The "deja vu' for me is like I am in a dream phase... I have to focus on 1 thing and think about 1 thing... I feel as if I am watching myself from the outside. Thank you for sharing your life story and situation. You are not alone. I am also dealing with PTSD and insomnia with this epilepsy...
Hi Apache, thanks for your comment about your experience! At the worst of my seizures I also experienced depersonalisation (that feeling of watching yourself) and it's quite eerie! I hope you have the support you need to be well, and wish you all the best 💜
Yes i started having these i think last year like i see some dream and i know ppl in this dream but in reality i dont know them,then i have rising feeling in stomach so i need to lay down and also i breath difficult
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.
I agree! They're fascinating when you think about what's going on in the brain! It's almost like all opposites are existing all at the same time and place. It's intense deja vu and jamais vu, there's extreme anxiety and it's also very peaceful. My stomach falls and then rises, I can't move but I can't stay where I am either, if any of that makes sense.
@@KyraThomsen for me it’s like doing something but then you feel like you’ve been there before and you get a flash to all the times you’ve been there ? LMAOAOA WOW I can’t even explain it I did my best like jeez😂😂
@@KyraThomsenda exact este greu să îți exprimi simptomele adică efectele secundare de la medicamente in cazul meu că am multe efecte secundare de la tratamentul de epilepsie si e greu
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❤
Good morning, Kyra. I’m a 73 year old woman with a long ago (age 19, second year of nursing school) history of waking up in my dorm room, feeling cold and had a sore tongue. I was on the floor! Picked myself up and got back into bed, thinking ,WOW, I must have had one heck of a dream! A seizure NEVER occurred to me. No history of fainting, passing out, or even dizziness. Several days/weeks later I had a very strange version of deja vu. No aura. It passed after about 30 seconds. My classmates stared at me, one asking me if I was ok. I had continued to talk throughout the seizure (I rapidly came to the realization that it was a seizure of some type and from this day, the deja Vu experiences increased markedly in occurrence. And so did my efforts to finish speaking if I had been. Friends and classmates started giving me looks each time I had an episode. One nursing instructor reported to the RN who was in charge of student health, that I appeared euphoric and she wondered if I was on drugs. That RN wanted to see me in her office. From there I denied drug use and proceeded to tell her what had been happening to me. She immediately called the hospital chief of neurology and an appointment was made. This was 1969.The neuro m.d. had an EEG done after hearing my story. It showed hyperactivity of the left temporal lobe. And diagnosed a generalized seizure was what had happened months back when I had found myself on the floor of my dorm room with a bitten tongue. Life went on. Finished school, passed my boards despite being heavily medicated with anticonvulsants (it took more than a year to find the right combo to stop most of the seizures. But my career was difficult to establish. After four years I found a unit where I was accepted and professionally I began to flourish. I soon fell in love with a great guy who loved me, seizures and all. We got married, I stopped having seizures, stopped seeing the neuro, had three daughters….life went on…it was like I outgrew the seizures. Around the age of 60, strange sensations began to occur periodically . They were somewhat similar to the deja vu of my younger days. Death had claimed my neuro years earlier. I consulted with another neuro, EEG “normal” so no meds. But these episodes, though less frequent than those of my youth, continued and worried. My once great memory began to fade. I retired at 64(that’d early in the USA) and I greatly feared causing harm to a patient. Many colleagues wondered why I was hanging up my stethoscope. My husband had retired five years earlier and my now married daughters were begging me to retire so that I could know my grands better. Beautiful babies, three boys and two girls. I was already suspecting dearly dementia so retirement was really the best . I did my best to ignore the slowly increasing cloudy memory. I never told my colleagues. Now I’m waiting to see another Neurologist, but I’m preparing myself for a definite diagnosis. My mom died after a 13 year battle with Alzheimer’s, and that hanged heavily on me. There is a connection in reverse …….studies have shown that late in the course of Alzheimer’s patients who never had seizures may begin to have seizure activity. So all of you, who like me, had seizure activity well before old age, likely won’t have this happen. Unfortunately I had several other health issues occur that have contributed to the loss of short term memory. God bless all of you and cling to happiness, it is the best revenge against things that we fight against. 🙏🏻✝️❤️
Hi Kyra, Thank you for sharing your focal seizure experiences. In regards to the deja vu (already seen), I tend to refer to mine as more like deja vecu (already lived) as I feel like I am stuck in a loop that I have repeated over and over forever and I'm remembering something really important but really sinister. When the looping ends (although it feels like it never will) I then forget what I was remembering, it is always just out of grasp. I suffered from postictal psychosis following clusters of TLE seizures which meant having to go into psychiatric care whenever the seizure clusters began. The clusters went on for 2 to 3 days, then the psychosis for 3 or 4 days after. I'd be in a delusional state with stories and false memories playing out in my mind. During my seizures I remember having a lightbulb moment that I should write things down so I could remember them, anything I wrote down though made no sense when I read it later, I'd have random words in sentences followed by number sequences, really weird stuff. Luckily I've been medicated and seizure free now since 2014 (Lamotrigine/Lamictal) but the experiences have had a profound effect on my life. Sorry for waffling on, if you're interested I have a video of me during one of my last (much milder) seizures in my uploaded videos. It has lots of very interesting comments similar to the ones you have on this video.
Hi Pete 😊 Thanks so much for your comment, I always learn so much from hearing others' experiences, it's fascinating how seizures manifest so differently for each of us. At the worst of my seizures I experienced depersonalisation which was quite scary, and I can only imagine how scary false memories and psychosis must be on top of the physical and emotional toll of seizures. I'm so glad to hear you're seizure-free since 2014 - 8 years, woohoo! 🙌 Thank you for mentioning your video as well, I just had a look. It's wonderful to see so many comments from people. As you say, epilepsy can have such a lasting impact on us, it's nice to know we're not alone. Thanks again Pete, and take care!
Heya, from a place of love, please research, & consult your doctor on how to monitor and prevent any vitamin deficiencies that can result as a side effect of your medicine. Thanks for sharing your experience, and it’s awesome you have a way to control this.
Thank you for sharing. What you are describing is as if my wife wrote it. She has recently been diagnosed with TLE, I remember her telling me before we knew she had TLE that she needed to write down things to make sure she wouldn’t forget it later.
@@salesgroup1908 It is strange but somehow comforting to realise that so many of us with TLE have the exact same experiences. It's believed that many religious experiences throughout history were due to TLE seizures. Wishing you and your wife all the best in getting it under control.
Wow you described mine almost perfectly. It’s just out of reach like you said. But why are they sinister feeling? That’s what freaks me out the most. I always feel so guilt ridden during and after
Your seizures will worsen as you age if you don't get proper treatment for epilepsy. Please take an appointment asap with a neurologist. There are a couple of things which you can immediately do on your own if you have seizures. You should: - Dring water immediately after you are stable enough to drink - if you are still unwell throughout the day, drink a frappe or something ice blended as this will further cool your brain and body - watch comedy programs to reduce your stress - it's very important for you to eat a full day meal. Breakfast, lunch and dinner - if you are going anywhere, always especially when you go for a drive, always keep a cold water bottle with you , incase you feel a seizure will take place, immediately drink water You should avoid: - smoking or consumption of anything that can affect your body - amusement park rides as this can worsen seizures - being around chemical factories as the smell can worsen breathing Good luck and I hope you stay well
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.
I'm so sorry to hear all this, it sounds like you're having a really difficult time! You're definitely not alone, and I've read similar experiences on the r/epilepsy subreddit which is a great place for support and to feel less alone in your diagnosis. I know lots of people also seek counselling during their diagnosis. Mental health is so important! I hope your doctors can help you through this hard journey 💜 all the best
I'm not diagnosed but believe I've been having these since 2015, I have ptsd and always thought these deja vu episodes were just flashbacks , but there was never an exact trigger and always happened randomly. Theres a warning feeling that happens before the fear and choking starts, I get a feeling in my head and eyes at first Id feel just stuck and have to close them quickly, then would get an intense feeling of the deja vu/familiarity , seeing a random memory from my childhood or just a memory I didn't even remember but it would just feel so familiar and I can never fully see what's happening in the memory, leading to such a weird feeling in my stomach and throat, along with a feeling like something bad is going to happen, just like a general feeling of intense fear/Anxiety leading to coughing/gagging and shaking my head, saying no no no. I cope today by hugging my boyfriend and saying out loud that everything is okay and do my best to focus on breathing to avoid the coughing, it lasts about 30 seconds to a minute depending on if I can catch it fast enough and calm myself down. the description of this seizure really makes me feel better to know what actually might be wrong with me, I did have a very traumatic childhood and I know I have a lot of mental health issues but finding out about TLE definitely makes me feel so much less crazy lol, these deja vu experiences are so distressing and dissociative, I'm definitely mentioning this to a Dr, I've been keeping it to myself for way too long. thank you for making this video! ❤
Thank you so much for sharing your experience. I'm so sorry you've been having these episodes but am so glad to hear you'll be talking to your doctor about it. My advice would be (if you don't already do this) write down every time you have one of these episodes in future and note as many details as possible: the time and date, roughly how long it lasted, what you were doing before it started, do you remember anything specific about the dejavu/memory, how did you sleep the night before, were you hydrated and otherwise feeling well. This will help you start to see any potential patterns or triggers, and help answer any questions your doctor may have. Brains are so complex, working out why they do what they do is hard! I hope you get the answers you're looking for, and please know you're not alone. Wish you all the best 💜
I'm sorry you had such a difficult childhood, I did as well and CPTSD sucks! I've been diagnosed with bipolar, ADHD, DID, PNES seizures, panic attacks, sleep paralysis and night terrors and I'm in recovery for drug and alcohol addiction. I believe there is a connection between a very abusive childhood, mood disorders, dissociation, and seizures but that's just my opinion. I find breathwork, meditation, exercise, good nutrition, taking supplements, and minimal medications have all been very healing personally. Take care and if you ever need to talk to someone I'm here!
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!
@nbson9715 OMG! You described exactly my sensations when I'm having a seizure. I was recently diagnosed with epilepsy and am on 2,000 mg of Keppra a day, ( one in the morning and one at night) That medicine has turned me into a monster. Horrible mood swings and agitation. I also wish I had someone I could talk about this who would understand
Si eu am luat levetiracetam si m-a schimbat total de abia am reușit să țin pasul cu școala am avut depresie severa , anxietate, atacuri de panică,psihoza , ADHD am zis că mor timp de 5 luni si 9 zile am înnebunit mi-a afectat performantele școlare foarte mult m-a terminat mental inclusiv am fost afectata de depresie inca 3 luni după ce am renunțat la el de am zis că mor si că să nu mai aud de leve nici o dată mi-a luat viața greu mi-am revenit din starea aia
I have temporal lobe epilepsy with grandmal or tonic clonic, I’ve had for almost 4 years, had in my senior year of highschool. The worst part of temporal lobe epilepsy is the depression, and the loss of joy for life. Great video, thanks for sharing your epileptic experience. I’ve only had 5 déjà vu moments outta 98 seizures. It’s nice how after having so many seizures my body isn’t as sore anymore. Takes 2 days to recover instead of the first one which was a month of recovery. I’ve never been able to drive since and also lost every job I have worked in past years due to epilepsy. I love watching inspiring vids lately, makes me feel like I’m the only one. Found out I have right side dominant temporal lobe epilepsy just a year ago. Many medications aren’t working and may have to get surgery. I agree with being in the shower is the worst!! I almost died a month ago from one in shower, my brother in-law thought I was dead when he saw blood everywhere. The emotional pain with temporal lobe epilepsy is fucking brutal!
Hi Tyler, thanks for sharing your experience of epilepsy. Interesting how yours developed in senior year of high school too, just like me! It certainly is a life-changing condition in so many ways, and I'm so sorry to hear all that you've gone through :( you're right about the emotional part being so difficult, you're not alone in that feeling. I went to therapy for a while after being diagnosed which really helped. I also found online communities like r/epilepsy on Reddit and even local Facebook groups. I hope you have some supportive people around to help get through those hard times. Thank you again for your comment. Epilepsy sucks!!
I used to be 3 seizure medications and they have a lot of side effects! I'm not saying they don't help however there is a cost! They made me very depressed, anxious, and apathetic. I'm currently weaning off of my last seizure med and I'm happier and healthier than I've been in decades! I'm not saying everyone should come off of their seizure meds but you do you have a choice! I find CBD with a little THC is very helpful with my seizures but it depends on where you live.
This is, oh my gosh, I am 13 years old, and personally have had episodes so similar to yours, it’s crazy my whole life. This is the closest set of symptoms to my episodes I have ever heard of. I’m getting an EEG sometime soon, hoping to get answers!
Hi Jack, I'm glad to hear you're getting an EEG soon and I hope you find the answers you're seeking. It can be an unsettling time having those episodes and going through tests like an EEG, but keep talking to your doctors and asking them any questions you have, and reach out to the people around you for support :) Wishing you all the best! Take care 😊
You're EEG can come back normal and you could still be having seizures though so don't let the neurologist tell you aren't having seizures because your EEG was normal! Take care!
Oh! I've been recently smelling smoke! And have even went searching, I've been thinking I've been having my seizures again, but I haven't had any "strong" ones, dejavu and the rest... I've been thinking about mentioning it to my doctor, but I've been happy not being on meds for it for so long... thanks
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 ❤️
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.
I used to call it a "deja vu" moment until I found out it was epilepsy a few months ago after my girlfriend watched me get it during a facetime call... I probably remember the 1st one happening in 2013 and only got to know it is epilepsy in 2021. Usually, whenever it happened, and I come back to consciousness, everyone around me just looks terrified and they're like, oh you should probably go see a doctor, but to me, I'm always like why is everyone so worried, I only just got deja vu, and no one ever told me it was epilepsy until my girlfriend did. I get auras a lot and sometimes it goes deeper into unconsciousness and lip-smacking and chewing which lasts for about half a minute and then when I'm back to normal I sort of remember it happening but since I can't see myself, I never know how I look or I have no control over not doing the lip-smacking or chewing. I also live in Australia and the doctors here are pretty good
Thanks for sharing Afam, I'm glad you now know what those deja vu moments really are! It's important to take care of your epilepsy, and you're right, we do have some good doctors and healthcare in Australia!
You're having simple and complex partial seizures! Has your partner noticed if when you're smacking your lips if you tug or pull at your clothes or doing anything else? You NEED to see a neurologist soon! I have both of these kinds of seizures as well as grand mals. I don't know what the laws are in Australia but I find CBD with a little THC is very helpful! Good luck!
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.
Sorry in advance for the TLDR Thank you for sharing! I am new to this community and my story to get here was bizarre and odd including a whole lot of misdiagnosis. The only reason I landed here and TLE is that my fiancee is going through some neurological issues of her own (MS or Pituitary Adenoma tumor, brain scans are being looked at by Neurologist as of his week actually), and so she has been doing tons of neuro research and reading and she witnessed one of my episodes and identified it as a seizure. Since my teens (first one was probably between 13-15 years old) I would have what I always called "fainting episodes" caused by anxiety that was brought on by deja vu. It was the deja vu part that I could always attach to the feeling I would get and no one ever understood it when I described it to them. For me they are: deja vu, nauseau, light headedness, aura, impending feeling of doom, and then either get so faint I need to sit down and breathe through it with my head between my knees or if I didn't stop what I was doing to breathe through it I would eventually faint or keel over and come to about 5-10 seconds later, I am conscious for all of it up until the blackout and the aura/onset period is usually about 1-2 minutes In my teens they happened a lot, lets say I had maybe 25-50 of them over 5-7 years. I talked to a pediatrician at the time and they said since I was so tall at 6'4" that my heart wasn't developed yet so I was getting fainting episodes caused by blood rushing from my head by getting up too quickly etc. Clearly I wasn't conveying the issue. They went away for a long time in my 20s and didn't really think much of them - maybe get 1-2 year, if that? And so I did kind of believe the circulatory explanation. It happened again a couple years ago around age 33, I felt it coming on while going to the bathroom and didn't stop peeing, I ended up dropping to the ground in the bathroom and waking up moments later (so brief that my fiancee laying in bed reading a book right there didn't even notice I was out for the count till I called her attention to it). We went to the hospital and they thought I was experiencing a panic attack induced fainting episode, I told them of the deja vu and they said ahhh yes you are panicking when you get this feeling so the blood drops from your head and rushes to the center of the body as a biological response and if you don't sit down fast enough you cause yourself to faint. This brings me to today, at 35 years old, this morning in the shower I felt one coming on - verbalized it to my fiancee too - and sort of bent over in the shower to catch my breath and try to work through it. She said she heard me drop to the floor and came rushing, opened the curtain and found my sitting in the corner, she said it took about 5-10 seconds before I woke up and she said was surprised at how cogniscent and aware I was after going through that, she walked away to get me a glass of water while I saw on the edge of the bathtub - by the time she came back from the kitchen I was right as rain and it was like it never happened. I may have had about 15-20 minutes of brain fog but by the time I got halfway to work it was a regular Monday. She told me it was a form of seizure, some quick googling of "deja vu causing fainting episodes" got me here and to a bunch of other articles that are consuming my day. I thought I was alone in this for sure, I thought I had some weird form of panic attack but now I know the deja vu is a real aura and feeling and I'm not alone. I currently use medical marijuana and CBD for back pain and anxiety, hoping TLE doesn't prevent me from that because I HATE pharmaceuticals and alcohol.
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
You did a beautiful job explaining how this feels...it really is unlike anything else so it's so so difficult to describe. Deja vu is close but it's more like being inside a memory that you can't quite put your finger on. Mine is on the right side as well so I experience the music...mine is the same song every time and that is common with R TLE. I still have seizures on medication but I no longer hear music when they happen and they are milder and tend to happen when I wake up instead of during the day. Mine also come with strange tastes and smells, and a change in quality of light/colors. Can't tell you how lovely it was to hear someone put into words what is so difficult for me to describe!
Thanks so much for your comment! I've never known anyone else who experiences music in their seizures! How cool :) I didn't know it was associated with R TLE, it's interesting because mine is more on the left according to my scans. There's always something new to learn about epilepsy, brains are funny things. Thanks again for sharing your experience. Although not entirely gone, I'm glad to hear your seizures are milder with medication - take care! 💜
I have right TLE seizures too! They're fascinating when you think about what's going on in the brain. I have extreme deja vu or jamais vu depending on the seizure, I experience extreme panic but also extreme peace, I can't move but I can't stay where I am either, and my stomach rises into my chest and then falls about 40 floors down. That's what my simple partial seizures feel like; sometimes they progress to complex partials where it's like I'm dreaming but awake at the same time. Occasionally they progress into grand mals however simple partial seizures are the most common for myself right now. I'm currently weaning off of my third and last seizure med and I other than a few simple and complex partials I'm doing well. I'm happier, healthier, and fully present in my life for the first time in my life! Now I use CBD and a small amount of THC which works well. Take care and best wishes!
I’ve never ever heard anyone else say the same thing about hearing a song that’s kinda familiar and on the tip of the tongue. My dad would always say he would get this song in his head, but he couldn’t ever place it, and then he would get this weird taste in his mouth after. I wonder if it was acid from the rising nausea. But he ended up being diagnosed with a giloblastoma tumor in his temporal lobe. He would say that he would feel like he was crazy about the song part - it was very comforting in a weird way to have an answer possibly to his song riddle. Thank you for your video
Thank you for sharing this! I also suffer from temporal lobe epilepsy and got this deja vu feeling. And I have this weird memories and hear voices speaking to me, I get scared because it’s bad voices. I feel depression and anxiety. It’s like I falling into a deep depression the whole episode. Sometimes I have also throw up because I felt sick of all the stress. But I really want to speak to someone who suffer from this so I don’t feel alone.
I'm so sorry to hear your seizures are affecting your life this way, I understand how it impacts mental health. I saw a counsellor for a while which really helped me. I hope you're able to reach out to your doctor, and the people around you to get the support you need to be okay. You're not alone 💜 take care, Mikaela
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.
I'm so sorry to hear you've been ignored Renee, that's terrible! If your aim is to see a new GP and push for answers, I hope you're able to do so, even though it will be difficult 💜 Sending you positive thoughts
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.
My doctors tell me it’s panic attacks and nothing has shown up on an EEG. I get them for about 5 days every 8-12 weeks. So, after doing tons of research, I self subscribed myself Levetiracetam, or generic Keppra. I use online doctors to write my prescriptions and the seizures have dissipated.
I was diagnosed with TLE when i was fifteen, in a highschool class i suddenly felt something I'd never felt before, it was deja vu but the stonger it got the more it felt like a dream. I was led to the school nurse and tried to explain to the best of my abilty the feeling, the taste of blood in my mouth and a raging headache afterwards. Fast forward! A couple MRI's later i found a tumor in my brain. I went six months without meds, i didnt even know WTF i was supposed to do. The stronger they got, the more hallucinatory it was, visons of a runaway freight train, for some reason! a claw machine (for stuffed animals) from the inside, and id hear the commotion of young children, kimda like from "The Polar Express". I am now twenty, i have gotten the tumor removed, ive had to put up with big pharma and the inability to do schoolwork. I dont know why this happened but i know one thing. Fuck tumors
wow i didn’t know it had a name, this has been happening to me for almost a year! for me i get a feeling of intense deja vu and i feel like i am not myself and as if i am reliving a certain dream. the sick feeling also gets so bad that most of the time i throw up, and after the episode i have to collect myself because i get so scared. thanks for sharing it is good to know i am not going crazy and other people experience this too! i have a neurologist appointment soon so hopefully they can figure out if it is really TLE.
Thanks for your comment! I'm glad the video helped reassure you, you're definitely not crazy and not alone! Brains are just weird 😂 Those episodes sound really intense! I'm glad you've got a doctor appointment lined up, and I hope you find out what's going on.
I have simple and complex partial and grand mals. If your neurologist orders tests, which he will, even if they come normal you could still be having seizures. Half of the people with simple partial seizures don't know they're having seizures. All of my tests came back normal and I was having grand mals so don't let the neurologist tell you aren't having seizures! Take care and best wishes! Also I don't where you're from but I find CBD is very helpful with my seizures!
I told friends about my seizures. I don't know how serious they took it until I had one in front of them. I always worried that I would find it embarrassing, but I felt so relieved that they saw what I was going through. 0:06 ❤❤ Take care!
I LOVE your description of the Deja vu and comparing it to the feeling of recognising a song you can’t quite hear and I’m going to use that from now on! There’s something so lonely in experiencing something so strange and hard to describe to thyroid people around you so Thank you for giving me the words!
Thank you so much for sharing this, everything you experienced is what I experienced, I had seizures without knowing for about a month and got admitted to the hospital and getting diagnosed with left temporal lobe epilepsy and now on medication. It’s such a lonely feeling and knowing other people experience the same thing as you is so reassuring
I just found out im having siezures, i thought this developed out of the blue , doc said ive probably had siezures and it went un noticed or i dismissed the symptoms, hearing what ur saying ive 100 percent been having siezure that i have dismissed ... The only reason i know now is because ive started having feelings of passing out and although i remain awake my body shakes
I’ve had 3 instances in the past 6 weeks where I get this odd smell, then this incredibly intense Deja vu like experience takes hold where it seems that I’m remembering a vivid dream (or VERY FAMILIAR parallel life) that I can’t believe I’d forgotten about. I’m not focusing on my surroundings while that’s going on, it’s as if my minds eye takes center stage for 30 seconds. I don’t know where to go from here (if anywhere), do I go see my pcp?
Hey Matt, thanks for sharing your comment. If you're concerned about these instances you're experiencing, it's best talk to a doctor if you can. Write down as many details as you can, like when these instances occurred, how long they last and exactly what they feel like. A doctor may be able to help with tests like EEG and MRI. All the best, take care
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.
Thank you SO much for sharing this!! I’ve had TLE for the last 10 years, but was only recently diagnosed last year. The deja vu feeling is absolutely insane. I always thought they were panic attacks so I just ignored them. Turns out they are seizures, who would’ve known?!
The deja vu for me is terribly intense and painful for me. The diagnosis journey is terrible. There’s nothing like not being believed when you describe such a strange sort of episode!
It's actually quite common! I was diagnosed with simple and complex partial and grand mals over 25 years ago. Sometimes I'm still not sure if it's a seizure or just an intense short panic attack! Take care!
My 8 year old son just been diagnosed with temporal lobe epilepsy, first thing he says is he can’t hear and feels sick and can hear music , then he completely switches of and zones out for about 4 minutes and sometimes vomits , he hallucinates , can’t speak or communicate and after he’s confused for 15-20 mins , he’s are focal impaired awareness seizures. He’s had 2 clonic tonic seizures aswell , I’m glad you have this Video so I can get a better understanding of what he’s going through as he finds it hard to explain
Thank you so much for sharing this comment, it made me a bit teary to know that my video helped in understanding what your son feels. It's so hard to put into words, and even in this video I've not explained it perfectly but it's as close as I can get. Your son sounds like he's done very well in explaining something that feels so confusing and unexplainable. I hope your son and your family get the support needed for this next phase after diagnosis. Sending all my best wishes for no more seizures 💜 take care!
After so many years , it changes for me . No more Dejavu , it just comes , Salivating like crazy and being just blank , and aware of what is going on , but I dont have the same episodes like I haad 3 years ago ...
Idk what is going on but I have that episode but hours. Seizing over and over: jerking limbs, tremors and confusion. I am losing my memory and confused. The doctor saw my mri and said I had brain damage on my temporal lobe and is likely progressing. So diagnosed with epilepsy. So I just sit there shaking and seizures in my limbs, even my neck. I look like I'm being electrocuted over and over. For hours. I get so exhausted. I have aggravating triggers, like heat, etc. But sometimes I'm chilling and it starts slow and just keep increasing until it plateaues and sits there for hours like that. I feel like I'm have have mini clonic tonics for hours. Whew. I'm trying to find anyone else who goes through this
Thanks for sharing. I think I might have this. I'm afraid no one will believe me because I suffer from mental illness and Dr tend to dismiss me a lot. But I get this i know what you mean about the deja Vu feeling. Except it's not music with me. It's the most intense deja Vu I've ever had and then I get hit with a feeling of impending doom. Something bad is going to happen . I feel sick, depersonalized, and then I just don't really know what happens. It's never happened around other people. I do think I sort of switch off for a min. Then it's over. I think. Had other strange things not sure if they're related. Like I'll look at my hands and they look just weird. Almost like they're not mine they're so big and it's like I'm watching them in a movie. Idk. I get the deja Vu aura thingy like at least once a month. Idk if I need to do something about it. Idk if I have seizure activity in other ways. I never even knew this was signs of anything. I was thinking of seeing a neurologist anyways so maybe I'll have to go see one and bring this up. But at least I don't have this often like you. But I'm still concerned I'm not recognizing my symptoms. I live alone. And I still drive. That's so scary.
Thanks so much for your comment, it can be hard to know what these feelings and symptoms really mean unless you get a professional opinion, because everyone is different and brains are weird things! I'd recommend talking to a doctor or neurologist/specialist and specifically asking about TLE if it's something you'd like to learn more about. Take care :)
I'm pretty sure I have epilepsy as well I think I just found out I get this weird Deja Vu sickness once a month as well just last week I was on my way to my sister's house and work and I was having one of those Deja Vu sickness episode things whatever you call your seizure I never really thought anything of it I thought it was just something that happens every now and then when I get sick now that I know it's a seizure because on my way to my sister's house I crashed my car a block from the exit of a freeway I don't remember much I remember a police officer asking me if I was okay and I told him I didn't know what was going on then I remember being an ambulance and strapped to a gurney they will release me from the hospital when I had another seizure then I was resubmitted in a different hospital for 5 days I just got out of the hospital yesterday and I've just learned now that it's due to epilepsy they suspended my driver's license and now I am on leave from work as I figure out all this doctor situation and medication now glad I'm learning more about it now I know what to expect should be more careful when those feelings of deja vu but it's not just the deja vu get hot and sweaty or cold sweats sometimes I start shaking or just stare off into space or forget what I'm talkin about mid-conversation very scary thing it's been happening for a while for me and I just learned what it is I really don't want to go through it anymore and I know it's going to happen again totally changed my life should have died on a freeway thank you Jesus for keeping me alive
@@xsmileyonex Thanks for sharing your experience, that sounds really really scary! Thank goodness you are okay! Everyone's diagnosis journey is different, and it can take time to get used to, especially with medication and your licence being suspended, it sucks! I've found it helpful to reach out to the Reddit community in r/Epilepsy, it's a very supportive group. Keep learning more about your seizures, keep talking about it with your doctor, and know you're not alone.
That definitely sounds like simple partial seizures to me! Do you have a neurologist because if not you should. Also I know some have to drive and it depends where you live however I wouldn't be doing a lot of driving if I were you(but that's just me). Simple partial seizures can very easily turn into complex partials where consciousness is impaired. Take care and best wishes!
I get the deja vu too like so many times a day... And it's everyday but then a day of nothing. But I feel the same about the something is going to happen. Like death is nearby.. And I'm so depressed nothing like I've had before....
My 10 year old was recently diagnosed with epilepsy/ temporal lobe tumor. He had seizures from age 1-4 years and they stopped. The tests always came back negative for anything. His seizures were always so random and we never could figure out what caused them. He went almost 6 years without having one to having one this past February. I was so lucky to be with him when he had it. I immediately called the doctors and we did test after test and again there was never anything on them. He had 6 in a weekend and was so confused. I called that Monday and they ordered a brain mri the next week. After the mri they called us a couple of hours later and said they saw something on it. My husband and I cried. Relief they final found something but terrified what it was. We went in the day before school with the neurosurgeon and he went over his scan and showed us the tumor in his right temporal lobe. He called it a ganglioglioma tumor. It is a very rare tumor and causes damage to motor, memory, emotions. We learned that my son is a miracle. He doesn’t struggle with any of those things. So we are hopeful he will be a good candidate for surgery. He is just finally being able to tell us how he felt before the seizure and how he feels after. I was scared to send him back to school because of how confused and tired he is after but we are blessed that he has a twin brother that is in the same class and keeps an eye on him. I have been trying to find a group for kids or adults with the same tumor. No luck. So thank you for this video I learned so much.
What a difficult time you've all had 💜 I hope you do find the support group you're looking for, and hope your son is able to have the surgery he needs 🙏 Wishing you all the best 🙏
Mine are déjà vu sort of I guess. A very strong familiar feeling but more dream like where things weren't right. Hated the feeling. I still get the pre aura sometimes but been a couple years since starting meds. Always enjoy watching videos of people talking about TLE because it's so hard to describe.
You're spot on, it's SO HARD to describe but I definitely relate to the dreamlike feeling. Now and then I get regular deja vu and realise just how different it feels to 'seizure deja vu'. I also love hearing people talk about it because it's fascinating how differently the symptoms manifests in each of us.
Thank you posting this. My partner has the same symptoms of you and we are going through a difficult time trying to find the best treatment for him. He stopped driving and it took such a toll on him. Hearing you talk about how you have been able to manage and now drive, gives me so much hope for him.
I'm glad my experience could provide some hope in a dark time! It is so difficult on so many levels, but just know neither of you are alone in this. Not driving is so much more impactful than it seems on the surface. I myself felt a huge loss of independence and took a hit to my self esteem. It's also when I started seeing a counsellor, which really helped! I wish your partner all the best. There is light at the end of the tunnel 💜
@valeriemacaraan Please check with his neurologist about a medication called Lamictal or lamotrigine as this medication is more effective to reduce seizures There are a couple of things which can be done immediately. After he has a seizure, he should: - drink cold water immediately as this is the first liquid which will relieve the pain of seizures - if he is still unwell throughout the day, he should drink a frappe or something ice blended as this will further relax the brain and body - he should eat a full day meal. Breakfast, lunch and dinner - watch a comedy program to reduce stress - he should always keep a water bottle with him, especially when going for a drive He should avoid: - smoking or anything that affects the brain - amusement park rides as this can worsen seizures - being around Chemical factories as the smell can worsen breathing Good luck and I hope he stays well
@@KyraThomsen I hope your health stays well. Thanks for your videos as this gives us the opportunity to discuss our difficulties of epilepsy and share information which can be helpful. Please check with your neurologist for a medicine called lamotrigine or Lamictal as this medication is more effective to reduce seizures If you are facing weakness or any difficulties after having a seizure, you should: - always drink cold water immediately as this will cool your brain and body immediately. - drink a frappe or something ice blended as this will further cool the brain and body - watch comedy programs to reduce your stress - eat a full day meal, it's very important not to miss a full day meal You should avoid: - smoking or anything that affects the brain - amusement park rides as this can worsen seizures - being around chemical factories - very bright lights Good luck and I hope you stay well
I believe my fiancee is experiencing some kind of complex partial seizure. However, she is absolutely oblivious to it. It has taken me 2 years to get her to go to a neurologist.
I haven't been diagnosed yet, but mine are visual and I never knew there were different types! Instead of hearing a vaguely familiar sound or smell, I feel like I am picturing a dream from my childhood. As soon as I notice them, I get sucked in and can't help but to spiral into them. They've never been serious enough for me to seek help until the other day when I was driving into work and completely forgot where I was going and why I was driving. Never scheduled a doctor's appointment so quickly.
First of all, I'm so glad you're okay after that driving incident and secondly good on you for booking a doctor's appointment right away! So important to look after our health and others safety. All the best at the docs!
Emily How you describe your symptoms sound just like mine.. I used to try and figure out what I was seeing in my minds eye which actually prolonged the seizure and made me feel very nauseous. I've been having these episodes a few years and my doctor has said there is no medication to give me but advised me to just ride the seizure out and not to think about what my minds eye could see! Doing this has help the nausea although not eradicated it. When the seizures happen 4 to 8 times a day, between 4 and 15 seconds long the upside of this I can go 4 to 8 months with no symptoms
I’ve had temporal lobe epilepsy for 28 years, I’m 53 years old now, and I’ve been told by Doctors that they’ll i’ll probably never stop having seizures,. I have them every day, so I had to give up my job and give up driving. I’ve been tried on so many different types of medication that haven’t helped me some have even had bad side effects. I sometimes feel useless, having to rely on other people if I need something as I can’t go out own as I risk falling over.
Such a difficult thing to go through, day in and out for years. Thank you for sharing your experience with epilepsy. You are certainly not useless, and not alone. I wish you all the best 💜
I'm sorry you're going through this! Seizures can be challenging however I never let them stop me from doing anything, except driving, lol. Thanks to perimenopause I've started having seizures again however CBD and a small amount of THC usually helps! I find eating well, taking supplements, meditation, breathwork, exercising and doing yoga every day, spending time in nature and limiting my screen time have all been very helpful! Take care and best wishes!
I’ve been dealing with the tle for 4 years now. The deja vu that comes on so suddenly is just so hard to explain. Most of the time they happen usually come in clusters were they happen multiple times a day and then I won’t have any for months after that.
Ive been trying so hard to get my doctors to listen to me. Ive seen 3 PCP's in the last 5 years, and no one has taken me seriously. I had 3 of these "episodes" today, one I just finished. Does it happen multiple times a day for a while and then vanish? Ive been documenting every single one. They mainly happen twice a day for a week and then vanish for a month. My right arm tingles, the back and sides of my head tingle, the deja vu (which feels like a dream literally coming to life), I KNOW im going to get it hours before it happens, too. The nausea rises and falls, rises and falls and I just feel like crying. Thank you again, Its really heartening to know that someone else feels the same way you feel. No one in my life has ever experienced this.
Getting diagnosed can be so difficult. Don't give up 💜 If you can, tell your doctor outright that you want to be referred to a neurologist to test for epilepsy or other neurological conditions. Keep trying. It's not uncommon for tests to come back inconclusive, but you've done the right thing by recording as much as you can. I wish you all the best. You are not alone
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.
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 😅
I hope the neurologist can give the answers you're looking for, not having a diagnosis for what you're experiencing can be really tough! If you're not already, try and document as much of your experience as possible (record the time, date, length of the episode, what you were doing before it started, even things like did you get a good sleep the night before, had you drank alcohol etc.) that can help you see patterns, which can be helpful when talking to doctors. Keep pursuing answers, and lean on your support networks. Good luck! 💜
@@KyraThomsenUpdate, I eventually took myself to the Emergency Room because I was having so many clusters of seizures and I couldn't wait on the GPs initial "migraine" referral anymore. After 3 CT scans they found a mass in my right temporal Lobe, currently waiting for the neuros to assess the scans and make a diagnosis POA, but whether it is Epilepsy or something else. I am most certainly having Temporal Lobe seizures, and they have gotten worse, more frequent. Medically advised not to drive or work so just got to sit and wait 🤷🏼♂️ One thing that I wasn't having until the last month or so is a newer symptom, SOUNDS! Music and noises can trigger them and sometimes when I have a seizure I hallucinate songs, and even smells/tastes and my whole body feels like it isn't mine, it's so surreal
@@callumsullyfitness Oh my goodness how absolutely awful!! I'm so sorry you're going through this. But I am glad to hear you've got doctors looking for answers. Sitting and waiting is the worst. I hope the test results lead to steps and actions so you can begin a new path to not having seizures anymore. Gosh, it must be so difficult. Thank you for coming back here with an update, I wish you all the best for what the future holds 💜
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
I did a three day EEG and my neurologist haven’t seen seizure activity on my EEG because I didn’t gave the episode. I had it twice this week and while sleeping. It’s the same symptoms you describe. I never know when will happen but it never does when I have an EEG done!!! 😩
@Just Peachy Subliminals I am pursuing this because I think is affecting my memory. When I drive I can’t make decisions. I am seeing an epilepsy doctor, not just a plain neurologist. I don’t have depression or anxiety. My life is actually pretty good. I have it since I was a little kid.
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.
They could never make me have a seizure with sleep deprivation etc. It just wouldn't happen, and I also went a good while without any and thought that whatever it was I didn't have to deal with anymore. I was lucky that my neurologist believed me and gave me medication. Long story, short.. I'm off the meds and have been having seizures again, more often but not daily, and not enough to make me go see anyone about it. Sadly, the doctor who believed me is no long practicing in the state, so that's depressing considering the previous one didn't believe me and was basically a jerk about it all. I'm glad you got a diagnosis and the medication is working for you. Thank you for posting this.
I am now absolutely convinced that I have this (I also have tachycardia so I know my brain likes to generate electrical signals) and also that my dad does. We’re also both autistic so I believe there’s a link there too. We both hallucinate in semi sleep states and have tendencies to entertain delusional/magical thinking and I understand from reading Carl Sagan that there are links there. 🌟
I’ve been having deja vu for the last couple years now, there’s been a few instances that I may have changed some things around, that I could have done but I didn’t do, it’s really weird and it’s almost like paranormal for me, but it’s not. I can take it much deeper than that and explain in full detail, the only thing that I do know is I did have a NDE when I was young, right before I was adopted, it was due to a accident I had.
Wow. Just wow. I’m on lamictal. Have been since I was in college. I’m 41 now and can feel my left temporal lobe light up. A seizure sounds right. My uncle had epilepsy.
never been to a doctor for this.. when i get overwhelmed, anxious and tired i always get it. the exact same deja vu everytime. im unable to talk or respond. mom told me my head is shaking everytime i get it. when i get back to my senses i speak nonsense its difficult for a few moments. i dont really remember what i was doing when i had the seizures. but that feeling of deja vu is something i cant describe to anyone.
Thanks for sharing your experiences of deja vu, I've definitely heard other people describe some of those symptoms you're describing. I hope you're able to seek support or see a doctor if you can or want to. It can be scary not knowing what is happening in these episodes but just know you're not alone. Take care
Dear Kyra I was diagnosed with Temporal Lobe Dysfunction when I was 50 bit had it since I was 12, I had cognitive, and memory problems in school, I was having Migraines, who.around menses, but over time these migraines became 24/7, I don't respond to ANY meds, and experienced nausea and vomiting.I would have to go to ER and they would give me morphine.over the years it got to the point the migraines put me in bed! Finally my doctor at 56 allowed me Hydromorphone 24/7 and it made a big difference, I also have Intermuscular Toridol for home use.My blood pressure goes sky high when the migraines get bad so I'm on a LOW dose blood pressure medication.I think I'm having episodes in my sleep I always wake up with a hang over feeling.My eegs are bad but I'm not aware of seizures.It seems activity physical makes my pain worse so I have to lead a quiet life, I can't work, or travel, it tires me out and leads to pain.My neurogist said "no wonder you have headaches" you have TLE, apparently my biological mother also has TLE.
Wow Freda, what a journey you've been on with your migraines and seizures. I hope your doctor can help now they've identified TLE. All the best to you 💜
@@KyraThomsen thank you for your kindness, yesterday my husband and I had to go to the bank to discuss retirement strategies, we'll by the time I got home I was tired right out, and quickly out of the blue had a bad pain flare and needed a Toridol shot I'm allowed to have at home, today I have the hang over affect which takes a few days to get over.i was recently approved for the Disability tax credit in ontario.w3 really are warriors!! ❣️
Kyra, thank you so much for sharing your experience. I've recently experienced 3 seizures in a 24-hour period one with severe Deja vu, very amplified music that factored into it. (We do have very quiet music at the gym, but this was very overwhelming along with the Deja vu, a very intense confusing smell/taste, retching stomach and dizziness while on the treadmill. I later had a mild one while falling asleep (Just the smell/taste and retching) and another woke me from a full sleep. That was a month ago, and nothing since, other than a little confusion over the next week or two, but that seems to have subsided. The very first time for me was 40 years ago in the library when I was 19 while studying physics. It was a revelation to hear you say that your first seizure was also in the library. (Were you studying something very technical?) Hearing you talk about seizures in the shower also made me consider another experience that I thought was disassociated. Several years ago I was showering, felt hot and flushed, my stomach started retching and I was a dizzy. I felt my head hit the tile a few times on the way down and I was confused because I didn't know I was falling. I next heard a distant voice that got louder over time. My wife was calling my name and I was crumpled up on the floor of the shower. No clue how long between passing out and coming back, but I thought that might be related to a flu I was just recovering from. Watching your video almost gave me a (more normal) sense of Deja vu, since your experiences were so terribly similar to mine. You're like the sister I never knew. I have a referral for a Mayo neurologist. Hopefully I'll hear from them soon. Best wishes on your journey.
Thanks for your comment and sharing your experience with epilepsy. There are lots of similarities in our stories :) I wish you all the best with your neurologist appointment. Take care.
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.
Was just diagnosed a week ago after having two clonic tonic seizures in my sleep. My focal seizures are very similar to yours, the weird music is also so strange during my focal seizures, very very scary stuff. I fucking hate it. Love you ❤️
Having this diagnosis is a pain. I have TLE, primary focal aware with secondary generalized. So 99% of the time, it’s just a focal seizure…but 1% of the time, I go tonic clonic after the deja vu aura. Watching this video after having a few breakthrough seizures this week 😢 I had just gotten them under control and had been given permission to drive again. I consider this an “invisible disability”, as people don’t see how it affects us. The fatigue, severe headaches, anxiety, medication side effects. THANK YOU for sharing your story to help us feel less alone.
Oh no, I am SO sorry to hear you've had breakthrough seizures, especially after only just driving again, that sucks! I hope you're recovering okay. Please take care of yourself 💜
Thank you for sharing your story! Mine is so similar - I had my first noticeable complex partial seizures around 16, they intensified and got more frequent until I went to my GP, got referred to a neurologist and got diagnosed at 17. I also respond well to medication and I've never had a clonic tonic seizure (that I'm aware of, bearing in mind they can happen in your sleep).
That's where I'm at now, started happening again and the GP just referred me to the neurologist so we will soon see what the hell is going on in my mind 😅
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.
That is an awful experience. Are you able to see another doctor? Is there someone who can attend with you, to make sure the doctor is held accountable to provide a path forward? Definitely ask for referrals for a specialist if that's possible for you. And take as much evidence as you can, such as exactly how frequent your episodes are, how long, what time of day, etc. Getting diagnosed is a difficult journey but if you want answers, don't give up! You can do this 💪
Thank you for your video. My daughter was diagnosed in May with temporal lobe focal epilepsy. So I watched your video to try and get more info on it. And it really helped me but at same time help me realise what I think was migraines may be sezuires. Not sure though got an appointment on 3rd of November. Whatever mine is like a day dream I can not get out of. I am aware but I can not tell anyone that I hear them. I have had the tummy pain that feels like your chest hurts a bit like bad acid reflux. Reason I thought was migraines was. I was having like blurred vision slurred speech pins and needles in my arms and hands and num face and tongue. Felt a bit like a stroke but I've had a few of these episodes I felt maybe the bright lights and work plus being tired. Can get like pain in my head but more so after its progressed it usually starts with a fuzzy head feeling then blurred vision then no sight in one eye then all the rest. But most of the time its like feeling like I can not concentrate like my Vision out of focus
I can imagine that's a strange and scary sensation! Probably best to discuss with your doctor, I hope you can find answers. All the best to you and your daughter on her journey with TLE 💜
Thank you for sharing. I was just diagnosed and believe this has been going on for at least a decade, and doctors couldn’t figure it out until I got really bad recently.
Wow! I'm so glad you finally have your diagnosis, it can be so hard not having a name for your experience. Wishing you all the best for the next chapter of your TLE journey :)
My “oh no” feeling is always followed by a smell, one that I can’t describe but it is incredibly familiar, followed by deja vu, and then I would feel faint. Whenever I get deja vu now, I have to tell my partner what kind of deja vu I get, lol. Interesting your “hallucination” is sound based, while mine is smell based! I had my first grand mal seizure about a year ago, and was diagnosed shortly after (thankfully). I am going to film a video on it shortly, thanks for inspiring me to share my experience too!
That is fascinating! Brains are so complex. I'm glad you were able to be diagnosed after your grand mal, and hope you're managing it well. I'm sure a video of your personal experience of epilepsy will help others going through the same thing :) all the best!
Hi! This is exactly how my episodes happen. It’s crazy to find someone who knows what I feel when it happens! I’ve been having them for almost 3ish years now, but I haven’t seen a doctor yet. They’ve progressed recently, and now my memory is being effected and the frequency of episodes has gone crazy! About once a month, I’ll have 8-10 episodes in a 24 hr period. I was wondering, at what point did yours progress into a grand mal? I’ve never bothered with a doctor, but since this progression in recent months I’ve been getting really worried :(
@@breannadowns7365 Hi Breanna! I'm glad LJ's comment has resonated with your experience! It's always good to check with a doctor to get the best advice, especially a neurologist if you can, and especially if what you're experiencing with your memory is starting to worry you (long term, temporal lobe seizures can affect the hippocampus in the brain which is responsible for memory). Again, highly recommend talking to a medical professional to know for sure because brains are unique lil things 😉
@@breannadowns7365 I had been having symptoms (deja vu, weird smell and intense fear) for around two or three years. I would have auras a few times a week usually when I was really stressed out, short on sleep, things like that. When I had my grandmal it started out with these auras, literally nothing was different about it. That is what was scary for me and partner (who thankfully was there). I would suggest seeing a neurologist if you can. I know sharing symptoms like this can be weird, especially not having an answer right now, but it could get you one and save your life. Repeated seizures will absolutely impact memory (from what I’ve researched). I’m on medication now and haven’t had any breakthroughs for around a year. It has changed my life… had I been in a car driving while it had happened… I just can’t recommend telling your doctor or neurologist about what you are experiencing enough. Best of luck, feel free to reach out whenever!
Thanks for the vid. Do any of you find that you somehow instantly forget the seizures and also that your memory as a whole is really bad at times when you have them more frequently?
Thanks for your questions Amelia. I personally don't forget my seizures after they've happened. I have noticed general poor memory when I was having seizures very frequently (multiple times a week) and also for the first few months after starting new medications but after a while this went back to normal. The main memory issues I noticed included forgetting the names of things (TLE affects the hippocampus, the language center of the brain) and losing track of what I was saying mid-sentence. At work, I started writing down all the small details to do with tasks so I could easily jog my memory. But like I said, this has got better over time since not having seizures.
I have TLE, I sometimes remember my seizures and other times i can feel them slip away from memory and no matter how hard i try i can not remember what it was even tho it was so intense in my head at the time
My memory has definitely been affected however I don't know if it's from the seizures or all the years of pharmaceuticals. I'm actually weaning myself off of numerous medications and I feel better than I have in decades! I find CBD with a little THC is very helpful with my seizures but it depends on where you live.
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.
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
Hey, since you haven't had a seizure in so long were you able to get your driving licence back? Just as I typed that question you said you did in the video. 😅
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.
Thank you so very much for sharing your story. This has been fantastic for me to watch. I too have TLE and just needed to hear that someone else has and does experience what I do. So similar. Thank you for the links. Best wishes to you.
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.
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’ve been having these exact episodes for 2 years, never though too deep into it, but yesterday i had a bunch of water like liquid pour out of my nose for no reason, so i’m extremely worried):
My seizures are pretty much the same as yours and are triggered by music as well. I was curious, if I don’t go the doctor for my seizures will they cause damage long term without medication? I’m scared to go to the doctor because I really don’t want to lose my license I’m young and in school and need my car for that and just social life in general. driving and listening to music is my favorite thing to do.
@TH-camdancedreams I understand the fears you have, and there's no denying that being diagnosed is a challenge. I highly recommend you do some research about what can happen if seizures are left untreated, particularly effects on the hippocampus. In addition to that, driving while experiencing seizures is a real danger to yourself and others on the road. You have to choose what you do. If I had to choose again, knowing that I would lose my licence for a temporary period but that being medicated would keep me safe, I would choose to see a doctor every time. Best of luck to you
I've had left temporal lobe epilepsy for most of last 20 years. The first few years only had the focal onset awareness seizures and didn't realize I even had epilepsy. Then complex partials suddenly began and brought aphasia and hazy memory into the partial seizure experience due to Wernicke's area and left hippocampus getting affected. Temporal lobe partial seizures can become generalized tonic-clonic seizures, mine did very often. I had two operations on left temporal lobe one being Amygdalahippocapectomy which removed the left amygdala and hippocampus, that ended the generalized tonic clonics but not partials.
Thank you for your comment Andrew! There's still so much I have to learn about epilepsy. I'm glad your tonic clonics have stopped, that must be a relief. Wish you all the best, take care!
I was on tegretol, which controlled my seizures but I changed neurologist to a doctor who I could communicate with better and he suggested I change to keppra. Tegretol had some medication interactions, such as making the contraceptive pill less effective.
@@KyraThomsen is Keppra as effective? It seems it's got side effects like depression etc. Are you feeling better with Keppra and what dosage of Keppra stopped the epilepsy for you?
@@OrMon-r5f Every medication has side effects, and everyone will react differently. All you can do is try what a doctor suggests and go from there, knowing you may need to adjust meds several times before you find the right thing. Good luck 👍
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.
Thnaks so much for such a good informative video on TLE.(temporal lobe epilepsy) I appreciate the production quality is very good as well. I have had focal aware TLE for 55 years and was only diagnosed and treated 3.5 years ago. The doctors in the past that I told had no idea what my spells were, and like your experience thought they might be migraine symptoms or panic attacks. I eventually learned to keep them secret, thinking I might be crazy for most of my life having 8-10 a year. 10 years ago they came back in clusters every 4-6 weeks of up to 50 seizures in 2 days. Searching the internet helped me find information about possible TLE and I had a receptive primary doctor that listened and got me to a neurologist. I have the intractable form where I still have about 1 per week even on meds, and I'm on my 8th med.. Now I have also developed tonic clonics as well. So sorry you have to deal with this disorder but very glad you have found relief. The side effects from the medications are not easy though, as I'm sure you know. Blessings to you and for such a good video, and hope you stay seizure free for the rest of your life!.
Thank you so so much for your kind words and for sharing your experience. I can't imagine experiencing something for so long and not having answers and feeling like you're going mad. I'm so happy to hear your doctors did listen and provide some help, even if medication only gives some relief. I'm sure you have a lot of feelings around your own diagnosis and how your seizures have changed over time. It must have been a lot to go though, and I hope you continue to get good support from your doctors and community! Thank you again for your comment, I wish you all the best :)
@@KyraThomsen Thanks for taking the time to reply. Your video is the best I've seen on TH-cam about focal aware seizures, and I've seen them all. Here is a link to a video of an epileptologist to doctors on why focal seizures are often missed or misdiagnosed by doctors. This video helped me get diagnosed. Blessings to you. th-cam.com/video/muPWaW-1Bqk/w-d-xo.html
I used to be 3 seizure medications and over the last few years I've been weaning myself off of them. I'm currently on my last seizure med and I feel better than I have in years! I'm happier and healthier than I have in decades; I find CBD with a little THC is very helpful with my seizures! Take care!
I was diagnosed with the same type of epilepsy almost 2 years ago after having a convulsive seizure un the bathtub. I have been struggling over the past few months again and just had another big epileptic episode a few days ago.Trying to figure it all out. I wanted to thank you for sharing your story.
So sorry to hear that Talisha, how scary. I'm glad you're okay and just know that you're not alone while you figure things out. I wish you all the best, take care 💜
I'm sorry you're going through this! I was diagnosed with simple and complex partial and grand mals as well and grand mals are the worst! I wake up exhausted, every muscle in my body hurts, and all I want to do sleep! I used to be 3 seizure medications however now I'm weaning off of my last seizure and I've been having some simple and complex partial but no grand mals. I would rather take CBD than put up with all the side effects of the medications but that's just me! Take care and best wishes!
@@hannahg39 Thank you so much! I wish you the best of luck on your journey. The part I am finding to be the hardest is finding peace when everything goes completely out of whack, and no control.
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..
Just watched your video....your symptoms were exactly the same as mine.. Also the treatment as well... Mine were the same from a child they could be a couple of years apart.. to being around 45yo when they were 8 - 10 a day and diagnosed as left temporal lobe epilepsy. 20 yrs ago Mine were diagnoses as stress etc... I was given anti stress pills etc Ah well 2017 I had my left temporal lobe removed and although I still take the meds I no longer have the auras. I'll be honest though... eventhough it was a difficult situation sometimes, also with the metallic taste ... when they gone I must admit I sometimes miss them!! Strange but they grew to be a part of my life after 50 yrs and when they went .. seemed strange.. Although sometimes I do get a vague light one and they seem to be a little more often... I'm not having anymore brain removed as my short term memory is already gone.. I make notes of everything and my phone reminds me.... also the main thing ...I find it totally impossible to remember anyone's name unless I knew you more than 20+ yrs ago nothing wrong with my long term .. hope all still going well..
My goodness what a journey you've been on with your epilepsy! Thank you for sharing your experiences. It doesn't seem all that strange that after experiencing these seizures your whole life, you could kinda miss them when they're gone. I'm glad to hear you're doing well, and managing the memory issues as best you can. Wish you all the best, take care!
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.
You are not alone in this experience Bre, you are managing these challenges incredibly well. It is hard. Lean on your support network, keep chasing the answers you need, and please please take care. Be kind to yourself. You aren't crazy. You will be through 💜
@@KyraThomsen you’re so so kind! Thank you for responding to my comment! You’re incredibly strong and brave for sharing what you’re going through and facing every day with a smile!
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.
Callum, mate, thank you so much for this update. You brought tears to my eyes. I'm so happy that your surgery went well, and that you're now on the next part of your journey which is recovery and finding the right dosage and medication for this next stage. It's so complex and you have been down a long road, but you are an inspiration. Thank you for raising awareness through your own channel. You are bloody amazing. Take care of yourself, and feel free to come back and let me know how you're doing in the future. All the best 💜
Stress and epilepsy go hand in hand - perhaps the stress of doing your HSC triggered the seizures? Were you having late nights when you started your new job which triggered your episodes?
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The "deja vu' for me is like I am in a dream phase... I have to focus on 1 thing and think about 1 thing... I feel as if I am watching myself from the outside. Thank you for sharing your life story and situation. You are not alone. I am also dealing with PTSD and insomnia with this epilepsy...
Hi Apache, thanks for your comment about your experience! At the worst of my seizures I also experienced depersonalisation (that feeling of watching yourself) and it's quite eerie! I hope you have the support you need to be well, and wish you all the best 💜
I usually focus on lights
Can 100% relate to this
Yes i started having these i think last year like i see some dream and i know ppl in this dream but in reality i dont know them,then i have rising feeling in stomach so i need to lay down and also i breath difficult
Absolutely the same as me - though for me it's more like j'amais vu - it's like a memory of a dream.
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.
The deja vu like phase is a profoundly fascinating yet paralyzing experience. I wish I had the exact vocabulary to fully describe It's true essence.
It's really hard to explain to doctors! Even explaining in this video, it's not exactly how it feels.
@@KyraThomsen I know right! Thank you for the posting this. 🙏
@@KyraThomsen imo it's a deja Vu of a place that's not ....here...neither physically or in a timeline. But it's so vivid and feels so familiar
I agree! They're fascinating when you think about what's going on in the brain! It's almost like all opposites are existing all at the same time and place. It's intense deja vu and jamais vu, there's extreme anxiety and it's also very peaceful. My stomach falls and then rises, I can't move but I can't stay where I am either, if any of that makes sense.
@@KyraThomsen for me it’s like doing something but then you feel like you’ve been there before and you get a flash to all the times you’ve been there ? LMAOAOA WOW I can’t even explain it I did my best like jeez😂😂
IM CRYING RIGHT NOW!! IM TRYING TO EXPLAINED TO PERSONS BUT THEY DONT UNDERSTAND ME
💜 You're doing your best in a difficult situation. Explaining your symptoms can be so hard! You're not alone. Take care, Nate.
@@KyraThomsenda exact este greu să îți exprimi simptomele adică efectele secundare de la medicamente in cazul meu că am multe efecte secundare de la tratamentul de epilepsie si e greu
"Well fuck, that was weird." Best comment in a most interesting personal story. Thanks for sharing.
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❤
Me too ! the night seizures are the absolute worst, it feels like a nightmare :( I hope you are going ok x
You’re not alone. Shit is nuts.
Good morning, Kyra. I’m a 73 year old woman with a long ago (age 19, second year of nursing school) history of waking up in my dorm room, feeling cold and had a sore tongue. I was on the floor! Picked myself up and got back into bed, thinking ,WOW, I must have had one heck of a dream! A seizure NEVER occurred to me. No history of fainting, passing out, or even dizziness. Several days/weeks later I had a very strange version of deja vu. No aura. It passed after about 30 seconds. My classmates stared at me, one asking me if I was ok. I had continued to talk throughout the seizure (I rapidly came to the realization that it was a seizure of some type and from this day, the deja Vu experiences increased markedly in occurrence. And so did my efforts to finish speaking if I had been. Friends and classmates started giving me looks each time I had an episode. One nursing instructor reported to the RN who was in charge of student health, that I appeared euphoric and she wondered if I was on drugs. That RN wanted to see me in her office. From there I denied drug use and proceeded to tell her what had been happening to me. She immediately called the hospital chief of neurology and an appointment was made. This was 1969.The neuro m.d. had an EEG done after hearing my story. It showed hyperactivity of the left temporal lobe. And diagnosed a generalized seizure was what had happened months back when I had found myself on the floor of my dorm room with a bitten tongue. Life went on. Finished school, passed my boards despite being heavily medicated with anticonvulsants (it took more than a year to find the right combo to stop most of the seizures. But my career was difficult to establish. After four years I found a unit where I was accepted and professionally I began to flourish. I soon fell in love with a great guy who loved me, seizures and all. We got married, I stopped having seizures, stopped seeing the neuro, had three daughters….life went on…it was like I outgrew the seizures. Around the age of 60, strange sensations began to occur periodically . They were somewhat similar to the deja vu of my younger days. Death had claimed my neuro years earlier. I consulted with another neuro, EEG “normal” so no meds. But these episodes, though less frequent than those of my youth, continued and worried. My once great memory began to fade. I retired at 64(that’d early in the USA) and I greatly feared causing harm to a patient. Many colleagues wondered why I was hanging up my stethoscope. My husband had retired five years earlier and my now married daughters were begging me to retire so that I could know my grands better. Beautiful babies, three boys and two girls. I was already suspecting dearly dementia so retirement was really the best . I did my best to ignore the slowly increasing cloudy memory. I never told my colleagues. Now I’m waiting to see another Neurologist, but I’m preparing myself for a definite diagnosis. My mom died after a 13 year battle with Alzheimer’s, and that hanged heavily on me. There is a connection in reverse …….studies have shown that late in the course of Alzheimer’s patients who never had seizures may begin to have seizure activity. So all of you, who like me, had seizure activity well before old age, likely won’t have this happen. Unfortunately I had several other health issues occur that have contributed to the loss of short term memory. God bless all of you and cling to happiness, it is the best revenge against things that we fight against. 🙏🏻✝️❤️
Hi Kyra, Thank you for sharing your focal seizure experiences. In regards to the deja vu (already seen), I tend to refer to mine as more like deja vecu (already lived) as I feel like I am stuck in a loop that I have repeated over and over forever and I'm remembering something really important but really sinister. When the looping ends (although it feels like it never will) I then forget what I was remembering, it is always just out of grasp. I suffered from postictal psychosis following clusters of TLE seizures which meant having to go into psychiatric care whenever the seizure clusters began. The clusters went on for 2 to 3 days, then the psychosis for 3 or 4 days after. I'd be in a delusional state with stories and false memories playing out in my mind. During my seizures I remember having a lightbulb moment that I should write things down so I could remember them, anything I wrote down though made no sense when I read it later, I'd have random words in sentences followed by number sequences, really weird stuff. Luckily I've been medicated and seizure free now since 2014 (Lamotrigine/Lamictal) but the experiences have had a profound effect on my life. Sorry for waffling on, if you're interested I have a video of me during one of my last (much milder) seizures in my uploaded videos. It has lots of very interesting comments similar to the ones you have on this video.
Hi Pete 😊 Thanks so much for your comment, I always learn so much from hearing others' experiences, it's fascinating how seizures manifest so differently for each of us. At the worst of my seizures I experienced depersonalisation which was quite scary, and I can only imagine how scary false memories and psychosis must be on top of the physical and emotional toll of seizures. I'm so glad to hear you're seizure-free since 2014 - 8 years, woohoo! 🙌 Thank you for mentioning your video as well, I just had a look. It's wonderful to see so many comments from people. As you say, epilepsy can have such a lasting impact on us, it's nice to know we're not alone. Thanks again Pete, and take care!
Heya, from a place of love, please research, & consult your doctor on how to monitor and prevent any vitamin deficiencies that can result as a side effect of your medicine. Thanks for sharing your experience, and it’s awesome you have a way to control this.
Thank you for sharing. What you are describing is as if my wife wrote it. She has recently been diagnosed with TLE, I remember her telling me before we knew she had TLE that she needed to write down things to make sure she wouldn’t forget it later.
@@salesgroup1908 It is strange but somehow comforting to realise that so many of us with TLE have the exact same experiences. It's believed that many religious experiences throughout history were due to TLE seizures. Wishing you and your wife all the best in getting it under control.
Wow you described mine almost perfectly. It’s just out of reach like you said. But why are they sinister feeling? That’s what freaks me out the most. I always feel so guilt ridden during and after
I haven’t been diagnosed or even checked for seizures.. but this is exactly what I’ve been dealing with for a few years now
Wow! If you're concerned about whether it could be seizures, definitely talk to your doctor and ask to be tested.
Your seizures will worsen as you age if you don't get proper treatment for epilepsy.
Please take an appointment asap with a neurologist.
There are a couple of things which you can immediately do on your own if you have seizures.
You should:
- Dring water immediately after you are stable enough to drink
- if you are still unwell throughout the day, drink a frappe or something ice blended as this will further cool your brain and body
- watch comedy programs to reduce your stress
- it's very important for you to eat a full day meal. Breakfast, lunch and dinner
- if you are going anywhere, always especially when you go for a drive, always keep a cold water bottle with you , incase you feel a seizure will take place, immediately drink water
You should avoid:
- smoking or consumption of anything that can affect your body
- amusement park rides as this can worsen seizures
- being around chemical factories as the smell can worsen breathing
Good luck and I hope you stay well
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.
I'm so sorry to hear all this, it sounds like you're having a really difficult time! You're definitely not alone, and I've read similar experiences on the r/epilepsy subreddit which is a great place for support and to feel less alone in your diagnosis. I know lots of people also seek counselling during their diagnosis. Mental health is so important! I hope your doctors can help you through this hard journey 💜 all the best
I'm not diagnosed but believe I've been having these since 2015, I have ptsd and always thought these deja vu episodes were just flashbacks , but there was never an exact trigger and always happened randomly. Theres a warning feeling that happens before the fear and choking starts, I get a feeling in my head and eyes at first Id feel just stuck and have to close them quickly, then would get an intense feeling of the deja vu/familiarity , seeing a random memory from my childhood or just a memory I didn't even remember but it would just feel so familiar and I can never fully see what's happening in the memory, leading to such a weird feeling in my stomach and throat, along with a feeling like something bad is going to happen, just like a general feeling of intense fear/Anxiety leading to coughing/gagging and shaking my head, saying no no no. I cope today by hugging my boyfriend and saying out loud that everything is okay and do my best to focus on breathing to avoid the coughing, it lasts about 30 seconds to a minute depending on if I can catch it fast enough and calm myself down. the description of this seizure really makes me feel better to know what actually might be wrong with me, I did have a very traumatic childhood and I know I have a lot of mental health issues but finding out about TLE definitely makes me feel so much less crazy lol, these deja vu experiences are so distressing and dissociative, I'm definitely mentioning this to a Dr, I've been keeping it to myself for way too long. thank you for making this video! ❤
Thank you so much for sharing your experience. I'm so sorry you've been having these episodes but am so glad to hear you'll be talking to your doctor about it. My advice would be (if you don't already do this) write down every time you have one of these episodes in future and note as many details as possible: the time and date, roughly how long it lasted, what you were doing before it started, do you remember anything specific about the dejavu/memory, how did you sleep the night before, were you hydrated and otherwise feeling well. This will help you start to see any potential patterns or triggers, and help answer any questions your doctor may have. Brains are so complex, working out why they do what they do is hard! I hope you get the answers you're looking for, and please know you're not alone. Wish you all the best 💜
I'm sorry you had such a difficult childhood, I did as well and CPTSD sucks! I've been diagnosed with bipolar, ADHD, DID, PNES seizures, panic attacks, sleep paralysis and night terrors and I'm in recovery for drug and alcohol addiction. I believe there is a connection between a very abusive childhood, mood disorders, dissociation, and seizures but that's just my opinion. I find breathwork, meditation, exercise, good nutrition, taking supplements, and minimal medications have all been very healing personally. Take care and if you ever need to talk to someone I'm here!
I can relate with this word to word but i litrly couldn't hv put that to words
I am experiencing this exactly!!!!! Did you get a diagnosis?
I've been feeling the fear so closely to it, but it's like that when I have pmdd...but I have seizures that's called irritated seizures
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!
@nbson9715
OMG! You described exactly my sensations when I'm having a seizure. I was recently diagnosed with epilepsy and am on 2,000 mg of Keppra a day, ( one in the morning and one at night) That medicine has turned me into a monster. Horrible mood swings and agitation. I also wish I had someone I could talk about this who would understand
Si eu am luat levetiracetam si m-a schimbat total de abia am reușit să țin pasul cu școala am avut depresie severa , anxietate, atacuri de panică,psihoza , ADHD am zis că mor timp de 5 luni si 9 zile am înnebunit mi-a afectat performantele școlare foarte mult m-a terminat mental inclusiv am fost afectata de depresie inca 3 luni după ce am renunțat la el de am zis că mor si că să nu mai aud de leve nici o dată mi-a luat viața greu mi-am revenit din starea aia
Have you looked into methylane blue?
I have temporal lobe epilepsy with grandmal or tonic clonic, I’ve had for almost 4 years, had in my senior year of highschool. The worst part of temporal lobe epilepsy is the depression, and the loss of joy for life. Great video, thanks for sharing your epileptic experience. I’ve only had 5 déjà vu moments outta 98 seizures. It’s nice how after having so many seizures my body isn’t as sore anymore. Takes 2 days to recover instead of the first one which was a month of recovery. I’ve never been able to drive since and also lost every job I have worked in past years due to epilepsy. I love watching inspiring vids lately, makes me feel like I’m the only one. Found out I have right side dominant temporal lobe epilepsy just a year ago. Many medications aren’t working and may have to get surgery. I agree with being in the shower is the worst!! I almost died a month ago from one in shower, my brother in-law thought I was dead when he saw blood everywhere. The emotional pain with temporal lobe epilepsy is fucking brutal!
Hi Tyler, thanks for sharing your experience of epilepsy. Interesting how yours developed in senior year of high school too, just like me! It certainly is a life-changing condition in so many ways, and I'm so sorry to hear all that you've gone through :( you're right about the emotional part being so difficult, you're not alone in that feeling. I went to therapy for a while after being diagnosed which really helped. I also found online communities like r/epilepsy on Reddit and even local Facebook groups. I hope you have some supportive people around to help get through those hard times. Thank you again for your comment. Epilepsy sucks!!
I used to be 3 seizure medications and they have a lot of side effects! I'm not saying they don't help however there is a cost! They made me very depressed, anxious, and apathetic. I'm currently weaning off of my last seizure med and I'm happier and healthier than I've been in decades! I'm not saying everyone should come off of their seizure meds but you do you have a choice! I find CBD with a little THC is very helpful with my seizures but it depends on where you live.
thank you for sharing this. As an adult with epilepsy it feels pretty lonely sometimes.
This is, oh my gosh, I am 13 years old, and personally have had episodes so similar to yours, it’s crazy my whole life. This is the closest set of symptoms to my episodes I have ever heard of. I’m getting an EEG sometime soon, hoping to get answers!
Hi Jack, I'm glad to hear you're getting an EEG soon and I hope you find the answers you're seeking. It can be an unsettling time having those episodes and going through tests like an EEG, but keep talking to your doctors and asking them any questions you have, and reach out to the people around you for support :) Wishing you all the best! Take care 😊
You're EEG can come back normal and you could still be having seizures though so don't let the neurologist tell you aren't having seizures because your EEG was normal! Take care!
I felt like the most special person ever
Thank you for posting this. My "aura" is my entire seizure. I smell smoke that isn't there.
Oh! I've been recently smelling smoke! And have even went searching, I've been thinking I've been having my seizures again, but I haven't had any "strong" ones, dejavu and the rest... I've been thinking about mentioning it to my doctor, but I've been happy not being on meds for it for so long... thanks
You should talk to your doc about it.
I also smell a smokish smell that isn't there, it usually last for a few seconds, sometimes minutes. I wonder what it could be
@@robinackermann7711 sounds like it could be a focal aware seizure. Check with a doctor.
@@kerriep8809 my partner will often say to me he smells something as if my brain is on fire 🔥 etc.
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 ❤️
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.
I used to call it a "deja vu" moment until I found out it was epilepsy a few months ago after my girlfriend watched me get it during a facetime call... I probably remember the 1st one happening in 2013 and only got to know it is epilepsy in 2021. Usually, whenever it happened, and I come back to consciousness, everyone around me just looks terrified and they're like, oh you should probably go see a doctor, but to me, I'm always like why is everyone so worried, I only just got deja vu, and no one ever told me it was epilepsy until my girlfriend did. I get auras a lot and sometimes it goes deeper into unconsciousness and lip-smacking and chewing which lasts for about half a minute and then when I'm back to normal I sort of remember it happening but since I can't see myself, I never know how I look or I have no control over not doing the lip-smacking or chewing. I also live in Australia and the doctors here are pretty good
Thanks for sharing Afam, I'm glad you now know what those deja vu moments really are! It's important to take care of your epilepsy, and you're right, we do have some good doctors and healthcare in Australia!
You're having simple and complex partial seizures! Has your partner noticed if when you're smacking your lips if you tug or pull at your clothes or doing anything else? You NEED to see a neurologist soon! I have both of these kinds of seizures as well as grand mals. I don't know what the laws are in Australia but I find CBD with a little THC is very helpful! Good luck!
I go through deja Vu and feel nauseated almost every day... unless I can remember the deja Vu but I'm left tired and I can't explain it
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.
Sorry in advance for the TLDR
Thank you for sharing! I am new to this community and my story to get here was bizarre and odd including a whole lot of misdiagnosis. The only reason I landed here and TLE is that my fiancee is going through some neurological issues of her own (MS or Pituitary Adenoma tumor, brain scans are being looked at by Neurologist as of his week actually), and so she has been doing tons of neuro research and reading and she witnessed one of my episodes and identified it as a seizure. Since my teens (first one was probably between 13-15 years old) I would have what I always called "fainting episodes" caused by anxiety that was brought on by deja vu. It was the deja vu part that I could always attach to the feeling I would get and no one ever understood it when I described it to them. For me they are: deja vu, nauseau, light headedness, aura, impending feeling of doom, and then either get so faint I need to sit down and breathe through it with my head between my knees or if I didn't stop what I was doing to breathe through it I would eventually faint or keel over and come to about 5-10 seconds later, I am conscious for all of it up until the blackout and the aura/onset period is usually about 1-2 minutes
In my teens they happened a lot, lets say I had maybe 25-50 of them over 5-7 years. I talked to a pediatrician at the time and they said since I was so tall at 6'4" that my heart wasn't developed yet so I was getting fainting episodes caused by blood rushing from my head by getting up too quickly etc. Clearly I wasn't conveying the issue. They went away for a long time in my 20s and didn't really think much of them - maybe get 1-2 year, if that? And so I did kind of believe the circulatory explanation.
It happened again a couple years ago around age 33, I felt it coming on while going to the bathroom and didn't stop peeing, I ended up dropping to the ground in the bathroom and waking up moments later (so brief that my fiancee laying in bed reading a book right there didn't even notice I was out for the count till I called her attention to it). We went to the hospital and they thought I was experiencing a panic attack induced fainting episode, I told them of the deja vu and they said ahhh yes you are panicking when you get this feeling so the blood drops from your head and rushes to the center of the body as a biological response and if you don't sit down fast enough you cause yourself to faint.
This brings me to today, at 35 years old, this morning in the shower I felt one coming on - verbalized it to my fiancee too - and sort of bent over in the shower to catch my breath and try to work through it. She said she heard me drop to the floor and came rushing, opened the curtain and found my sitting in the corner, she said it took about 5-10 seconds before I woke up and she said was surprised at how cogniscent and aware I was after going through that, she walked away to get me a glass of water while I saw on the edge of the bathtub - by the time she came back from the kitchen I was right as rain and it was like it never happened. I may have had about 15-20 minutes of brain fog but by the time I got halfway to work it was a regular Monday.
She told me it was a form of seizure, some quick googling of "deja vu causing fainting episodes" got me here and to a bunch of other articles that are consuming my day. I thought I was alone in this for sure, I thought I had some weird form of panic attack but now I know the deja vu is a real aura and feeling and I'm not alone. I currently use medical marijuana and CBD for back pain and anxiety, hoping TLE doesn't prevent me from that because I HATE pharmaceuticals and alcohol.
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
Thank you for sharing your story too Mel, I'm sooo so glad you got your diagnosis and your medication is helping! Good on you. All the best 💜
You did a beautiful job explaining how this feels...it really is unlike anything else so it's so so difficult to describe. Deja vu is close but it's more like being inside a memory that you can't quite put your finger on. Mine is on the right side as well so I experience the music...mine is the same song every time and that is common with R TLE. I still have seizures on medication but I no longer hear music when they happen and they are milder and tend to happen when I wake up instead of during the day. Mine also come with strange tastes and smells, and a change in quality of light/colors. Can't tell you how lovely it was to hear someone put into words what is so difficult for me to describe!
Thanks so much for your comment! I've never known anyone else who experiences music in their seizures! How cool :) I didn't know it was associated with R TLE, it's interesting because mine is more on the left according to my scans. There's always something new to learn about epilepsy, brains are funny things. Thanks again for sharing your experience. Although not entirely gone, I'm glad to hear your seizures are milder with medication - take care! 💜
I have right TLE seizures too! They're fascinating when you think about what's going on in the brain. I have extreme deja vu or jamais vu depending on the seizure, I experience extreme panic but also extreme peace, I can't move but I can't stay where I am either, and my stomach rises into my chest and then falls about 40 floors down. That's what my simple partial seizures feel like; sometimes they progress to complex partials where it's like I'm dreaming but awake at the same time. Occasionally they progress into grand mals however simple partial seizures are the most common for myself right now. I'm currently weaning off of my third and last seizure med and I other than a few simple and complex partials I'm doing well. I'm happier, healthier, and fully present in my life for the first time in my life! Now I use CBD and a small amount of THC which works well. Take care and best wishes!
I’ve never ever heard anyone else say the same thing about hearing a song that’s kinda familiar and on the tip of the tongue. My dad would always say he would get this song in his head, but he couldn’t ever place it, and then he would get this weird taste in his mouth after. I wonder if it was acid from the rising nausea. But he ended up being diagnosed with a giloblastoma tumor in his temporal lobe. He would say that he would feel like he was crazy about the song part - it was very comforting in a weird way to have an answer possibly to his song riddle. Thank you for your video
Thank you for sharing 💜
Thank you for sharing this! I also suffer from temporal lobe epilepsy and got this deja vu feeling. And I have this weird memories and hear voices speaking to me, I get scared because it’s bad voices. I feel depression and anxiety. It’s like I falling into a deep depression the whole episode. Sometimes I have also throw up because I felt sick of all the stress. But I really want to speak to someone who suffer from this so I don’t feel alone.
I'm so sorry to hear your seizures are affecting your life this way, I understand how it impacts mental health. I saw a counsellor for a while which really helped me. I hope you're able to reach out to your doctor, and the people around you to get the support you need to be okay. You're not alone 💜 take care, Mikaela
💜
Thx for sharing. I have epilepsy too due to a traumatic brain injury from when I was a toddler. It is nice to see people talking about it.
Thanks for your comment Lia, I hope you're well! Epilepsy can feel so lonely and confusing, it's nice to know we're not alone :) Take care!
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.
I'm so sorry to hear you've been ignored Renee, that's terrible! If your aim is to see a new GP and push for answers, I hope you're able to do so, even though it will be difficult 💜 Sending you positive thoughts
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.
You're definitely not alone! All the best at your next neuro appointment, I hope it goes well 🙂
My doctors tell me it’s panic attacks and nothing has shown up on an EEG. I get them for about 5 days every 8-12 weeks. So, after doing tons of research, I self subscribed myself Levetiracetam, or generic Keppra. I use online doctors to write my prescriptions and the seizures have dissipated.
I was diagnosed with TLE when i was fifteen, in a highschool class i suddenly felt something I'd never felt before, it was deja vu but the stonger it got the more it felt like a dream. I was led to the school nurse and tried to explain to the best of my abilty the feeling, the taste of blood in my mouth and a raging headache afterwards. Fast forward! A couple MRI's later i found a tumor in my brain. I went six months without meds, i didnt even know WTF i was supposed to do. The stronger they got, the more hallucinatory it was, visons of a runaway freight train, for some reason! a claw machine (for stuffed animals) from the inside, and id hear the commotion of young children, kimda like from "The Polar Express". I am now twenty, i have gotten the tumor removed, ive had to put up with big pharma and the inability to do schoolwork. I dont know why this happened but i know one thing.
Fuck tumors
wow i didn’t know it had a name, this has been happening to me for almost a year! for me i get a feeling of intense deja vu and i feel like i am not myself and as if i am reliving a certain dream. the sick feeling also gets so bad that most of the time i throw up, and after the episode i have to collect myself because i get so scared. thanks for sharing it is good to know i am not going crazy and other people experience this too! i have a neurologist appointment soon so hopefully they can figure out if it is really TLE.
Thanks for your comment! I'm glad the video helped reassure you, you're definitely not crazy and not alone! Brains are just weird 😂 Those episodes sound really intense! I'm glad you've got a doctor appointment lined up, and I hope you find out what's going on.
That’s me exactly, for 22 years! I hope you’ve gotten the answers you need from your neurologist!
@@sarahquirie-norris7241 thank you!
I have simple and complex partial and grand mals. If your neurologist orders tests, which he will, even if they come normal you could still be having seizures. Half of the people with simple partial seizures don't know they're having seizures. All of my tests came back normal and I was having grand mals so don't let the neurologist tell you aren't having seizures! Take care and best wishes! Also I don't where you're from but I find CBD is very helpful with my seizures!
Same here! 1 year in this is awful I’m finally seeing a doctor tho
I told friends about my seizures. I don't know how serious they took it until I had one in front of them.
I always worried that I would find it embarrassing, but I felt so relieved that they saw what I was going through. 0:06 ❤❤ Take care!
I LOVE your description of the Deja vu and comparing it to the feeling of recognising a song you can’t quite hear and I’m going to use that from now on! There’s something so lonely in experiencing something so strange and hard to describe to thyroid people around you so Thank you for giving me the words!
Seizures are almost impossible to describe, I'm glad my words spoke to you. Take care Meg
Thank you so much for sharing this, everything you experienced is what I experienced, I had seizures without knowing for about a month and got admitted to the hospital and getting diagnosed with left temporal lobe epilepsy and now on medication. It’s such a lonely feeling and knowing other people experience the same thing as you is so reassuring
Thanks Hollie, I hope things start to improve for you soon! It can be very lonely but you're definitely not alone 💜
I just found out im having siezures, i thought this developed out of the blue , doc said ive probably had siezures and it went un noticed or i dismissed the symptoms, hearing what ur saying ive 100 percent been having siezure that i have dismissed ... The only reason i know now is because ive started having feelings of passing out and although i remain awake my body shakes
I’ve had 3 instances in the past 6 weeks where I get this odd smell, then this incredibly intense Deja vu like experience takes hold where it seems that I’m remembering a vivid dream (or VERY FAMILIAR parallel life) that I can’t believe I’d forgotten about. I’m not focusing on my surroundings while that’s going on, it’s as if my minds eye takes center stage for 30 seconds. I don’t know where to go from here (if anywhere), do I go see my pcp?
Hey Matt, thanks for sharing your comment. If you're concerned about these instances you're experiencing, it's best talk to a doctor if you can. Write down as many details as you can, like when these instances occurred, how long they last and exactly what they feel like. A doctor may be able to help with tests like EEG and MRI. All the best, take care
The odd smell. Yeo
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.
Thank you SO much for sharing this!! I’ve had TLE for the last 10 years, but was only recently diagnosed last year. The deja vu feeling is absolutely insane. I always thought they were panic attacks so I just ignored them. Turns out they are seizures, who would’ve known?!
That's wild! Ten years! It's not something you would assume was a seizure unless you knew or a doctor realised. I hope you're doing well now 😊
The deja vu for me is terribly intense and painful for me. The diagnosis journey is terrible. There’s nothing like not being believed when you describe such a strange sort of episode!
It's actually quite common! I was diagnosed with simple and complex partial and grand mals over 25 years ago. Sometimes I'm still not sure if it's a seizure or just an intense short panic attack! Take care!
My 8 year old son just been diagnosed with temporal lobe epilepsy, first thing he says is he can’t hear and feels sick and can hear music , then he completely switches of and zones out for about 4 minutes and sometimes vomits , he hallucinates , can’t speak or communicate and after he’s confused for 15-20 mins , he’s are focal impaired awareness seizures. He’s had 2 clonic tonic seizures aswell , I’m glad you have this Video so I can get a better understanding of what he’s going through as he finds it hard to explain
Thank you so much for sharing this comment, it made me a bit teary to know that my video helped in understanding what your son feels. It's so hard to put into words, and even in this video I've not explained it perfectly but it's as close as I can get. Your son sounds like he's done very well in explaining something that feels so confusing and unexplainable. I hope your son and your family get the support needed for this next phase after diagnosis. Sending all my best wishes for no more seizures 💜 take care!
I always hear music also, or loud chatter, like the sounds of a loud conference room.
After so many years , it changes for me . No more Dejavu , it just comes , Salivating like crazy and being just blank , and aware of what is going on , but I dont have the same episodes like I haad 3 years ago ...
Idk what is going on but I have that episode but hours. Seizing over and over: jerking limbs, tremors and confusion. I am losing my memory and confused. The doctor saw my mri and said I had brain damage on my temporal lobe and is likely progressing. So diagnosed with epilepsy.
So I just sit there shaking and seizures in my limbs, even my neck. I look like I'm being electrocuted over and over. For hours. I get so exhausted.
I have aggravating triggers, like heat, etc. But sometimes I'm chilling and it starts slow and just keep increasing until it plateaues and sits there for hours like that.
I feel like I'm have have mini clonic tonics for hours.
Whew. I'm trying to find anyone else who goes through this
Thanks for sharing. I think I might have this. I'm afraid no one will believe me because I suffer from mental illness and Dr tend to dismiss me a lot. But I get this i know what you mean about the deja Vu feeling. Except it's not music with me. It's the most intense deja Vu I've ever had and then I get hit with a feeling of impending doom. Something bad is going to happen . I feel sick, depersonalized, and then I just don't really know what happens. It's never happened around other people. I do think I sort of switch off for a min. Then it's over. I think. Had other strange things not sure if they're related. Like I'll look at my hands and they look just weird. Almost like they're not mine they're so big and it's like I'm watching them in a movie. Idk. I get the deja Vu aura thingy like at least once a month. Idk if I need to do something about it. Idk if I have seizure activity in other ways. I never even knew this was signs of anything. I was thinking of seeing a neurologist anyways so maybe I'll have to go see one and bring this up. But at least I don't have this often like you. But I'm still concerned I'm not recognizing my symptoms. I live alone. And I still drive. That's so scary.
Thanks so much for your comment, it can be hard to know what these feelings and symptoms really mean unless you get a professional opinion, because everyone is different and brains are weird things! I'd recommend talking to a doctor or neurologist/specialist and specifically asking about TLE if it's something you'd like to learn more about. Take care :)
I'm pretty sure I have epilepsy as well I think I just found out I get this weird Deja Vu sickness once a month as well just last week I was on my way to my sister's house and work and I was having one of those Deja Vu sickness episode things whatever you call your seizure I never really thought anything of it I thought it was just something that happens every now and then when I get sick now that I know it's a seizure because on my way to my sister's house I crashed my car a block from the exit of a freeway I don't remember much I remember a police officer asking me if I was okay and I told him I didn't know what was going on then I remember being an ambulance and strapped to a gurney they will release me from the hospital when I had another seizure then I was resubmitted in a different hospital for 5 days I just got out of the hospital yesterday and I've just learned now that it's due to epilepsy they suspended my driver's license and now I am on leave from work as I figure out all this doctor situation and medication now glad I'm learning more about it now I know what to expect should be more careful when those feelings of deja vu but it's not just the deja vu get hot and sweaty or cold sweats sometimes I start shaking or just stare off into space or forget what I'm talkin about mid-conversation very scary thing it's been happening for a while for me and I just learned what it is I really don't want to go through it anymore and I know it's going to happen again totally changed my life should have died on a freeway thank you Jesus for keeping me alive
@@xsmileyonex Thanks for sharing your experience, that sounds really really scary! Thank goodness you are okay! Everyone's diagnosis journey is different, and it can take time to get used to, especially with medication and your licence being suspended, it sucks! I've found it helpful to reach out to the Reddit community in r/Epilepsy, it's a very supportive group. Keep learning more about your seizures, keep talking about it with your doctor, and know you're not alone.
That definitely sounds like simple partial seizures to me! Do you have a neurologist because if not you should. Also I know some have to drive and it depends where you live however I wouldn't be doing a lot of driving if I were you(but that's just me). Simple partial seizures can very easily turn into complex partials where consciousness is impaired. Take care and best wishes!
I get the deja vu too like so many times a day... And it's everyday but then a day of nothing. But I feel the same about the something is going to happen. Like death is nearby.. And I'm so depressed nothing like I've had before....
My 10 year old was recently diagnosed with epilepsy/ temporal lobe tumor. He had seizures from age 1-4 years and they stopped. The tests always came back negative for anything. His seizures were always so random and we never could figure out what caused them. He went almost 6 years without having one to having one this past February. I was so lucky to be with him when he had it. I immediately called the doctors and we did test after test and again there was never anything on them. He had 6 in a weekend and was so confused. I called that Monday and they ordered a brain mri the next week. After the mri they called us a couple of hours later and said they saw something on it. My husband and I cried. Relief they final found something but terrified what it was. We went in the day before school with the neurosurgeon and he went over his scan and showed us the tumor in his right temporal lobe. He called it a ganglioglioma tumor. It is a very rare tumor and causes damage to motor, memory, emotions. We learned that my son is a miracle. He doesn’t struggle with any of those things. So we are hopeful he will be a good candidate for surgery. He is just finally being able to tell us how he felt before the seizure and how he feels after. I was scared to send him back to school because of how confused and tired he is after but we are blessed that he has a twin brother that is in the same class and keeps an eye on him. I have been trying to find a group for kids or adults with the same tumor. No luck. So thank you for this video I learned so much.
What a difficult time you've all had 💜 I hope you do find the support group you're looking for, and hope your son is able to have the surgery he needs 🙏 Wishing you all the best 🙏
Mine are déjà vu sort of I guess. A very strong familiar feeling but more dream like where things weren't right. Hated the feeling.
I still get the pre aura sometimes but been a couple years since starting meds. Always enjoy watching videos of people talking about TLE because it's so hard to describe.
You're spot on, it's SO HARD to describe but I definitely relate to the dreamlike feeling. Now and then I get regular deja vu and realise just how different it feels to 'seizure deja vu'. I also love hearing people talk about it because it's fascinating how differently the symptoms manifests in each of us.
Thank you posting this. My partner has the same symptoms of you and we are going through a difficult time trying to find the best treatment for him. He stopped driving and it took such a toll on him. Hearing you talk about how you have been able to manage and now drive, gives me so much hope for him.
I'm glad my experience could provide some hope in a dark time! It is so difficult on so many levels, but just know neither of you are alone in this. Not driving is so much more impactful than it seems on the surface. I myself felt a huge loss of independence and took a hit to my self esteem. It's also when I started seeing a counsellor, which really helped! I wish your partner all the best. There is light at the end of the tunnel 💜
@valeriemacaraan
Please check with his neurologist about a medication called Lamictal or lamotrigine as this medication is more effective to reduce seizures
There are a couple of things which can be done immediately.
After he has a seizure, he should:
- drink cold water immediately as this is the first liquid which will relieve the pain of seizures
- if he is still unwell throughout the day, he should drink a frappe or something ice blended as this will further relax the brain and body
- he should eat a full day meal. Breakfast, lunch and dinner
- watch a comedy program to reduce stress
- he should always keep a water bottle with him, especially when going for a drive
He should avoid:
- smoking or anything that affects the brain
- amusement park rides as this can worsen seizures
- being around Chemical factories as the smell can worsen breathing
Good luck and I hope he stays well
@@KyraThomsen
I hope your health stays well.
Thanks for your videos as this gives us the opportunity to discuss our difficulties of epilepsy and share information which can be helpful.
Please check with your neurologist for a medicine called lamotrigine or Lamictal as this medication is more effective to reduce seizures
If you are facing weakness or any difficulties after having a seizure, you should:
- always drink cold water immediately as this will cool your brain and body immediately.
- drink a frappe or something ice blended as this will further cool the brain and body
- watch comedy programs to reduce your stress
- eat a full day meal, it's very important not to miss a full day meal
You should avoid:
- smoking or anything that affects the brain
- amusement park rides as this can worsen seizures
- being around chemical factories
- very bright lights
Good luck and I hope you stay well
I believe my fiancee is experiencing some kind of complex partial seizure. However, she is absolutely oblivious to it. It has taken me 2 years to get her to go to a neurologist.
I haven't been diagnosed yet, but mine are visual and I never knew there were different types! Instead of hearing a vaguely familiar sound or smell, I feel like I am picturing a dream from my childhood. As soon as I notice them, I get sucked in and can't help but to spiral into them. They've never been serious enough for me to seek help until the other day when I was driving into work and completely forgot where I was going and why I was driving. Never scheduled a doctor's appointment so quickly.
First of all, I'm so glad you're okay after that driving incident and secondly good on you for booking a doctor's appointment right away! So important to look after our health and others safety. All the best at the docs!
Emily
How you describe your symptoms sound just like mine.. I used to try and figure out what I was seeing in my minds eye which actually prolonged the seizure and made me feel very nauseous.
I've been having these episodes a few years and my doctor has said there is no medication to give me but advised me to just ride the seizure out and not to think about what my minds eye could see!
Doing this has help the nausea although not eradicated it.
When the seizures happen 4 to 8 times a day, between 4 and 15 seconds long the upside of this I can go 4 to 8 months with no symptoms
Did you get a diagnosis? I get the childhood memories too!
I’ve had temporal lobe epilepsy for 28 years, I’m 53 years old now, and I’ve been told by Doctors that they’ll i’ll probably never stop having seizures,. I have them every day, so I had to give up my job and give up driving.
I’ve been tried on so many different types of medication that haven’t helped me some have even had bad side effects.
I sometimes feel useless, having to rely on other people if I need something as I can’t go out own as I risk falling over.
Such a difficult thing to go through, day in and out for years. Thank you for sharing your experience with epilepsy. You are certainly not useless, and not alone. I wish you all the best 💜
I'm sorry you're going through this! Seizures can be challenging however I never let them stop me from doing anything, except driving, lol. Thanks to perimenopause I've started having seizures again however CBD and a small amount of THC usually helps! I find eating well, taking supplements, meditation, breathwork, exercising and doing yoga every day, spending time in nature and limiting my screen time have all been very helpful! Take care and best wishes!
I’ve been dealing with the tle for 4 years now. The deja vu that comes on so suddenly is just so hard to explain. Most of the time they happen usually come in clusters were they happen multiple times a day and then I won’t have any for months after that.
Same! Mine happen in clusters for a week or two then dissappear for months
Ive been trying so hard to get my doctors to listen to me. Ive seen 3 PCP's in the last 5 years, and no one has taken me seriously. I had 3 of these "episodes" today, one I just finished. Does it happen multiple times a day for a while and then vanish? Ive been documenting every single one. They mainly happen twice a day for a week and then vanish for a month. My right arm tingles, the back and sides of my head tingle, the deja vu (which feels like a dream literally coming to life), I KNOW im going to get it hours before it happens, too. The nausea rises and falls, rises and falls and I just feel like crying. Thank you again, Its really heartening to know that someone else feels the same way you feel. No one in my life has ever experienced this.
Getting diagnosed can be so difficult. Don't give up 💜 If you can, tell your doctor outright that you want to be referred to a neurologist to test for epilepsy or other neurological conditions. Keep trying. It's not uncommon for tests to come back inconclusive, but you've done the right thing by recording as much as you can. I wish you all the best. You are not alone
I get the tingling too in my episodes
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.
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 😅
I hope the neurologist can give the answers you're looking for, not having a diagnosis for what you're experiencing can be really tough! If you're not already, try and document as much of your experience as possible (record the time, date, length of the episode, what you were doing before it started, even things like did you get a good sleep the night before, had you drank alcohol etc.) that can help you see patterns, which can be helpful when talking to doctors. Keep pursuing answers, and lean on your support networks. Good luck! 💜
@@KyraThomsenUpdate, I eventually took myself to the Emergency Room because I was having so many clusters of seizures and I couldn't wait on the GPs initial "migraine" referral anymore. After 3 CT scans they found a mass in my right temporal Lobe, currently waiting for the neuros to assess the scans and make a diagnosis POA, but whether it is Epilepsy or something else. I am most certainly having Temporal Lobe seizures, and they have gotten worse, more frequent.
Medically advised not to drive or work so just got to sit and wait 🤷🏼♂️
One thing that I wasn't having until the last month or so is a newer symptom, SOUNDS! Music and noises can trigger them and sometimes when I have a seizure I hallucinate songs, and even smells/tastes and my whole body feels like it isn't mine, it's so surreal
@@callumsullyfitness Oh my goodness how absolutely awful!! I'm so sorry you're going through this. But I am glad to hear you've got doctors looking for answers. Sitting and waiting is the worst. I hope the test results lead to steps and actions so you can begin a new path to not having seizures anymore. Gosh, it must be so difficult. Thank you for coming back here with an update, I wish you all the best for what the future holds 💜
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
I did a three day EEG and my neurologist haven’t seen seizure activity on my EEG because I didn’t gave the episode. I had it twice this week and while sleeping. It’s the same symptoms you describe. I never know when will happen but it never does when I have an EEG done!!! 😩
@Just Peachy Subliminals I am pursuing this because I think is affecting my memory.
When I drive I can’t make decisions.
I am seeing an epilepsy doctor, not just a plain neurologist.
I don’t have depression or anxiety. My life is actually pretty good. I have it since I was a little kid.
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.
They could never make me have a seizure with sleep deprivation etc. It just wouldn't happen, and I also went a good while without any and thought that whatever it was I didn't have to deal with anymore. I was lucky that my neurologist believed me and gave me medication. Long story, short.. I'm off the meds and have been having seizures again, more often but not daily, and not enough to make me go see anyone about it. Sadly, the doctor who believed me is no long practicing in the state, so that's depressing considering the previous one didn't believe me and was basically a jerk about it all. I'm glad you got a diagnosis and the medication is working for you. Thank you for posting this.
Methylane blue works wonders
I am now absolutely convinced that I have this (I also have tachycardia so I know my brain likes to generate electrical signals) and also that my dad does. We’re also both autistic so I believe there’s a link there too. We both hallucinate in semi sleep states and have tendencies to entertain delusional/magical thinking and I understand from reading Carl Sagan that there are links there. 🌟
Best thing to do would be to talk to your doctor if you have any concerns you might be experiencing seizures.
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
I’ve been having deja vu for the last couple years now, there’s been a few instances that I may have changed some things around, that I could have done but I didn’t do, it’s really weird and it’s almost like paranormal for me, but it’s not. I can take it much deeper than that and explain in full detail, the only thing that I do know is I did have a NDE when I was young, right before I was adopted, it was due to a accident I had.
Wow. Just wow. I’m on lamictal. Have been since I was in college. I’m 41 now and can feel my left temporal lobe light up. A seizure sounds right. My uncle had epilepsy.
never been to a doctor for this.. when i get overwhelmed, anxious and tired i always get it. the exact same deja vu everytime. im unable to talk or respond. mom told me my head is shaking everytime i get it. when i get back to my senses i speak nonsense its difficult for a few moments. i dont really remember what i was doing when i had the seizures. but that feeling of deja vu is something i cant describe to anyone.
Thanks for sharing your experiences of deja vu, I've definitely heard other people describe some of those symptoms you're describing. I hope you're able to seek support or see a doctor if you can or want to. It can be scary not knowing what is happening in these episodes but just know you're not alone. Take care
@@KyraThomsen i see, thank u so much! ❤
Dear Kyra I was diagnosed with Temporal Lobe Dysfunction when I was 50 bit had it since I was 12, I had cognitive, and memory problems in school, I was having Migraines, who.around menses, but over time these migraines became 24/7, I don't respond to ANY meds, and experienced nausea and vomiting.I would have to go to ER and they would give me morphine.over the years it got to the point the migraines put me in bed! Finally my doctor at 56 allowed me Hydromorphone 24/7 and it made a big difference, I also have Intermuscular Toridol for home use.My blood pressure goes sky high when the migraines get bad so I'm on a LOW dose blood pressure medication.I think I'm having episodes in my sleep I always wake up with a hang over feeling.My eegs are bad but I'm not aware of seizures.It seems activity physical makes my pain worse so I have to lead a quiet life, I can't work, or travel, it tires me out and leads to pain.My neurogist said "no wonder you have headaches" you have TLE, apparently my biological mother also has TLE.
Wow Freda, what a journey you've been on with your migraines and seizures. I hope your doctor can help now they've identified TLE. All the best to you 💜
@@KyraThomsen thank you for your kindness, yesterday my husband and I had to go to the bank to discuss retirement strategies, we'll by the time I got home I was tired right out, and quickly out of the blue had a bad pain flare and needed a Toridol shot I'm allowed to have at home, today I have the hang over affect which takes a few days to get over.i was recently approved for the Disability tax credit in ontario.w3 really are warriors!! ❣️
Kyra, thank you so much for sharing your experience. I've recently experienced 3 seizures in a 24-hour period one with severe Deja vu, very amplified music that factored into it. (We do have very quiet music at the gym, but this was very overwhelming along with the Deja vu, a very intense confusing smell/taste, retching stomach and dizziness while on the treadmill. I later had a mild one while falling asleep (Just the smell/taste and retching) and another woke me from a full sleep. That was a month ago, and nothing since, other than a little confusion over the next week or two, but that seems to have subsided.
The very first time for me was 40 years ago in the library when I was 19 while studying physics. It was a revelation to hear you say that your first seizure was also in the library. (Were you studying something very technical?)
Hearing you talk about seizures in the shower also made me consider another experience that I thought was disassociated. Several years ago I was showering, felt hot and flushed, my stomach started retching and I was a dizzy. I felt my head hit the tile a few times on the way down and I was confused because I didn't know I was falling. I next heard a distant voice that got louder over time. My wife was calling my name and I was crumpled up on the floor of the shower. No clue how long between passing out and coming back, but I thought that might be related to a flu I was just recovering from.
Watching your video almost gave me a (more normal) sense of Deja vu, since your experiences were so terribly similar to mine. You're like the sister I never knew. I have a referral for a Mayo neurologist. Hopefully I'll hear from them soon.
Best wishes on your journey.
Thanks for your comment and sharing your experience with epilepsy. There are lots of similarities in our stories :) I wish you all the best with your neurologist appointment. Take care.
I have this but it usually becomes tonic-clonic within about ten seconds if i don't radically distract my brain from it.
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.
It's different for different people! Doctors would always ask me if I had any weird tastes or smells, but I never did.
Was just diagnosed a week ago after having two clonic tonic seizures in my sleep. My focal seizures are very similar to yours, the weird music is also so strange during my focal seizures, very very scary stuff. I fucking hate it. Love you ❤️
Having this diagnosis is a pain. I have TLE, primary focal aware with secondary generalized. So 99% of the time, it’s just a focal seizure…but 1% of the time, I go tonic clonic after the deja vu aura. Watching this video after having a few breakthrough seizures this week 😢 I had just gotten them under control and had been given permission to drive again.
I consider this an “invisible disability”, as people don’t see how it affects us. The fatigue, severe headaches, anxiety, medication side effects. THANK YOU for sharing your story to help us feel less alone.
Oh no, I am SO sorry to hear you've had breakthrough seizures, especially after only just driving again, that sucks! I hope you're recovering okay. Please take care of yourself 💜
Thank you for sharing your story! Mine is so similar - I had my first noticeable complex partial seizures around 16, they intensified and got more frequent until I went to my GP, got referred to a neurologist and got diagnosed at 17. I also respond well to medication and I've never had a clonic tonic seizure (that I'm aware of, bearing in mind they can happen in your sleep).
That's where I'm at now, started happening again and the GP just referred me to the neurologist so we will soon see what the hell is going on in my mind 😅
This is very similar to what I have been experiencing at the start of what's been happening to me lately.
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.
That is an awful experience. Are you able to see another doctor? Is there someone who can attend with you, to make sure the doctor is held accountable to provide a path forward? Definitely ask for referrals for a specialist if that's possible for you. And take as much evidence as you can, such as exactly how frequent your episodes are, how long, what time of day, etc. Getting diagnosed is a difficult journey but if you want answers, don't give up! You can do this 💪
Thank you for your video. My daughter was diagnosed in May with temporal lobe focal epilepsy. So I watched your video to try and get more info on it. And it really helped me but at same time help me realise what I think was migraines may be sezuires. Not sure though got an appointment on 3rd of November. Whatever mine is like a day dream I can not get out of. I am aware but I can not tell anyone that I hear them. I have had the tummy pain that feels like your chest hurts a bit like bad acid reflux. Reason I thought was migraines was. I was having like blurred vision slurred speech pins and needles in my arms and hands and num face and tongue. Felt a bit like a stroke but I've had a few of these episodes I felt maybe the bright lights and work plus being tired. Can get like pain in my head but more so after its progressed it usually starts with a fuzzy head feeling then blurred vision then no sight in one eye then all the rest. But most of the time its like feeling like I can not concentrate like my Vision out of focus
I can imagine that's a strange and scary sensation! Probably best to discuss with your doctor, I hope you can find answers. All the best to you and your daughter on her journey with TLE 💜
Thank you for sharing. I was just diagnosed and believe this has been going on for at least a decade, and doctors couldn’t figure it out until I got really bad recently.
Wow! I'm so glad you finally have your diagnosis, it can be so hard not having a name for your experience. Wishing you all the best for the next chapter of your TLE journey :)
Thank you so much for sharing. My daughter is 18 and started having them at age five. She gets the stomach pain and sometimes the nausea with hers.
I hope your daughter is doing well now. It must have been hard to grow up with seizures from such a young age. Take care 💜
My “oh no” feeling is always followed by a smell, one that I can’t describe but it is incredibly familiar, followed by deja vu, and then I would feel faint. Whenever I get deja vu now, I have to tell my partner what kind of deja vu I get, lol. Interesting your “hallucination” is sound based, while mine is smell based! I had my first grand mal seizure about a year ago, and was diagnosed shortly after (thankfully). I am going to film a video on it shortly, thanks for inspiring me to share my experience too!
That is fascinating! Brains are so complex. I'm glad you were able to be diagnosed after your grand mal, and hope you're managing it well. I'm sure a video of your personal experience of epilepsy will help others going through the same thing :) all the best!
Hi! This is exactly how my episodes happen. It’s crazy to find someone who knows what I feel when it happens! I’ve been having them for almost 3ish years now, but I haven’t seen a doctor yet. They’ve progressed recently, and now my memory is being effected and the frequency of episodes has gone crazy! About once a month, I’ll have 8-10 episodes in a 24 hr period. I was wondering, at what point did yours progress into a grand mal? I’ve never bothered with a doctor, but since this progression in recent months I’ve been getting really worried :(
@@breannadowns7365 Hi Breanna! I'm glad LJ's comment has resonated with your experience! It's always good to check with a doctor to get the best advice, especially a neurologist if you can, and especially if what you're experiencing with your memory is starting to worry you (long term, temporal lobe seizures can affect the hippocampus in the brain which is responsible for memory). Again, highly recommend talking to a medical professional to know for sure because brains are unique lil things 😉
@@breannadowns7365 I had been having symptoms (deja vu, weird smell and intense fear) for around two or three years. I would have auras a few times a week usually when I was really stressed out, short on sleep, things like that. When I had my grandmal it started out with these auras, literally nothing was different about it. That is what was scary for me and partner (who thankfully was there). I would suggest seeing a neurologist if you can. I know sharing symptoms like this can be weird, especially not having an answer right now, but it could get you one and save your life. Repeated seizures will absolutely impact memory (from what I’ve researched). I’m on medication now and haven’t had any breakthroughs for around a year. It has changed my life… had I been in a car driving while it had happened… I just can’t recommend telling your doctor or neurologist about what you are experiencing enough. Best of luck, feel free to reach out whenever!
I would describe that smell like smell you get in your nose when you fall directly on your nose or when someone punch you
Thanks for the vid. Do any of you find that you somehow instantly forget the seizures and also that your memory as a whole is really bad at times when you have them more frequently?
Thanks for your questions Amelia. I personally don't forget my seizures after they've happened. I have noticed general poor memory when I was having seizures very frequently (multiple times a week) and also for the first few months after starting new medications but after a while this went back to normal. The main memory issues I noticed included forgetting the names of things (TLE affects the hippocampus, the language center of the brain) and losing track of what I was saying mid-sentence. At work, I started writing down all the small details to do with tasks so I could easily jog my memory. But like I said, this has got better over time since not having seizures.
I have TLE, I sometimes remember my seizures and other times i can feel them slip away from memory and no matter how hard i try i can not remember what it was even tho it was so intense in my head at the time
My memory has definitely been affected however I don't know if it's from the seizures or all the years of pharmaceuticals. I'm actually weaning myself off of numerous medications and I feel better than I have in decades! I find CBD with a little THC is very helpful with my seizures but it depends on where you live.
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.
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
Hey, since you haven't had a seizure in so long were you able to get your driving licence back?
Just as I typed that question you said you did in the video. 😅
Haha! Yes, and since filming I still have my licence (still on medication, still seizure-free) ☺️
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.
Best of luck to you! Take care 🙏
Thank you so very much for sharing your story. This has been fantastic for me to watch. I too have TLE and just needed to hear that someone else has and does experience what I do. So similar. Thank you for the links. Best wishes to you.
💜
Finally, some great information for us. Thank you and nice job on the 4 years!
Thank you :)
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.
This was SO HELPFUL thank you!
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’ve been having these exact episodes for 2 years, never though too deep into it, but yesterday i had a bunch of water like liquid pour out of my nose for no reason, so i’m extremely worried):
My seizures are pretty much the same as yours and are triggered by music as well. I was curious, if I don’t go the doctor for my seizures will they cause damage long term without medication? I’m scared to go to the doctor because I really don’t want to lose my license I’m young and in school and need my car for that and just social life in general. driving and listening to music is my favorite thing to do.
@TH-camdancedreams I understand the fears you have, and there's no denying that being diagnosed is a challenge. I highly recommend you do some research about what can happen if seizures are left untreated, particularly effects on the hippocampus. In addition to that, driving while experiencing seizures is a real danger to yourself and others on the road. You have to choose what you do. If I had to choose again, knowing that I would lose my licence for a temporary period but that being medicated would keep me safe, I would choose to see a doctor every time. Best of luck to you
I've had left temporal lobe epilepsy for most of last 20 years. The first few years only had the focal onset awareness seizures and didn't realize I even had epilepsy. Then complex partials suddenly began and brought aphasia and hazy memory into the partial seizure experience due to Wernicke's area and left hippocampus getting affected. Temporal lobe partial seizures can become generalized tonic-clonic seizures, mine did very often. I had two operations on left temporal lobe one being Amygdalahippocapectomy which removed the left amygdala and hippocampus, that ended the generalized tonic clonics but not partials.
Thank you for your comment Andrew! There's still so much I have to learn about epilepsy. I'm glad your tonic clonics have stopped, that must be a relief. Wish you all the best, take care!
Keto Diet was designed for epilepsy and those who don't respond to meds very well.
Nice vid. Thanks. Can we know which medication stopped your epilepsy? And why did you have to change your meds if they were working?
I was on tegretol, which controlled my seizures but I changed neurologist to a doctor who I could communicate with better and he suggested I change to keppra. Tegretol had some medication interactions, such as making the contraceptive pill less effective.
@@KyraThomsen is Keppra as effective? It seems it's got side effects like depression etc. Are you feeling better with Keppra and what dosage of Keppra stopped the epilepsy for you?
@@OrMon-r5f Every medication has side effects, and everyone will react differently. All you can do is try what a doctor suggests and go from there, knowing you may need to adjust meds several times before you find the right thing. Good luck 👍
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.
Thnaks so much for such a good informative video on TLE.(temporal lobe epilepsy) I appreciate the production quality is very good as well. I have had focal aware TLE for 55 years and was only diagnosed and treated 3.5 years ago. The doctors in the past that I told had no idea what my spells were, and like your experience thought they might be migraine symptoms or panic attacks. I eventually learned to keep them secret, thinking I might be crazy for most of my life having 8-10 a year. 10 years ago they came back in clusters every 4-6 weeks of up to 50 seizures in 2 days. Searching the internet helped me find information about possible TLE and I had a receptive primary doctor that listened and got me to a neurologist. I have the intractable form where I still have about 1 per week even on meds, and I'm on my 8th med.. Now I have also developed tonic clonics as well. So sorry you have to deal with this disorder but very glad you have found relief. The side effects from the medications are not easy though, as I'm sure you know. Blessings to you and for such a good video, and hope you stay seizure free for the rest of your life!.
Thank you so so much for your kind words and for sharing your experience. I can't imagine experiencing something for so long and not having answers and feeling like you're going mad. I'm so happy to hear your doctors did listen and provide some help, even if medication only gives some relief. I'm sure you have a lot of feelings around your own diagnosis and how your seizures have changed over time. It must have been a lot to go though, and I hope you continue to get good support from your doctors and community! Thank you again for your comment, I wish you all the best :)
@@KyraThomsen Thanks for taking the time to reply. Your video is the best I've seen on TH-cam about focal aware seizures, and I've seen them all. Here is a link to a video of an epileptologist to doctors on why focal seizures are often missed or misdiagnosed by doctors. This video helped me get diagnosed. Blessings to you.
th-cam.com/video/muPWaW-1Bqk/w-d-xo.html
I used to be 3 seizure medications and over the last few years I've been weaning myself off of them. I'm currently on my last seizure med and I feel better than I have in years! I'm happier and healthier than I have in decades; I find CBD with a little THC is very helpful with my seizures! Take care!
I was diagnosed with the same type of epilepsy almost 2 years ago after having a convulsive seizure un the bathtub. I have been struggling over the past few months again and just had another big epileptic episode a few days ago.Trying to figure it all out. I wanted to thank you for sharing your story.
So sorry to hear that Talisha, how scary. I'm glad you're okay and just know that you're not alone while you figure things out. I wish you all the best, take care 💜
@@KyraThomsen Thank you very much and I send love from my family to you and your journey as well
I'm sorry you're going through this! I was diagnosed with simple and complex partial and grand mals as well and grand mals are the worst! I wake up exhausted, every muscle in my body hurts, and all I want to do sleep! I used to be 3 seizure medications however now I'm weaning off of my last seizure and I've been having some simple and complex partial but no grand mals. I would rather take CBD than put up with all the side effects of the medications but that's just me! Take care and best wishes!
@@hannahg39 Thank you so much! I wish you the best of luck on your journey. The part I am finding to be the hardest is finding peace when everything goes completely out of whack, and no control.
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..
Just watched your video....your symptoms were exactly the same as mine..
Also the treatment as well...
Mine were the same from a child they could be a couple of years apart.. to being around 45yo when they were 8 - 10 a day and diagnosed as left temporal lobe epilepsy.
20 yrs ago Mine were diagnoses as stress etc... I was given anti stress pills etc
Ah well 2017 I had my left temporal lobe removed and although I still take the meds I no longer have the auras.
I'll be honest though... eventhough it was a difficult situation sometimes, also with the metallic taste ... when they gone I must admit I sometimes miss them!! Strange but they grew to be a part of my life after 50 yrs and when they went .. seemed strange..
Although sometimes I do get a vague light one and they seem to be a little more often... I'm not having anymore brain removed as my short term memory is already gone.. I make notes of everything and my phone reminds me.... also the main thing ...I find it totally impossible to remember anyone's name unless I knew you more than 20+ yrs ago nothing wrong with my long term .. hope all still going well..
My goodness what a journey you've been on with your epilepsy! Thank you for sharing your experiences. It doesn't seem all that strange that after experiencing these seizures your whole life, you could kinda miss them when they're gone. I'm glad to hear you're doing well, and managing the memory issues as best you can. Wish you all the best, take care!
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.
You are not alone in this experience Bre, you are managing these challenges incredibly well. It is hard. Lean on your support network, keep chasing the answers you need, and please please take care. Be kind to yourself. You aren't crazy. You will be through 💜
@@KyraThomsen you’re so so kind! Thank you for responding to my comment! You’re incredibly strong and brave for sharing what you’re going through and facing every day with a smile!
@@brelearnsguitar Ditto!
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.
Callum, mate, thank you so much for this update. You brought tears to my eyes. I'm so happy that your surgery went well, and that you're now on the next part of your journey which is recovery and finding the right dosage and medication for this next stage. It's so complex and you have been down a long road, but you are an inspiration. Thank you for raising awareness through your own channel. You are bloody amazing. Take care of yourself, and feel free to come back and let me know how you're doing in the future. All the best 💜
Stress and epilepsy go hand in hand - perhaps the stress of doing your HSC triggered the seizures?
Were you having late nights when you started your new job which triggered your episodes?
Yep, stress and sleep are triggers for me.
Thank you for sharing your experience