shirt, no language, no SOUNDS, but could see eye movement when I moved my finger. I called the EMT, and Thank God they weren't fearful and just casually said "Seizure? Yeah, Seizure." I must admit it gave me a sense of comfort to see how 'casual' they were being about it. About 1 hour later, we got to see my family member in the recovery room at hospital, and they are like "HEY GUYS, THERE YOU ARE!" We were so relieved since I thought for sure he would be sleeping, but it was like nothing happened! Thank God
i have had epilepsy since i was 3 years old. Its not always the pain of dealing with the seizure that is difficult, but the emotional toll and experiences that it it takes on you and the people around you. Adapting your life is not always easy but it can and will benefit more then just you when you put in the time and effort. Seizures are traumatic and painful and i have found the best way to avoid them or prevent them is by doing the best we can try stay stress free and also stay healthy on a daily basis. We have solutions and we all have the ability to do what’s best for us :)
It's a really bizarre feeling waking up after a seizure, the first couple of times it took me hours to convince myself that I wasn't dreaming and accept that I was in fact lying in a hospital bed.
I had my first seizures today around 6:15 am a if it had been any later I would’ve been driving on my way to work.. so blessed and thankful good kept me
thelouquefamily7405 Hope everything is ok! You should check your glucose/sugar levels. You can have seizures because low glucose levels. Ask you Dr for a 3 hours glucose and insulin check. 👍
My precious daughter just had her first seizure. I HATE THEM!!!! She had the second/third one (2 back to back) at work, that was a fear of hers, to have it away from her wonderful husband and me, her Mom. But her boss and co-workers were wonderful and did everything right, thank God! I said all this to let you know, she too is worned before they happen. Her Mother in law told us that there's a Nasal spray that her son uses right before. He's going to have a seizure, and it prevents him from having a seizure, so we will be going. To the doctor on Tuesday and that something we'll be looking into.I don't know if you've ever heard of that? For us, that seems hopeful! Thank the Lord! God bless you on your journey...my daughter too, I've told her she must be courageous and with the Lord by her side, take one day at a time...don't let this govern your life!☝🏼🙏
First seizure: had a bad migraine for 2 days, then a tonic seizure that lasted for minutes (but felt like for ever), with a pulsation feeling in my head that was painful. Second seizure: had a sense of dread and utter fear and sadness for 2 hours, then felt like something squeezed my consciousness, and I started getting weaker and weaker where It was hard to hold my head on my shoulders. Then it stopped and I felt drained and my limbs were slightly floppy.
I have epilepsy too. I have 2 diff’t auras before having a seizure. Either a discomfort in my stomach telling me to immediately go to the bathroom. Or, if I’m reading something, I could have a difficultly reading & can’t seem to focus on what I’m reading. When I feel it the discomfort in my stomach, I know I’m fixing to have a seizure & go straight to the bathroom & then straight my room to lay down. If that aura is that I can’t seem to focus on anything, I just head to my room & lay down. My seizures are mainly petit mal, the kind where I usually back out for a few mins. Very rarely I have grand-mal seizures. Sometimes I black out & still continue doing something. Most of the time, during those black out seizures, my brain sees it as a habit to go to my room. If seizure comes without a warning, & I’m by myself, I still black out & come to reality laying on my bed. Praise God, I rarely fall or hurt myself. He looked out that if I’m outside or am about to have a seizure, but someone’s nearby, they can whisper into my ear to go lay down & I manage to listen.
I don't understand this, I've heard something similar from someone else that has seizures but when I have mine I never know they are coming or that they even happened. I also lose huge chunks of time before or after a seizure and I don't know why it's so different for me.
The same thing happens to me when I have seizures. You aren't alone, it is frustrating when we have no aura and just wake up after with no recollection of what just happened.
I’m 33 as of this month this is exactly what I go through the tightness,smells,fear feeling, the tiredness, I broke my tooth before I knew it was a seizure. I have been diagnosed as of this year took me on a roller coaster it wasn’t until my second major episode did it all come to light for me. It’s still hard to explain but I’m learning this video really spoke to the side I feel is so hard to communicate what is happening
I’m new to seizures. I’m 37 single dad to a 6 year old. It’s been very scary would love to speak to you. I have tonic clonic seizure (grand mal). Hopeless is how I feel
Wow this is crazy because I’ve been diagnosed with epilepsy since 1988 when I was born in August of that year and to this day it still scares me because I never want to terrify my niece and nephew if they witness me having a seizure.
We’re in the same boat I had a gm in front of my niece and two nephews My niece went off crying and my nephews apparently just stared at me with their mouths open
Unfortunately epilepsy isn't considered a disability. It's a disease. I have photosensitive epilepsy and i have grand mal seizures. I wish i had like a tell before it happens. I have nothing, just happens, and when i come to, i don't remember anything before it happened at all.
Im 19 and have had 4 tonic clonic seizures in under two months (3 in my first day!) I'm trying to learn more about it. Ive gotten some new issues since this diagnosis (mostly memory issues post seizure) so thank you sm for the video ! :-3 I also have tourettes since I was 9 or 10 i have a big heavy feeling its related
Hi, Thanks for sharing this. What you described it's almost identical to my experiences. I've unfortunately broken bones. Severely bitten my tongue like you have,also on the right,every time. When I come to, totally exhausted, every muscle, fibre and joint is extremely painful. I feel like every tooth in my mouth is loose and about to fall out. So I feel your pain and sympathise. The mediation I take now certainly helps enormously. I, like you, don't allow this condition to dictate my life. Keep well and stay safe.
I am so thankful that I have no memory of my seizures. People tell me what happens to me, but it's as if they're describing someone else. I don't even notice the difference between the start and the end, like a difference in location. It's very odd. The only memory I have is a flash of memory from a postictal confusion after a seizure when I was ripping down the wooden blind in my room. Apparently I trashed my room 🙄. One time I was staying with my parents and I walked downstairs, got milk out of the fridge, went over to a plant and 'watered' it with milk 😄 All controlled now with Carbamazepine, but I still have a crappy memory Seizures are different for different people. I can't imagine having the seizures that guy has
Best way to describe a post seizure to someone who’s never had one I tell em imagine your worst drunk night out then some guys decided to jump you after and now your coming to that’s what it feels like I can’t even tell you the horror I feel everyday everytime I have an aura some nights I don’t even sleep out of fear but I’m the most free spirited man you’ll ever meet I do martial arts I spearfish things no normal person normally does not to mention what I do my support group loves me kinda thinks I’m a little crazy but I’m their “athletic” representative of the association and I’m damn proud if I die from a seizure while doing what I’ll love I’ll say it now like I’ve said it before I’d rather die in the ring or in the ocean then at home in fear besides I always have people with me who I train myself or I know are epilepsy trained
My son is 29 and has had it for 15 years. Normal in every way but lives with us so not alone at night. People say terrible things about him living with us that make me cry.
I'm 28. Got diagnosed at the beginning of the pandemic, a year after a bad skull fracture. I've been staying with my Mom again for the past couple of months. Going to move in with my Dad when he finally gets a place down here. Everyone in my life has been nothing but supportive of me doing so, I'm really sorry to hear that there are people around you who are so insensitive ..😔 One of my best friends is bipolar and has been having the occasional psychosis since he was a teenager. He's 30 and still lives with his Mom and Dad, there's no shame in it.
Thank you for this video I’ve been with epilepsy for 5 years it’s so stressful I get Ora’s as well im so scared because I never know what’s going to happen. It’s difficult explaining to people around you what it feels like but this video helped me when telling others how I feel.
@@babyscarr3 wow that is crazy . Definitely just avoid stressing yourself out and speak with your neurologist and see what medicine can help control any episodes. I wish you the bedt
Talking about epilepsy, calms the fear from it. I had 4 grand mal seizures and hundreds of little ones, but after 36 years with it, the last 3 years has been controlled, as I stopped taking medicines, avoided TV screens, crowds and spend time in nature with animals. When the sense arrives, I now only sit down and embrace it and breath deeply to let it happen. I accept epilepsy as a gift, that it is not understood. When it happens, I have no concept of time and cannot feel my body, but I do go into a multi coloured tunnel... so why be afraid of it. The last few have been lovely, with no spasms and no black outs, just overwhelming information that I allow it to come to me and then pass.
Right I've had like 20ish seizures in 4 years one of them was eight minutes ive probally had 7 or 8 big seizures in my life. Still working on controlling them.
@@snakyYT The key is to avoid that fear. Fear is in the mind and when it doesn't understand it, it panics and that loses control of the body. I learned this from an arranged Quantum Hypnosis session, which means, I was fully awake and I allowed a physical seizure to happen. My left brain is now asleep, but my right brain is awake and observes the shakes happen from my neck all the way down to me feet. It lasted about 20 minutes, and my body was quite cold, but I spoke to the therapist, what I was feeling and tapped into what causes it. It was mostly be feelings, of hundreds or mini little fears from childhood, that are still there in my body, not said or explained. As soon I knew what my little fears were, I know smile and just allow them to pass through me and not effect my mind. It really is a matter of taking ones own responsibility that 'we' are in charge of ourselves, thinking epilepsy is a foreign illness causes more fear.
@@frankmuldowney7839 thank you. I have been having aura and I stated taking deep breaths and try and stay calm. I theorize that doing this will limit the severity of the seizure as I am calm and am only focusing on breathing instead of the buzzing of my head.
@@snakyYT That's excellent. Focus on breathing controls everything, noise, people etc... If you ever keep note of Tolle's famous quote ''What is my next thought?'' and I use that method a lot, to allow hundreds of thoughts pass by, as they are 'not' mine. Overload of thoughts create seizures, when you think they are yours but they are not. I just breath and observe those thoughts and let them happen, like watching dozens of movie screen, yet you are not in any of them.
Can someone help me. I’m trying to drive and need a approval from my neurologist but they say my doctor is supposed to sign it and my doctor says my neurologist is supposed to sign it. I don’t know who’s supposed to or not I’m trying to get on with my life with independence and it’s hard
I **"disagre"** that there is "NO FIX" i started having this type of seizures back in 1996 when i was 12yrs....i struggled with it through my teenage years. In 2002 i was introduced to new medication, daily tablets...and after 1year, believe me or not, i have NEVER HAD A SEIZURE SINCE THEN....i still took the medication till 2006 and stopped without even consulting my doctor...still have NEVER HAD A SEIZURE since then....i always thank God for the doctors and the meds I got...it was humiliating going through teenage years, being stigmatized and made fun of....i am grateful i got cured.
I'm 23 I was diagnosed with epilepsy 2 years ago , this just told my experience exactly on point. Had my last eps 3 weeks ago and broke my jaw , I honestly thought no one will have the experiences that I went through but I was wrong .
My aura is what I call a feeling. It's kinda like a tingling and pins of needles. This dude has described what it's like mine. I shaki bite my tongue eyes role back. I hear a buzzing in my head during one and I think mom dad help uhhh. After the seizure I can't walk well I have trouble talking and a massive headache. This video is really helpful foe me as even though I had them for 4 years they still scare me. Thanks for this video it really helps
There are over 40 different types of seizures. We all experience them differently. I have 6 different types of epileptic seizures and non epileptic seizures. From my personal experience, the ones I hate the most are recovering from complex partial seizures. The recovery time is 2-6 hours and I lose total loss of communication during the full length of recovery. Even the phrase that repeats in my mind is garbled. I can’t understand anything I read, anything said to me, anything I try to say or write is garbled, it makes so sense. I’m fully aware during recovery and able to do things. It’s just frustrating that I have my own foreign language while I wait for my brain to recover. I find these worse than a secondary grand mal (when one type of seizure spreads and turns into a grand mal). Waking up tired and sore is easier in my opinion. C’est la vie
I do have epilepsy since 2003, it's been almost 18 yrs now. And being a woman, it's way more complicated for me. I'm 31 yrs old n got married the last year. I wish to conceive and my neurologist adviced me to change my usual anti-epileptic drugs, the ones I've been consuming since almost 18 yrs now, as they can be dangerous for an unborn baby. I followed his advice and replaced the drugs with a lower power drugs. But since then, I very frequently have seizures, almost every 3 days. Earlier, it used to be once in a year, with the high power medicines. And since, i'm an Indian, joined family is although, unbearable n stress causing yet a non negotiable part of Indian culture. Mockery, bitching, creating misunderstandings between the newly married couples, lack of privacy, husband turning less of a hubby n more of a mumma's boy, work load r all cons of joined family causing huge stress to an epileptic patient n wanna be a mom like me. And unfortunately I'm not a submissive lady by nature. I have, inspite living in India, been brought up with all the freedom so am quite rebellious to the typical Indian family settings affecting my relationship with my family oriented husband. I so wish that I can convince him to move out separately atleast for my mental n physical health but he doesn't have enough affection for me as compared to his family to move away for my sake nor I want to divorce him.
I was diagnosed after a pretty traumatic part of my life and my bad decisions that I took that led me to my epilepsy but it still is undiagnosed in where the issue is but man I feel the pain in your voice it’s almost impossible for me to open up because it’s so embarrassing having seizures and the shame it leaves you in afterwards
I was about 4 years old when I had my first seizure. It would start out like a numbing sensation on the right of the body and stiffen up to like stone just before I had the seizure I would grab my right arm to try to hold it down. I would very lucky if I could go a whole day without a seizure. When I was 17 I had an operation to help control my seizures. I went from 1 seizure a day 1 seizure every 3 months. Over time I discovered seeing things flashing like lights or scenes on tv 3 times a second of faster it would trigger a seizure. And now before I have a seizure a get a nervous twitch sensation in my head, which gives enough time to sit myself on the floor ground. After having seizures for 50 years I know what to away from and because of this I have not had a seizure over 2 years.
I would have sort of a daja vu feeling but also my mouth would start feeling numb and tingly. I think actually the dumb feeling came first, and so that feeling gave me sort of a daja vu feeling, and I knew what was coming. Apparently I had some kind of rare childhood seizures (was never diagnosed with epilepsy). But even though they spontaneously went away as I grew up (at about age 11), whenever I get any sort of tingling or numbness in my face or mouth I get this feeling of dread - like, oh, are my seizures coming back? What do I do if I really do have one now? (it's been 27 years since the last one). It's terrifying when I'm driving. I feel bad for those who have to deal with seizures their whole lives, because even from experiencing them for a few years in my life, they still haunt me.
My family and I are so sorry for your experiences, fears and trauma. I've lost so much and my family has been through this crazier and crazier experience since I had an accident in 2018. We absolutely understand your fear and the fact that you have struggled, your word's are as strong as the person you are 💜
Mine is deja vu, extreme fear, losing all sense of language (reading, speaking, listening, reading) and then I black out. I never remember the falling over or the getting back up and someone has to tell me what happened. A couple hours later I'll remember the aura and what I was doing when it happened.
I have epilepsy. I don’t think about it. I am now retired. I will not report I have epilepsy if I go back to work. Should I? I have been seizure free for one year. I am told by my neurologist I can get off my medications in 2025 if I go seizure free and the EEG test is ok.
I have had epilepsy for the past 10 years...I have had seizures up to the point where I have fallen in a drain, bathroom on the ground and on a stove where i got a nasty burn...All this has happen while i am on my medication...But one thing i have noticed is you really get an aura or an out of body sensation ...Its really creepy because u can see or know whats is going on but cannot control it..This has me feeling depressed to the point of taking my life .....But you have to be persistent...All the best for you others stay safe..
I too suffer from epilepsy and those auras can be pretty scary. Mine occur when I get that deja-vu feeling and my body just completely freezes and my brain starts racing with thoughts as if everything you're thinking are repeats of past auras, and that's exactly what they are. Every time, it's the same memories playing in my head of thoughts before going into a seizure. There's been plenty of times where I'm able to fight off going into full-blown seizure mode when the aura occurs depending on how severe the seizure is. It's very important to take your medication every single day. I am human and I do forget to take my medication even though I have an alarm on my phone to remind me. There's times when I'm super busy and before I know it, there's the aura followed by completely blanking out. My last one left my tongue chewed up and super numb where I couldn't even talk. The next day, the numbness would start going away only to get replaced by annoying pain that doesn't let me talk or eat comfortably.
i don’t even know this guy but i feel like it’s just him & i sitting and talking about our seizures. i truly love this video
So do i.
This is the best description I’ve ever heard of how it feels. I was diagnosed when I was 22 and I’m 34 now so it’s been a few years, and some of that time was very unpleasant. Listening to him makes me feel sad and happy at the same time, it’s sad because it’s just such a horrible thing, but it’s nice to hear someone else who deals with the same things, and be able to understand exactly what he means. You do feel alone in a way, even though you know you’re not, when none of your friends have epilepsy it’s hard to try and explain it and in some ways it can be quite embarrassing. Waking up on the floor surrounded by people is not a nice experience. But it’s really good to hear him saying he doesn’t let it rule his life, it makes me realise I don’t have to let it rule mine either.
Gabbapentin is saving my life
I have this same grand mal seizure problem. Severity level, back and shoulder problem posture problem the auras and such. I just recently bit the right side little part of my tounge off as well. 😪 and yes the lonely feeling. I feel we should all just start reaching out more like they’re doing here. And try finding more of each other to be around. Environment understanding and such. Comfort just like others do for themselves, where we I believe tend to make the choice to spend more time on others before paying our own self attention.
God bless you
I'm epileptic
It feels like you're being electrocuted and feel like you're vomiting, gasping for breath
When I wake, I feel like I have a hangover
Literally like I'm learning to walk again
At 3 months old I was diagnosed with epilepsy and attention dificit disorder and intellectual deficit disorder I'm 28 will be 29 on the 13 of October it's been hard with people bullying me about my seizures and them saying I'm faking it and I'm not so it's hard making friends and I understand him a lot
Ive suffered with Temporal Lobe Epilepsy since i was 10yrs old, am now 38. Sometimes focal seizures, sometimes starting as focal seizures and spreading to become Tonic Clonic.
Has had such an effect on my life.
But, i am NOT giving up and letting it control my life
I was diagnosed 20 years ago now
Such a wonderful and articulate way with words. I just had my first seizure 5 days ago and lost part of my tongue. Even if it doesn’t happen again, this was very comforting. Extremely bizarre and scary stuff - I have nothing but respect and empathy for those with epilepsy. Keep on trucking.
44 years old now and just had another one a couple weeks ago. Had it since a teen but they've spread out over time. The description in this video is pretty spot on. Deja vu and auras suck. Just commenting to say F*** Epilepsy. I know I'm not alone and the best thing I can suggest is don't live in fear. You can't. I have to tell myself that everyday. I'm blessed with so much because I continue to climb the mountain. I don't have them daily , thankfully and my heart goes out to people that have it worse then me. Hopefully my comment helps someone reading this. You're not alone 🤙
Thanks 😊
@@blackParrot9615ditto!
Were you prescribed Keppra?
My brother getting seizures since more than two months 😢 pray for him
“Im not alone” this guy knows exactly how to put it to words. Thank you so much
He seems like a very nice man wish him good health.
Me too
This channel is about to blow up
….when?
Sadly it didn't
I'm seeing this 3 years after this was made. I hope the best for you. I pray your seizures stop immediately and your life is blessed beyond measure ❤️
I call my “Aura” spicy deja vu, because it’s more intense than regular deja vu. I’ve recently been diagnosed in February with tonic-clonic nocturnal seizures and it’s nice to hear others perspectives to help understand myself. I find it so weird just experiencing the before and after, and being told by others what happened and not even really knowing myself. And afterwards the pain is like being hit by a bus! Thankyou for sharing 💕
I just call mine mad dejavu, ive had them all my life without being diagnosed until 32yo, they got to a stage where i would be able to tell people what's about to happen next, if i was able to communicate during. Ive recently realised i have tonic clonic in my sleep too. Either that or i have reoccurring dreams of riding some crazy horse or something. 😏 haha
Biting my tongue is the worst.
@@dazparry1580 I had the spicy deja vu my whole life and thought not much of it, then it started getting worse around the time I developed epilepsy! The worst part of it is I was watching a brand new tv show and was bored bc I felt like I had already watched it and knew everything that was going to happen!! 😭 it’s almost as if you’ve dreamt it all before, it’s weird af 😂
@@josieunderdown3971 ye i know the feeling. Worst thing was trying to explain these things to people when i didnt know what it was. I used to just get 🙁 or 🙄 faces. But sometimes im able to predict things spontaneously without any strange feeling, just point something out before it happens. That gets 😧or 😳 faces.
@@dazparry1580 yeah I get that, i just kept it to myself, I couldn’t think of a way to explain it to people, I literally thought they’d call me crazy! I felt a bit crazy or like I had some weird gift, I didn’t know that others had it! When I tried people were just like 🤷🏼♀️ I get deja vu too.. but it’s not the same 😂
The way he describes it is 100% accurate. I’ve had epilepsy since I was a baby and I used to have absent seizures. Now I have paralysis seizures. Every once in a great while will I have a grand mal seizure. My last known seizure was when I was pregnant and it was scary as hell. They are so exhausting even just the absent ones.
do seizures hurt?
@@susieleong6852 no because the person is unconscious the person will not be able to hear see or feel pain during the seizure but after the seizure is done and the person is recovered they may feel sore tired confused one person described it as though he felt he ran a marathon
Some people feel pain. I certainly do after I have had some.
My son's gf has seizures she screams n gets violent before a seizure is this normal .
Is there medicine to stop seizures? N can everyone take it .
I started having Grand Mal seizures in my early 20's and the doctors could not determine what was causing them. I even ended up having brain surgery to remove a large cyst they had found on my temporal lobe, however, the seizures returned shortly after the surgery. Now I was in complete desperation mode, losing hope and tired of feeling like a zombie with all the sedative drugs I was being prescribed. I then realized that God was the only one who could help me and after praying for about 8 months or so, his answer came to me at a 711 convenience store early in morning. I had purchased a coffee and added a non-dairy creamer to it and after only a couple of sips it started to give me my usual pre-seizure warning signal, which was a weird deja vu feeling. I then realized that it had to be something in that creamer since coffee itself had never given me any problems. It was the preservatives in the creamer(since it was non-dairy it required something to preserve it). So, long story short, I no longer eat anything with food preservatives, take no medication of any kind and 30 years later I am still seizure free! I thank God every day for giving me this insight because when I told my medical doctors about my discovery all of them ridiculed me and said that the acids in my stomach would destroy the preservatives. This was apparently not the case and later through my research on food preservatives I also found out that most of them are even carcinogenic. I hope this can possibly help at least one person out there as I know the horrible situation it is to have seizures.
If you were having pre seizures every time you used the creamer why did you not stop sooner. That means you knew what caused your seizures.
Study time
Find it funny because I felt nauseous whenever I would drink coffee, thankfully nothing happened but I stopped drinking it completely.
Bit of a red herring - that 8 months praying to your idol. What’s that all about?
My sister had epilepsy all her life and sadly passed away in 2017 at the age of 47. Like you she motored on every single day living life despite all she was dealing with. I always admired her for that and I admire you for telling your story and not letting epilepsy define you. God Bless
I was born premature weighing 1 pound, and 10 ounces. Because of this I developed retinopathy of prematurity, causing me to lose all of my sight in my right eye, and most of my site in my left. I decided that blindness was not going to define me as an adult however, I developed epilepsy. I took medication that seemed to control it very well for several years until I got Covid two years ago. Now I have tried several medication‘s, the ketogenic diet, and have even considered surgery. I am trying to get to the place where like my blindness I refuse to let my epilepsy define me. Thank you so much for your words of encouragement.
So sorry for this tragic loss & Holy Spirit Comfort you during grieving. ❤
I appreciate you so much. I'm a Mother of a 19 year old with Grand Mal Seizures. My son is none verbal and autistic. You gave me tremendous in-sight into his experience.
It is different for everyone tho. I will say that. My grand mal lead me to losing all memory. I’ve now lost years of memory. My worst feeling is waking in a hospital knowing I’ve a 2 year old at home. Talking about it while the government screws me has me dying inside. I’m sorry I’m ranting but I just need to see it and at least say it out loud once…
One of my friends from back in the day just passed away from injuries sustained during a seizure attack. He was alone at home when it happened, usually he'd feel the seizure coming and take himself to the nearest clinic, but this time it must have hit him when he was asleep and therefore could not preempt it. Rest in Peace Edgar.
Did he hit his head or was it suffocation
@@nothanks6931 he hit his head
Frightening because I've been in the same situation and I also live alone. Sorry for your loss.
@@chilipepper71 thanks
What's scary is I only have seizures in my sleep and they are so dangerous. Just happy my girlfriend has been able to save my life so many times
The deja vu, the squeezing feeling, the soreness after the seizure. After the soreness, it's exhaustion. Those are what I feel when I get mine.
To the people who have helped me, thank you and I'm sorry. I don't mean to be an inconvenience.
U shouldn't apologize for something like that it's not like u can control it
YS THE DEJA VU OMG
You are NEVER an inconvenience. Both of our kids have epilepsy & it’s scary as heck but never have we looked at it as an inconvenience & I know your family doesn’t either. All we want to do is take care of y’all & make sure you’re okay. ❤
I ended up on life support 6 times in last 2 years. Bad seizures I'm allergic to most meds I have violent reactions. It is not fun 😕. My uncle died in a bar from a seizure. I won't give up
I hope you’re doing well ❤
I had a violent reaction to a medication and my doctor didn't believe me. Ran tests to prove I had PNES instead.
Why dead?
please dont,praying with you.
My triggers are sleep deprivation and being too hot. The feeling I get before is always deja vu, bad taste or random chills.
Gosh I know what he means when he says none of his friends have epilepsy and he wishes he had someone to relate to. This was so well said!
😭😭😭
Yes same with my seizures
I just had my first seizure yesterday whilst on holiday for my birthday, according to my girlfriend I was out for a minute and a half. I’m still trying to comprehend it and the way I feel about the whole situation today, truly the most terrifying thing I’ve been through and I’m scared of it happening again. I don’t really recall much other than darkness so even though I’m exhausted going to sleep scares me.
How are you doing, now? I just had my first one while on an international flight, but thankfully still close to Japan. I felt awful for inconveniencing my best friends, who insisted they stay with me, and an entire flight. Though I know my friends do not feel inconvenienced but rather they are truly just glad I am okay.
I hope you’re well x
how was your toilet ( motion) couple of days before or that day , did you dehydrate , or you feel acidity , any of these symptoms
The darkness will set you free. I experienced that darkness through both meditation and psychedelics, it’s something worth exploring. I used to be so scared until my last seizure when I truly recognized that I wasn’t the one having the seizure, I was the one experiencing my body having the seizure. After this seizure, my life turned around and many things clicked that hadn’t before.
@@mizzmayhem3685 Despite taking keppra meds, I have been having occasional absence seizures for 8 years. The trigger is frequently - being in a strange or unfamiliar situation, or travelling abroad. Three times I have had one while on a plane, it’s as if my heightened state of expectation spirals into a meltdown. I haven’t stopped travelling though, I just expect the worst, then am pleasantly surprised if it doesn’t happen.
The way he describes this in detail & how he explains everything so peacefully & enthusiastically is from someone who really suffers from it & I appreciate these kinds of videos.
This video has helped me understand what my 2 year old goes through when he has a seizure. I would love to see a video on here on the parent perspective of raising a child with Epilepsy. I often feel alone in my journey to raise him and make sure he’s well while dealing with the overwhelming emotions I feel myself while seeing him deal with this
Thank you for your input. We will see what we can do!!
bianca roses don’t feel alone I have epilepsy and my parents have always been supportive you are not alone and neither is your son/daughter
I suggest you look up and try CBD oil (hemp oil). It might be "The Cure."
Hey Bianca, there is a Facebook group for support you could join, lots of parents on there, in fact it was created by a parent of a child with seizures. facebook.com/atkinsforseizures/groups/ hope that helps some.
@@saeidakbari4788 tried and tested, doesn’t work I’m afraid 😂
Big storm in the brain. Perfect description. I began having tonic clonic at 16. I have been seizure-free for over 20 years with medication. This video is spot on.
i didn’t have the smells or sounds he described as an aura before, i just saw “cartoons” and a couple seconds would feel like 10min-1hr, with extreme confusion
I started having tonic clonic seizures a little over 2 years ago after I recovered from a brain aneurysm and comments like this always make me feel better and gives me hope I will find the right meds and I'll stop having seizures some day. I had my most recent 2 nights ago, I was lucky I was with my parents and my dad recorded it to send to my specialist and it's crazy! I had no idea what they looked like, from my perspectice I just tense up a but then pass out
Hi
Please can you tell what meds you take, that have you seizure free for 20 years? I’ve been on a few different ones over 9 years, but only achieved 10 weeks max without a relapse. 🙏🏻
I have epilepsy been recently diagnosed in November 2023 at the age of 25. Whatever you have said is bang on. I have tonic clonic seizures. My ones start off as focal and can spread into the tonic clonic, so every time I get a feeling of a focal seizure, I don't know whether it will spread into a tonic clonic or not. When a focal seizure is about to come on, I get a feeling of it and know it's coming. I know you said that you don't think, 'what if I have a seizure here and what will these people think if I have one', but that is exactly what I think. I need to get rid of those thoughts but I just can't. Thank you for this video, helps me feel I'm not alone. I feel like my life is on pause. Can't do all the usual things I used to do. Currently can't enjoy life until seizures are controlled. Memory loss is a big thing that I'm suffering from. I've forgot a lot of events that has happened in my life, forgot how to do activities and forgot passwords. After my tonic clonic seizures, apparently I get extremely aggressive. I start to walk and keep falling to the floor. I start to cry and shout. But at this point I'm still unconscious and my body is acting on its own accord.
I love this video because he makes me feel not alone. I got diagnosed with epilepsy when I was 13 years old and I'm 23 now. I have grand mal seizures as well. Today I had a seizure, experiencing the feeling of deja vu, pacing around my apartment, and feeling light headed a few minutes before. After my seizure I woke up in bed exhausted, bite on my tongue, and no memory of what happened or how I even got on my bed. How he doesn't let epilepsy define him is inspiring to me
I had seizures as a child and luckily had surgery that cured it. I am just in shock by his description of the feeling before having a seizure as a “déjà vu.” That is SPOT ON! Wow!!! There is no way I could have described it as such when I was 8-9 years old, but that is exactly right!
MsD Powell not for me at all.
LaraD He’s explaining from his own experience. All of the videos are people explaining from their own personal experience. Of course one person’s is not going to define/match everyone else’s.
Whoah..... so i had a seizure a few times and didnt know rhere were multiple kinds. The past 6 weeks i had 2 and this was the first time i feel and bit my tougne and had body aches. The ones where i got deja vu in the past .. i remember pausing and having intense memories out of no where... i feel alil dizzy and then i sit and wait for it to pass.
I was on Tegretol throughout my childhood for brain seizures. We stopped it when I hit adolescence. Starting in my 20s, I would have episodes of temporary amnesia, which I never mentioned to anyone because I didn't think anybody would understand me. I had an incident last November, which I described to somebody, and she told me it sounded like a seizure, so I started talking to doctors. I was just diagnosed a couple weeks ago with complex partial seizures. I, like Patrick, feel alone and would love to meet other people with whom I could share experiences. I'm in New York, and the closest Epilepsy Foundation is in Maryland. It is lonely, and I would love to meet other people who understand me.
Read Mark Chapter 9. Siezures are curable. Genuinely Give your life to Jesus Christ. I adopted a homeless epileptic with an autistism. EPILEPSY is a demonic attack. Doctors dont believe so because they will loose patients. Ask Jesus Christ to come into your heart to be your personal savior. Attend a non denominational bible study and learn about Jesus Christ.
The first time I had a seizure I thought it was from the heat. The next time I had one was in my sleep. I remember coming to and looking around and seeing a look of horror on my girlfriends face and all my friends in my room. My first thought was like, it's 3 AM get out of my room. Then everyone told me I had a seizure and that I need to go to the hospital. After the 5th time I would know what happened with in about 2-3 minutes of waking up. If it's a particularly violent one, if I hit my head on a floor or something for example, I noticed my cognitive functions were a little slower. Reaction times slower, comprehending situations was slower. My memory isn't that great either. By far the scariest was having one while I was asleep purely from the surprise aspect of it even though having a seizure in bed is one of the safest places to have a seizure.
I’m glad he at least said that the “aura” is different for each person. But it is actually a seizure in itself, a simple focal, old name simple partial. And I’m surprised to hear grand mal, I didn’t know people even said that anymore nowadays, instead of tonic clonic. This whole thing should be prefaced with the fact that this is all very different for everyone. And what you described is very different to my seizures.
Absolutely right. I felt relieved when he mentioned a smell. I have the scent of anesthesia or some might say licorice scent.
@@dhines7892 HI I SMELL LICORICE! sorry for yelling but im just looking for answers personally. i started having “spells” where i get dizzy and my body tenses up and i have deja vu about what feels like a dream. i smell something bad or usually black licorice (which is also bad). it feels like an out of body experience because even though i know generally whats happening on the outside, i feel like i cant tune back in. I’ve been debating seeing a GP after asking some other professionals that dont have answers for me. I dont mean to infodump about my life recently, but i feel really validated in just reading your comment. I feel more seen, so thank you for sharing
I've had two seizures once when I was 20 and again at 21
My seizures tend to be audio based. when I hear a certain frequency or sound my ears start ringing and I slowly lose control of my body. My eyes fade to black and when I wake up I feel disoriented, tired and confused. I'm currently 22 and thankfully the medicine I take prevents them from happening.
This video and these comments are relatable. My now 40 year old daughter has had major seizures for about 10 or 11 years now. Sometimes 2 minutes long, sometimes 7 or 8. She had to surrender her driver license and has 2 weeks peace sometimes. Initially she was having like 5 a day. Now its mostly only one or two a day, usually 1 to 2 weeks apart.
She does take several meds and they help somewhat. She does live with us for the past 8 or 9 years, pretty hard to be independent! Everyone here be blessed.
You're not alone
My parents were dealing with mine 20 years ago, up to ten a day, and then I had brain surgery, which reduced them six years later
Every person who has episodes/seizures are different, but there is definitely much I can practically relate to here. Thank you, for talking about this!
My first and last seizure o was out for 20mins I couldn't walk for a week and lost my memory it's taken me a long time to get back to normal. It's been horrendous. I describe it as a computer rebooting, you do get back to normal
We're all different just take your time.
You nailed it that’s how I felt before I had a seizure I had grand mal seizures for about 15 years and now I don’t have them anymore and just all I can say is hang in there and it sounds like you’re living a pretty good life
How old were you when you Started / stopped? Started when I was 25 and am now 35. Have maybe 1 a year at this point… thank God
Im thankful for this video. I got recently diagnosed with epilepsy as well… Having a hard time to cope up with it but im so grateful that u shared your experience.. i really admire your courage to speak up for it
I had my first seizure on a plane when I was 11. The sheer confusion I felt when in my eyes I was falling asleep one minute and waking up in a hospital the next was insane.
I was diagnoised over 14 years ago and those auras are dead on but i also cry and get dizzy and can't walk. Lately I've been having several auras monthly and some result in a seizure others dont but my neuro told me they're actually seizures. That's scary to find out I'm having more seizures than i thought. I also have gran-mal and my after seizure effects are way worse than what he described. Eveeyone is different though. I would like to speak to him. He seems down to earth and is always nice to talk to people who know and feel what it's like to deal with seizures
I’m 22 and I just got diagnosed with Epilepsy a week n half ago. I don’t remember 3 days out of the week. Woke up at the hospital asking my family why do they all look so worried not noticing I’m the one in the hospital bed. I don’t know what to expect. I’m still sore still got a headache. Everything feels so off almost like I’m in a dream
The same just happened to me waking up in a hospital bed all bruised up and confused can't remember anything from that Wednesday it happened or Thursday
@@Kwame92. It’s been 7 months for me still don’t remember anything from it. It’s rough. Haven’t had any seizures since then but on a bunch of medication.
I SO agree about HATING when I feel the deja vu coming on!?!?! I used to love when I’d get a deja vu! But that was before my stupid seizures!?!?! Now… ugh… I dread it.
I'll be 40 in November and I've had epilepsy for about 7 years. I had a TBI on August 9th 2007. I was expected to die and if not, not fully functional. After the surgery and my consciousness came back enough, the neurologist put me on Dilantin for precautionary measures because it's not necessarily common, but happens enough to notice with people that had a TBI. Especially a bad one. It made me feel like crap so i asked to be taken off of it and i was fine for about 9 years. Suddenly one evening after i got home from work, i was watching TV and next thing i know, I'm in an ambulance. No aura or anything. So i was diagnosed with epilepsy, my TBI making the most sense to be the cause of. For the next 5 years i had 15 total including the initial one. I've finally found a good neurologist and the proper medication and dosage(300 mg of lamotrigine twice a day) I've never had an aura leading up to one and i only remember right before it happened two times. I always turned to my right when i had them (i don't know if that's coincidence because my brain injury was initially on the right side) Because of that, if I'm looking for something and i turn to my right more than once i get super anxious with my first thought being about me having one. I've had deja vu situations also that do the same thing. I have grand mals as well and they usually last for about three minutes. My entire body stiffens for a little bit and then goes to the violent muscle jerks. I'm sore for about a week, give or take, after the seizure. Thank God I'll be serious free for two years in a month 🙏🏻
I love how he lives his life! I hope one day I will reach that level of confidence to live a full life without a fear of getting a seizure ❤ You are a real inspiration
I had a gran mal yesterday
I fell
And now my bf says he was worried I sustained spinal injury which I didn’t
I realize I have to go to the er now because I’m walking like a Forrest Gump o braces
@@Greencloud8 hope everything works out from now on 😉😘
It’s shocked to hear all it’s information, you even know when it’s coming, you even know what type you have.. 😢 I just lost a sister this year 17th May. I wish she got this opportunity to hear all this information. It’s wisdom
Thank you for sharing? Helps me understand what my daughter goes through! Much appreciated
I don't get an aura.. but I'm not even sure what type of epilepsy I have. One day it's the tonic clonic, the next day it could be just not being able to speak. This shit scares me..
Neurologys diagnosed me w/ gelastic epilepsy but something tells me that isn't right..
Man, when people ask me what happens to me when I am seizing. I tell them, I am in the world between worlds. " Dead " or i guess that in between space and time or the hyper NOW. Sometimes I see peoples faces from another life time. " Wait , I know her, or wait omg I remember that!" I also can HEAR the people around me, " dont touch him! "
Saddly, I hardly remember anything for a few hours, or it hurts to much to think to try to remember. And I am in so much pain, head ache, stomache nausua, FEAR, doom and gloom, panic, scared of losing out money from work. Paranoia and worry in " HOW AM I SUPPOSE TO WORK AND PAY MY BILLS WHEN EVER I GET A SEIZURE I CANT EVEN WORK FOR A FEW DAYS. "
i have epilepsy with grand mal seizures so this is the best description of grand mal epilepsy. i could never explain how my seizures went and this guy put it in the best way. everyone is different when it comes to epilepsy
I have just been diagnosed with it, i have all the full blown tonic seizures and what not, and it's good to hear it explained this way. Thank you 🙏 i feel like it goves me slight psychosis when i have my episodes, its scary.
I also have epilepsy also known as a seizure disorder here is my story
When I was a baby I had a febrile seizure I stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived I stopped seizing. As i grew from baby to toddler my parents began to see that i was delayed. So i started early intervention at 3 years old I had occupational therapy and PT . In pre k I would get angry and punch any thing that was in front of me after my parents had been observing me in a pre k class and talking to the pre k teachers it was suggested that my parents should take me to a therapist to rule out any behavior issues. he took one look at me and said that I was having seizures he then referred me to a neurologist.
At the at the age of 5, I was diagnosed with childhood absence epilepsy but I have been seizure free since the age of thirteen. And so was taken of meds which caused massive weight gain a hand tremor and memory loss. The point is meds are good up until a point and then it becomes a pill, no pun intended. My triggers are flashing lights, the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. When i had an absent my pupils will go from normal to pin point that is the only physical sign the eye can lasts My seizures last one second and happened every minute to every minute and a half. So there are 60 seconds in a minute and 24 hours in a day then I was having seizures every 1440 minutes or 86400 seconds so in total I would have 86400 seizures per day with meds. my parents were told to treat me as a normal child and to see how fare I would develop and look at me now I have graduated high school with honors . I am in collage as you can infer I was not expected to do much of what I just mentioned
The effects of my seizures is that I have Aspie like tendencies due to my epilepsy which I know is difficult to understand to put it in simple terms as a result of my seizures my brain compensated and rewired itself i also have severe in Processing disorder Perceptual Reasoning, and Working Memory, Coordination,Dexterity, Fine and gross Motor Skills, Hand Strength, Visual Perceptual Skills.
When was 19, my father died, and it seems I have had a relapse if that is possible.I still have my absence seizure but it is not enough to put me on meds. When I was thirteen I had my last EEG and my seizures showed up as misfired neurons not seizure activity per say and the Dr. called them “flurries", so here is what my flurries are typically like: I will become very spacey, I can not interact with my surroundings, I also felt locked in to place. I am completely aware, my vision becomes like a tunnel, and thing start to move or vibrate on their own.
I write this for every person: consider using CBD oil. (at least read about it a little bit)
I've had a similar form of epilepsy ever since I've been 16 years old. I'm 22 now and granted while I do get seizures every now and then...I've learned to live with it.
Do you have focal seizures to deal with instead of grand mal seizures?
You're right we continue to see stuff over and over again before it happens
Had another Grand Mal yesterday, first one ever in the bath and lucky I wasn't alone in the room. My tongue is raw with so many bites, feeling all these little bits barely holding on the sides, both red/dark raw cuts brushing against my teeth and cheeks, it's a nightmare every time.
I found this on accident and I don’t like to talk about my epilepsy but I’m glad someone can talk about it, grandmal seizures have affected me it’s made me depressed and it’s making me have memory loss bc of how many times I’ve hit my head and I used to be active not anymore I don’t feel like the same kid I used to be I feel like my old self died and isn’t gonna come back, If you have seizures and are depressed don’t be me talk to someone please
I dont know you, but im sorry ! I wish you wellness and true happiness.
ayye bro i got the same seizure too.
Avoid sleep deprivation and think positive all the time, no matter how bad rhe situation gets.
having a mild seizure? calm yourself down and be like okay yeah i got seizure. Gonna be fine in a minute.
acceptance is a HUGE thing in controlling or reducing the frequency of epilepsy.
work out
The best description I've heard. I've been diagnosed with epilepsy since 2016. Had to figure it out. But now I know when the aura comes and get ready
i just wanna meet you. you are amazing because of this video. god bless you! i relate with you so much.
I've had first seizures back in 1997 and the way he describes it is 100% true. But I have a strong tingling feeling thru my left side of the face
Me's smiling but deep inside he is so sad 😢
I have epilepsy seizures too. I also wish there was a cure for epilepsy. One of the seizures I have is I fall down and shake and saliva comes out. The most ones I get is my body goes out. I mostly dont know when it comes.
How do you drive??? I have wrecked 2 cars...I never know when it's going to happen..but he just described the way it feels like.the dijvu started years before I had my first seizure
A member of my family never had a seizure their whole life, and has had THREE this year. I read somewhere that prescription medication can be the cause. The first one was scary, my mom ran up to me and told me they were "mumbling about something", almost like they were dreaming, and weren't making any sense. I gave them a sip of their favorite water, and it was like flicking-on a switch, they came right back! About 2 mos later, they were sleeping in the kitchen and started SHAKING really badly!! Then I calmed them down, gave their favorite water, again--normal. The most recent one was only last week, and was by-far the most-scary. Lots of blood out of mouth and on front of shirt, no language, no SOUNDS, but could see eye movement when I moved my finger. I called the EMT, and Thank God they weren't fearful and just casually said "Seizure? Yeah, Seizure." I must admit it gave me a sense of comfort to see how 'casual' they were being about it. About 1 hour later, we got to see my family member in the recovery room at hospital, and they are like "HEY GUYS, THERE YOU ARE!" We were so relieved since I thought for sure he would be sleeping, but it was like nothing happened! Thank God
It's makes me feel like am in another world. And lost of memories and they pain in my head
The best explanation I’ve heard. I have dejavú ‘s all the time.
i have had epilepsy since i was 3 years old. Its not always the pain of dealing with the seizure that is difficult, but the emotional toll and experiences that it it takes on you and the people around you. Adapting your life is not always easy but it can and will benefit more then just you when you put in the time and effort. Seizures are traumatic and painful and i have found the best way to avoid them or prevent them is by doing the best we can try stay stress free and also stay healthy on a daily basis. We have solutions and we all have the ability to do what’s best for us :)
It's a really bizarre feeling waking up after a seizure, the first couple of times it took me hours to convince myself that I wasn't dreaming and accept that I was in fact lying in a hospital bed.
I had my first seizures today around 6:15 am a if it had been any later I would’ve been driving on my way to work.. so blessed and thankful good kept me
thelouquefamily7405
Hope everything is ok!
You should check your glucose/sugar levels. You can have seizures because low glucose levels.
Ask you Dr for a 3 hours glucose and insulin check.
👍
My precious daughter just had her first seizure. I HATE THEM!!!! She had the second/third one (2 back to back) at work, that was a fear of hers, to have it away from her wonderful husband and me, her Mom. But her boss and co-workers were wonderful and did everything right, thank God!
I said all this to let you know, she too is worned before they happen. Her Mother in law told us that there's a Nasal spray that her son uses right before. He's going to have a seizure, and it prevents him from having a seizure, so we will be going. To the doctor on Tuesday and that something we'll be looking into.I don't know if you've ever heard of that? For us, that seems hopeful! Thank the Lord!
God bless you on your journey...my daughter too, I've told her she must be courageous and with the Lord by her side, take one day at a time...don't let this govern your life!☝🏼🙏
First seizure: had a bad migraine for 2 days, then a tonic seizure that lasted for minutes (but felt like for ever), with a pulsation feeling in my head that was painful.
Second seizure: had a sense of dread and utter fear and sadness for 2 hours, then felt like something squeezed my consciousness, and I started getting weaker and weaker where It was hard to hold my head on my shoulders. Then it stopped and I felt drained and my limbs were slightly floppy.
I have epilepsy too. I have 2 diff’t auras before having a seizure. Either a discomfort in my stomach telling me to immediately go to the bathroom. Or, if I’m reading something, I could have a difficultly reading & can’t seem to focus on what I’m reading. When I feel it the discomfort in my stomach, I know I’m fixing to have a seizure & go straight to the bathroom & then straight my room to lay down. If that aura is that I can’t seem to focus on anything, I just head to my room & lay down. My seizures are mainly petit mal, the kind where I usually back out for a few mins. Very rarely I have grand-mal seizures. Sometimes I black out & still continue doing something. Most of the time, during those black out seizures, my brain sees it as a habit to go to my room. If seizure comes without a warning, & I’m by myself, I still black out & come to reality laying on my bed. Praise God, I rarely fall or hurt myself. He looked out that if I’m outside or am about to have a seizure, but someone’s nearby, they can whisper into my ear to go lay down & I manage to listen.
when you go to the bathroom do you by any chance diarrhoea or feel some kind of difficulty releasing yourself?
I didn't like the feeling at first, but now it's like meditating after I go through and starting to feel really good
makes me understand more what my bf goes through on a daily basis
Thank you . for sharing it really helps
I'm epileptic myself and available to reach out to this gentleman
God bless your heart I have a daughter that is epileptic, and she has 2 babies it's horrible I wish there was a cure. Praying for you and my child!
I don't understand this, I've heard something similar from someone else that has seizures but when I have mine I never know they are coming or that they even happened. I also lose huge chunks of time before or after a seizure and I don't know why it's so different for me.
is it like there's no difference before and after having a seizure ?
and do you have seizure anymore ?
The same thing happens to me when I have seizures. You aren't alone, it is frustrating when we have no aura and just wake up after with no recollection of what just happened.
I’m 33 as of this month this is exactly what I go through the tightness,smells,fear feeling, the tiredness, I broke my tooth before I knew it was a seizure. I have been diagnosed as of this year took me on a roller coaster it wasn’t until my second major episode did it all come to light for me. It’s still hard to explain but I’m learning this video really spoke to the side I feel is so hard to communicate what is happening
I’m new to seizures. I’m 37 single dad to a 6 year old. It’s been very scary would love to speak to you. I have tonic clonic seizure (grand mal). Hopeless is how I feel
Don't feel hopeless, I raised my daughter alone with seizures and went to school. It is scary, but it can be done. God bless you
Wow this is crazy because I’ve been diagnosed with epilepsy since 1988 when I was born in August of that year and to this day it still scares me because I never want to terrify my niece and nephew if they witness me having a seizure.
We’re in the same boat
I had a gm in front of my niece and two nephews
My niece went off crying and my nephews apparently just stared at me with their mouths open
@@Greencloud8 Wow, that's horrible.
@@ladybugradio1988 niece was 7 and nephews 5 and 3
Unfortunately epilepsy isn't considered a disability. It's a disease. I have photosensitive epilepsy and i have grand mal seizures. I wish i had like a tell before it happens. I have nothing, just happens, and when i come to, i don't remember anything before it happened at all.
Thankyou For helping me be BRAVE AND FEEL LESS CRAZY. I have 3kids and you just helped me teach them how to save mommies LIFE. 💜💜💜💜
Im 19 and have had 4 tonic clonic seizures in under two months (3 in my first day!) I'm trying to learn more about it. Ive gotten some new issues since this diagnosis (mostly memory issues post seizure) so thank you sm for the video ! :-3 I also have tourettes since I was 9 or 10 i have a big heavy feeling its related
Hi, Thanks for sharing this. What you described it's almost identical to my experiences. I've unfortunately broken bones. Severely bitten my tongue like you have,also on the right,every time. When I come to, totally exhausted, every muscle, fibre and joint is extremely painful. I feel like every tooth in my mouth is loose and about to fall out.
So I feel your pain and sympathise. The mediation I take now certainly helps enormously.
I, like you, don't allow this condition to dictate my life.
Keep well and stay safe.
I am so thankful that I have no memory of my seizures. People tell me what happens to me, but it's as if they're describing someone else. I don't even notice the difference between the start and the end, like a difference in location. It's very odd. The only memory I have is a flash of memory from a postictal confusion after a seizure when I was ripping down the wooden blind in my room. Apparently I trashed my room 🙄. One time I was staying with my parents and I walked downstairs, got milk out of the fridge, went over to a plant and 'watered' it with milk 😄
All controlled now with Carbamazepine, but I still have a crappy memory
Seizures are different for different people. I can't imagine having the seizures that guy has
Best way to describe a post seizure to someone who’s never had one I tell em imagine your worst drunk night out then some guys decided to jump you after and now your coming to that’s what it feels like I can’t even tell you the horror I feel everyday everytime I have an aura some nights I don’t even sleep out of fear but I’m the most free spirited man you’ll ever meet I do martial arts I spearfish things no normal person normally does not to mention what I do my support group loves me kinda thinks I’m a little crazy but I’m their “athletic” representative of the association and I’m damn proud if I die from a seizure while doing what I’ll love I’ll say it now like I’ve said it before I’d rather die in the ring or in the ocean then at home in fear besides I always have people with me who I train myself or I know are epilepsy trained
My son is 29 and has had it for 15 years. Normal in every way but lives with us so not alone at night. People say terrible things about him living with us that make me cry.
I'm 28. Got diagnosed at the beginning of the pandemic, a year after a bad skull fracture.
I've been staying with my Mom again for the past couple of months. Going to move in with my Dad when he finally gets a place down here. Everyone in my life has been nothing but supportive of me doing so, I'm really sorry to hear that there are people around you who are so insensitive ..😔
One of my best friends is bipolar and has been having the occasional psychosis since he was a teenager. He's 30 and still lives with his Mom and Dad, there's no shame in it.
@@dubkatmtl Thank you honey. blessings to you
@blake7349 Many, many, many doctor visits Cleveland Clinic, Mayo Clinic.....
Don't mind these people. They don't know your story . Peoplel are cruel. God bless you and your son
My son is 35 and living with me. Nothing wrong with that!
Thank you for this video I’ve been with epilepsy for 5 years it’s so stressful I get Ora’s as well im so scared because I never know what’s going to happen. It’s difficult explaining to people around you what it feels like but this video helped me when telling others how I feel.
I just figured I got eplisey 😔 from a brain 🧠 tumor removal I'm still learning more on my sezuire 🙁
@@babyscarr3 wow that is crazy . Definitely just avoid stressing yourself out and speak with your neurologist and see what medicine can help control any episodes. I wish you the bedt
Talking about epilepsy, calms the fear from it. I had 4 grand mal seizures and hundreds of little ones, but after 36 years with it, the last 3 years has been controlled, as I stopped taking medicines, avoided TV screens, crowds and spend time in nature with animals. When the sense arrives, I now only sit down and embrace it and breath deeply to let it happen. I accept epilepsy as a gift, that it is not understood. When it happens, I have no concept of time and cannot feel my body, but I do go into a multi coloured tunnel... so why be afraid of it. The last few have been lovely, with no spasms and no black outs, just overwhelming information that I allow it to come to me and then pass.
Right I've had like 20ish seizures in 4 years one of them was eight minutes ive probally had 7 or 8 big seizures in my life. Still working on controlling them.
@@snakyYT The key is to avoid that fear. Fear is in the mind and when it doesn't understand it, it panics and that loses control of the body. I learned this from an arranged Quantum Hypnosis session, which means, I was fully awake and I allowed a physical seizure to happen. My left brain is now asleep, but my right brain
is awake and observes the shakes happen from my neck all the way down to me feet. It lasted about 20 minutes, and my body was quite cold, but I spoke to the therapist, what I was feeling and tapped into what causes it. It was mostly be feelings, of hundreds or mini little fears from childhood, that are still there in my body, not said or explained. As soon I knew what my little fears were, I know smile and just allow them to pass through me and not effect my mind. It really is a matter of taking ones own responsibility that 'we' are in charge of ourselves, thinking epilepsy is a foreign illness causes more fear.
@@frankmuldowney7839 thank you. I have been having aura and I stated taking deep breaths and try and stay calm. I theorize that doing this will limit the severity of the seizure as I am calm and am only focusing on breathing instead of the buzzing of my head.
@@snakyYT That's excellent. Focus on breathing controls everything, noise, people etc... If you ever keep note of Tolle's famous quote ''What is my next thought?'' and I use that method a lot, to allow hundreds of thoughts pass by, as they are 'not' mine. Overload of thoughts create seizures, when you think they are yours but they are not. I just breath and observe those thoughts and let them happen, like watching dozens of movie screen, yet you are not in any of them.
@@frankmuldowney7839 thank you
this video gives me alot of hope right now thank you
Can someone help me. I’m trying to drive and need a approval from my neurologist but they say my doctor is supposed to sign it and my doctor says my neurologist is supposed to sign it. I don’t know who’s supposed to or not I’m trying to get on with my life with independence and it’s hard
I **"disagre"** that there is "NO FIX"
i started having this type of seizures back in 1996 when i was 12yrs....i struggled with it through my teenage years.
In 2002 i was introduced to new medication, daily tablets...and after 1year, believe me or not, i have NEVER HAD A SEIZURE SINCE THEN....i still took the medication till 2006 and stopped without even consulting my doctor...still have NEVER HAD A SEIZURE since then....i always thank God for the doctors and the meds I got...it was humiliating going through teenage years, being stigmatized and made fun of....i am grateful i got cured.
I'm 23 I was diagnosed with epilepsy 2 years ago , this just told my experience exactly on point. Had my last eps 3 weeks ago and broke my jaw , I honestly thought no one will have the experiences that I went through but I was wrong .
My aura is what I call a feeling. It's kinda like a tingling and pins of needles. This dude has described what it's like mine. I shaki bite my tongue eyes role back. I hear a buzzing in my head during one and I think mom dad help uhhh. After the seizure I can't walk well I have trouble talking and a massive headache. This video is really helpful foe me as even though I had them for 4 years they still scare me. Thanks for this video it really helps
There are over 40 different types of seizures. We all experience them differently. I have 6 different types of epileptic seizures and non epileptic seizures.
From my personal experience, the ones I hate the most are recovering from complex partial seizures. The recovery time is 2-6 hours and I lose total loss of communication during the full length of recovery. Even the phrase that repeats in my mind is garbled. I can’t understand anything I read, anything said to me, anything I try to say or write is garbled, it makes so sense.
I’m fully aware during recovery and able to do things. It’s just frustrating that I have my own foreign language while I wait for my brain to recover. I find these worse than a secondary grand mal (when one type of seizure spreads and turns into a grand mal). Waking up tired and sore is easier in my opinion.
C’est la vie
I do have epilepsy since 2003, it's been almost 18 yrs now. And being a woman, it's way more complicated for me. I'm 31 yrs old n got married the last year. I wish to conceive and my neurologist adviced me to change my usual anti-epileptic drugs, the ones I've been consuming since almost 18 yrs now, as they can be dangerous for an unborn baby. I followed his advice and replaced the drugs with a lower power drugs. But since then, I very frequently have seizures, almost every 3 days. Earlier, it used to be once in a year, with the high power medicines. And since, i'm an Indian, joined family is although, unbearable n stress causing yet a non negotiable part of Indian culture. Mockery, bitching, creating misunderstandings between the newly married couples, lack of privacy, husband turning less of a hubby n more of a mumma's boy, work load r all cons of joined family causing huge stress to an epileptic patient n wanna be a mom like me. And unfortunately I'm not a submissive lady by nature. I have, inspite living in India, been brought up with all the freedom so am quite rebellious to the typical Indian family settings affecting my relationship with my family oriented husband. I so wish that I can convince him to move out separately atleast for my mental n physical health but he doesn't have enough affection for me as compared to his family to move away for my sake nor I want to divorce him.
I was diagnosed after a pretty traumatic part of my life and my bad decisions that I took that led me to my epilepsy but it still is undiagnosed in where the issue is but man I feel the pain in your voice it’s almost impossible for me to open up because it’s so embarrassing having seizures and the shame it leaves you in afterwards
I can’t believe how he has explained this so perfectly.
I was about 4 years old when I had my first seizure. It would start out like a numbing sensation on the right of the body and stiffen up to like stone just before I had the seizure I would grab my right arm to try to hold it down. I would very lucky if I could go a whole day without a seizure. When I was 17 I had an operation to help control my seizures. I went from 1 seizure a day 1 seizure every 3 months. Over time I discovered seeing things flashing like lights or scenes on tv 3 times a second of faster it would trigger a seizure. And now before I have a seizure a get a nervous twitch sensation in my head, which gives enough time to sit myself on the floor ground. After having seizures for 50 years I know what to away from and because of this I have not had a seizure over 2 years.
Thank you for making me not alone ❤
Thank-you for sharing your experiences. Recently, I had my first seizure. Your calm manner & describing seizures is very helpful. Mil gracias.
I would have sort of a daja vu feeling but also my mouth would start feeling numb and tingly. I think actually the dumb feeling came first, and so that feeling gave me sort of a daja vu feeling, and I knew what was coming. Apparently I had some kind of rare childhood seizures (was never diagnosed with epilepsy). But even though they spontaneously went away as I grew up (at about age 11), whenever I get any sort of tingling or numbness in my face or mouth I get this feeling of dread - like, oh, are my seizures coming back? What do I do if I really do have one now? (it's been 27 years since the last one).
It's terrifying when I'm driving. I feel bad for those who have to deal with seizures their whole lives, because even from experiencing them for a few years in my life, they still haunt me.
My family and I are so sorry for your experiences, fears and trauma. I've lost so much and my family has been through this crazier and crazier experience since I had an accident in 2018. We absolutely understand your fear and the fact that you have struggled, your word's are as strong as the person you are 💜
yeah i don’t think i’ll ever be able to drive to begin with 😕
Mine is deja vu, extreme fear, losing all sense of language (reading, speaking, listening, reading) and then I black out. I never remember the falling over or the getting back up and someone has to tell me what happened. A couple hours later I'll remember the aura and what I was doing when it happened.
I have epilepsy.
I don’t think about it.
I am now retired.
I will not report I have epilepsy if I go back to work.
Should I?
I have been seizure free for one year.
I am told by my neurologist I can get off my medications in 2025 if I go seizure free and the EEG test is ok.
I have had epilepsy for the past 10 years...I have had seizures up to the point where I have fallen in a drain, bathroom on the ground and on a stove where i got a nasty burn...All this has happen while i am on my medication...But one thing i have noticed is you really get an aura or an out of body sensation ...Its really creepy because u can see or know whats is going on but cannot control it..This has me feeling depressed to the point of taking my life .....But you have to be persistent...All the best for you others stay safe..