Thank you for sharing. I have a daughter with Temporal Lobe Epilepsy and people keep thinking she has behaviour problems or needs a Psych. Helping me understand how you feel helps a lot. My daughter has disabilities and cannot articulate as well as yourself. Stay brave, you help and support people by sharing.
I’ve only had these experiences when i was a child, and in my late teens. For me it started with a normal feeling of dejavu, but then very quickly just pulls you into what in that moment feels like real dream memories you’ve had and you remember everything about it. Then boom, it’s gone, and you just feel like you came back from a different plane of existence
Wow! Never knew this was epilepsy until now! No wonder my nurse practitioner put me on meds that help prevent epilepsy. I didn't understand why but I've explained so much to her about myself. Thankfully she pays attention!
I had this too and then nearly always it caused me to faint/blackou when I was a teen.. I'm 44 now and have started to feel them happen again without fully blacking out.
I’ve always described it as feeling like I’m slipping into another dimension. I had no idea these were seizures until I started having tonic clonic during sleep.
I appreciate the way you tell it as being "injected into a dream" and the "story set up" is a perfect description. Unknowing I had epilepsy, when I was younger I'd describe it "I'm going back into an old forgotten dream, I've been here before, but it was in a dream". I called them flashbacks. Thank you for sharing, April!
Thank you both, I have this exact thing. The flashes of a dream you can't remember having is exactly how I feel. I always tell my wife that it's like i remember all the dreams I ever had and that its so scary that if these really are my dreams, that I dream this much. Also, whats really odd with me is sometimes at night when I dream, I literally feel like I'm in the dream for like months or even years. I wake up and its like I was in a coma for years or something and it really freaks me out bad.
I'm getting an EEG because of videos like this that so intelligently described something so similar to my experience. Infected into a dream does describe these episodes I have of sudden dream recall and it's a lot like those deja Vu feelings and sometimes they're followed by a sudden sense of impending doom. I feel like something is messing with my head sometimes. But it has to be like this And I wonder if they'll have me do a sleep deprived EEG or how it all works. I'm nervous but I want answers.
I just forwarded your video to my wife to let her know what it feels like for me because your description is the best I’ve heard. I’ve learned to sit down immediately. I have also found if I’m dehydrated and or lack of sleep they are more likely to occur. Good luck young lady.
I've been getting these since I was a child. Never knew what it was, called it "Deja Vu's". My parents didn't really believe me when I explained it to them! Feel so much relief hearing I'm not alone!
Can u explain how urs was? I feel like everything I see I remember it. I feel like I have seen it and then I sit down and start to think where have I seen this. ITS LIKE THIS With everything in my life. It’s so exhausting I’m thinking all the time
Same here, had it since I was a child and referred to it as “deja vu seizures”. My parents didn’t see it as something serious either, but I got checked for epilepsy two years ago In order to figure it out but they found nothing. I think this type of epilepsy isn’t very researched on and there’s little knowledge about it sadly.
i suddenly get deja vu and a sudden roller coaster feeling that makes me feel nauseous and hot for a minute. while it happens i kinda stop in my tracks. the tiles on my floor and sometimes the lighting in the room or the smell might trigger me. it feels like im put into a dream (but i cant even remember when i had the dream or if i even had it). it goes away after 2 minutes at the most but after i have it i try thinking about what actually happened and i cant describe it to anyone. the 2 worst parts are the nausea and the fact that i feel i cant really go to the doctor and get a proper treatment if the doctor is incompetent and that itll get worse and i lose my memory and stuff
"Its hard to describe a world that doesnt exist". Yes!!! Im here trying to find ways to describe what im going thru. As the aura happens and i know its gonna happen, i go, "Its HAPPENING!!" Over and over until it ends. Im covered in goosebumps and my face and cheeks get goosebumps too. Im on Levitracitam. I feel ya girl. You described it well actually. People who dont know what it feels like, you cant describe it to them. Its like trying to describe the beauty of seeing something truly majestic out in the world. You cant. Theyll never know the feeling unless they have seen it witnessed it personally. Its wild. I feel crazy trying to describe it sometimes. I hear ya girl.
It's unfortunately very common for people to suffer with these deja vu auras for years before they're finally diagnosed with temporal lobe epilepsy (TLE)). Part of the reason is because people generally think epilepsy is just the dramatic fall-to-the-ground and shake kind of thing. They don't realize that there are many other types, too. And like in April's case, many of them don't cause unconsciousness. Thank you, April, for explaining what deja vu auras feel like. I also have TLE, but my auras present as waves of intense nausea and sweating lasting several minutes. I was misdiagnosed at first. Finally I saw a neurologist who tested me and put me on epilepsy meds. After trial and error with several epilepsy meds, my seizures are under control. I wish the same for you.
Yep. When a therapist told me to get checked when I had one in front of her, I thought “she doesn’t know what she is talking about. I don’t collapse and stuff.” Long story short I blacked out while driving from having one. Thankfully the wires on the side of the interstate saved my life with my seatbelt as well. Got tested, yep. Temporal epilepsy
wow... the first time ive heard it described by someone other than me as "being injected into a dream that was already set up"... thank you im sharing this with my family to help give them context.
Omg you are literally the 1st person who was ever able to explain what happens to me!! Mine sometimes wake me up in the middle of the night and are super scary. Sometimes they happen in the middle of the day and I try to tell people what it feels like and they look at me like I'm nuts. To me it feels like DeJa vu mixed with remembering my dreams and they're usually the scariest dream ever I'm remembering and it feels like I'm in actual hell. I always say "I wouldn't wish this on my worst enemy." I also get visual auras where its like there's a ripple in my vision. Usually that goes away only if I go in a dark room for like a half hour with silence like a migraine. Super scary and I'm sorry you go through the deja vu part too.
I've been trying to find answers for what's going on with me. I get deja vu, accompanied with anxiety, impending doom, and the feeling I am going to die soon. Really sucks ngl
I've often thought of it as stepping into the body of an alternate version of myself who lives in an underlying, coexisting reality.. A much darker, almost hell-like reality that is always there and always _has_ been there.
Been there, feeling is almost like claustrophobia.... but , I somehow tell myself right away to ignore it and it's " not happening " and seconds later it goes away... try it!
Yes, I felt so alone about this. Thank you so much for sharing this. But no one would believe me. It started happening a year ago and did it ever since. And I hate it.
I've been watching youtube videos of every topic imaginable for years and this is the best one I've ever watched because I don't feel alone or crazy anymore. Describing it to anyone is so difficult, and I'm good with words. Thank you so much for taking the time to verbalize the sensations because, I know all too well, it is so hard to do. The way you describe it is exactly how I experience it. I'm not on medication and haven't seen anyone about it because, though I've had them for years, I can go months without them. Anyway, thank you so much for giving me someone I can point to and say, hey, look, she has them, too.
11 years on since the SPSs began as a result of big brain aneurysm, I still return to these videos just to touch base. What is MOST important is the realisation that I am not the only one experiencing these crazy symptoms. Indeed when they started I was scared to share how they happened in case people thought I was making it up. Listening to you I feel like you do in that that we are not alone and know others who share the same condition, YET, when a seizure starts until back to normal (10-30mins) I feel as lonely as a person can feel. The sense of doom and the feeling of .....’why me?’......’oh no, not again’.....etc is irrational yet real. Yet also there is some strange sense of comfort when one begins ! A part of it is quite pleasurable! Perhaps the adrenaline rush? I don’t know. I do know that talking and listening and sharing is good especially with those who share the same things. Only those who do , could understand. Whilst others, even health professionals say the do....they don’t! You are clearly emotional and that’s normal. Suffering this is a burden know doubt and we all must share the burden for each other. Especially in awareness raising so keep posting and keep sharing your experiences with everyone you meet. It’s good for you. I will be thinking about you here in Scotland. Xxx
Please, keep making videos about this. This helps me understand a friend that I met a school, who has this. They try to explain it to me, and I am trying to understand. This video helps.
THANK you for this video. Ive been dealing with the deja vu feeling for years never understanding what was going on. It didn’t happen for awhile and then it started happening more and i would have 20 of these deja vu episodes in a row. I did research and found out about this epilepsy and i was in shock. I would have never thought this was what it was and i never thought i would be experiencing something like this. I have not gone to the neurologist yet but i Plan to after a bad Spell that left me very out of sorts. Its only been the deja vu feeling and nausea and heat and then not feeling like myself for days. God is good though and has helped me through some very difficult days involving these and i feel renewed knowing more about this. Thanks for this video tho bec it Does feel like your crazy sometimes when you describe it to others. I will be praying for you as well! Stress is definitely a trigger for me so take care of yourself! Its going to be okay and Gods got you and your gonna make it through! Sending love!
Hey! I was just diagnosed on May 12 2019. I have trying to find someone who understands. I haven't had my EEG yet but my neurologist feels that will give the answer. I have been struggling emotionally, short term memory loss, nauseous, uncontrollable pain in my head and leg. I'm so tired of it but I know I have to live with it. Your videos helped me tonight. You saved my life. Thanks.
I did EEG the problem is that it’s just watching for brain activity for a certain timeframe, which usually doesn’t reveal much since the abnormal brain spikes are rare for some ppl like me.
@@isabels2973 if this is anything like what I have, it’s definitely not anxiety! I can actually feel the misfiring in my head. It tingles and tightens up in my temples and goes across the forehead. Is it triggered by anxiety, ptsd, abuse, head injuries? Possibly! Although it’s not anxiety alone! Definitely neuro and misfiring! I’ve had two separate , 2yrs apart, 7 day 24 hr EEGs that shows it.
I have this all the time, I'm so happy to have found this video because I always try to describe this to my family and they think I'm crazy. WOW THANK YOU. I no longer feel dumb!
Thanks for sharing. You just described what I am going through and it really is hard to explain. It is scary because it feels like your brain is being taken over. 😕
Best description I've ever heard. I've had "deja vu " as long as I can remember. I was told that it was because I'm an old soul and have been reincarnated many times. Then I explained it to mt neurologist after my first public seizure and he explained that it was an aura. My wife takes video and talks to him for me since I very rarely remember anything. Apparently I have a few different types. It is scary and I'm not legally allowed to drive making life even more difficult and scary. But I wouldn't want to put others in danger either.
i’m 14 i have this too and it’s frustrating that people think i’m just insane trying to explain it to them but my main question is if i should be worried
Very good description, it sounded like you were exactly describing my experiences with TL seizures. The sudden flash of something “injected into a previous dream” is spot on. Also the depersonalization. Thanks for sharing your story, it’s good to know I’m not alone.
Someone commented that she feels like crying because she's been having the same experiences-----I'm bawling my eyes out right now! I thought I was going crazy! This is exactly what I've been dealing with, and it's been scaring the crap out of me! Thank God I found your channel----now I have something to go on.
Refreshing hearing from you. the auras I have are very euphoric. It feels like people are trying to reach me. I’ll have the same aura over and over throughout a time period. Strangers appear to me in this state, yet I feel like I know them. I also have tonic clonic seizures, all of which increase around my menstrual cycle
I’ve been struggling.. for soo soo long. I got diagnosed with Idiopathic Epilepsy [tonic clonic epilepsy] at age 14 and I’m now 26. I was seizure free for 5 years thinking I was one of the special ones to grow out of the dam Illness. I just recently started having my episodes again. What I get before my episodes are Dej ja vu / auras.. they scare the living crap out of me. You described them perfectly and to hear someone say it makes me feel a little better. I’ve talked to some others with epilepsy and they don’t get what I get and it made me feel so out of place an so confused. These auras have been happening more an more recently and makes me feel like a zombie.. like I’m in another world. Thank you so much for sharing this takes a lot to do ❤ I hope you’re doing well
Everything you said is so accurate to what I get. How you explained it as you feel misplaced and not in the real world sense. Also, how it is so familiar and nearly like you’ve been their in a past life I haven’t been diagnosed but I have just turned 18 and I can remember having these ‘flashbacks’ or as my dad calls it ‘déjà vu’ moments for years. I feel as though mine come from things that trigger something inside me, I can feel it starting and a majority of the times I can stop it, sometimes I can’t stop it and sometimes if I feel safe and in the right place I let it be. But, it is scary! If I’m alone I feel as though something is going to take me away from this life, I hear voices and think I see these imaginary characters nearly like people are trying to abduct me and I feel as though I might die. I also feel as though when I get this that I am fully aware and not impaired, so I can do anything and I’m able to do everything but it feels like sometimes I’m not in control of my body and it feels as though something will happen. For example, today I had one and it was when my father was driving me to go to dinner, it happened randomly with no tell tail signs and I felt as though I was going to jump out of the car(even though I wasn’t and didn’t have the urge to) but it was like someone was trying to control me. I don’t know if anyone can relate but I’d love to hear what you guys have to say as it is something I am coming to terms with and trying to understand. The most important part is that I am in control and most of the times I can fight it when I feel the sensation start.
Thank you, April. Awesome job describing the experience! Very difficult to explain to others. I get a lot of comfort hearing others talk about it and that I'm not alone. We'll get thru this together!
Praying for you girl. I know exactly what your describing. The same thing happens to me. You’re very brave for posting this. Honestly I’m terrified of my seizures and thank you for being so strong and brave
Thanks for making me feel better.. I feel so crappy due to seizure auras/deja vu. I literally get them so often and they are the same repetive thoughts as well. I loved the video very relatable. We'll get over seizures, fighting! 👍
This warmed my heart so much. It's the first time I feel seen and understood. I relate to you so much and this has been so isolating because people don't understand but you understand me so thank you for this. I hope that you have a peaceful night.
So so happy I found this. Now I can show my friends and mom how it feels! I could never describe it well enough but you did perfectly! Have you ever noticed it come on when you may be stressed or anxious? That seems to be when it happens to me the most. I gotta get to the doctor! Thank you for sharing your story. Definitely makes me feel better to know I'm not alone!
katie konopka Stress is definitely a factor for me but I’ve noticed that I’m even less resilient on days when I haven’t slept well. I’m still trying to get into a good self-care routine because I went from 2013-2017 without any grand mals but I was very staunch about my self care during that period. I wasn’t aware at that time that I was epileptic and it has become quite a challenge since My seizures have become uncontrolled. I now deal with the impediments of memory loss, migraines, and limitations related to the condition like my inability to drive. It makes it difficult to scout out affordable organic foods, engage in community, and find friends-even taking a bath in an empty home is no longer a relaxing option; all of these things were a big part of my stability before. Im still hoping to overcome these things to establish a schedule that can help me reduce my stress and anxiety. I’m glad my video helped, I must admit I still feel very vulnerable in front of the camera.
Oh yeah Katie! Stress and anxiety are major triggers for me. Hard not to be stressed sometimes but getting to the Doc is step one buddy. Keep in contact.
You are not alone , and you are not freaking out . Jeez I remember me having my first attacks and I thought I will be crazy till the rest of my life XD hahaah
I’ve been trying to find people who can relate to this experience for a year now, and I’ve recently found so many of you describing exactly what I experience. I had no idea that seizures could look like this, THANK YOU for sharing. I’m making an appointment with a neurologist asap.
It's like you read my mind. Exactly how I feel and glad that I am not alone. Someone told me the other day that I inspire them because if I can do it then so can they. Know that you are not alone and that we will all get through it together. Keep going for as long as you can. Focus on the moment. Yesterday is history and the future can wait. Remind yourself of what you have also made it through like if yesterday was a bad day for example. That will make you feel strong. You are not crazy or weird. This is something that we can not help and did not ask for.
I have a hard time explaining this to anyone else. This is exactly how I feel when it happens. I’m sharing this with my family. Keep sharing and thank you so much.
I been having my symptoms or whatever it is getting really frequest this past month/week, im happy i found your vid because it helps me know im not just going insane and is probably worth getting looked into.
I feel a sense of relief having a better understanding of what's going on with me and knowing that there's others that experience the same thing. I remember the first few times, thinking to myself that maybe I was having early schizophrenia or dementia and feeling scared that maybe I would go into that deja vu/dream state and not come back. The immersion feels so intense that I was worried I would get stuck there permanently and my physical body would be here, like a vegetable or something, with no way to communicate what happened to me. Now that it's happened several times I feel like I'm able concentrate better during the immersion and I make an effort to remember bits and pieces of the "dream". I'm trying to make sense of where I'm going off to but then the nausea brings me back to reality and I feel completely exhausted and disoriented afterwards. It only last a few seconds but the fatigue lasts for a while after it's over.
Stay strong, by talking about it, you are a winner. I sometimes just lose time and can't recall anything that happened during those few minutes, other times my brain creates this fantasy world usually related to a show watch, or a game I play or played creating scenarios where I interact with the characters, or watch a scene play off in a way my brain believes it should or would go.
I had a right temporal lobe intracerebral hemorrhage almost a year ago that destroyed most of my right temporal lobe. It has left me with similar seizures to yours. I totally understand what you mean. hearing these from you is like someone explaining my seizures. It is devastating. Mine first started with auditory hallucinations but now it starts with the Deja Vu thing. Sometimes it is accompanied by a train of racing thoughts. I hope your situation has gotten better now.
Wow, this video was great!!! I am going through the same exact thing----for 50 years. You will make it! I have had soo many seizures of various types, but the way you describe the deju vu kind is spot on.
Reminds me so much of trying to explain this to a doctor when I was 8 and first starting having seizures, so hard to get out into words and that can be quite isolating in and of itself. I just found your video as I've been having auras recently again for the first time in years, was really helpful to find you talking about it, Hope your managing with your own epilepsy and hanks for making this!
Thank you so much for this video. You've helped me so much, I've never been able to put into words exactly how these symptoms feel but you've hit the nail on the head. It really is like Deja-Vu in like a daydream form. I used to get it bad as a kid, roughly 8 years old, but it soon went away. I'm 24 now, and it's started coming back. However now I'm going to be able to go to the Doctor and explain myself now. I honestly can't thank you enough! I hope you're doing okay!
Was just randomly browsing and I came across this. Logged in to drop you a quick message. The "dream" description is quite a good way of putting it. Its like as soon as I get there everything has been pre-written and I know exactly whats about to happen next. It doesn't matter where I am, everything just feels like im viewing it through a familiar lens again. My aura is around 1/2 minutes so I always get a chance to have a walk around this dream world and gently, steadily prepare for the seizure thats about to come. I usually find a safe space, make it comfortable, lay down and then prepare for the chaos thats about to ensue lol. Theres a bit of fear but each time im actually surprisingly calm and collected about it. I describe it as the feeling of walking down the street, turning the corner and realising you left your keys in the front door! It's actually quite funny coming back around afterwards and looking at the horror on peoples faces if they have never seen one before. If its a really strong one i'll be knocked out for the rest of the day/night. Your not alone. We are out there too. Just keep on doing your thing you will be ok :D.
I really appreciate you posting videos like this. I go through the same thing, and can relate so well. It’s so comforting knowing there are other people out there describing the same feelings that I have. I wish you the best 💕 sending good vibes
Quinn Foster 💜💪💜 Taking one for the team! 😅 It’s difficult discussing things that make me feel so, well, disabled! But I KNOW our community needs more visibility; there just isn’t enough awareness and support 💜💜💜💜💜
I get this same exact feeling with the auras. I've been having these partial seizures for years (probably 11 or so years). I'm conscious throughout and can speak etc just very confused and find it hard to string a sentence together. I get the 'dreamland' feeling u describe too where I can be sat in my house and know exactly where I am just everything seems very strange and a little unfamiliar. I've have an MRI and EEG with no luck of diagnosis so far. I assume it is from a traumatic brain injury i sustained when I was 10 years old. Maybe from, like you, scar tissue on temporal lobe.
I have been having seizures for a few years now. They have been changing lately. I have been going through this aura you are having plus auditory issues, feelings of anxiety and hysteria, chest pain... I am praying for you. Thank you for posting this. I feel less alone now.
I'm 55, writing from Italy. I've tried to describe this stuff for 40 years. Those 'crisis' started when I was 15, in 1979. They went on for 5 or 6 years, then stopped for a while and came back when I was 24. After a couple of years they were gone. Sometimes I still can 'smell' them coming, but they don't. I seem to remember a parrot and and a white corridor, the feeling of deja vu was unpleasant but I had to go through it all, there was something irresistible. After each crisis (sometimes 4 or 5 every day) I felt exhausted and sweaty and all the 'dreamy images' were instantly impossible for me to remember. I'm very touched by your video: after 40 years I've found someone able to tell my story. Thank you, and sorry for my bad english.
You did a wonderful job explaining the deja vu seizures. I've had to live with them and Jamius vu seizures for over 40 yrs. but then my neurologist told me that the moment I started to feel any type of seizure start up I was to tighten up all the muscles in my body and make my hands into tight fists for a few seconds and if I did it fast enough it would stop the seizure and take my word it has stopped many of these seizures so give it a try. I wish you and everyone out there only the best it's time for the world to wake up and learn about epilepsy and how we are normal everyday people just like them.
I totally understand what you mean. I'm having it now. I had surgey and now wondering how things are going to go. But, thank you for being here for us. It's important!
Bigfoot thank you for the comment 💜 let me know how the surgery works out! 👍 I’ve heard some great things about surgery outcomes and it’s something that I’ve thought of. Doctors were able to find the origin of my partial episodes in my right temporal lobe but they’ve yet to have me monitored during a generalized seizure. I had to move for financial reasons before I got a chance to see if I am eligible for surgery 🤷🏼♀️🤦♀️
@@aprilcoles it took me living in Arizona and my heart stopping during an status episode. That was crazy! But, it's been a few weeks and I'm almost healed enough for the surgey. Seems our seizures come from the same area. I'm honestly still learning. Ha ha not sure if it's the heat cooking my brain but my seizures are certainly changing. So, I love these videos. Again, thank you!
I have this exact same condition And I have to say that you explained what's going on better then any1 I've herd yet. I call it an ACID TRIP when the aura hits. But just know ur not alone. Much luv 🙏🙏🙏
I'm so sorry for all of us who feel those things, I take levetiracetam 1000 mg twice a day and I have dropped my seizure activities to almost two times a year.... although I do get those scary "deja vu" ..."why am I here" ... "everything is familiar".... "claustrophobia ".... I don't know if it's just me but try this who ever reads my comment... when you feel something similar.... breathe in deep and "ignore the feeling" .... think of something nice like a song or remember a funny clip of you're favorite sitcom... somehow the terrible feeling goes away.... don't invite the feeling, run away from it. IF YOU'RE DRIVING , STOP THE CAR AND RELAX , MAYBE WALK OUT AND DO SOME BREATHING EXERCISES. stay safe everyone... for the mean time, I avoid horror movies in large theaters and driving in the rain.
I take 1500mg of Levetiracetam twice daily as well as 600 mg of Oxycarbazapine 3 times daily. I've been on them since I was 10 that's why. After so long my doses have to be raised by a lot.
Horror movies always caused them for me. Not even because of the lights just because my emotions are a trigger. I tried some of the things you mentioned to stop mine but what helped me most was laying down anywhere and relaxing. I also told people that if I tell them I feel one happening it will happen and to not ask and just let me fight them off on my own. It was just the feeling of having so many people worried about me that triggered them.
I have been having these since i was a teenager and im 35 now. It was gone for a few years and then back sporadically. Its happened a lot over the last couple pf months and im trying to get it looked at. I am keeping a "seizure" diary now and i have tried videoing myself or writing down the thoughts i have as they happen and they make zero sense even to me 5 mins later. I work alone at home so no one sees it like it do 😢 I have seen it described as a euphoric feeling and that again sounds right to me! Thank you for this video 🙏
Exactly how I feel with these weird Deja Vu attacks. It happens all of a sudden. First I feel I have experienced that current moment before, then I get into a partial dream like state, and then in a minute when the dreamyness is gone, I feel panicked for next few minutes.
It really does come on suddenly doesn’t it? I get a weird taste in my mouth that goes away afterwards, it sounds similar to the smell you’re describing
Lovely video, & thank you kindly for it. Been having this problem for 6yrs now myself, it's nice to know I'm not alone in this myself. Things can get pretty emotionally hectic sometimes. I hope and pray 2020 can be a better year for you and us all,
Thank you so much for sharing what you experience in those symptoms or what my doctor call as "auras". It just made me realize that I really am not exaggerating for the same feelings like deja vu and that "injected into a dream" feeling until this time. Though my medications have decreased my generalized seizures, these auras are still in me. Hope we get through this together.
This is the first person that described when I go through when I have my auras or partial seizures as there sometimes called this exactly what it feels like being injected into a dream or world that may or may not exist that feel so familiar and like you said you can talk through the first part of it but if it gets more intense you can't really talk but you're still aware
When I first started having temporal lobe seizures I had this same feeling compounded with a very strong smell. Over the years my auras changed to more of a strong thought or memory, if I give in to thinking of this thought or memory I have a seizure. Sometimes I'm able to avoid them if I change my thought process, like start singing a song or anything to get the urge to think of what I'm trying to remember out of mind. I know it sounds strange and I don't know anyone who has this type of memory or thought aura.
On occasion it’s happened to me and I must stop listening to a song that brings back an old memory because it triggers the seizure. I didn’t know anyone else had that issue.
Anyone here who is having constant deja vu and feeling as if you’re re-living your life and that you feel like you had dreamt the exact same situation that you have just experienced. Well I’m pleased to say that you absolutely have a form of epilepsy. Your doctor will probs say it’s anxiety or depression but really don’t know. Instead go to a neurologist and ask them to carry out an EEG test. Then you can get anti sezuire tablets and it’ll stop. I personally experienced live time constant deja vu for 9 straight months before they figured it out. Now it’s as if it never happened.
watching this actually made me bawl, i am 18 and struggle multiple times daily with the temporal lobe seizures very badly because of a 45 minute grand mahl seizure Get better lovely - you are SO strong.
Thank you for the video, it helped me. I've been experiencing what I call "flashbacks" for the past year. It's the aurus but it's like a dream inside my head. I see people who I know and I think I can explain it to my husband and then I can't remember the stuff I've just seen so I sound crazy. Just last night I had an actual seizure in my sleep that caused my entire body to get stiff and I couldn't breathe. My husband was there for me thank God. I'm going to see the doctor tomorrow. I hope you're feeling better.
Thank you so much for the way you’ve describe what’s happening to you. This started happening about 3 years ago. My doctors said I was having stress seizures. I did some research and it kind of described what I was going through. But I knew it wasn’t everything I was experiencing. I started crying when you talked about twitching And the way you talked about being injected into a dream. Because that’s a indication, that I’m leading into seizure. I have felt so alone for the last three years. Thank you so much for making this video. And making me feel like I’m not alone.
The way you speak reminds me of the way I speak when I am hanging on by a couple threads. All I can say is that the Lord has gotten me through everything thus far and I pray you believe and that He helps you too.
Thank you very, very much for sharing your experience. I’m in the midst of trying to untangle the mess of strange symptoms I’ve been living with for years and my doctor finally told me that he thinks this might be what is going on… I’m torn between relief and despair, thinking of all of the years I’ve spent suffering and begging for doctors help and being told I’m mentally unstable and nothing more, thinking of all of the pain I’ve suffered struggling .. there might be an answer, perhaps even help if this is the correct diagnosis. So, simultaneously relieved and terrified, (and a little angry, admittedly) and grateful to you for sharing something incredible difficult to explain and unimaginably difficult to live through.
I hope you're doing really well. I started getting them from decongestants. I collapsed in September and was unconscious. All tests came out good. They recently started again and they are terrifying. I've been depressed and hope I don't lose consciousness again. I got hurt pretty bad. Anyway, thanks to all for sharing their stories. I'm sorry anyone is going through this, but it's comforting to feel less alone. My best to all.
I'm searching the answer of my condition for years. And at last I found this video of yours. Mine just kinda mild I guess. I experience this weird deja vu maybe twice or thrice a year. Everytime it attacks me it feels like I don't feel myself and I'm deafening like it's really like a dream. Then things start to look even more weirder. I can predict the sentence which the person/people around me talk about. Pretty weird, really. What's more weird is that the sentence they spoke is exactly what the people spoke the last time I had an extreme deja vu. I don't know how I did it. Later on I can feel that it's very hot around me and I'm starting to sweat a lot. Then I feel like I want to sleep, my body's so tired like I wanna rest. Really weird. Hope I can counsult a doctor soon cause I'm really worried about my condition even it just occurs twice or thrice a year.
My first episode of 'extreme de ja vu' started last year. I hate explaining it to people because they probably think I'm crazy. But it's as if you're remembering a dream, like it really happened, over and over again throughout the day and your brain is just adding extra elements to this dream, sort of like dreaming when your awake? alongside your stomach rising and feeling sick, sort of like the feeling in your stomach when you go on a rollacoaster. I had a brain scan last year which appearently showed no abnormalities. I had another set of episodes a month ago, Dr refusing to see me as they literally care about covid only right now. Today they've happened again, I feel silly but I've had a good cry, because I find it so scary and I know if I ring the Dr's monday they will fob me off again. They don't seem to understand my symptoms 😞.
I don't have family history of epilepsy but I getting déjà vu many times but I also think that's my anxiety because one day I get déjà vu then I research about déjà vu and I also know about epilepsy then I saw a "real" video of temporal lobe seizure then I scared to get seizure then I getting déjà vu like feeling for some nanoseconds. I am scared because I also have anxiety disorder and I think anxiety can cause seizure.
The irony for me here is that mine started when I got covid, that was almost a year ago. But everything this woman has just explained Is what I experience when I told the doctor he said its long covid, I'm like know. I know full well what is is, it's time to bite the bullet and go for a scan
Thank You!!! This Really helped and explained A Lot of what or how I can describe to my family of how I feel. I had my first chronic seizure 16 months ago and have these minor episodes I can not explain.
I don't know if you will see this comment, but I just wanted to say that I really appreciate your courage to share this online even though you sound like you feel so vulnerable. It really helps people like me who are not familiar with epilepsy learn what symptoms may look like, and it looks like there are a lot of people in the comments going through something similar who've found comfort in your video. Hang in there, I hope things are better now. All the best to you. edit: I was just reading all the comments. you are doing amazing things, honestly changing a lot of people's lives. stay strong!
Thank you so much for posting this. I've been having these deja vu experiences intermittently since Feb this year. I had my first tonic clonic seizure in the supermarket a few days ago and am awaiting a neurology appointment. I felt I was going mad and am so relieved to find other peaple who understand how these episodes feel. Take care xx
So sorry for your illness and thanks for this video. I feel lucky that sof at I'm only getting what you describe here and not the full seisures like you. Stay well, and I hope it improves
It's always been difficult for me to describe as well. Even last night (June 13) I got that "Deja's vu" at work, but couldn't describe it to my coworker, then I had one of the biggest seizures in the last 6 months. Afterwards I didn't remember a thing and could hardly move, think, or speak. I barely recognized the two coworkers who were helping keep me from getting hurt during the convulsions for 15 minutes after it ended
My first "episode" as I grew to call them, occurred around the age of 26?ish? I like the way you described the experience, because when I attempt to it doesn't go so well, and I too end up sounding like some raving lunatic. Question : after the deja vu, I experience this MASSIVE wave of euphoria that consumes my entire body. It is actually a very enjoyable experience if it weren't for the mystery of it all. I want to know if you or others get this wave as I do.
@@dadsstuff5562 hmm, I never suffered any headaches, but I was never prone to them either. But yeah, I find them to be a pleasant experience, save for the unknown aspect of it.
I don't have more than half a dozen a year but have had one a day for the last 4 days. The oddest thing though, after the last one is the euphoria. That is new and, what is oddest about it, is that it is still with me two days later. I just feel happy, more in the moment, sensing my surroundings more. Anyway, I'm glad that you mentioned euphoria because no one else did.
Going through this today... Was diagnosed last December.... I started a new job last month and think I've over pushed myself too hard this month, had a déjà vu seizure this morning... Head is all foggy and I keep repeating myself to people without meaning it... The worst part for me is the headaches I get a few hours later I feel like I can't move.... I hate feeling limited in my life due to my illness 😞
I had my first one last night. I usually have grand mals. It was honestly terrifying and the most confusing thing I’ve ever been through. Thank you for talking about it. I’m still so new to it. It helped me understand it more. Thank you
I have partial seizures which affected my memory really bad. I practiced Internal Medicine for 20 years, and I had to retire because of the bad memory. It started with Jamevu,.....different from de Javu... This is a feeling when you are somewhere you have been, but you don't remember it. Even in your own house! Now I'm 3 different meds, and I still have seizures, but the Jame-Vu is gone. Very bizarre!!
@@mick5435 I'm happy to share you the meds I'm on. I'm on Keppra, Lamictal, and Phenobarbitol. High doses. But working out every day, eating right, and keeping my brain active is crucial to keep seizures at bay the most I can!! Good luck!!
Thank you for sharing. I have a daughter with Temporal Lobe Epilepsy and people keep thinking she has behaviour problems or needs a Psych. Helping me understand how you feel helps a lot. My daughter has disabilities and cannot articulate as well as yourself. Stay brave, you help and support people by sharing.
I’ve only had these experiences when i was a child, and in my late teens. For me it started with a normal feeling of dejavu, but then very quickly just pulls you into what in that moment feels like real dream memories you’ve had and you remember everything about it. Then boom, it’s gone, and you just feel like you came back from a different plane of existence
Wow! Never knew this was epilepsy until now! No wonder my nurse practitioner put me on meds that help prevent epilepsy. I didn't understand why but I've explained so much to her about myself. Thankfully she pays attention!
I had this too and then nearly always it caused me to faint/blackou when I was a teen.. I'm 44 now and have started to feel them happen again without fully blacking out.
I have the same experience but I also get nauseated and distressed when "come back".
I’ve always described it as feeling like I’m slipping into another dimension. I had no idea these were seizures until I started having tonic clonic during sleep.
What do you mean by “real dream memories” and can you explain it in further detail?
I appreciate the way you tell it as being "injected into a dream" and the "story set up" is a perfect description. Unknowing I had epilepsy, when I was younger I'd describe it "I'm going back into an old forgotten dream, I've been here before, but it was in a dream". I called them flashbacks. Thank you for sharing, April!
Thank you both, I have this exact thing. The flashes of a dream you can't remember having is exactly how I feel. I always tell my wife that it's like i remember all the dreams I ever had and that its so scary that if these really are my dreams, that I dream this much. Also, whats really odd with me is sometimes at night when I dream, I literally feel like I'm in the dream for like months or even years. I wake up and its like I was in a coma for years or something and it really freaks me out bad.
This is exactly how it happened to me too. It was so strong I felt nauseous
This! So I’m not crazy.
@@alyssalynn2040 I throw up every single time!
I'm getting an EEG because of videos like this that so intelligently described something so similar to my experience. Infected into a dream does describe these episodes I have of sudden dream recall and it's a lot like those deja Vu feelings and sometimes they're followed by a sudden sense of impending doom. I feel like something is messing with my head sometimes. But it has to be like this And I wonder if they'll have me do a sleep deprived EEG or how it all works. I'm nervous but I want answers.
I feel like crying. This is exactly what I’ve been experiencing.
Same
I get deja-vu. A smell. A feeling like I’m falling. And a perception of looking at myself from above.
All at the same time.
"injected into a dream" is perhaps the best analogy to describe an aura that I have read 👍
I just forwarded your video to my wife to let her know what it feels like for me because your description is the best I’ve heard. I’ve learned to sit down immediately. I have also found if I’m dehydrated and or lack of sleep they are more likely to occur. Good luck young lady.
The best I've heard too. Thanks April.
I've been getting these since I was a child. Never knew what it was, called it "Deja Vu's". My parents didn't really believe me when I explained it to them! Feel so much relief hearing I'm not alone!
Can u explain how urs was? I feel like everything I see I remember it. I feel like I have seen it and then I sit down and start to think where have I seen this. ITS LIKE THIS With everything in my life. It’s so exhausting I’m thinking all the time
Same here, had it since I was a child and referred to it as “deja vu seizures”. My parents didn’t see it as something serious either, but I got checked for epilepsy two years ago In order to figure it out but they found nothing. I think this type of epilepsy isn’t very researched on and there’s little knowledge about it sadly.
I actually understood and related to every word, its refreshing to hear it from another person and be reminded that I'm not going crazy
i suddenly get deja vu and a sudden roller coaster feeling that makes me feel nauseous and hot for a minute. while it happens i kinda stop in my tracks. the tiles on my floor and sometimes the lighting in the room or the smell might trigger me. it feels like im put into a dream (but i cant even remember when i had the dream or if i even had it). it goes away after 2 minutes at the most but after i have it i try thinking about what actually happened and i cant describe it to anyone. the 2 worst parts are the nausea and the fact that i feel i cant really go to the doctor and get a proper treatment if the doctor is incompetent and that itll get worse and i lose my memory and stuff
"Its hard to describe a world that doesnt exist". Yes!!! Im here trying to find ways to describe what im going thru. As the aura happens and i know its gonna happen, i go, "Its HAPPENING!!" Over and over until it ends. Im covered in goosebumps and my face and cheeks get goosebumps too. Im on Levitracitam. I feel ya girl. You described it well actually. People who dont know what it feels like, you cant describe it to them. Its like trying to describe the beauty of seeing something truly majestic out in the world. You cant. Theyll never know the feeling unless they have seen it witnessed it personally. Its wild. I feel crazy trying to describe it sometimes. I hear ya girl.
Thank you for the comment (and the empathy!)☺️
It's unfortunately very common for people to suffer with these deja vu auras for years before they're finally diagnosed with temporal lobe epilepsy (TLE)). Part of the reason is because people generally think epilepsy is just the dramatic fall-to-the-ground and shake kind of thing. They don't realize that there are many other types, too. And like in April's case, many of them don't cause unconsciousness. Thank you, April, for explaining what deja vu auras feel like. I also have TLE, but my auras present as waves of intense nausea and sweating lasting several minutes. I was misdiagnosed at first. Finally I saw a neurologist who tested me and put me on epilepsy meds. After trial and error with several epilepsy meds, my seizures are under control. I wish the same for you.
You are absolutely correct because I used to have vivid deja Vu dreams since I was a child at 45 I had my First seizure
Mind sharing what you tried and failed and what worked?
How did you get them under control?
Yep. When a therapist told me to get checked when I had one in front of her, I thought “she doesn’t know what she is talking about. I don’t collapse and stuff.”
Long story short I blacked out while driving from having one. Thankfully the wires on the side of the interstate saved my life with my seatbelt as well. Got tested, yep. Temporal epilepsy
What kind of meds? I was just prescribed Levetiracetan 500 mg 2x a day and if I don't take it, I have terrifying seizures and confusion
wow... the first time ive heard it described by someone other than me as "being injected into a dream that was already set up"... thank you im sharing this with my family to help give them context.
Omg you are literally the 1st person who was ever able to explain what happens to me!! Mine sometimes wake me up in the middle of the night and are super scary. Sometimes they happen in the middle of the day and I try to tell people what it feels like and they look at me like I'm nuts. To me it feels like DeJa vu mixed with remembering my dreams and they're usually the scariest dream ever I'm remembering and it feels like I'm in actual hell. I always say "I wouldn't wish this on my worst enemy." I also get visual auras where its like there's a ripple in my vision. Usually that goes away only if I go in a dark room for like a half hour with silence like a migraine. Super scary and I'm sorry you go through the deja vu part too.
Sorry you’re dealing with this. Do you take any meds? I hope you’re feeling better
@@diannadolly I don't take anything currently. Thank you for that
@@jeterman29ny well i hope you're doing better :)
Meds do help, but unfortunately this is one of the more challenging versions to manage.
Omg I also woke up from dream once and had this feeling so Weird
I've been trying to find answers for what's going on with me. I get deja vu, accompanied with anxiety, impending doom, and the feeling I am going to die soon. Really sucks ngl
Yeah that’s where I am right now. Such a horrible place to be in.
I have that too m suffering
I keep getting these deja vu episodes....a few days ago I had my first tonic clonic seizure.....waiting to see a neurologist now
Lamictal kind of helps
I’m glad I’m not the only one
FINALLY!! Somebody describing exactly how I feel.
I've often thought of it as stepping into the body of an alternate version of myself who lives in an underlying, coexisting reality.. A much darker, almost hell-like reality that is always there and always _has_ been there.
Holy crap. You hit the nail on the head
Yes
Been there, feeling is almost like claustrophobia.... but , I somehow tell myself right away to ignore it and it's " not happening " and seconds later it goes away... try it!
I have these exact same seizures. 20 years now. It’s awesome to know others understand the same experiences.
Thank you! The power of testimony transcends this plane. You have no idea how many lives you’ve set on the correct course. Your bravery is admirable.
Yes, I felt so alone about this. Thank you so much for sharing this. But no one would believe me. It started happening a year ago and did it ever since. And I hate it.
I've been watching youtube videos of every topic imaginable for years and this is the best one I've ever watched because I don't feel alone or crazy anymore. Describing it to anyone is so difficult, and I'm good with words. Thank you so much for taking the time to verbalize the sensations because, I know all too well, it is so hard to do. The way you describe it is exactly how I experience it. I'm not on medication and haven't seen anyone about it because, though I've had them for years, I can go months without them. Anyway, thank you so much for giving me someone I can point to and say, hey, look, she has them, too.
11 years on since the SPSs began as a result of big brain aneurysm, I still return to these videos just to touch base. What is MOST important is the realisation that I am not the only one experiencing these crazy symptoms. Indeed when they started I was scared to share how they happened in case people thought I was making it up. Listening to you I feel like you do in that that we are not alone and know others who share the same condition, YET, when a seizure starts until back to normal (10-30mins) I feel as lonely as a person can feel. The sense of doom and the feeling of .....’why me?’......’oh no, not again’.....etc is irrational yet real. Yet also there is some strange sense of comfort when one begins ! A part of it is quite pleasurable! Perhaps the adrenaline rush? I don’t know.
I do know that talking and listening and sharing is good especially with those who share the same things. Only those who do , could understand. Whilst others, even health professionals say the do....they don’t!
You are clearly emotional and that’s normal. Suffering this is a burden know doubt and we all must share the burden for each other. Especially in awareness raising so keep posting and keep sharing your experiences with everyone you meet. It’s good for you.
I will be thinking about you here in Scotland. Xxx
I feel very much for you...Thank you for sharing.
Please, keep making videos about this. This helps me understand a friend that I met a school, who has this. They try to explain it to me, and I am trying to understand. This video helps.
THANK you for this video. Ive been dealing with the deja vu feeling for years never understanding what was going on. It didn’t happen for awhile and then it started happening more and i would have 20 of these deja vu episodes in a row. I did research and found out about this epilepsy and i was in shock. I would have never thought this was what it was and i never thought i would be experiencing something like this. I have not gone to the neurologist yet but i Plan to after a bad Spell that left me very out of sorts. Its only been the deja vu feeling and nausea and heat and then not feeling like myself for days. God is good though and has helped me through some very difficult days involving these and i feel renewed knowing more about this. Thanks for this video tho bec it Does feel like your crazy sometimes when you describe it to others. I will be praying for you as well! Stress is definitely a trigger for me so take care of yourself! Its going to be okay and Gods got you and your gonna make it through! Sending love!
Hey! I was just diagnosed on May 12 2019. I have trying to find someone who understands. I haven't had my EEG yet but my neurologist feels that will give the answer. I have been struggling emotionally, short term memory loss, nauseous, uncontrollable pain in my head and leg. I'm so tired of it but I know I have to live with it. Your videos helped me tonight. You saved my life. Thanks.
Those are all symptoms of severe anxiety
I did EEG the problem is that it’s just watching for brain activity for a certain timeframe, which usually doesn’t reveal much since the abnormal brain spikes are rare for some ppl like me.
@@isabels2973 if this is anything like what I have, it’s definitely not anxiety! I can actually feel the misfiring in my head. It tingles and tightens up in my temples and goes across the forehead. Is it triggered by anxiety, ptsd, abuse, head injuries? Possibly! Although it’s not anxiety alone! Definitely neuro and misfiring! I’ve had two separate , 2yrs apart, 7 day 24 hr EEGs that shows it.
I have this all the time, I'm so happy to have found this video because I always try to describe this to my family and they think I'm crazy. WOW THANK YOU. I no longer feel dumb!
You hang in there sweet girl! I'm beginning this journey in my late 50s and it's not fun. I am praying for you. 💖
Thanks for sharing. You just described what I am going through and it really is hard to explain. It is scary because it feels like your brain is being taken over. 😕
Best description I've ever heard. I've had "deja vu " as long as I can remember. I was told that it was because I'm an old soul and have been reincarnated many times. Then I explained it to mt neurologist after my first public seizure and he explained that it was an aura. My wife takes video and talks to him for me since I very rarely remember anything. Apparently I have a few different types. It is scary and I'm not legally allowed to drive making life even more difficult and scary. But I wouldn't want to put others in danger either.
I've been looking for this description for 30 years. Exactly what I've experienced
i’m 14 i have this too and it’s frustrating that people think i’m just insane trying to explain it to them but my main question is if i should be worried
Very good description, it sounded like you were exactly describing my experiences with TL seizures.
The sudden flash of something “injected into a previous dream” is spot on. Also the depersonalization.
Thanks for sharing your story, it’s good to know I’m not alone.
You've got this girl! I know you don't know me but im also epileptic and I've got your back!!!
Thank you for the description. It has now given me the words to describe it to my GP and psychiatrist.
Someone commented that she feels like crying because she's been having the same experiences-----I'm bawling my eyes out right now! I thought I was going crazy! This is exactly what I've been dealing with, and it's been scaring the crap out of me! Thank God I found your channel----now I have something to go on.
Refreshing hearing from you. the auras I have are very euphoric. It feels like people are trying to reach me. I’ll have the same aura over and over throughout a time period. Strangers appear to me in this state, yet I feel like I know them.
I also have tonic clonic seizures, all of which increase around my menstrual cycle
I’m glad to see a recent response. I think I got mine because of Covid.
I’ve been struggling.. for soo soo long. I got diagnosed with Idiopathic Epilepsy [tonic clonic epilepsy] at age 14 and I’m now 26. I was seizure free for 5 years thinking I was one of the special ones to grow out of the dam Illness. I just recently started having my episodes again. What I get before my episodes are Dej ja vu / auras.. they scare the living crap out of me. You described them perfectly and to hear someone say it makes me feel a little better. I’ve talked to some others with epilepsy and they don’t get what I get and it made me feel so out of place an so confused. These auras have been happening more an more recently and makes me feel like a zombie.. like I’m in another world. Thank you so much for sharing this takes a lot to do ❤ I hope you’re doing well
Also having same kind of symptoms
My son just started having this deja vu nonstop for 2 hours straight and he almost vomited.
Everything you said is so accurate to what I get. How you explained it as you feel misplaced and not in the real world sense. Also, how it is so familiar and nearly like you’ve been their in a past life
I haven’t been diagnosed but I have just turned 18 and I can remember having these ‘flashbacks’ or as my dad calls it ‘déjà vu’ moments for years. I feel as though mine come from things that trigger something inside me, I can feel it starting and a majority of the times I can stop it, sometimes I can’t stop it and sometimes if I feel safe and in the right place I let it be. But, it is scary! If I’m alone I feel as though something is going to take me away from this life, I hear voices and think I see these imaginary characters nearly like people are trying to abduct me and I feel as though I might die. I also feel as though when I get this that I am fully aware and not impaired, so I can do anything and I’m able to do everything but it feels like sometimes I’m not in control of my body and it feels as though something will happen. For example, today I had one and it was when my father was driving me to go to dinner, it happened randomly with no tell tail signs and I felt as though I was going to jump out of the car(even though I wasn’t and didn’t have the urge to) but it was like someone was trying to control me. I don’t know if anyone can relate but I’d love to hear what you guys have to say as it is something I am coming to terms with and trying to understand. The most important part is that I am in control and most of the times I can fight it when I feel the sensation start.
Thank you, April. Awesome job describing the experience! Very difficult to explain to others. I get a lot of comfort hearing others talk about it and that I'm not alone. We'll get thru this together!
Perfect description, I feel exactly the same but could never describe and put into words. Thank you
Ever since I could remember I thought I had psychic powers. Turns out it was just temporal lobe epilepsy… *womp womp*
Praying for you girl. I know exactly what your describing. The same thing happens to me. You’re very brave for posting this. Honestly I’m terrified of my seizures and thank you for being so strong and brave
Thanks for making me feel better.. I feel so crappy due to seizure auras/deja vu. I literally get them so often and they are the same repetive thoughts as well. I loved the video very relatable. We'll get over seizures, fighting! 👍
This warmed my heart so much. It's the first time I feel seen and understood. I relate to you so much and this has been so isolating because people don't understand but you understand me so thank you for this. I hope that you have a peaceful night.
Thank you for this video. I feel happy at least someone know what i feel.... When its happen. Thank you so much. Lets survive soldiers. 💪🏻💪🏻
So so happy I found this. Now I can show my friends and mom how it feels! I could never describe it well enough but you did perfectly! Have you ever noticed it come on when you may be stressed or anxious? That seems to be when it happens to me the most. I gotta get to the doctor! Thank you for sharing your story. Definitely makes me feel better to know I'm not alone!
katie konopka Stress is definitely a factor for me but I’ve noticed that I’m even less resilient on days when I haven’t slept well. I’m still trying to get into a good self-care routine because I went from 2013-2017 without any grand mals but I was very staunch about my self care during that period. I wasn’t aware at that time that I was epileptic and it has become quite a challenge since My seizures have become uncontrolled. I now deal with the impediments of memory loss, migraines, and limitations related to the condition like my inability to drive. It makes it difficult to scout out affordable organic foods, engage in community, and find friends-even taking a bath in an empty home is no longer a relaxing option; all of these things were a big part of my stability before. Im still hoping to overcome these things to establish a schedule that can help me reduce my stress and anxiety. I’m glad my video helped, I must admit I still feel very vulnerable in front of the camera.
Oh yeah Katie! Stress and anxiety are major triggers for me. Hard not to be stressed sometimes but getting to the Doc is step one buddy. Keep in contact.
You are not alone , and you are not freaking out . Jeez I remember me having my first attacks and I thought I will be crazy till the rest of my life XD hahaah
I noticed it come when temperature are high in my case,in summertime
Thankyou for making me not feel alone ❤️
I’ve been trying to find people who can relate to this experience for a year now, and I’ve recently found so many of you describing exactly what I experience. I had no idea that seizures could look like this, THANK YOU for sharing. I’m making an appointment with a neurologist asap.
It's like you read my mind. Exactly how I feel and glad that I am not alone. Someone told me the other day that I inspire them because if I can do it then so can they. Know that you are not alone and that we will all get through it together. Keep going for as long as you can. Focus on the moment. Yesterday is history and the future can wait. Remind yourself of what you have also made it through like if yesterday was a bad day for example. That will make you feel strong. You are not crazy or weird. This is something that we can not help and did not ask for.
I have a hard time explaining this to anyone else. This is exactly how I feel when it happens. I’m sharing this with my family. Keep sharing and thank you so much.
Thank you for this video. I’m sorry you go through this too, it’s also SO good to know someone understands. You have described my life.
I’m glad you liked it 🙂Thank you for the comment 💜
I been having my symptoms or whatever it is getting really frequest this past month/week, im happy i found your vid because it helps me know im not just going insane and is probably worth getting looked into.
I feel a sense of relief having a better understanding of what's going on with me and knowing that there's others that experience the same thing. I remember the first few times, thinking to myself that maybe I was having early schizophrenia or dementia and feeling scared that maybe I would go into that deja vu/dream state and not come back. The immersion feels so intense that I was worried I would get stuck there permanently and my physical body would be here, like a vegetable or something, with no way to communicate what happened to me. Now that it's happened several times I feel like I'm able concentrate better during the immersion and I make an effort to remember bits and pieces of the "dream". I'm trying to make sense of where I'm going off to but then the nausea brings me back to reality and I feel completely exhausted and disoriented afterwards. It only last a few seconds but the fatigue lasts for a while after it's over.
Stay strong, by talking about it, you are a winner. I sometimes just lose time and can't recall anything that happened during those few minutes, other times my brain creates this fantasy world usually related to a show watch, or a game I play or played creating scenarios where I interact with the characters, or watch a scene play off in a way my brain believes it should or would go.
I had a right temporal lobe intracerebral hemorrhage almost a year ago that destroyed most of my right temporal lobe. It has left me with similar seizures to yours. I totally understand what you mean. hearing these from you is like someone explaining my seizures. It is devastating. Mine first started with auditory hallucinations but now it starts with the Deja Vu thing. Sometimes it is accompanied by a train of racing thoughts. I hope your situation has gotten better now.
Wow, this video was great!!! I am going through the same exact thing----for 50 years. You will make it! I have had soo many seizures of various types, but the way you describe the deju vu kind is spot on.
Reminds me so much of trying to explain this to a doctor when I was 8 and first starting having seizures, so hard to get out into words and that can be quite isolating in and of itself. I just found your video as I've been having auras recently again for the first time in years, was really helpful to find you talking about it, Hope your managing with your own epilepsy and hanks for making this!
Thank you so much for this video. You've helped me so much, I've never been able to put into words exactly how these symptoms feel but you've hit the nail on the head. It really is like Deja-Vu in like a daydream form. I used to get it bad as a kid, roughly 8 years old, but it soon went away. I'm 24 now, and it's started coming back.
However now I'm going to be able to go to the Doctor and explain myself now. I honestly can't thank you enough!
I hope you're doing okay!
Was just randomly browsing and I came across this. Logged in to drop you a quick message. The "dream" description is quite a good way of putting it. Its like as soon as I get there everything has been pre-written and I know exactly whats about to happen next. It doesn't matter where I am, everything just feels like im viewing it through a familiar lens again.
My aura is around 1/2 minutes so I always get a chance to have a walk around this dream world and gently, steadily prepare for the seizure thats about to come. I usually find a safe space, make it comfortable, lay down and then prepare for the chaos thats about to ensue lol.
Theres a bit of fear but each time im actually surprisingly calm and collected about it. I describe it as the feeling of walking down the street, turning the corner and realising you left your keys in the front door!
It's actually quite funny coming back around afterwards and looking at the horror on peoples faces if they have never seen one before. If its a really strong one i'll be knocked out for the rest of the day/night.
Your not alone. We are out there too. Just keep on doing your thing you will be ok :D.
I really appreciate you posting videos like this. I go through the same thing, and can relate so well. It’s so comforting knowing there are other people out there describing the same feelings that I have. I wish you the best 💕 sending good vibes
Quinn Foster 💜💪💜 Taking one for the team! 😅 It’s difficult discussing things that make me feel so, well, disabled! But I KNOW our community needs more visibility; there just isn’t enough awareness and support 💜💜💜💜💜
You are not alone love, keep your head up beautiful!
I get this same exact feeling with the auras. I've been having these partial seizures for years (probably 11 or so years). I'm conscious throughout and can speak etc just very confused and find it hard to string a sentence together. I get the 'dreamland' feeling u describe too where I can be sat in my house and know exactly where I am just everything seems very strange and a little unfamiliar. I've have an MRI and EEG with no luck of diagnosis so far. I assume it is from a traumatic brain injury i sustained when I was 10 years old. Maybe from, like you, scar tissue on temporal lobe.
I have been having seizures for a few years now. They have been changing lately. I have been going through this aura you are having plus auditory issues, feelings of anxiety and hysteria, chest pain... I am praying for you. Thank you for posting this. I feel less alone now.
I'm 55, writing from Italy. I've tried to describe this stuff for 40 years. Those 'crisis' started when I was 15, in 1979. They went on for 5 or 6 years, then stopped for a while and came back when I was 24. After a couple of years they were gone. Sometimes I still can 'smell' them coming, but they don't. I seem to remember a parrot and and a white corridor, the feeling of deja vu was unpleasant but I had to go through it all, there was something irresistible. After each crisis (sometimes 4 or 5 every day) I felt exhausted and sweaty and all the 'dreamy images' were instantly impossible for me to remember. I'm very touched by your video: after 40 years I've found someone able to tell my story. Thank you, and sorry for my bad english.
You did a wonderful job explaining the deja vu seizures. I've had to live with them and Jamius vu seizures for over 40 yrs. but then my neurologist told me that the
moment I started to feel any type of seizure start up I was to tighten up all the muscles in my body and make my hands into tight fists for a few seconds and if I did it fast enough it would stop the seizure and take my word it has stopped many of these seizures so give it a try. I wish you and everyone out there only the best it's time for the world to wake up and learn about epilepsy and how we are normal everyday people just like them.
I totally understand what you mean. I'm having it now. I had surgey and now wondering how things are going to go. But, thank you for being here for us. It's important!
Bigfoot thank you for the comment 💜 let me know how the surgery works out! 👍 I’ve heard some great things about surgery outcomes and it’s something that I’ve thought of. Doctors were able to find the origin of my partial episodes in my right temporal lobe but they’ve yet to have me monitored during a generalized seizure. I had to move for financial reasons before I got a chance to see if I am eligible for surgery 🤷🏼♀️🤦♀️
@@aprilcoles it took me living in Arizona and my heart stopping during an status episode. That was crazy! But, it's been a few weeks and I'm almost healed enough for the surgey. Seems our seizures come from the same area. I'm honestly still learning. Ha ha not sure if it's the heat cooking my brain but my seizures are certainly changing. So, I love these videos. Again, thank you!
@@aprilcoles hoping that changes for you!
I have this exact same condition
And I have to say that you explained what's going on better then any1 I've herd yet.
I call it an ACID TRIP when the aura hits.
But just know ur not alone.
Much luv 🙏🙏🙏
I'm so sorry for all of us who feel those things, I take levetiracetam 1000 mg twice a day and I have dropped my seizure activities to almost two times a year.... although I do get those scary "deja vu" ..."why am I here" ... "everything is familiar".... "claustrophobia ".... I don't know if it's just me but try this who ever reads my comment... when you feel something similar.... breathe in deep and "ignore the feeling" .... think of something nice like a song or remember a funny clip of you're favorite sitcom... somehow the terrible feeling goes away.... don't invite the feeling, run away from it. IF YOU'RE DRIVING , STOP THE CAR AND RELAX , MAYBE WALK OUT AND DO SOME BREATHING EXERCISES. stay safe everyone... for the mean time, I avoid horror movies in large theaters and driving in the rain.
I take 1500mg of Levetiracetam twice daily as well as 600 mg of Oxycarbazapine 3 times daily. I've been on them since I was 10 that's why. After so long my doses have to be raised by a lot.
Horror movies always caused them for me. Not even because of the lights just because my emotions are a trigger. I tried some of the things you mentioned to stop mine but what helped me most was laying down anywhere and relaxing. I also told people that if I tell them I feel one happening it will happen and to not ask and just let me fight them off on my own. It was just the feeling of having so many people worried about me that triggered them.
Thank you for this video April -- you are awesome!
Those of us in similar situations (and everyone else) are pulling for you.
I have been having these since i was a teenager and im 35 now. It was gone for a few years and then back sporadically. Its happened a lot over the last couple pf months and im trying to get it looked at.
I am keeping a "seizure" diary now and i have tried videoing myself or writing down the thoughts i have as they happen and they make zero sense even to me 5 mins later. I work alone at home so no one sees it like it do 😢
I have seen it described as a euphoric feeling and that again sounds right to me! Thank you for this video 🙏
Exactly how I feel with these weird Deja Vu attacks. It happens all of a sudden. First I feel I have experienced that current moment before, then I get into a partial dream like state, and then in a minute when the dreamyness is gone, I feel panicked for next few minutes.
And usually in that panick stage, I can experience a smell overwhelming me. and when the panic is gone, that smell is gone too.
It really does come on suddenly doesn’t it? I get a weird taste in my mouth that goes away afterwards, it sounds similar to the smell you’re describing
Lovely video, & thank you kindly for it. Been having this problem for 6yrs now myself, it's nice to know I'm not alone in this myself. Things can get pretty emotionally hectic sometimes. I hope and pray 2020 can be a better year for you and us all,
Thank you so much for sharing what you experience in those symptoms or what my doctor call as "auras". It just made me realize that I really am not exaggerating for the same feelings like deja vu and that "injected into a dream" feeling until this time. Though my medications have decreased my generalized seizures, these auras are still in me. Hope we get through this together.
This is the first person that described when I go through when I have my auras or partial seizures as there sometimes called this exactly what it feels like being injected into a dream or world that may or may not exist that feel so familiar and like you said you can talk through the first part of it but if it gets more intense you can't really talk but you're still aware
When I first started having temporal lobe seizures I had this same feeling compounded with a very strong smell. Over the years my auras changed to more of a strong thought or memory, if I give in to thinking of this thought or memory I have a seizure. Sometimes I'm able to avoid them if I change my thought process, like start singing a song or anything to get the urge to think of what I'm trying to remember out of mind. I know it sounds strange and I don't know anyone who has this type of memory or thought aura.
i’m exactly like this.
On occasion it’s happened to me and I must stop listening to a song that brings back an old memory because it triggers the seizure. I didn’t know anyone else had that issue.
I also have this same problem
Anyone here who is having constant deja vu and feeling as if you’re re-living your life and that you feel like you had dreamt the exact same situation that you have just experienced.
Well I’m pleased to say that you absolutely have a form of epilepsy.
Your doctor will probs say it’s anxiety or depression but really don’t know.
Instead go to a neurologist and ask them to carry out an EEG test.
Then you can get anti sezuire tablets and it’ll stop.
I personally experienced live time constant deja vu for 9 straight months before they figured it out.
Now it’s as if it never happened.
watching this actually made me bawl, i am 18 and struggle multiple times daily with the temporal lobe seizures very badly because of a 45 minute grand mahl seizure
Get better lovely - you are SO strong.
Thank you for the video, it helped me. I've been experiencing what I call "flashbacks" for the past year. It's the aurus but it's like a dream inside my head. I see people who I know and I think I can explain it to my husband and then I can't remember the stuff I've just seen so I sound crazy. Just last night I had an actual seizure in my sleep that caused my entire body to get stiff and I couldn't breathe. My husband was there for me thank God. I'm going to see the doctor tomorrow. I hope you're feeling better.
Thank you so much for the way you’ve describe what’s happening to you. This started happening about 3 years ago. My doctors said I was having stress seizures. I did some research and it kind of described what I was going through. But I knew it wasn’t everything I was experiencing. I started crying when you talked about twitching And the way you talked about being injected into a dream. Because that’s a indication, that I’m leading into seizure. I have felt so alone for the last three years. Thank you so much for making this video. And making me feel like I’m not alone.
The way you speak reminds me of the way I speak when I am hanging on by a couple threads. All I can say is that the Lord has gotten me through everything thus far and I pray you believe and that He helps you too.
I myself also suffer from epilepsy. I am praying for you. Be blessed. 4:41
I had those when I first had epilepsy. I know exactly what you are talking about! So many doctors ignored it!
These started for me after too much anesthesia after cancer treatment. You’ve helped me know I’m not crazy or alone in this. ❤️
Thank you very, very much for sharing your experience. I’m in the midst of trying to untangle the mess of strange symptoms I’ve been living with for years and my doctor finally told me that he thinks this might be what is going on… I’m torn between relief and despair, thinking of all of the years I’ve spent suffering and begging for doctors help and being told I’m mentally unstable and nothing more, thinking of all of the pain I’ve suffered struggling .. there might be an answer, perhaps even help if this is the correct diagnosis. So, simultaneously relieved and terrified, (and a little angry, admittedly) and grateful to you for sharing something incredible difficult to explain and unimaginably difficult to live through.
I hope you're doing really well. I started getting them from decongestants. I collapsed in September and was unconscious. All tests came out good. They recently started again and they are terrifying. I've been depressed and hope I don't lose consciousness again. I got hurt pretty bad. Anyway, thanks to all for sharing their stories. I'm sorry anyone is going through this, but it's comforting to feel less alone. My best to all.
I'm searching the answer of my condition for years. And at last I found this video of yours. Mine just kinda mild I guess. I experience this weird deja vu maybe twice or thrice a year. Everytime it attacks me it feels like I don't feel myself and I'm deafening like it's really like a dream. Then things start to look even more weirder. I can predict the sentence which the person/people around me talk about. Pretty weird, really. What's more weird is that the sentence they spoke is exactly what the people spoke the last time I had an extreme deja vu. I don't know how I did it. Later on I can feel that it's very hot around me and I'm starting to sweat a lot. Then I feel like I want to sleep, my body's so tired like I wanna rest. Really weird. Hope I can counsult a doctor soon cause I'm really worried about my condition even it just occurs twice or thrice a year.
My first episode of 'extreme de ja vu' started last year. I hate explaining it to people because they probably think I'm crazy. But it's as if you're remembering a dream, like it really happened, over and over again throughout the day and your brain is just adding extra elements to this dream, sort of like dreaming when your awake? alongside your stomach rising and feeling sick, sort of like the feeling in your stomach when you go on a rollacoaster.
I had a brain scan last year which appearently showed no abnormalities. I had another set of episodes a month ago, Dr refusing to see me as they literally care about covid only right now. Today they've happened again, I feel silly but I've had a good cry, because I find it so scary and I know if I ring the Dr's monday they will fob me off again. They don't seem to understand my symptoms 😞.
I don't have family history of epilepsy but I getting déjà vu many times but I also think that's my anxiety because one day I get déjà vu then I research about déjà vu and I also know about epilepsy then I saw a "real" video of temporal lobe seizure then I scared to get seizure then I getting déjà vu like feeling for some nanoseconds. I am scared because I also have anxiety disorder and I think anxiety can cause seizure.
The irony for me here is that mine started when I got covid, that was almost a year ago. But everything this woman has just explained Is what I experience when I told the doctor he said its long covid, I'm like know. I know full well what is is, it's time to bite the bullet and go for a scan
@@chhandameher6445how are you??😢
Thank You!!! This Really helped and explained A Lot of what or how I can describe to my family of how I feel. I had my first chronic seizure 16 months ago and have these minor episodes I can not explain.
I don't know if you will see this comment, but I just wanted to say that I really appreciate your courage to share this online even though you sound like you feel so vulnerable. It really helps people like me who are not familiar with epilepsy learn what symptoms may look like, and it looks like there are a lot of people in the comments going through something similar who've found comfort in your video. Hang in there, I hope things are better now. All the best to you.
edit: I was just reading all the comments. you are doing amazing things, honestly changing a lot of people's lives. stay strong!
Thank you so much for posting this. I've been having these deja vu experiences intermittently since Feb this year. I had my first tonic clonic seizure in the supermarket a few days ago and am awaiting a neurology appointment. I felt I was going mad and am so relieved to find other peaple who understand how these episodes feel. Take care xx
So sorry for your illness and thanks for this video.
I feel lucky that sof at I'm only getting what you describe here and not the full seisures like you.
Stay well, and I hope it improves
It's always been difficult for me to describe as well. Even last night (June 13) I got that "Deja's vu" at work, but couldn't describe it to my coworker, then I had one of the biggest seizures in the last 6 months. Afterwards I didn't remember a thing and could hardly move, think, or speak. I barely recognized the two coworkers who were helping keep me from getting hurt during the convulsions for 15 minutes after it ended
my crew member so happy to watch I wasn't alone feeling this thanks for sharing this experiences. ❤
My first "episode" as I grew to call them, occurred around the age of 26?ish?
I like the way you described the experience, because when I attempt to it doesn't go so well, and I too end up sounding like some raving lunatic.
Question : after the deja vu, I experience this MASSIVE wave of euphoria that consumes my entire body. It is actually a very enjoyable experience if it weren't for the mystery of it all. I want to know if you or others get this wave as I do.
I would get the euphoria, and it was a really pleasant experience, but the headache and confusion that followed an episode was awful.
@@dadsstuff5562 hmm, I never suffered any headaches, but I was never prone to them either. But yeah, I find them to be a pleasant experience, save for the unknown aspect of it.
I don't have more than half a dozen a year but have had one a day for the last 4 days. The oddest thing though, after the last one is the euphoria. That is new and, what is oddest about it, is that it is still with me two days later. I just feel happy, more in the moment, sensing my surroundings more. Anyway, I'm glad that you mentioned euphoria because no one else did.
@@kevinwhite9195 it is the most Intriguing part of the whole experience.
@@kevinwhite9195 do you get the deja vu before each experience? It happens every time for me.
You are not alone. You explain it well. Even talking about it…
Going through this today... Was diagnosed last December.... I started a new job last month and think I've over pushed myself too hard this month, had a déjà vu seizure this morning... Head is all foggy and I keep repeating myself to people without meaning it... The worst part for me is the headaches I get a few hours later I feel like I can't move.... I hate feeling limited in my life due to my illness 😞
I had my first one last night. I usually have grand mals. It was honestly terrifying and the most confusing thing I’ve ever been through. Thank you for talking about it. I’m still so new to it. It helped me understand it more. Thank you
I have partial seizures which affected my memory really bad. I practiced Internal Medicine for 20 years, and I had to retire because of the bad memory. It started with Jamevu,.....different from de Javu... This is a feeling when you are somewhere you have been, but you don't remember it. Even in your own house! Now I'm 3 different meds, and I still have seizures, but the Jame-Vu is gone. Very bizarre!!
Great to see a fresh post on this topic. What meds are you on if you don't mind asking?
@@mick5435 I'm happy to share you the meds I'm on. I'm on Keppra, Lamictal, and Phenobarbitol. High doses. But working out every day, eating right, and keeping my brain active is crucial to keep seizures at bay the most I can!! Good luck!!