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Let’s talk about that burning smell of rubber

Nice vid. Thanks. Can we know which medication stopped your epilepsy? And why did you have to change your meds if they were working?

To me it happens only in spring and summer

Deja vu,dream,nausea,difficulty breathing….

I have the temp lobe epilepsy due to infection in the brain 🧠 and causes complex partial seizures just like one person who has a daughter is near my age.

Roses are red violets are blue I live my life happily dressed up as a crab watching people devour my family

I wish i could be fastidious about my deja vu episodes. But I always get stuck in the moment and in how weird the feeling is

This is me but an hour

Shit spot On

They think we crazy. Temp lobe epilepsy is touching angels. Scary af, wouldn’t wish it on anyone.

Thank you for this video. I'm waiting for my appointment with a specialist and there isn't much on RUclips about this subject. Of course I've read a ton online but it's nice to hear someone describe their experience. Especially during a strange and lonely time like this.

Thank you for sharing. I’m waiting for diagnosis after having very similar symptoms for the last year. An MRI has shown I have some cavernomas, with the biggest one in my temporal lobe which might be causing mine. It’s so interesting here you describe the feeling, I really struggled to describe the symptoms but they are really similar

My aura is typically starting with a smell, but its not really a smell. Im told its from the pituitary doing in my seizure, because i will also "taste" the smell. And to top off the weirdness of how that sounds, it is like im experiencing it in the middle of my face, like halfway in my head. And for me, it is not a pleasant smell/taste, and i will do the lip smacking, but in my mind, i was literally trying to get the taste out of my head...so i felt like i was concious. I started thing about a particularly strong one i had while washing dishes. I'll narrate like I'm having it right now... suddenly the dejavu feeling of "oh, i remember this moment, standing here, i know something is going to happen"..and simultaneously, "God wants me to.." i don't remember what i did for the next few moments. Its like i would get far enough into it, to lose awareness, im back POW, i am realizing something really weird just happened, im SO tired, i left the sink and went and sat down. That one was when i first started having them as a 25+ year old. They are different at times, in the moments of the intense "I've been here before" i might feel like "i HAVE to say this word" or sentence, just a few moments of going totally batshit crazy quite frankly, speaking jibberish, calmly, then as years went by, i could (and years of meds) i could control myself somewhat. No speaking outloud for example. I still have to move my body. Its a compulsion. I tell you your video, and others like yours, and even comments. I value them so much. Before internet, i was just crazy. My ex husband was ashamed of me. I was no longer his "trophy" wife. Its alright though, God became my true friend, as i turned to Him. And i am a better person for it. I wonder though, does anyone else feel like they may have a different brain now? Like your very being has changed? Personality etc? I almost feel like i have brain damage quite frankly. Well, anyway... God be with you! May we all love our little unexpected "trips" as much as we can. Its all we can do.

Grown on trees Red and sweet Drawn by hand Not a tasty treat

I just don’t know how to get diagnosed. I’ve been having it for 4 years, i tried going to the doctor for it but he made the whole appointment about my weight. And he LIED to me saying there is no such seizure as I was describing.

Had to come back to this video that was the first time I realized what my symptoms were. Fast forward, I had a Craniotomy to remove a brain tumor in my right temporal lobe 3 weeks ago. Still on Levitriacitam but now starting to reduce the dosage gradually as my seizures are still happening but less intense, it's more like constant Dejavu, but without all the other "oh no" symptoms so I'm optimistic that because the source has been removed, the TLE may have gone with it. So now it's a case of are my symptoms residual, post surgery effects? I'm I now overdosing on Keppra and it is actually inducing seizures not stopping them? Or am I gonna need to try new meds. Anyway it's been a long journey but I'm grateful I watched this video when I did because it kicked everything off and lead me to find the Tumour.

My coworker has a pretty bad form of TLE and has mixed partial seizures and generalized. Whenever he has an "aura" at work he gets the epigastric rising sensation and it makes him vomit and he starts pouring sweat. We always try to convince him to go home and rest but he usually doesn't want to.

Hello! Two years after you posted this vid, I find it :) EVERYTHING you described is exactly what I have experienced, and I thought I was weird. Mine started when i was 10 and were actually pleasant enough to experience. Once I hit 18, they would come out of nowhere again and come in clusters. They drained me. Moving forward, I began to have them of a nighttime also when sleeping. It was terrifying. All scans were clear - finally diagnosed with TLE last Oct, (at age 45), and was told that it doesn't show up in scans unless there has been damage done to the brain and diagnosis is through consultation with the patient. EEG picked up activity to back up proof of seizures and a recent MRI is showing possible damage. My meds have been great and i haven't had one in 6 months! I hope 2 years on, you are doing well on your medication and in life :) Thank you for sharing your story. Mel

I had fever seizures as a kid that were full on convulsing and unconscious ending up the ER that I grew out of at 6. I’m now 20 and The last 6-7 years tho been having a strange smell kind of like a dirty vacuum? in my nose every few months that within seconds turns into me basically going to a place/places in my mind with people I’ve seen before (not in real life) and see a place I always see every time it happens... It’s not people or a place that I can remember in detail afterwards or people or a place I cant explain but everytime it’s the same place and I remember and feel the Deja vu in the moment. I explained this to a doctor at 14/15 years old and she seemed very confused and they did brain tests but nothing was going on in my brain at the time of the tests so they found nothing. I get terrified and shaky and know it’s happening again then I panic and feel like I’m going to vomit or pass out. I never had any idea what this is. it’s usually every few months or a couple times a year but I’ve had three so far in the last 24 hours so I’m very nervous. I went to the doctor years ago the first time I experienced this and they just called it an absence seizure and brushed it off but my symptoms didn’t add up with that diagnosis. I need to go to a dif doctor asap now that it’s happening more often. I’ve been searching and searching to find someone with the same experience and answers for years. This video you made actually is helping me make some limelight and feel heard and I might have an idea of what’s going on to suggest to doctors. I’m PRAYING that the doctor can properly diagnose me next time and help me. It’s an embarrassing thing for me that makes me act slightly crazy out of fear for the rest of the day when one happens. You can not understand how thankful I am to come across this video and finally feel like I might know what’s going on and to see another beautiful young woman going through the same thing so I don’t feel alone anymore.

I'd like to give some advise which can be useful for epilepsy Always: - Drink cold water immediately after having a partial seizure as this will cool your brain and body immediately - if you are still unwell or weak throughout the day, drink a frappe or something ice blended as this will further cool the brain and body - watch comedy programs to reduce your stress - make sure to eat a full day meal. - always keep a cold water bottle with you wherever you go especially when going out for a walk or drive You should avoid: - smoking or anything that affects the brain - being around Chemical factories as the smell can worsen breathing - very bright lights - amusement park rides as this can worsen seizures I'd recommend a medication called Lamictal or lamotrigine as this medication is more effective to reduce seizures. Good luck and I hope you all stay well.

When mine hit, it's instant deja vu and strong nausea. They last about the same as yours(30sec-2mins), strong fatigue afterwards, I can tell what people are going to say, who will say it and how I react to it. I also HAVE TO STOP whatever I was doing beforehand; even if I was just watching TV or using my phone, which is why I don't drive(huge hamper on my life, sadly). When I'm grocery shopping with family, I can still walk around, and don't have to sit down(I don't know why...🤨). I think I have drug-resistant epilepsy as well, because I still have the same amount or more of those seizures, even being on 3-4 seizure drugs.

Just got diagnosed with tle today spent 7-8 years (since i was 13) similar effects not the de ja vu part but before this it was getting parred off as mental health or panic disorders so im kinda happy i have a word other than “episodes” for what im actually going through. Watching this video just feels crazy knowing there’s people like me. Gives me so much hope, feel like there’s a chance for me to be normal . Thanks for this amazing video, really helping so many people by just posting this ❤️

Thank you so much for posting this. Did you ever have feelings of being terrified like something really bad was going to happen, was happening (especially if you were alone) or that you were in a dream, or smell something strange like a burning smell or ionization? Thanks again!

Thank you for your information. What medications have helped you?

I hope I’m not being too nosy, but I would love to hear what med is working for you. I’ve always been told that they did not believe I had epilepsy even thought my EEGs all show left temporal lobe slowing (sometimes reaching into the right hemisphere) right before I actually begin to convulse. My symptoms are very similar, I’m looking into a new neurologist and I have other symptoms as well that could be pointing to something larger in conjunction with this. I see on here how many others are saying they have felt mystical or magical energy and thoughts surrounding these episodes and the same has happened to me. Im unsure if I am a good candidate for meds and if it would be worth it for me to try, but I’d love to hear what works for TLE when they don’t even entertain that I could possibly have epilepsy right now.

If doctors blow you off keep looking for a new one until they listen. I got ignored and blown off for years so I sucked it up like the doctors told me and tried to live a normal life. Now I no longer get partial seizures. My brain goes straight into tonic clonic from having so many and not getting the proper treatment. Epilepsy is no joke. SUDEP is no joke. I have stopped breathing. My heart had gotten in the 200s while my blood pressure read 70/30 making me pass out. Keep fighting to get heard whoever is reading this.

This is ME! Finally semi diagnosed @ ER yesterday after having these happen for 16 years. De ja vu, doom/fear, stomach uprising, disorientation after. Then crying right after! 90% are when I’m about to nod off to sleep or in sleep/nap. Involves ❤ too. Have pacemaker from 2009. Thank you for your video. The best yet that sounds like me❤

I have temporal lobe epilepsy and have tonic clonic seizures..They found lesions on brain on temporal side and hoping to have brain resection epilepsy surgery..

Hello, I have focal seizures. Ya that music thing I have and no you can't ever make it out but I think I recognize the song. I have no memory of my seizures my husband tells me what I do. This might sound crazy but during my seizures I see people and talk to them I describe them to my husband I even made food for them. Maybe I'm not alone I don't know. Prayers for everyone. I'm not able to work because of it i just pass out and I was told I'm a liability however I am on disability. I did have one driving and I wrecked, luckily I went in ditch.i was not hurt. I won't drive at all.that really scared me.please don't drive.I've been accused of being on drugs. Because I had a massive stroke 2 years ago so now when I have a siezure it hits that spot where I had a stroke. I loose the ability to walk and my speech is slurred. It's a lot to handle. Thanks for sharing.

Thank you for sharing your story. Do you find that most doctors do not understand an Aura and that an Aura is an actual seizure? I've experienced many Auras but people think it is an anxiety issue or that you're going crazy ☹️ Its hard to describe it to people who haven't experienced one. I usually feel like I'm in a trance like state or in a dream and I'm losing touch with reality. Like I am going to loose Control. I don't like if someone looks at me because I worry that I'm doing something stupid and not aware of it. But, it last much longer than a few minutes seems like hours and I'm exhausted after it

I have this but it usually becomes tonic-clonic within about ten seconds if i don't radically distract my brain from it.

I also was told I was having migraines and nothing was done by either my GP or neurologist until I had a massive tonic clonic seizure and almost died. Still nothing is being done, I am also scared as 5 days a week I am alone. I am wrong I have been given anti seizure medication, which makes me feel terrible I had been having focal unaware seizures for 2 years until they turned into tonic clonic seizures Also had 3 EEG's that showed nothing, but they don't tell you 20 percent do not show epilepsy Here in Canada our medical system is a mess, I don't think my GP has read a paper on epilepsy since grad school Good luck to you

I have that same type. Left temporal. I’m very fortunate to escape a very bad car accident

Thank you for posting this. My "aura" is my entire seizure. I smell smoke that isn't there.

I truly understand when you say normal deja vu is different from seizure deja vu. Its like you are describing my experiences. The seizure deja vu are extremely fearful. They make my heart rate to rise. Makes me nauseated. I get paralysed for 10-15 seconds. I didn't know what they were until I had the 2nd Tonic clonic seizure and the neurologist told me i have epilepsy. I was in denial for so long. This is degrading my cognition and memory. I feel sad all the time. My neurologist said its just psychological. I used to have really good grades, now i just miss out words. Like i have dementia or something. I have a small lump in my temporal lobe. Its benign and not growing. I have my 1 year MRI in the coming week, to check if it grew. Well, thank you for sharing for your experience. Glad to see that I'm not alone.

It may not be as good but it was like very fun and am just happy to get something on paper. Anyway, here it is Apple is something very sweet, Opposite of people, And grow on trees. There are many things that I learn from it, Like if you have someone close, They can detect someone bad. And as apple works on the physical thing it also keeps us mentally fit. It teaches me that, If I stay with bad influence, Then I too will rot, And just like a rotten apple, Will become bitter with my words And lead a life of a touch me not. It also is sweet, Except when it is not. And just like that, Life will be a mystery And you never know if the experience will be good or bad, So don't let worry be something that keep you caught. And atlast, Now that we have learned and slayed, There is this thing we always say. Eat an apple a day, And keep the doctor away.

Do you realize it’s a seizure or can it just feel like an emotional reaction if you are not aware you are having one?

Thank you for sharing your story. It was interesting to listen to because I've been experiencing similar episodes for at least 3 years. Hearing that aim not alone in my struggles is reassuring. I begged my GP for help for over a year saying my migraines and head/neck aches were so bad and I had new symptoms but they blew it off and refused to send me to a specialist. I had an episode where I couldn't move, had rising nausea, couldn't speak, was confused, had autonomic symptoms, etc. and I was in public. The police took me home that time. Still my GP didn't take it seriously The last year it's gotten a lot worse and now I have 3-5 a day. I'm now having out of body experiences, extreme anxiety, memory loss, inability to do basic things, sudden overwhelming fatigue, can't move, etc. I am really struggling to even make an appointment with my new GP to get help for it. It's so frustrating to be completely ignored when you need help. I feel so small and I'm concerned about damage to my CNS.

oh damn, the way you describe it feeling in the moment sounds exactly like what happened to me yesterday. but instead of a song that i couldn’t quite focus on, it was an image with a smell.

Thank you so much for this. I’ve been experiencing this for the past months. Just thinking it was anxiety/panic attacks I got on medication this month. The Deja Vu feeling is one of the hardest things to explain to people. Seeing this video just about made me cry knowing I wasn’t alone. I see my neurologist later this month. I hope I can respond well to medication for this. Thank you for this video.

The "oh no its happening again" made me nearly well up because I know exactly what you mean. They started when I caught covid then stopped for a while then recently I'd been having mini ones a few times a day that last about a second or 2, they are like flashbacks, memories that I know aren't real like I get picked up and placed in somebody else's memory that's not mine then plopped back in my own head again it's surreal. But then the other day walking my dog, a full on aura happened again exactly as you described, the "oh no" moment, the extreme de ja vu, rising sickness, a strange sensation through my body. Then a few seconds after it ended the next 30 minutes were very strange full of confusion and false memories like my brain was tryna deal with what just happened. I'm full aware the whole time but it the most surreal and scary experience. I finally went to the GP today and have been referred to a neurologist, hopefully I will have some answers soon. But the GP looked at me like I was crazy with what I was describing so I am coming back to this video to remind myself that I'm not alone and I'm not crazy 😅

Thank you for this. I needed a video that was clear and concise. I did my three day EEG last week, going in tomorrow morning for my follow up hopefully to figure out if I have this or not.

im starting to put puzzle pieces together.....been thinking I have anxiety but now im wondering if I do in fact have epilepsy.....looking back at my childhood I have had lot of experiences hearing buzzing noises in my head and sense of things being far away spaced out episodes smelling things that aren't there act. im going on 35 yrs old this year and been experiencingthese symptoms still.....def bringing this up with my new doctor on the 6th

I started getting these as a child and just never knew what it was until my twin told me. I thought I had panic disorder but I found out she had this, too. And dejavu is always present.

Yess!! I get Deja vu of having deja vu of having Deja vu. Omg!! The music!! I also here talking. I was diagnosed with schizophrenia because of that but currently trying to change that.

This is very similar to what I have been experiencing at the start of what's been happening to me lately.

Hi Kyra, glad you did a little research into it. I've had TLE for 25 years and I only really started researching symptoms 5 years ago then to add to that I only worked out exactly where my condition was and what was most likely affected based on old reports.

I'm a creator on a break too ♡ solidarity

Why does motor vehicle department allow people with epilepsy drive? Not in Peru

It's so reassuring hearing the story of someone who also experiences these seizures. I also had a horrible year of being pushed to the side & overlooked by several doctors until I found my now neurologist/epileptologist and he took so much time and care into getting to the bottom of things and making sure we figured it out. He had already suspected it, but we did the sleep deprived EEG and we were able to capture the brain waves as each one got worse and worse. Once the seizures were classified as TLE, they then took me off the horrible med Keppra (worst psychological mental health side effects for me for a year) and onto something more targeted for TLE (Lamotrigine) with a slow transition. Not 100% off Keppra, but it is much more balanced now with Lamotrigine and less Keppra. I feel like it is lonely because outwardly it doesn't LOOK like a seizure that everyone assumes is a seizure (tonic clonic) until researched further to know that there are simple partials and complex partials and they are so different than what everyone else assumes. So, as you know, it's hard to describe to someone how it feels when they don't SEE how it feels. I try to remind myself that with other ailments or diseases, we don't feel that person's symptoms but we believe they are there and happening to them...but with these TLE seizures and them being brief and periodical, I feel other people don't take us seriously. My TLE seizures feel like: a strong sense of impending doom/fear, I get hot and a little tingly, a rising sensation, a bit of nausea, de ja vu, I get esophageal spasms as if I'm swallowing repeatedly but I'm not controlling it, if someone is talking to me I can't put their sentences together to remember what they said afterwards (on occasion), I rub my lips together, I breathe deeply and try to focus until it subsides, however I feel like I can be on "auto-pilot" and know that I am doing something (for example, if I'm getting ready in the morning I know that I am doing it, but I stop until it subsides). I really wish there were more people I knew first-hand that I can relate to with it or befriend. I'm so glad you shared this!