I was diagnosed 6 years ago it took so long to find out it was temporal lobe epilepsy I thought I was going mad, it’s good to hear other people’s stories, you have really made me feel less alone and weird thanks
Hi, I am so glad! That is exactly why I made this channel. I felt very alone and didn't know my diagnosis for 14 years so I felt very confused. Hope you are well.
Thanks for sharing this Ariel I was recently diagnosed with seizures as well after 13 years of being diagnosed and told I was having panic attacks. I'd get that Deja Vu feeling like a snap of the fingers everything was more clear and vibrant for a second and then it would be that feeling of tipping too far back in chair and catching yourself at the last second flooded with adrenaline and roaring emotions ripping through my body. I've been put on Keppra and having a hard time dealing with the side effects but it's better than what I was going through before.
Wow, I've had such a similar experience. I can't stand the side effects of my meds, sometimes you have to keep experimenting with meds. For me as well, the meds and such are not anywhere near as difficult as the seizures. Be well!
i was told the exact same thing for 15 years. when you can clearly tell a panic attack is nothing nowhere near a seizure! i kept mentioning this same sensation in my feet for such a long time and got told it was anxiety and that i also had panic disorder - which those panic attacks were so similar to my seizures but i had impaired awareness of which my aura for bigger seizures sometimes started this so called panic attack.however while some of that may be true... or maybe it isn't and was misdiagnosed when it may be epilepsy. they put my seizures on back burner because my EEG and MRI and all tests i could ever had came back clear. wasn't until just recently that i had a "big" seizure after 6 years of not having one... (but have had mini seizures between then) i didn't even know the seizure was recorded! and i took a chance to be referred and chose my local hospital where the neurologists are at, he saw the video and he said he had great difficulty differentiating epilepsy and panic attacks?.... but he swerved more towards epilepsy and described me as having tonic and clonic movements as well as a focal onset seizure secondary generalisation! i'm currently started on lamotrigine 100mg....i've been on that for 3 weeks i think now but sadly haven't noticed any change to my sensations in my feet which mostly can be very different to my aura but does bring the same fear but not as severe as when a tonic clonic comes along. so we're still trying medication to see if it will help these daily sensations which they don't know if its focal or anxiety. but i was told anxiety and depression and epilepsy have close links with each other. i just hope all works out in the end :( and i don't want it all blamed on anxiety like it usually is. i don't really know what to expect with this medication, does it stop the sensations altogether or does it make them less daily? my epilepsy nurse said i have 3 options.... try see how i go on with this dose a while longer....increase the dose.....or go back to neurologist. weird how i was kept from this diagnosis for so long and i'm now convinced maybe the doctors saying it was panic attacks were right. its like i have this fear of being turned away because nothing good ever lasts with me ... so i'm kind of pushing myself back...does that sound mad? also i still live in fear everyday of having another seizure to the point where it took over my entire life and was just existing rather than living and kept watching the world go by from my window. so that stresses me out too probably triggers seizures but i try my best to change my thinking but sometimes i can't :( sorry for long comment and i'm not really good at explaining things. ha... hope you got your seizures under control. its shocking how so many people suffer for so long when it could of been sorted from the very beginning. xxx
thanks you so much for this. I got diagnosed with this last year, and even after diagnosis I struggle to believe I have it because I don't have the 'tonic clonic ' part. it made me feel like I was deceiving someone, saying I have epilepsy (even though my behaviours are really bad). if searched on CZcams for ages for a video that addresses my type of seizures, but none of them talked about this. hearing someone say it in a video really makes me be more at peace with my diagnosis and not feel so alone. my psych gave me the diagnosis, but he didn't describe like you do to make sure I actually understand , all I really heard was 'epilepsy'. For months I had been passed off as having psychosis, at one point I was put in a high security unit for schizophrenics. it means so much to hear someone tell me im right, not crazy. im on meds and its the best I've felt in 10 years.
Beatrix Passmore I am so glad that I could be of help with this. Honestly the worst thing about my life and not knowing what the partial seizures were for 14 years was just thinking there was something wrong with me. I didn’t know what or how but I couldn’t understand what was going on. I’ve definitely had doctors who didn’t believe me and people who try to make it a psych thing. I’m just so glad that you got it worked out and I’m amazed that it was with a psychiatrist. But I’m so grateful that you’re on meds that are helping. I feel the best I’ve ever felt mentally because I’m having almost no seizures. I have some really severe chronic illnesses that inhibit my functioning and cause me severe fatigue and I’m in a wheelchair and I can tell you I am happier than when I was having all those seizures, i’m glad that these videos could help you understand it a little more too since it sounds like your doctor didn’t really go into much about it. That feeling of doubt around how real your seizure are, is something I have struggled with a lot. it went on for so many years of being scared to tell anyone that I felt so scared that it wasn’t real. It still haunts me sometimes, and I’ll doubt myself. I would say for me it has taken time to really really encourage myself to believe myself and listen to myself and talk to other people with epilepsy and get really clear that this is a real neurological thing. I also had tonic clonic seizures from age 12-22. I finally got those under control with meds but I was still having the simple partial seizures and like I said I didn’t know how to tell anyone and so I didn’t. Let me know if there’s a specific thing that you’d like a video about that you feel like I haven’t covered that your doctor didn’t cover it would be cool to know what would be helpful. I’m so glad you’re getting help, I wish you the best. I like to say to everyone- remember your experience is real.
Having just been diagnosed with TLE. I get a lovely aura of coffee and then within a minute, I have a full tonic-clonic seizure. It took 4 doctors to actually get someone to listen to me. It's been so frustrating but it's been nice to have a name to it. I've run into a lot of people say that I'm not really an epileptic that I am just trying to get attention. This video helped me a lot in understanding what's going on and what I've been diagnosed with.
I am so glad it was helpful. I really think we need patient descriptions at doctors' offices for them to give to people and say, "do you have anything like this?" The doctors have never experienced it so they really shouldn't be explaining it.
I applaud you for sharing about your life. I do not suffer from seizures or Epilepsy but I am impressed with the detail of the information you are sharing. Thank you for your transparency and courage.
Tom andWanda Thank you so much for saying that. I really appreciate it. It’s hard to be vulnerable sometimes but I realize now that it gives the most opportunity for other people to get support.
I'm 15yo and I have a weird feeling sometimes, it's like a deja vu, a memory invades my brain and when I try to remember it quickly disappears, it happens out of nowhere, I also have a feeling of being spinning around myself. I don't know what to do because those memories and the feeling is so good and real, but at the same time I don't want to hide it through a spiritual explanation and pretend that nothing happened lol.
keeole I’m really glad the experience is not a bad one because that’s much better than if it was horrible. If it’s not bothering you you could just wait and see if you ever get other symptoms or not. You could go to a neurologist and get some testing. But I always like to remind people that a neurologist will do an EEG and if nothing shows It doesn’t mean you don’t have epilepsy, same with an MRI. Just because you don’t have a visible lesion or some thing in your brain, doesn’t mean you don’t have epilepsy. Many people have what’s called idiopathic epilepsy which is where there’s no known cause. So if it’s not bothering you and you don’t want to stop it with medication it may not be necessary to do anything about it unless you start having other symptoms or other seizures and they are concerning. I agree not to make it a spiritual phenomenon. I say that because my family did that with my epilepsy and it was very traumatic. I have Learned that for me any physical health symptom is real and important to believe that it’s real. I’ve had so many times where doctors were disbelieving and people were dismissing my illnesses because I have many that are not well understood and difficult to diagnose. I find it helpful to just separate that from my spiritual life. And I have a very strong and happy spiritual life. So I hope that helps a bit. Like I said even if it is a seizure you don’t have to do anything about it. But understanding that it’s a real medical phenomenon and taking it seriously if you need to, I think is very important. Let me know how it goes if you want. I wish you the best!
I am so glad I found your channel! I was dx with TLE just 2 months ago...but the more I learn about it...it goes hand in hand with my "psychiatric" labels. Thank you...it has made me rethink everything. I am beginning to think that I have had TLE for years!
forsiamese4me Hi! I’m so glad you are finding them helpful. It took me 14 years to realize the partial seizures were seizures. Most docs diagnose something psychiatric. I also have depression and anxiety, which are very common with Epilepsy, but that is very different than when doctors try to explain everything away with a psych diagnosis. I hope you get some clarity rethinking all this. Also check out my video on PTSD from Epilepsy. It can cause psych problems because of the trauma from them. For me, getting the right Epilepsy meds and stopping the seizures mostly along with treating my depression/anxiety/PTSD, my quality of life is greatly improved. Wish you the best! Let me know if you have questions, because teasing out what is a seizure can be difficult. The more you learn, I think it gets easier to see the difference between seizures and psych stuff. I tell doctors, don’t tell me what is what, I have both, so I know much better than you the difference. 😁
Ive been treated for temporal lobe, treated for years, have had years of seizure free, and no longer on meds, very rarely, ill feel like I've had a "small" something...recently went to spine neurosurgeon for different issue, i was quite stressed and i blanked out, said something odd, and that was it. Absolutely no pre warning, and no memory whatsoever of those few seconds. He did a quick neuro test, and left it at that, as i was there for my neck. This is not the first time ive recently had issues with saying things im unaware of that are irrelevant to my conversations ill be having. But de ja vu does not happen, i used to have VERY powerful one's. So these happen with no warning. Ive also been getting my what i call,"fatigue staring spells". Ill suddenly feel SOOO exhausted, and go into a staring episode in which i lose focus, like im looking out to distance, yet eyes crossing, im fully aware, but unable or unwilling to stop. Thoughts? I don't know if im just stressing out
Thanks so much for this video. I also have partial complex seizures in my left temporal lobe and can relate to much of what you said. I get very self conscious when I have a seizure/aura, but after I am fine telling anyone what just happened.
I'm glad you are able to deal with it. I hid my seizures for a long time, and I find it much better to educate people about my epilepsy if anything happens. Or even when I'm not having seizures. :)
hi! i find myself back at this video a lot because i am 99% sure this is what i have. it’s been happening for about 3 years now and occurs randomly about 4x in a month and then goes away for a while. my experience is pretty weird and it starts out with a vivid memory of a dream i have had that i have forgotten about. and sometimes i get a headache but not all the time. after the memory comes up i get a weird smell sometimes but not every “seizure”. but the weird thing is that about 10 or so seconds after the memory starts i completely forget what it was. of course i remember that i had it but i have no idea what that dream or memory was about. i have very bad health anxiety so i cannot stop researching symptoms but i am under the age of 16 so i can’t really go to a doctor with a parent taking me and i have told my mom about it but we just brushed it off.
Sydney Kratz That sounds a lot like it. My parents wouldn’t put me on medication, so I went to the neurologist and started when I was 18. I don’t think you should have to wait, but there is hope.
Have you ever looked at the timing of the seizures in relation to your menstrual cycle? I stated having seizures at 12, and figured out after many years that they would increase the 2 weeks before my period. That doesn’t stop them, but it felt good knowing when they were most likely to happen. They could still happen anytime. Keep learning and you will find a way to get to someone who listens. It’s just not always simple. Check out some of my other videos, see if they are insightful. Also, I’m going to add more about stories with my seizures soon.
Sydney Kratz 😁😁 I was lying in bed resting, and I saw it pop up. As my channel gets bigger, I’m not sure if I will always be able to respond to all the comments. But so far I have!
Stress was a trigger for me. I also get deja vu . I get a smell of burnt toast. My stomach rises and drops kind of feeling. The feeling starts at my feet and works up. Have about 6 seconds to get safe for the episode.
i’m just looking at this because i’ve been having these episodes randomly. it’s either a couple times a month or once every couple month. they last like a minute a piece and it’s this strong feeling of déjà vu. and i’m aware of what’s going on but it feels like i’m in a dream or something and i get super dizzy. afterwards i get in a extremely bad mood or super tired. i want to go to a specialist for it but i feel like my parents think i want something to be wrong with me. it’s been going on for a few years now
That’s really hard to know how to deal with this. I didn’t tell people for 14 years. I don’t recommend that. If you’re able to give any information that helps them to see that this is actually a legitimate possibility that it’s epilepsy, then they will probably take you more seriously. I know how many doctors neurologist and even Epileptologists don’t believe us often. I’m just saying that because I want you to know that just because one doctor or even your parents or anyone tells you that you’re making it up or whatever stupid thing they say, it’s worth still searching and advocating for yourself. When I was 18 I went to a doctor and got on epilepsy meds because my parents had not wanted me to be on them. I know how scary to see and how hard it is and I know how it just sounds like a psychiatric thing when you try to describe it to people. But check out this video and keep going. If it is epilepsy the only thing that stops it is seizure meds and I can tell you that my quality-of-life is completely different now. I am much much happier. There’s multiple resources including the epilepsy foundation website and I have a couple videos under a playlist called epilepsy resources. The book that I found very helpful was epilepsy patient and family guide.
Also remember that last thing you or anyone who is chronically ill wants to do is get attention or make things up so it’s really important to just tell people who say that stuff that they’re totally out of line and this is real. I’m going to make a video soon on medical neglect is the type of abuse and I think it’s really valid so keep going
Can you tell me more about what kind of memory issues you have? I have very selective memory issues that I've traditionally put down to "just the way my brain works" (names, faces, etc...) It's not a severe memory difficulty (I remember much of the time), but I will persistently have difficulty remembering more than a handful of names and faces over a select period of time...even if they're people I've known for years. I know who they are, but it's the details that I struggle with. I say this having recently realized that I may have been experiencing simple partial seizures over the past ten years (thought they were intermittent anxiety attacks) that match these descriptions of temporal simple partials almost perfectly, and will be seeing a doctor later this week to investigate. Great video. Very informative.
I was misdiagnosed with anxiety attacks for around 4 years. I discovered I was having focal seizures whilst on a health and social care course at college. The seizures started for sure in early 2011 and I wasn't diagnosed until December 2015, but I have memories of the same terrified feeling from my childhood. I have focal onset impaired awareness seizures, but I didn't know I was unaware until I tried to record myself and I couldn't make sense of my phone. When I told my Neuro that, she said that meant I go unaware. I see something else and I hear the same verse being spoken
Laura Evans I’m so glad you finally got the right diagnosis. I have tonic clonic seizures also, but no one suggested that seizures could be so different like the focal aware/unaware. It took 14 years for me to start to get those under control. Sometimes we have to figure this stuff out ourselves. I read a book on Epilepsy and finally read patient descriptions of these seizures, and was like “wow, I finally understand “. So grateful you were able to also. Good luck!
TLE seizures are horrible because you're so sure you've thought about something that hasn't happened yet, but something triggers you to that deja vu feeling. Next thing you know, you're on the floor. I have the unfortunate side-effect of my heart stopping during seizures (I don't jerk around or do the typical epileptic fit, I just lose all muscle motion and hit the floor) My memory has been messed up between the time I started having seizures (Age 25) to when I started getting medication (Age 29) It's really frustrating sometimes when people go "oh, you remember when xxxx did that xxxxx" and you just can't :( I'm 33 now and have been controlled with Lamictal (Lamotrigine) for a while.
Wow that sounds really scary. Gosh I’m sorry that you’re heart would stop. I have a lot of memory difficulties because of having 14 years of uncontrolled seizures. I totally understand the upset of just having no idea what people are talking about. When I was in high school was when my memory problems started because my seizure started at 12 and I just would feel so stupid for not being able to remember because I have no idea why. Which is very sad. It’s sad that people with chronic illness in general blame themselves. I’m so glad that your seizures are well-controlled now. I know for me it’s upsetting that there was that time that I didn’t have medication and it’s upsetting that that caused permanent damage. I have a video on memory and epilepsy that you might find interesting. It’s helped me to just be totally frank with people, and if I don’t remember something just say hey I have memory problems for my epilepsy I don’t know what you’re talking about. And it helps me because rather than blaming myself for feeling stupid I just tell people that I don’t know because it’s not my fault there’s nothing wrong. I wish you the best and I hope things just keep getting better. I found that learning to cope and to forgive myself for not remembering things makes it not such an upsetting situation.
Very helpful in helping me understand this horrible Sh*te, especially the part about emotions being triggered by Petty mals. I'm officially brain damaged with scaring on my hippocampus. :( Thanks for this.
Happy Camper I’m so glad they are helpful. It’s amazing how much seizures can affect us in so many ways. They have a huge impact on our bodies and our lives. Be well.
Explaining your symptoms to your neurologist/epileptologist is the most crucial part of your diagnosis because your tests could come back normal. I always got a strange aura before mine but had no memory after. I was misdiagnosed bipolar because I had hallucinations. I had deja vu when traveling to new places and even had strange smells. Don't leave out any symptom no matter how irrelevant it may seem. It took ten years to reach that diagnosis and it had already spread to other parts of my brain by that time. I had migraines and fear. I didn't respond to my first medication so it can take time to find an effective one. You may experience some side effects from them as well. I had past experiences come up that I had completely forgotten. I also became engrossed in information (even learned another language). It's such a strange form of epilepsy.
I had that situation where my tests were normal and it had to be a clinical diagnosis. I didn't tell my doc for a long time because I was afraid they would say it was psychiatric. Glad things are going better.
I had 2 sezures this week. I remember everything? Except not? I'm aware of my condition but... it begins with deja vu? Anyone know what that's about? It's like my episodes have something to do with the future? Or the past? Memory? Are you confused yet? Because eye am... eye.... Anyway... It is comforting to hear from others like me... I've always felt so alone Also, I have refused medical treatment, and so am severely satisfied by others like myself who have actually submitted to medicine
Hellow i like the Way you've Explained it About Epilepsy I was Diagnosed with it and had it on Both Sides I used to Have Grand Mal Seizures, but has made a big Difference since I've had Surgery has he lped a lot Living with it isn't Easy . But ya Try not to let it Worry You..👌Brendon..
Do these seizures for you seem to change your brain for a short while after a seizure? Mostly grand-mals? I get very philosophical after them lol. Your symptoms are like mine, the deja vu, and I get a rush of joy at times and a rush of fear at times. Our neurons go out of the norm so no wonder these things are altered. I have felt very ecstatic afterwards as well.
john higgins I don’t know about the philosophical. I used to wake up with a terrible headache, exhausted, and I usually hurt myself. So I would fall right back asleep for awhile and then have a headache for at least a day. I felt so out of it. There is definitely a post-ictal state (after seizure) that can be very different than normal. After a partial, I feel totally confused and literally cannot think. I have gotten lost after one. Now they are more mild so it’s not as bad. Mine are always fear or doom. I’m glad sometimes yours are a happier experience.
I always know when a TC is gonna hit. You know that feeling when you reach a floor in an elevator? I feel that exactly 6 times and yay. I go wandering during focal unaware seizure. I think those, for me, are the most dangerous. TCs I know and can prepare for. The most annoying bit is when folks who know you are not aware and they still tell you later that you act like you’re on drugs or some crap when you’re having a seizure and it’s like well that’s what happens when your brain starts randomly firing signals. That more than anything annoys me about the rest, I can deal with my vision hearing no issue I work around it. I just don’t understand why people still have surprised when it happens because it’s a seizure SMH
Wanted to share some of my stories throughout my life. I just turned 40 and as a small child I can remember staring a lot, doing something odd with my face and my dad would tell me to stop because my face would stick that way. He was just joking... My dad had grand mal seizures that started a couple years after he had a major stroke at 35 yrs old. As a young child (3-5 yrs old) I suffered a couple of head traumas one requiring 7 stiches in my head. Skipping to adulthood I continued to have staring spells but they seemed to last much longer. I can remember going out to eat with my husband and children several times and while sitting at the table I would go into one of these staring spells (trance) where I could hear every single they said/asked and my children would wave like crazy in my face but I couldn't blink, move my eyes, body, or speak. After a while I had to tell them when I do that not to wave in my face or draw attention because it was embarrassing to me because I couldn't respond and it looked like I just allowed my children to do what they wanted. At this point I didn't know that I was having seizures nor did my husband and I think he thought it was just a joke between the kids and I since I was a stay at home mom/wife. Mid. to late 20's I talked to the NP I saw as my PCP because I started having crazy things happen in my sleep like out of body experiences, horrible nightmares that included out of body experiences that would wake me up and I would feel terrified. She left that office and the NP that took me over as a patient flat out told me I was crazy and need to see a Psychiatrist then refused to even fill my normal meds. like acid reflux medications. Because of her I refused to go to a doctor for years and decided that I was just crazy like she suggested I was. Now I really wasn't having out of body experiences but I was having Nocturnal Seizures. It got to the point that they weren't only happening at night but a feeling would come over me and no matter where I was I knew I had to lay down or pull over. I would be out of it and NOTHING could wake me up but I could hear any and every single thing that was going on or being said like if someone left a message on my answering machine.. LOL you know back in the day when you had a home phone and you could even hear your out going message saying you have reached so and so please leave a message? The first few times the major ones happened was during the day while I was home alone or while my youngest child was napping. I remember feeling so scared because I actually thought I had died and that my body was trying to call out to my soul to come back but it was literally all in my mind/head. My body was paralyzed and my voice was paralyzed but I remember my mind crying for my soul to come back and it would after seeming like it was crawling off the bed very slowly several times like it was playing games with my mind, looking out the window, looking out the front door but not looking over my body that I can remember. I could literally feel my soul sit up before leaving my body (clearly my soul wasn't leaving my body) like it was trying to torture me with fear and it worked the first few times. Now to my mid/late 30's upon waking up I started having (still considered Nocturnal seizures because of timing) more of the grand mal seizures my dad had. Now I have hit 40 and things are still changing. I woke up a few mornings ago with a spot over one eyebrow bone really sore, slightly swollen with a lump in it but no bruise. I asked my daughter after I picked her up from school if I had fell or hit my head the night before and she said not that I know of but... she said after she got out of the shower I went into the bathroom and she heard a bang and everything got quiet. She didn't think anything about it and got in the bed but then started hearing the microwave being slammed shut over and over. She stated that when she came out of her room and into the kitchen I was opening and slamming the microwave door close. She said she talked to me and I responded but kept opening and closing the microwave door then went to bed. I remember her coming out of the bathroom after her shower but I don't remember going into the bathroom or a bang, I don't remember opening and slamming the microwave door close over and over (wasn't) fixing anything, and I don't remember going to bed. As of now all of my prior tests have came back normal but I haven't had any done in several years. Oh and I meant to add that my husband has said I have woke him up leaning over him trying to do chest compressions etc. which I don't remember at all and that's not good because he is a heavy sleeper and because he has Chiari malformation (hernia between the cerebellum, brainstem, upper cervical cord, and bony cranial base) and gets disoriented during sleep etc. which requires me to calm him down from time to time so it's not a good combination at all. Thank you for sharing and regardless if I sound crazy or not if it helps just one person I am glad I opened up because I haven't even shared details with my family or friends of the things that I just shared. I am learning to let go in hopes of finding help and to help others.
Thanks for sharing, I hope you are getting more help because living with all that going on is so stressful. i am so grateful my seizures are mostly controlled. I have had docs who told me nothing was wrong, I had to change docs and find people who would help me. No matter what a disorder is, seizures or not, your experience is real and valid and you need help.
I'm 22 and had my first seizure this year , done EEG brain test and found out I have partial epilepsy in my left part of brain and its exactly like you have described, currently I'm taking convulex and so far haven't got anymore seizures
I'm currently being tested for this, it was first diagnosed as anxiety. A year later, and I'm still getting dejavu everyday and I'm getting it in my dreams, and because it's gotten that bad, my psychiatrist wanted me tested for FLE
I'm glad your psychiatrist is checking it out. I appreciate when doctors really try to figure things out if it doesn't seem right and not just blame it all on psychological factors. I have terrible anxiety. Especially now with PTSD from the seizures. But, it's definitely different for me than seizures-now that I know what they are. I hope it's going well. Have you gotten tested yet?
thank you for this video. if i may ask, can partial simple seizure escalate into temporary super Enhanced synesthesia? where feelings soar 50 folds gaining color sounds and visual imagery. where objects\sounds\colors have feelings. where visual sensory input is transformed \ perceived through 3-4 senses simultaneously. where gaining impossible awareness.
i've been dealing with de-realization or dissociation for a while now, or that's what my doctors and psychiatrist tell me what it is. Now i am prescribed prozac 20mg, but i have been on it for about 2 years now and it has helped balance my moods a lot. I used to be on Zoloft which completely set me off in a dream state but this was a different feeling then i've had the past year. the past year i go into these moments where i forget where i am, what's going on, everything feels far aware and sounds far away, de ja vu- starts to happen, i can't remember what's going on but i feel as if i know, it's a whole different feeling of dream state, and it lasts like a minute or two and , it's like i have to wake myself up. when i go into these episodes i often stare and start fidgeting with my fingers i'm aware i'm in some sort of different awareness, and i can feel it coming because i start getting an anxiety and then i go into some sort of distant numb awareness. i do worry that i'm not actually being taken seriously with what i'm dealing with because it's been getting worse. it just to be once in a while and short and i could just snap out of it, but now it happens a couple times a day now, and the worst one that i've had is i was in the car and we were driving home and i looked out the window and then all of a sudden we were home. i wasn't tired, i wasn't bored i just had simply looked out the window and it's like i blacked out. it caused serious confusion for me and i couldn't remember driving home.
I don’t know if I have this but my “panic attacks” do not act like normal panic attacks. I’ll be sitting somewhere and suddenly have this deja vu, typically a feeling like “omg this has happened before in this place”. Then all of a sudden I feel like I’m on an adrenaline roller coaster. It lasts 20 seconds or so and in that moment I feel like I can’t move. Then it’s over…
My 18 yr old son had a grand mal seizure Friday afternoon on the way home from work, lucky my brother was driving and called 911 right away. He has never had anything like this before and all the test and CT scan were negative. They sedated him with ativan and haldol in the ER because he was confused and agitated so he slept for almost 24hrs afterward but otherwise feels normal. He says he felt dizziness and a feeling of having had been in the situation or had the same thoughts he was having before and when I was reading a google description explaining s/s of seizures, when he heard the word deja vu, he stopped me and said that is what he was feeling a few hours before he had the seizure. So I started to look up deja vu auras and found your video. Im hoping that it was a one time occurrence because of lack of sleep. but I'm very concerned and don't wanna miss anything so I am following up with his pediatrician. He had a negative CT scan but they didn't do an MRI. Should I request on or what other things should I be having them test for? He is otherwise healthy not taking any meds, he does work in constructions doing masonry work so maybe he inhaled some chemical idk. He did say he's had that feeling of dizziness and deja vu before a year or so ago a few times but without anything happening afterword. Thank you so much for sharing your experience.
That sounds really upsetting. I'm sorry you are having to deal with this. Epilepsy can start anytime. There is not always a known cause. All I can tell you is my experience. I had my first tonic clonic (grand mal) seizure when I was 12 while sitting in class. I had a CT, EEG, and MRI. None showed much. It was another year before I had another tonic clonic. During the next 10 years when I was not on medication or medication that worked well, I had over 100 tonic clonic seizures. 90% were in my sleep. I didn't know that what I was experiencing with the partial seizures was a seizure for 14 years. Meaning, no doctor or anyone had said anything remotely similar to what I experienced, even though I had seen a few neurologists. I read about Temporal Lobe Epilepsy in a book, and was like "WHOA!", that's what's happening. So, since then, I have tried 12 meds, and I am now happily almost seizure free. I have had about 5 CT scans, a sleep deprived EEG, multiple regular EEG's, a 6 day video EEG, and 3 brain MRI's. Some people don't show seizure activity in their brain unless they are actively having a seizure, and have no lesion or anything show on an MRI. So, knowing if he has Epilepsy or not, is not just based on tests unfortunately. What I CAN say, it that all was dangerous and traumatic. I would be most worried about the fact that your son works in construction or is driving, because that would be very dangerous if he were to have another grand mal seizure. Utlimately it comes down to safety. If he has experienced the simple partial/focal aware/auras before, then it is very likely he has had them and they have never "generalized", meaning spread to the whole brain and caused a tonic clonic seizure. I had thousands of partial seizures that did not turn into tonic clonic seizures, but I had over 100 that did. I did many things like swimming in rivers and driving during those years. I did have one where I fell down a flight of stairs and almost hit my head on the fireplace, one where I passed out outside and hit my head on concrete, and others that were incredibly dangerous. It's all very scary and new I'm sure. But, I hope you are able to get some good help. If a regular neurologist is not helpful, you can see an Epilepsy specialist. But, tell your son, his experience is real. Sometimes neurologists are arrogant and wish they knew more than is really known about the brain. I really hope that helps, even though it might be hard to hear. I am sending you good vibes. Sorry it took me so long to get back to you, I have another chronic illness and have been too sick to get online.
I really appreciate your reply. Thank you so much. He's scheduled for the Epilepsy Clinic on the 19th. His primary care doctor say they'll most likely start with the EEG which I feel will be a waste because like you said it'll only show current seizure activity and he hasn't had since the first one. They will most likely clear him to go back to work next week and that's kinda of scary. We're praying that it was just due to severe insomnia. I will keep you updated. Thank you and I'm also sending out good vibes and prayers for healing and good health 💕
Courtney Reid 😊 thank you. I’m glad he’s getting things checked out. Some people do have consistent mild seizure activity in the brain that can be seen on an EEG. Hopefully he will be safe whatever outcome.
I haven't been diagnosed yet. I have an appointment on the 24th of this month, but the appointment is with a sleep doctor. My PCP thinks I have narcolepsy with cataplexy, but my symptoms and my intuition leads me to believe I have TLE. How do I relay this to my doctor in a manner in which she will take my concern seriously?
graysonmassey i’m guessing that your doctor will make you do those tests for narcolepsy first. Basically, it’s hard to diagnose epilepsy so they will want to rule out those other things. I would say wait until that’s over and then they will take it more seriously if you still either feel like there’s something more than just the diagnosis they give you or if they are not able to find a diagnosis to suggest that you really think it might be Epilepsy. You can also always get a second opinion, doctors egos are sometimes a big problem, wish you the best!
Hi. I’m curious if seizures can be hereditary? My mom gets seizures but hasn’t had them in a while. I have been having these uncontrollable body movements and I can sometimes feel it occur in my head. Like a weird zap feeling or a tight sensation inside. A pressure feeling. It affects my eyes, speech and breathing.
It’s amazing how many different things can be a seizure. Epilepsy does run in families sometimes.Regardless of what it is that sounds very stressful and uncomfortable and scary. I hope you’re able to get some help with that.
@@arielonhealth I had to go to the emergency room yesterday, my mom had to take me. It was bad but as the day went on it got worse. I guess when I was first go to the hospital before, I was diagnosed with pseudo seizure, but my psychologist didn’t prescribe me anything. So the doctor had to write me a recommendation. I feel bad for people who have something similar but aren’t prescribed anything.
@@arielonhealth thanks a bunch. We are thinking of seeking more opinions and help in the matter. Sometimes the most I can do is just a walk down our drive way and maybe a chore but that’s pushing it. The next day it seems that my symptoms usually regress and I’d have to recover.
I've had about 8 episodes over the last year 2 I have completely passed out one driving and one at work. I was admitted the first time and the stupid doctor said I "just fell asleep" um if you knew me you'd know how funny that is even if I am dead tired it takes me two hours to sleep. so they released me. it went away for a while so I thought it was related to my sugar or anemia because when I get these memories or focal thoughts and I zone out and have trouble breathing and if I pass out my glucose has been in the 70s but when I don't pass out my sugar has not changed. I don't always pass out but the feeling the aura happens. also my breath slows and I can feel my body holding my breath and I have to force myself to breath, if I don't breath I will pass out. I'm scared and I don't know what's happening
Underwoodish Hi, that sounds scary. It's dangerous to have undiagnosed seizures, especially if you drive. Have you gone to a neurologist? I do think that an epilleptologist is the most helpful. Look into it if you can. Let me know how it goes.
As I wrote under one of Yours other vids, I understood as kid, 'my way of thinking is weird' - as I had anxiety inside me, or 'depression like' symptomes(like weakness and being unmotivated) WITHOUT any trait of TRUE depression. Like I WANT to do 1000 things at time... But staying AWAKE IS TOO F-KING HARD. I HAD/HAVE self value(between normal or skyrocketting, had quite high one) but with time couldn't remember own thoughts sometimes during putting them in WORDS, which f-ed up my socializing. I loved doing MANY things... But staying focused when almost falling asleep is... HARD. I saw 'weird pictures' or had growing REALLY ANTISOCIAL MOODS and 'distouched' way of thinking (like said, characteropath of F07.0 type - all is an option, even if it is not 'socially accepted' one) ... but I don't care for others a bit(to do anything bad). I FEEL MAD AS FXCK sometimes... But am always fully clear on my thinking... Or was, till starting falling unconcious for hours. 😑 I just recently started having 'motoric simple partial seizures', when till now I mostly had, for years it seams, sensoric, visual, psychogenic ones. As my memories always was slidding and my awareness is more and more foggy(then almost razor sharp, then EXTREAMLY, ON A BORDER OF TOO WEAK TO MOVE), I just acknowledged REALLY bad thing. Like if I am starting having MOTORIC(like inability to talk as losing voice, mouth-brain connection and mouth muscles jearking on one or other side) troubles... It looks like my 'condition' is spreading... Somehow I understood it just AFTER watching Your vid. Hope it is coincidence, but mouth-brain connection 'error' is almost as annoying as memory 'lenght' of 5 minutes at max. 😏
@@arielonhealth I can only feel blessed not having generalized (tonic, clonic, tonic-clonic) seizures. And since I last time had strong complex (hours going) seizure (evolved from simple partial), I feel much better, even my EEG next day was (first time in 13th years) good one. And even if 2 days ago I was close, I didn't blacked out since nearly month(and due to You-know days, it is normal to be bit more weak). I think, we must NOT think ONLY about 'when I can again size out', as we will lose our lives... And I should be just grateful and not moaning, I am sorry for that. I have time to prevent it spreading to t-c(in worst case). Most important... How are YOU feeling those days? 🤔
@@mbuszka5295 Thanks for asking, I am almost seizure free which is awesome, but I have another disease where I am homebound and in a wheelchair, and recently got worse, so it's really hard. Being sick in bed is no fun. But my channel brings me a lot of joy to be able to share with people what I learn. I believe it's good to have gratitude, but acknowledge the difficult reality at times. I am so grateful I am not having uncontrolled seizures, life being home bound and sick is actually better than seizures to me. Be Well!
I have not been diagnosed with TLE yet. Like you I neer told anyone about it be ause it sounded crazy, but now it is happening more and I am having more syptoms. With mine it comes with no warning. It comes for a dew seconds in the left side of my head. My head will turn for a few seconds and then I come out of it. It's painless... until recently it has been giving me headaches. My left eye has been twitching for a few days often and that's never happened before either. Not often anyway. I now have an idea of what this is though finally and know how to explain it to a doctor without sounding like a basket case. It's been going on maybe 4/5 years. I honestly never kept track. What I have mentioned does it resonate with TLE? After watching this video I felt like it did. What are your thoughts?
Sounds rough, especially when no one knows about it. I can't tell if it's TLE or not because so much of this is unique. You could also have another type of Epilepsy. If you have to go to your primary care to get a referral to a neurologist you can just try to be as clear about what is happening and specific with your symptoms. If you're confident that what you are experiencing is real and you need to get it figured out and can clearly say it to them, they are most likely to listen and believe you. I would recommend keeping track of it more exactly with dates, times, how often, and write it down. You can take a video of the twitching to show them too. I wish you the best!
Thankyou! It's been hard to catch, but now my eyes are constantly twitching. It was just rarely my left eye now it is both eyes and it's seems to be constant.
I think my boyfriend has this. He’s been having these “panic attacks” for months. But in the past few months 2 of these attacks turned into a shaking seizure. He says he tries to tell someone when it’s happening but the words don’t come out, he speaks gibberish, says he thinks he’s gonna die, heart goes fast and he sweats. Are those symptoms of it? It’s sudden and it only lasts him about 20-30 seconds.
Neurology is not well understood, and still many symptoms or types of seizures may be "uncharted" territory. When they turned into "shaking" seizures, was he conscious? I have had a time where I couldn't speak during a focal aware seizure and that was very scary. A lot of the other symptoms are symptoms of the autonomic nervous system (heart rate, temperature regulation). There are focal aware autonomic seizures as well. You might want to look more at those too. I think there are many things that affect neurology, and whether or not it is a seizure, it is debilitating and upsetting. It's important for him to remember his experience is real no matter what. In terms of treatment, basically seeing a neurologist and possibly getting on Epilepsy meds is pretty much the treatment. But, remember that some neurologists are jerks, invalidating etc. Also, some anxiety meds like benzodiazepines are actually Epilepsy meds. So, if for example, Lorazepam stops the "episodes" it may still be a seizure. I hope you get some help and he feels better. Best of luck!
Thanks so much. From what i understand he passes out and then seizes. He went to the nuerologist and they prescribed him lorazepam because he said they sound more like panic attacks, which has helped him a lot. He still has to go get his eeg and mri done but hopefully they can find out what’s wrong. Thanks for taking time to reply i appreciate it!
I'm glad he is having some relief. But, like I said, Lorazepam is also able to stop seizures. So, it may be seizures and not just anxiety. If they try a different anxiety med and he does well then I'd say go with it. Something that is not a benzodiazepine. Because even though it's an improvement, having the right diagnosis is important. Passing out and shaking is a tonic clonic seizure usually. I am concerned that the doc is not taking this seriously. It's good to get an MRI and EEG, but both can be clear and you can still have Epilepsy and those can still be seizures. If possible, try to get one on camera, that will help to distinguish.
Most importantly, if he is still passing out and seizing, that is extremely dangerous. I just encourage you to tell him that he can keep looking into it until it is figured out. So many docs tell people it's anxiety, it's extremely common to get misdiagnosed with TLE. If he has had 2 tonic clonic seizures, he is likely to have more. Lorazepam can stop any seizure in a high enough dose. But often, a dose for anxiety wouldn't stop a tonic clonic seizure. If you have any questions, please ask. I hate to have docs not take people seriously and leave them in a dangerous position. So, to clarify-a focal aware seizure (which I call a simple partial seizure in this video because the names got changed in 2017) can become a "focal to bilateral tonic clonic seizure" (secondarily generalized tonic clonic is this video). That is where your focal seizure turns into a tonic clonic seizure. If he is having focal seizures and starting to have them turn into tonic clonic seizures, it may continue. I hope he gets good help.
I’m not sure if it’s a seizure but since I can remember I’ve had moments of deja vu then sudden nausea and the urge to throw up but I never do. Lately I had experienced this and then seized and lost consciousness and memory. Was told by family it happened. Only 14 and very worried
thisisnecessary i’m sure it’s very scary. it does sound like you might’ve had a grand mal or Tonic clonic seizure. Having partial seizures and tonic clonic seizures is very common. Personally when I was 12 I started having tonic clonic seizures and so I was diagnosed with epilepsy because it was clear that I was having seizures because I was unconscious and seizing. I was not able to understand the other thing I was experiencing and I was not able to explain it and when I tried I got bad responses. So for me I didn’t tell people about the partial seizures I was experiencing for 14 years. If you think that you are having seizures, it’s really important that you get diagnosed because tonic clonic seizures can be very dangerous. I had them from age 12 to 22 and they were uncontrolled because my parents didn’t want to put me on medication. I personally think that was a horrible decision and my quality of life would’ve been so much better if I had been on meds. I am now on meds and have almost no seizures at all. I have not had a tonic clonic seizure for 17 years. I know this is scary and no one wants to have Epilepsy, but knowledge is power and getting a diagnosis will help you to get the right treatment and actually epilepsy can be pretty manageable. It’s really important to manage it right away though because otherwise you could end up in situations where you’re getting hurt by going unconscious, confused with partial seizures and get memory loss etc. And I don’t say that to make it scary I just want you to know that if you treat it right away and you don’t have a lot of seizures you don’t actually have a big impact in your brain. I know it’s not fun taking meds and I had to try 12 meds to get the right combination. But it was so worth it. I am now on a combination and my quality of life is good. If you have any questions or want to update me as you go along in this process if you go to a neurologist or anything, please do. One thing to know is that a lot of doctors and even neurologist do not know anything about temporal lobe epilepsy. Which means that the simple partial seizures you describe to them may not sound like seizures to them and that can be difficult. Many many people have been diagnosed with anxiety and psychiatric diagnoses when they have epilepsy. So if you see a neurologist you will need to know a lot about this type of epilepsy to stand strong with declaring your reality in case they dismiss you. Get a new doctor If they don’t listen to you or believe you, it’s not worth it having someone who doesn’t. Some epilepsy specialists know more, but for me it’s been hit or miss with every neurologist and Epileptologist. Some are helpful, some treat you like you’re crazy. Just remember you’re not, and your experience is real. Like I said also really researching this type of epilepsy will really help you get the care you need and the right treatments. If you check out more of my videos hopefully you can learn some more. Also there’s a book called the epilepsy patient and family guide. I found that very helpful because it had patient descriptions around actual seizures. I have quite a bit of information that I have gained through research. I did most of my essays in college on some aspect of epilepsy so I could learn more. If you would like some resources go to the epilepsy foundation and they are really awesome. And if you’re having trouble finding more about temporal lobe epilepsy let me know and I can try to direct you somewhere. I’m sure this is overwhelming, it’s not fun and it’s scary. But if you treat it, you might have a really good life that is not highly impacted by your epilepsy. I hope this helps and I wish you the best
Those of you that get it. How do you deal with the uneasy feeling in your stomach and how long does it last for you? Is there any remedy that makes it go away?
I found that the uneasy feeling tends to go away slowly after the seizure. But it can be increased if I feel like I’m in an unsafe situation already so for me it’s about trying to be safe so I can think clearly and assure myself that I actually am safe even when I have those feelings.
Takeoffyour Pants and jacket That’s rough. I’ve heard a lot of people say that the most difficult part of any of the illnesses I have is the brain fog or the memory loss. Not being able to think clearly is really disabling on top of the physical stuff
I don't know if you have this but I've had seizures my whole life and when I have a seizure start to see sparkles in my right eye and then I go completely blind and then that's when I start shaking and I pass out and I don't remember anything after that
Thanks so much for this. I know you like to remind us you're not a medical professional but I still think this info is really handy and comprehensive. But can I contact you privately about this? It would mean a lot to me.
Mine's right temporal lobe and seem to aways have simple partials about 99% of the time, the odd time it spreads to a grand-mal. Due to a glioma (non cancerous tumour) which got removed in 2009. To be honest I haven't had any simple partials in a long time, but a few days ago had a grand mal in my sleep.
john higgins That’s rough. 90% of the time when I was not on my meds, mine would be a tonic clonic (grand mal). So scary honestly. Most of them were in my sleep, and when I woke up it was so upsetting. After awhile, I just hated going to sleep, especially if I had experienced triggers and guessed I would have one. Very stressful. I’m glad you are not having many partial seizures lately, but it’s always hard for me to have a tonic clonic. My body felt horrible afterwards too. Hope you’re doing ok today. 👍🏼
I have temporal lobe epilepsy, I think I have simple partial. I don’t pass out and I know that I had one but I can’t remember details afterwards. I cracked my head when I was 6, I’m almost 22 now. Would that incident be the cause of my epilepsy or should I get checked for brain tumors?
Please talk to your neurologist. I passed out and fell on my face about 20 years ago and that is how I found out I had seizures. It was a seizure that spread and I lost consciousness and fell from a bench onto the floor.
Have you ever seen a neurologist? If so, it's important to tell them about the head injury, that can be a precursor to having seizures. An accident or a brain tumor are not the only reasons people have Epilepsy. A large number of people have "idiopathic" epilepsy- epilepsy with no known cause. If you are ever around someone when you have one, you could ask what they saw. Often, if the recall is not clear, that could be a complex partial/impaired awareness focal seizure. Just a different type of partial seizure. But, it's really important you have a good neurologist involved. Be well
I had 3 'spells';this morning. Started at 6amish. Strong Deja Vu. Makes me break out in sweat... My mom has full body seizures. I've only been dealing with this for a couple yrs only tho. I also been having memory problems, note I'm only 34 so no age related issues. I'm afraid
I tried to explain this to my doctor, saying how I've found people suggesting it may be an epileptic seizures but he just told me it was nothing and only to write down if it happens. I don't know what I'm supposed to do
xxna5eemxx I hope you can find a way to either video or document exactly what you feel when it happens. That will be helpful. Do you see a neurologist?
17 years ago, I described it to my doctor and was told it was an intense headache. They refused to stated it was anything more. As it’s gotten worse, it’s expanded to Complex Partial and onto Secondary Generalized Tonic Clonic. Keppra has helped me. Do write down what you remember and, if possible, have someone watch you for any loss of consciousness or motor movements. I had no idea I was losing consciousness and luckily it only occurred in very calm environments (ie bed.). Good luck bro.
PLEASE HELP!! To understand it!! It starts to happen to me a year 1/2 ago. to make it short. I can be any any place (my car, my couch,in the store) and if im doing something and wherever my eyes (my sight) is seen,it transporting me to a dream scene(usually a night before dream or a old dream) and in that second i feel like a panick attack.
would i just ask a neurologist to give me a brain scan for this? i dont understand. i feel like i may have this and ocd, but i also fear it may be a schizo disorder, and/or this simultaneously. ive currently been diagnosed with mdd with psychotic features. im unsure what to do at this point. ive been to a few psychologists and they diagnose me with things that dont seem right, but its just like, how am i to know for sure. im not a specialist at this. im so overwhelmed. i just hope i figure this out soon, i hate this deja vu and random “memories” popping up in my head that are actually false memories.
i think ive had 2 of these actual seizures and it made it feel as if the world had shifted around me i guess and i just stayed in the same spot. maybe this will make sense? is this what one of the seizures felt like? it kinda felt as if i was fainting without actually fainting and being aware of it, just unable to describe it. on a day to day basis i experience dreams/nightmares almost every time i sleep. i experience deja vu often. i have delusional thoughts. i also have a lot of forced thinking and intrusive/negative thoughts and strange, indescribable thoughts & feelings (i guess, not even sure what to call it) simultaneously.
That sounds really difficult. One of the hard things is that it’s so difficult to describe seizures. Honestly if someone’s never had one, they will never really understand what you’re talking about. Because it’s just different.
Getting diagnosed correctly is often very difficult. Especially if you have psychiatric and neurological conditions. But they are often together, because it’s all your brain. It sounds like you’re overwhelmed and maybe it would be helpful to get a clear diagnosis. Seeing a neurologist is a good place to start. They usually do an EEG and an MRI. But actually even if those do not show anything you can still be having seizures. If you do have schizophrenia or schizoaffective disorder, Or any other psychiatric condition along with epilepsy, it may be impossible to completely tease them apart. I personally don’t think it’s totally necessary, as long as you can determine the diagnosis so that you can do the correct treatment. You may end up just trying different meds and see what works. Because really what you want is to stop the experience. Many doctors and neurologists especially, dismiss symptoms that they think sound psychiatric at all. But certain types of epilepsy, Can I have very emotional/mental components. Let me know if you have any other questions, and I wish you the best.
ariel on health thank you a lot. im going to try and see a neurologist as soon as possible. i hope maybe this isnt whats wrong with me, but at the same time itd clear up so much.
Thank God i saw this, it was hard to describe to my mama. But when it happen, its usually caused by 1 of my senses, i feel it bein warned before it come. Then when it do come out the blue, i thought it was demonic lol cause the dejavu be scary. But once it happen, i cant read or talk for about 20secs. And i get hella sleepy. And a headache. Shit is scary man
Seizures are really scary. I get very tired after also. I felt scared it was some kind of weird spiritual thing because my family said that and there wasn't any other explanation. I usually only get headaches after a tonic clonic (grand mal) seizure.
Divine Feminine Tarot Yeah, I agree. I really don’t like seizures. The level of intensity makes it feel so real for me. I am glad to say that mine are almost completely controlled now with meds. It took a lot of trial and error, but I’m so glad.
Yay that’s super awesome. We aren’t sure but I’m wondering if mind are caused by a Chiari Malformation or a CSF Leak. What meds do the have you on? I was going to try CBD oil since meds are super strong for me most of the time
I've tried 12 meds actually. I have to say it's really just a bunch of guessing. I am now on 2. But everyone reacts differently. I tried High CBD Cannabis oil and it didn't do anything for me. I have a friend with Chiari with EDS. I hope you get things figured out.
I am 41 and have been dealing with this for the last 11 years. Shortly after turning 30 I started having seizures and was diagnosed with left temporal. How old were you when they started
Takeoffyour Pants and jacket I was 12 when mine started. It’s amazing how they can happen anytime. Minor personally related to hormones in so that’s probably why it started when I was 12
O S Yes, temporal lobe epilepsy can occur with a normal EEG. I think it’s kind of crazy that doctors don’t tell anyone and information is not out there saying that if you’re not having a seizure while you’re on the EEG machine you may have a clean EEG, and you can still have epilepsy. Some people have seizure activity when they are not having a seizure and others don’t. I think it’s because it’s easier to diagnose someone if you have an EEG showing seizure activity.
I do not have an increase in my seizures with SSRIs which is what I use. I also take Wellbutrin which people are concerned it can lower your seizure threshold and I have had no problems with it. Being less depressed has been wonderful. My seizures and predisposition to depression made things really horrible.
I studying the temperol epilopsy because I had those since I was a baby they stopped for a view years then came back in a view weeks I'm going in for a MRI to see how big the black dots are if there big enough I might be having surgery to get rid of them
That must be tough that they started again. I'm glad you are getting help and checking with the MRI. Surgery sounds scary to me, but if it will help, I hope you are able to do it.
I hit my head 2.5 months ago- no symptoms of concussion (no headache, nausea, etc). I started getting depersonalization and anxiety, and it’s been persistent, but i never get that deja vu or rising feeling. Would this be just an anxiety thing or possibly TLE? Given that depersonalization is caused by anxiety, and I’ve been very anxious over my health ever since. The depersonalization doesn’t hit in episodes, it’s just there constantly and gets worse when i get anxious.
I don't know, it could probably be both. Hitting your head can definitely create neurological problems. The anxiety that goes with all that can be almost as confusing. It might not be TLE, but it could be good to see a neurologist. Neurology and psychology are both so intertwined, and I think the world is learning that more and more. It's all your brain after all!
That can be a TBI without epilepsy! (although you could definitely have epilepsy) make sure you are incorporating a Neuro protective approach to recovery
Yesterday I had about 6 episodes of intense deja Vu, plus hot flashes, my hands shaking, and a rush of anxiety. It's really freaked me out. Before I had had that happen maybe once every few months. Is it strange for this to start late in life? I'm 34.
Hi Cassandra, I just found your message. No, it is not strange for Epilepsy to start later in life because it really can start anytime. Mine started age 12. Mine is affected by my hormones-a category called Catamenial Epilepsy. The 2 weeks before my period I am more likely to have seizures. Just thought of that because you said hot flashes. That can be many things, but it is sometimes a hormonal imbalance (not necessarily menopause). Hope you are able to get some help.
Hi love, ive just read your reply and you seem to be going through the exact same thing, I don't know what to do.. have you got anywhere in relation to dealing with them? Treatment/medication? Gem (I'm 35 been having them about 2years)
whats bad with me is I always suffered with anxiety since pre teen years and would go numb on one side and that what happened before I had my gran mal seizure last year. since my seizure I have Myoclonic jerks still but take meds to help control it. my type is focal or generalized.
Spike 1984 I find that anxiety can be very connected to seizures. I feel anxious from the fear of having them, sometimes the seizures cause anxiety, and then afterward I get confused and that makes me anxious.
Do patients with TLE make kind of a very scary scream-more like a camel voice- at the beginning of the seizure? + thank you for the wonderful explanation ♥️♥️
Rasha Rahim many times people have a sound they make at the beginning of a tonic clonic seizure meaning a grand mal seizure. That is where the air is getting thrust out of them. That’s the time I’ve heard of any sound that is involuntary. I hope that things get better for you and I’m glad I could help
Im having this for 9 years now . Ive had 1 or 2 years without or very little of attacks . But now I have it 2 a month . Its always 3 days when 1st day is the worst and 3rd day is very light . Is anyone experiencing agression before 1st day of attacks? And is anyone experiencing Vertigo 1 day before TLS starts ?
Marta hi, personally I haven’t had problems with aggression. I get vertigo from my other illnesses so I’m not sure about that. But my seizures are linked to my menstrual cycle and so they happen in a cycle and I was just wondering if yours seem like they’re in a cycle because you said two a month and for 3 days. Do you keep track of your cycle? Once I figured that out, I was able to be ready for the seizures which was at least a start. If you want to stop the seizures it’s definitely important to see A neurologist if you haven’t already. If you don’t have a diagnosis it can be a bit of work to go through the process of getting one but for me stopping my seizures greatly greatly improved my quality of life. I also take supplemental bio identical hormones that have decreased the seizures that happen right before my menstrual cycle along with my medication. I used to have one tonic clonic seizure approximately a month and then a bunch of partial (focal aware) seizures and they would increase the two weeks before my period. Even after I got the tonic clonic seizures under control, I still had many partial seizures before my period. So I found a second med that helps with those and with the hormones I have almost no seizures now. Best to you.
My grand mail started 8 years ago. !!??We're do u go for nolage because our NHS consultants are thick or don't last long and this one is nice but her education on epilepsy is less than wot I now it seems I'm past from one consultant two the others funking he'll I could have been locked up with on consultant absolute plank .lol o well done next I try two keep the consultants at bay .Bay now so I can use the benefits to my advantage.
Sorry for the spelling. I didn't want to interrupt the video by turning on the microphone to spell. I had to get CPR done on me because I had a epileptic seizure. My life flashed before my eyes and I really only came to terms this morning that I had a near death experience and now I feel depressed ATM to the point where I physically can't go out past my front door now.
+ariel on health first off, thank you for sharing your video's! It's really helpful to find online communities like this who share experiences. I have focal epilepsy with secondary tonic seizures. I also get simple partial seizures. I've been getting tonic clonic seizures since February of this year. So far no medication has helped to fully control my tonic clonic seizures. I'm starting my fourth medication now. I've felt like a guinea pig these last few months. It got to point where I told my neurologist that I couldn't take it anymore, physically and emotionally (as you mentioned epilepsy often goes hand in hand with depression). She said that I would possibly be a good candidate for surgery. They would have to run more tests to make sure. The laser ablation surgery seems less invasive than the classic lobectomy. Have you heard of anyone getting laser ablation surgery and possibly their experiences? Thank you, wishing you all the best!!
+Fanny Durocher I don't know of anyone who got the laser surgery. I'm glad the videos help! I totally understand feeling like a guinea pig, I have tried 12 epilepsy meds. It took a long time to find a second med to stop the partial seizures after the TC were finally controlled after 10 years of both. I have had some that didn't work, some that gave me such horrible side effects, I couldn't stand them, and only 3 that work and I tolerate. if you have to go slowly changing, it makes sense. it's like an emotional and physical rollercoaster. best of luck!
ariel on health Thanks for the clear way you talk about TLE. I'm really struggling with the emotional overload of my seizures and newly diagnosed. So good to hear you explain this stuff in a way neuro's dont.
Lissy Moz I’m sure it is overwhelming. Whatever you are going through, whether it is a seizure or not, it is important and you deserve help. I always say “your experience is real”, and it’s important to remember that dealing with other people and doctors. Just know that getting an answer may be helpful because then treatment is an option. I now have almost no seizures. Remember, you are not alone. 😊
I was like you and I was completely healed because of my return to God and Islam. Praise be to God that this universe has a creator who said in the Holy Quran: Why would God make you torment [of your past sins] if you were grateful and gained faith - bearing in mind that God always responds with gratitude and gratitude, I was very addicted to porn, and repented to God so that I could get rid of it , and whenever I went back to porn I would have an epileptic seizure as a punishment, but when I became straight for God’s sake, it didn’t come. I have been suffering from temporal epilepsy from my childhood, and I did not know until this year, and thank God I recovered from it. Now its five months i didn't have a seizure, I invite you to discover your Lord and your Islam to get rid of this torment, for it is the true religion
I don't think I have had that experience exactly, but since there is no impairment in consciousness with the focal aware/simple partial seizures, my eyes are open. Seizures involving the senses, such as seeing, hearing, smelling are definitely a type that some people have. It is where exactly the seizure is starting in your brain that causes the type. That sounds really intense though, not nice at all.
I was diagnosed 6 years ago it took so long to find out it was temporal lobe epilepsy I thought I was going mad, it’s good to hear other people’s stories, you have really made me feel less alone and weird thanks
Hi, I am so glad! That is exactly why I made this channel. I felt very alone and didn't know my diagnosis for 14 years so I felt very confused. Hope you are well.
Very interesting. I had tls for many years which tended to follow the pattern of de ja vue, rush of fear, auditory hallucinations, loss of awareness.
Sounds like seizures
I have deja vu every day. I think I might have simple partial seizures
You still experiencing it?
Thanks for sharing this Ariel I was recently diagnosed with seizures as well after 13 years of being diagnosed and told I was having panic attacks. I'd get that Deja Vu feeling like a snap of the fingers everything was more clear and vibrant for a second and then it would be that feeling of tipping too far back in chair and catching yourself at the last second flooded with adrenaline and roaring emotions ripping through my body. I've been put on Keppra and having a hard time dealing with the side effects but it's better than what I was going through before.
Wow, I've had such a similar experience. I can't stand the side effects of my meds, sometimes you have to keep experimenting with meds. For me as well, the meds and such are not anywhere near as difficult as the seizures.
Be well!
BeaverBedlamTTV I’m on Keppra too, for the last 9 years. I got through the side effects eventually. I’m on 2000mg twice a day.
i was told the exact same thing for 15 years. when you can clearly tell a panic attack is nothing nowhere near a seizure! i kept mentioning this same sensation in my feet for such a long time and got told it was anxiety and that i also had panic disorder - which those panic attacks were so similar to my seizures but i had impaired awareness of which my aura for bigger seizures sometimes started this so called panic attack.however while some of that may be true... or maybe it isn't and was misdiagnosed when it may be epilepsy. they put my seizures on back burner because my EEG and MRI and all tests i could ever had came back clear. wasn't until just recently that i had a "big" seizure after 6 years of not having one... (but have had mini seizures between then) i didn't even know the seizure was recorded! and i took a chance to be referred and chose my local hospital where the neurologists are at, he saw the video and he said he had great difficulty differentiating epilepsy and panic attacks?.... but he swerved more towards epilepsy and described me as having tonic and clonic movements as well as a focal onset seizure secondary generalisation! i'm currently started on lamotrigine 100mg....i've been on that for 3 weeks i think now but sadly haven't noticed any change to my sensations in my feet which mostly can be very different to my aura but does bring the same fear but not as severe as when a tonic clonic comes along. so we're still trying medication to see if it will help these daily sensations which they don't know if its focal or anxiety. but i was told anxiety and depression and epilepsy have close links with each other. i just hope all works out in the end :( and i don't want it all blamed on anxiety like it usually is. i don't really know what to expect with this medication, does it stop the sensations altogether or does it make them less daily? my epilepsy nurse said i have 3 options.... try see how i go on with this dose a while longer....increase the dose.....or go back to neurologist. weird how i was kept from this diagnosis for so long and i'm now convinced maybe the doctors saying it was panic attacks were right. its like i have this fear of being turned away because nothing good ever lasts with me ... so i'm kind of pushing myself back...does that sound mad? also i still live in fear everyday of having another seizure to the point where it took over my entire life and was just existing rather than living and kept watching the world go by from my window. so that stresses me out too probably triggers seizures but i try my best to change my thinking but sometimes i can't :( sorry for long comment and i'm not really good at explaining things. ha... hope you got your seizures under control. its shocking how so many people suffer for so long when it could of been sorted from the very beginning. xxx
thanks you so much for this. I got diagnosed with this last year, and even after diagnosis I struggle to believe I have it because I don't have the 'tonic clonic ' part. it made me feel like I was deceiving someone, saying I have epilepsy (even though my behaviours are really bad). if searched on CZcams for ages for a video that addresses my type of seizures, but none of them talked about this. hearing someone say it in a video really makes me be more at peace with my diagnosis and not feel so alone. my psych gave me the diagnosis, but he didn't describe like you do to make sure I actually understand , all I really heard was 'epilepsy'. For months I had been passed off as having psychosis, at one point I was put in a high security unit for schizophrenics. it means so much to hear someone tell me im right, not crazy. im on meds and its the best I've felt in 10 years.
Beatrix Passmore I am so glad that I could be of help with this. Honestly the worst thing about my life and not knowing what the partial seizures were for 14 years was just thinking there was something wrong with me. I didn’t know what or how but I couldn’t understand what was going on. I’ve definitely had doctors who didn’t believe me and people who try to make it a psych thing. I’m just so glad that you got it worked out and I’m amazed that it was with a psychiatrist. But I’m so grateful that you’re on meds that are helping. I feel the best I’ve ever felt mentally because I’m having almost no seizures.
I have some really severe chronic illnesses that inhibit my functioning and cause me severe fatigue and I’m in a wheelchair and I can tell you I am happier than when I was having all those seizures, i’m glad that these videos could help you understand it a little more too since it sounds like your doctor didn’t really go into much about it. That feeling of doubt around how real your seizure are, is something I have struggled with a lot. it went on for so many years of being scared to tell anyone that I felt so scared that it wasn’t real. It still haunts me sometimes, and I’ll doubt myself. I would say for me it has taken time to really really encourage myself to believe myself and listen to myself and talk to other people with epilepsy and get really clear that this is a real neurological thing. I also had tonic clonic seizures from age 12-22. I finally got those under control with meds but I was still having the simple partial seizures and like I said I didn’t know how to tell anyone and so I didn’t. Let me know if there’s a specific thing that you’d like a video about that you feel like I haven’t covered that your doctor didn’t cover it would be cool to know what would be helpful. I’m so glad you’re getting help, I wish you the best. I like to say to everyone- remember your experience is real.
Having just been diagnosed with TLE. I get a lovely aura of coffee and then within a minute, I have a full tonic-clonic seizure. It took 4 doctors to actually get someone to listen to me. It's been so frustrating but it's been nice to have a name to it. I've run into a lot of people say that I'm not really an epileptic that I am just trying to get attention. This video helped me a lot in understanding what's going on and what I've been diagnosed with.
You explained the types of seizures better than any doctor I have heard so far. The fact that you experienced them must be why. Thank you.
I am so glad it was helpful. I really think we need patient descriptions at doctors' offices for them to give to people and say, "do you have anything like this?" The doctors have never experienced it so they really shouldn't be explaining it.
Here I talk about that. czcams.com/video/z5F9bBYfqEQ/video.html
I've had Temporal Lobe Epilepsy for years and I learned somethings from you that I never knew. Thanks
I’m so glad to hear that, that’s always my goal. 😁
I applaud you for sharing about your life. I do not suffer from seizures or Epilepsy but I am impressed with the detail of the information you are sharing. Thank you for your transparency and courage.
Tom andWanda Thank you so much for saying that. I really appreciate it. It’s hard to be vulnerable sometimes but I realize now that it gives the most opportunity for other people to get support.
This is my most recent video which took some more courage because it’s very specific and vulnerable. czcams.com/video/BWffTaKeWLY/video.html
I have tle and I keep coming back to this video to refresh my memory, so helpful
Thank you so much it always helps to know that what I do is making a difference and I really want to make more videos.
u explained it so well!!! i suffer from it... it's scary and hell... I'm on medications for 4 mounts ... didn't get a seziure thanks god...
I have it...and with it...memory loss, confusion, deafness..mood changes and traits very similar to autism...
I'm 15yo and I have a weird feeling sometimes, it's like a deja vu, a memory invades my brain and when I try to remember it quickly disappears, it happens out of nowhere, I also have a feeling of being spinning around myself. I don't know what to do because those memories and the feeling is so good and real, but at the same time I don't want to hide it through a spiritual explanation and pretend that nothing happened lol.
keeole I’m really glad the experience is not a bad one because that’s much better than if it was horrible. If it’s not bothering you you could just wait and see if you ever get other symptoms or not. You could go to a neurologist and get some testing. But I always like to remind people that a neurologist will do an EEG and if nothing shows It doesn’t mean you don’t have epilepsy, same with an MRI. Just because you don’t have a visible lesion or some thing in your brain, doesn’t mean you don’t have epilepsy. Many people have what’s called idiopathic epilepsy which is where there’s no known cause. So if it’s not bothering you and you don’t want to stop it with medication it may not be necessary to do anything about it unless you start having other symptoms or other seizures and they are concerning. I agree not to make it a spiritual phenomenon. I say that because my family did that with my epilepsy and it was very traumatic. I have Learned that for me any physical health symptom is real and important to believe that it’s real. I’ve had so many times where doctors were disbelieving and people were dismissing my illnesses because I have many that are not well understood and difficult to diagnose. I find it helpful to just separate that from my spiritual life. And I have a very strong and happy spiritual life. So I hope that helps a bit. Like I said even if it is a seizure you don’t have to do anything about it. But understanding that it’s a real medical phenomenon and taking it seriously if you need to, I think is very important. Let me know how it goes if you want. I wish you the best!
Secondary Generalization - Thank you so much for these words!
Just wanted to mention there are new terms. :) Now it's a called focal to bilateral seizure.
I am so glad I found your channel! I was dx with TLE just 2 months ago...but the more I learn about it...it goes hand in hand with my "psychiatric" labels. Thank you...it has made me rethink everything. I am beginning to think that I have had TLE for years!
forsiamese4me Hi! I’m so glad you are finding them helpful. It took me 14 years to realize the partial seizures were seizures. Most docs diagnose something psychiatric. I also have depression and anxiety, which are very common with Epilepsy, but that is very different than when doctors try to explain everything away with a psych diagnosis. I hope you get some clarity rethinking all this. Also check out my video on PTSD from Epilepsy. It can cause psych problems because of the trauma from them. For me, getting the right Epilepsy meds and stopping the seizures mostly along with treating my depression/anxiety/PTSD, my quality of life is greatly improved. Wish you the best! Let me know if you have questions, because teasing out what is a seizure can be difficult. The more you learn, I think it gets easier to see the difference between seizures and psych stuff. I tell doctors, don’t tell me what is what, I have both, so I know much better than you the difference. 😁
Ive been treated for temporal lobe, treated for years, have had years of seizure free, and no longer on meds, very rarely, ill feel like I've had a "small" something...recently went to spine neurosurgeon for different issue, i was quite stressed and i blanked out, said something odd, and that was it. Absolutely no pre warning, and no memory whatsoever of those few seconds. He did a quick neuro test, and left it at that, as i was there for my neck. This is not the first time ive recently had issues with saying things im unaware of that are irrelevant to my conversations ill be having. But de ja vu does not happen, i used to have VERY powerful one's. So these happen with no warning. Ive also been getting my what i call,"fatigue staring spells". Ill suddenly feel SOOO exhausted, and go into a staring episode in which i lose focus, like im looking out to distance, yet eyes crossing, im fully aware, but unable or unwilling to stop. Thoughts? I don't know if im just stressing out
Very well explained
Thanks
Thanks so much for this video. I also have partial complex seizures in my left temporal lobe and can relate to much of what you said. I get very self conscious when I have a seizure/aura, but after I am fine telling anyone what just happened.
I'm glad you are able to deal with it. I hid my seizures for a long time, and I find it much better to educate people about my epilepsy if anything happens. Or even when I'm not having seizures. :)
hi! i find myself back at this video a lot because i am 99% sure this is what i have. it’s been happening for about 3 years now and occurs randomly about 4x in a month and then goes away for a while. my experience is pretty weird and it starts out with a vivid memory of a dream i have had that i have forgotten about. and sometimes i get a headache but not all the time. after the memory comes up i get a weird smell sometimes but not every “seizure”. but the weird thing is that about 10 or so seconds after the memory starts i completely forget what it was. of course i remember that i had it but i have no idea what that dream or memory was about. i have very bad health anxiety so i cannot stop researching symptoms but i am under the age of 16 so i can’t really go to a doctor with a parent taking me and i have told my mom about it but we just brushed it off.
Sydney Kratz That sounds a lot like it. My parents wouldn’t put me on medication, so I went to the neurologist and started when I was 18. I don’t think you should have to wait, but there is hope.
ariel on health oh my gosh i did not expect you to reply so so quickly but thank you!!
Have you ever looked at the timing of the seizures in relation to your menstrual cycle? I stated having seizures at 12, and figured out after many years that they would increase the 2 weeks before my period. That doesn’t stop them, but it felt good knowing when they were most likely to happen. They could still happen anytime. Keep learning and you will find a way to get to someone who listens. It’s just not always simple. Check out some of my other videos, see if they are insightful. Also, I’m going to add more about stories with my seizures soon.
Sydney Kratz 😁😁 I was lying in bed resting, and I saw it pop up. As my channel gets bigger, I’m not sure if I will always be able to respond to all the comments. But so far I have!
ariel on health yes i have noticed that they have appeared within a weak of my cycle either ending or starting. thank you so much for your help.
Many thanks for such videos.. Really helpful.. God bless you..
Thank you so much :)
Stress was a trigger for me. I also get deja vu . I get a smell of burnt toast. My stomach rises and drops kind of feeling. The feeling starts at my feet and works up. Have about 6 seconds to get safe for the episode.
i’m just looking at this because i’ve been having these episodes randomly. it’s either a couple times a month or once every couple month. they last like a minute a piece and it’s this strong feeling of déjà vu. and i’m aware of what’s going on but it feels like i’m in a dream or something and i get super dizzy. afterwards i get in a extremely bad mood or super tired. i want to go to a specialist for it but i feel like my parents think i want something to be wrong with me. it’s been going on for a few years now
That’s really hard to know how to deal with this. I didn’t tell people for 14 years. I don’t recommend that. If you’re able to give any information that helps them to see that this is actually a legitimate possibility that it’s epilepsy, then they will probably take you more seriously. I know how many doctors neurologist and even Epileptologists don’t believe us often. I’m just saying that because I want you to know that just because one doctor or even your parents or anyone tells you that you’re making it up or whatever stupid thing they say, it’s worth still searching and advocating for yourself. When I was 18 I went to a doctor and got on epilepsy meds because my parents had not wanted me to be on them. I know how scary to see and how hard it is and I know how it just sounds like a psychiatric thing when you try to describe it to people. But check out this video and keep going. If it is epilepsy the only thing that stops it is seizure meds and I can tell you that my quality-of-life is completely different now. I am much much happier. There’s multiple resources including the epilepsy foundation website and I have a couple videos under a playlist called epilepsy resources. The book that I found very helpful was epilepsy patient and family guide.
czcams.com/video/z5F9bBYfqEQ/video.html
Also remember that last thing you or anyone who is chronically ill wants to do is get attention or make things up so it’s really important to just tell people who say that stuff that they’re totally out of line and this is real. I’m going to make a video soon on medical neglect is the type of abuse and I think it’s really valid so keep going
ariel on health Thank you so much for understanding. I’ve never understood what was going on with me until I came across this video
Can you tell me more about what kind of memory issues you have? I have very selective memory issues that I've traditionally put down to "just the way my brain works" (names, faces, etc...) It's not a severe memory difficulty (I remember much of the time), but I will persistently have difficulty remembering more than a handful of names and faces over a select period of time...even if they're people I've known for years. I know who they are, but it's the details that I struggle with.
I say this having recently realized that I may have been experiencing simple partial seizures over the past ten years (thought they were intermittent anxiety attacks) that match these descriptions of temporal simple partials almost perfectly, and will be seeing a doctor later this week to investigate.
Great video. Very informative.
Here is a video that is unlisted that goes into my specific memory issues.
czcams.com/video/tNn-YEFpBc4/video.html
@@arielonhealth are eyes always open during fits?
I've learned a lot from this. Thanks.
I was misdiagnosed with anxiety attacks for around 4 years. I discovered I was having focal seizures whilst on a health and social care course at college. The seizures started for sure in early 2011 and I wasn't diagnosed until December 2015, but I have memories of the same terrified feeling from my childhood. I have focal onset impaired awareness seizures, but I didn't know I was unaware until I tried to record myself and I couldn't make sense of my phone. When I told my Neuro that, she said that meant I go unaware. I see something else and I hear the same verse being spoken
Laura Evans I’m so glad you finally got the right diagnosis. I have tonic clonic seizures also, but no one suggested that seizures could be so different like the focal aware/unaware. It took 14 years for me to start to get those under control. Sometimes we have to figure this stuff out ourselves. I read a book on Epilepsy and finally read patient descriptions of these seizures, and was like “wow, I finally understand “. So grateful you were able to also. Good luck!
Turquoise Laura Sometimes it seems like a phrase triggers a seizure for me. It is very confusing.
TLE seizures are horrible because you're so sure you've thought about something that hasn't happened yet, but something triggers you to that deja vu feeling. Next thing you know, you're on the floor. I have the unfortunate side-effect of my heart stopping during seizures (I don't jerk around or do the typical epileptic fit, I just lose all muscle motion and hit the floor) My memory has been messed up between the time I started having seizures (Age 25) to when I started getting medication (Age 29) It's really frustrating sometimes when people go "oh, you remember when xxxx did that xxxxx" and you just can't :( I'm 33 now and have been controlled with Lamictal (Lamotrigine) for a while.
Wow that sounds really scary. Gosh I’m sorry that you’re heart would stop. I have a lot of memory difficulties because of having 14 years of uncontrolled seizures. I totally understand the upset of just having no idea what people are talking about. When I was in high school was when my memory problems started because my seizure started at 12 and I just would feel so stupid for not being able to remember because I have no idea why. Which is very sad. It’s sad that people with chronic illness in general blame themselves. I’m so glad that your seizures are well-controlled now. I know for me it’s upsetting that there was that time that I didn’t have medication and it’s upsetting that that caused permanent damage. I have a video on memory and epilepsy that you might find interesting. It’s helped me to just be totally frank with people, and if I don’t remember something just say hey I have memory problems for my epilepsy I don’t know what you’re talking about. And it helps me because rather than blaming myself for feeling stupid I just tell people that I don’t know because it’s not my fault there’s nothing wrong. I wish you the best and I hope things just keep getting better. I found that learning to cope and to forgive myself for not remembering things makes it not such an upsetting situation.
czcams.com/video/tYF0ip-wTio/video.html
Great video Ariel, thank you for posting :)
Glad it was helpful!
thanks so much for this video
I'm so glad it is helpful for you :)
Very helpful in helping me understand this horrible Sh*te, especially the part about emotions being triggered by Petty mals. I'm officially brain damaged with scaring on my hippocampus. :( Thanks for this.
Happy Camper I’m so glad they are helpful. It’s amazing how much seizures can affect us in so many ways. They have a huge impact on our bodies and our lives. Be well.
@@arielonhealth indeed it is. Thanks again dove. Take care.
@Mike S thank you. I will look into that 🙏
Explaining your symptoms to your neurologist/epileptologist is the most crucial part of your diagnosis because your tests could come back normal. I always got a strange aura before mine but had no memory after. I was misdiagnosed bipolar because I had hallucinations. I had deja vu when traveling to new places and even had strange smells. Don't leave out any symptom no matter how irrelevant it may seem. It took ten years to reach that diagnosis and it had already spread to other parts of my brain by that time. I had migraines and fear. I didn't respond to my first medication so it can take time to find an effective one. You may experience some side effects from them as well. I had past experiences come up that I had completely forgotten. I also became engrossed in information (even learned another language). It's such a strange form of epilepsy.
I had that situation where my tests were normal and it had to be a clinical diagnosis. I didn't tell my doc for a long time because I was afraid they would say it was psychiatric. Glad things are going better.
Thank you so much for all that information. ❤
I had 2 sezures this week. I remember everything? Except not? I'm aware of my condition but... it begins with deja vu? Anyone know what that's about? It's like my episodes have something to do with the future? Or the past? Memory? Are you confused yet? Because eye am... eye....
Anyway...
It is comforting to hear from others like me... I've always felt so alone
Also, I have refused medical treatment, and so am severely satisfied by others like myself who have actually submitted to medicine
I’m so glad that you can not feel so alone that’s really what I try to create with this channel.
Hellow i like the Way you've Explained it About Epilepsy I was Diagnosed with it and had it on Both Sides I used to Have Grand Mal Seizures, but has made a big Difference since I've had Surgery has he
lped a lot Living with it isn't Easy . But ya
Try not to let it Worry You..👌Brendon..
Do these seizures for you seem to change your brain for a short while after a seizure? Mostly grand-mals? I get very philosophical after them lol. Your symptoms are like mine, the deja vu, and I get a rush of joy at times and a rush of fear at times. Our neurons go out of the norm so no wonder these things are altered. I have felt very ecstatic afterwards as well.
john higgins I don’t know about the philosophical. I used to wake up with a terrible headache, exhausted, and I usually hurt myself. So I would fall right back asleep for awhile and then have a headache for at least a day. I felt so out of it. There is definitely a post-ictal state (after seizure) that can be very different than normal. After a partial, I feel totally confused and literally cannot think. I have gotten lost after one. Now they are more mild so it’s not as bad. Mine are always fear or doom. I’m glad sometimes yours are a happier experience.
I always know when a TC is gonna hit. You know that feeling when you reach a floor in an elevator? I feel that exactly 6 times and yay.
I go wandering during focal unaware seizure. I think those, for me, are the most dangerous. TCs I know and can prepare for.
The most annoying bit is when folks who know you are not aware and they still tell you later that you act like you’re on drugs or some crap when you’re having a seizure and it’s like well that’s what happens when your brain starts randomly firing signals. That more than anything annoys me about the rest, I can deal with my vision hearing no issue I work around it. I just don’t understand why people still have surprised when it happens because it’s a seizure SMH
Wanted to share some of my stories throughout my life. I just turned 40 and as a small child I can remember staring a lot, doing something odd with my face and my dad would tell me to stop because my face would stick that way. He was just joking... My dad had grand mal seizures that started a couple years after he had a major stroke at 35 yrs old. As a young child (3-5 yrs old) I suffered a couple of head traumas one requiring 7 stiches in my head. Skipping to adulthood I continued to have staring spells but they seemed to last much longer. I can remember going out to eat with my husband and children several times and while sitting at the table I would go into one of these staring spells (trance) where I could hear every single they said/asked and my children would wave like crazy in my face but I couldn't blink, move my eyes, body, or speak. After a while I had to tell them when I do that not to wave in my face or draw attention because it was embarrassing to me because I couldn't respond and it looked like I just allowed my children to do what they wanted. At this point I didn't know that I was having seizures nor did my husband and I think he thought it was just a joke between the kids and I since I was a stay at home mom/wife. Mid. to late 20's I talked to the NP I saw as my PCP because I started having crazy things happen in my sleep like out of body experiences, horrible nightmares that included out of body experiences that would wake me up and I would feel terrified. She left that office and the NP that took me over as a patient flat out told me I was crazy and need to see a Psychiatrist then refused to even fill my normal meds. like acid reflux medications. Because of her I refused to go to a doctor for years and decided that I was just crazy like she suggested I was. Now I really wasn't having out of body experiences but I was having Nocturnal Seizures. It got to the point that they weren't only happening at night but a feeling would come over me and no matter where I was I knew I had to lay down or pull over. I would be out of it and NOTHING could wake me up but I could hear any and every single thing that was going on or being said like if someone left a message on my answering machine.. LOL you know back in the day when you had a home phone and you could even hear your out going message saying you have reached so and so please leave a message? The first few times the major ones happened was during the day while I was home alone or while my youngest child was napping. I remember feeling so scared because I actually thought I had died and that my body was trying to call out to my soul to come back but it was literally all in my mind/head. My body was paralyzed and my voice was paralyzed but I remember my mind crying for my soul to come back and it would after seeming like it was crawling off the bed very slowly several times like it was playing games with my mind, looking out the window, looking out the front door but not looking over my body that I can remember. I could literally feel my soul sit up before leaving my body (clearly my soul wasn't leaving my body) like it was trying to torture me with fear and it worked the first few times. Now to my mid/late 30's upon waking up I started having (still considered Nocturnal seizures because of timing) more of the grand mal seizures my dad had. Now I have hit 40 and things are still changing. I woke up a few mornings ago with a spot over one eyebrow bone really sore, slightly swollen with a lump in it but no bruise. I asked my daughter after I picked her up from school if I had fell or hit my head the night before and she said not that I know of but... she said after she got out of the shower I went into the bathroom and she heard a bang and everything got quiet. She didn't think anything about it and got in the bed but then started hearing the microwave being slammed shut over and over. She stated that when she came out of her room and into the kitchen I was opening and slamming the microwave door close. She said she talked to me and I responded but kept opening and closing the microwave door then went to bed. I remember her coming out of the bathroom after her shower but I don't remember going into the bathroom or a bang, I don't remember opening and slamming the microwave door close over and over (wasn't) fixing anything, and I don't remember going to bed. As of now all of my prior tests have came back normal but I haven't had any done in several years. Oh and I meant to add that my husband has said I have woke him up leaning over him trying to do chest compressions etc. which I don't remember at all and that's not good because he is a heavy sleeper and because he has Chiari malformation (hernia between the cerebellum, brainstem, upper cervical cord, and bony cranial base) and gets disoriented during sleep etc. which requires me to calm him down from time to time so it's not a good combination at all. Thank you for sharing and regardless if I sound crazy or not if it helps just one person I am glad I opened up because I haven't even shared details with my family or friends of the things that I just shared. I am learning to let go in hopes of finding help and to help others.
Thanks for sharing, I hope you are getting more help because living with all that going on is so stressful. i am so grateful my seizures are mostly controlled. I have had docs who told me nothing was wrong, I had to change docs and find people who would help me. No matter what a disorder is, seizures or not, your experience is real and valid and you need help.
does anybody experience a blood pressure rises with sharp fear sensation during TLE auras ?
Is it typical for TLE ?
I don't, but fear itself can cause an increase in blood pressure and so it may be a secondary effect.
Does having these seizures go be you a sense of deja vu
I'm 22 and had my first seizure this year , done EEG brain test and found out I have partial epilepsy in my left part of brain and its exactly like you have described, currently I'm taking convulex and so far haven't got anymore seizures
So glad no more seizures!
I'm currently being tested for this, it was first diagnosed as anxiety. A year later, and I'm still getting dejavu everyday and I'm getting it in my dreams, and because it's gotten that bad, my psychiatrist wanted me tested for FLE
I'm glad your psychiatrist is checking it out. I appreciate when doctors really try to figure things out if it doesn't seem right and not just blame it all on psychological factors. I have terrible anxiety. Especially now with PTSD from the seizures. But, it's definitely different for me than seizures-now that I know what they are. I hope it's going well. Have you gotten tested yet?
thank you for this video. if i may ask, can partial simple seizure escalate into temporary super Enhanced synesthesia? where feelings soar 50 folds gaining color sounds and visual imagery. where objects\sounds\colors have feelings. where visual sensory input is transformed \ perceived through 3-4 senses simultaneously. where gaining impossible awareness.
Hey. Just watched this. Well explained!
Thanks, second time around I made it shorter. Glad it was helpful. :)
i've been dealing with de-realization or dissociation for a while now, or that's what my doctors and psychiatrist tell me what it is. Now i am prescribed prozac 20mg, but i have been on it for about 2 years now and it has helped balance my moods a lot. I used to be on Zoloft which completely set me off in a dream state but this was a different feeling then i've had the past year. the past year i go into these moments where i forget where i am, what's going on, everything feels far aware and sounds far away, de ja vu- starts to happen, i can't remember what's going on but i feel as if i know, it's a whole different feeling of dream state, and it lasts like a minute or two and , it's like i have to wake myself up. when i go into these episodes i often stare and start fidgeting with my fingers i'm aware i'm in some sort of different awareness, and i can feel it coming because i start getting an anxiety and then i go into some sort of distant numb awareness. i do worry that i'm not actually being taken seriously with what i'm dealing with because it's been getting worse. it just to be once in a while and short and i could just snap out of it, but now it happens a couple times a day now, and the worst one that i've had is i was in the car and we were driving home and i looked out the window and then all of a sudden we were home. i wasn't tired, i wasn't bored i just had simply looked out the window and it's like i blacked out. it caused serious confusion for me and i couldn't remember driving home.
That sounds really hard.
I don’t know if I have this but my “panic attacks” do not act like normal panic attacks. I’ll be sitting somewhere and suddenly have this deja vu, typically a feeling like “omg this has happened before in this place”. Then all of a sudden I feel like I’m on an adrenaline roller coaster. It lasts 20 seconds or so and in that moment I feel like I can’t move. Then it’s over…
My 18 yr old son had a grand mal seizure Friday afternoon on the way home from work, lucky my brother was driving and called 911 right away. He has never had anything like this before and all the test and CT scan were negative. They sedated him with ativan and haldol in the ER because he was confused and agitated so he slept for almost 24hrs afterward but otherwise feels normal. He says he felt dizziness and a feeling of having had been in the situation or had the same thoughts he was having before and when I was reading a google description explaining s/s of seizures, when he heard the word deja vu, he stopped me and said that is what he was feeling a few hours before he had the seizure. So I started to look up deja vu auras and found your video. Im hoping that it was a one time occurrence because of lack of sleep. but I'm very concerned and don't wanna miss anything so I am following up with his pediatrician. He had a negative CT scan but they didn't do an MRI. Should I request on or what other things should I be having them test for? He is otherwise healthy not taking any meds, he does work in constructions doing masonry work so maybe he inhaled some chemical idk. He did say he's had that feeling of dizziness and deja vu before a year or so ago a few times but without anything happening afterword. Thank you so much for sharing your experience.
That sounds really upsetting. I'm sorry you are having to deal with this. Epilepsy can start anytime. There is not always a known cause. All I can tell you is my experience. I had my first tonic clonic (grand mal) seizure when I was 12 while sitting in class. I had a CT, EEG, and MRI. None showed much. It was another year before I had another tonic clonic. During the next 10 years when I was not on medication or medication that worked well, I had over 100 tonic clonic seizures. 90% were in my sleep. I didn't know that what I was experiencing with the partial seizures was a seizure for 14 years. Meaning, no doctor or anyone had said anything remotely similar to what I experienced, even though I had seen a few neurologists. I read about Temporal Lobe Epilepsy in a book, and was like "WHOA!", that's what's happening. So, since then, I have tried 12 meds, and I am now happily almost seizure free. I have had about 5 CT scans, a sleep deprived EEG, multiple regular EEG's, a 6 day video EEG, and 3 brain MRI's. Some people don't show seizure activity in their brain unless they are actively having a seizure, and have no lesion or anything show on an MRI. So, knowing if he has Epilepsy or not, is not just based on tests unfortunately.
What I CAN say, it that all was dangerous and traumatic. I would be most worried about the fact that your son works in construction or is driving, because that would be very dangerous if he were to have another grand mal seizure. Utlimately it comes down to safety. If he has experienced the simple partial/focal aware/auras before, then it is very likely he has had them and they have never "generalized", meaning spread to the whole brain and caused a tonic clonic seizure. I had thousands of partial seizures that did not turn into tonic clonic seizures, but I had over 100 that did. I did many things like swimming in rivers and driving during those years. I did have one where I fell down a flight of stairs and almost hit my head on the fireplace, one where I passed out outside and hit my head on concrete, and others that were incredibly dangerous. It's all very scary and new I'm sure. But, I hope you are able to get some good help. If a regular neurologist is not helpful, you can see an Epilepsy specialist. But, tell your son, his experience is real. Sometimes neurologists are arrogant and wish they knew more than is really known about the brain. I really hope that helps, even though it might be hard to hear. I am sending you good vibes. Sorry it took me so long to get back to you, I have another chronic illness and have been too sick to get online.
I really appreciate your reply. Thank you so much. He's scheduled for the Epilepsy Clinic on the 19th. His primary care doctor say they'll most likely start with the EEG which I feel will be a waste because like you said it'll only show current seizure activity and he hasn't had since the first one. They will most likely clear him to go back to work next week and that's kinda of scary. We're praying that it was just due to severe insomnia. I will keep you updated. Thank you and I'm also sending out good vibes and prayers for healing and good health 💕
Courtney Reid 😊 thank you. I’m glad he’s getting things checked out. Some people do have consistent mild seizure activity in the brain that can be seen on an EEG. Hopefully he will be safe whatever outcome.
Thank you.
My onset symptoms of this I will experience a sudden smell and taste of metal followed by some body shaking
It is very common for people to experience a metallic taste. It's rough having seizures.
I haven't been diagnosed yet. I have an appointment on the 24th of this month, but the appointment is with a sleep doctor. My PCP thinks I have narcolepsy with cataplexy, but my symptoms and my intuition leads me to believe I have TLE. How do I relay this to my doctor in a manner in which she will take my concern seriously?
graysonmassey i’m guessing that your doctor will make you do those tests for narcolepsy first. Basically, it’s hard to diagnose epilepsy so they will want to rule out those other things. I would say wait until that’s over and then they will take it more seriously if you still either feel like there’s something more than just the diagnosis they give you or if they are not able to find a diagnosis to suggest that you really think it might be Epilepsy. You can also always get a second opinion, doctors egos are sometimes a big problem, wish you the best!
Thank you
Hi. I’m curious if seizures can be hereditary? My mom gets seizures but hasn’t had them in a while. I have been having these uncontrollable body movements and I can sometimes feel it occur in my head. Like a weird zap feeling or a tight sensation inside. A pressure feeling. It affects my eyes, speech and breathing.
It’s amazing how many different things can be a seizure. Epilepsy does run in families sometimes.Regardless of what it is that sounds very stressful and uncomfortable and scary. I hope you’re able to get some help with that.
@@arielonhealth I had to go to the emergency room yesterday, my mom had to take me. It was bad but as the day went on it got worse. I guess when I was first go to the hospital before, I was diagnosed with pseudo seizure, but my psychologist didn’t prescribe me anything. So the doctor had to write me a recommendation. I feel bad for people who have something similar but aren’t prescribed anything.
I hope the treatment goes well and that things are OK. Wish you the best
@@arielonhealth thanks a bunch. We are thinking of seeking more opinions and help in the matter. Sometimes the most I can do is just a walk down our drive way and maybe a chore but that’s pushing it. The next day it seems that my symptoms usually regress and I’d have to recover.
I've had about 8 episodes over the last year 2 I have completely passed out one driving and one at work. I was admitted the first time and the stupid doctor said I "just fell asleep" um if you knew me you'd know how funny that is even if I am dead tired it takes me two hours to sleep. so they released me. it went away for a while so I thought it was related to my sugar or anemia because when I get these memories or focal thoughts and I zone out and have trouble breathing and if I pass out my glucose has been in the 70s but when I don't pass out my sugar has not changed. I don't always pass out but the feeling the aura happens. also my breath slows and I can feel my body holding my breath and I have to force myself to breath, if I don't breath I will pass out. I'm scared and I don't know what's happening
Underwoodish Hi, that sounds scary. It's dangerous to have undiagnosed seizures, especially if you drive. Have you gone to a neurologist? I do think that an epilleptologist is the most helpful. Look into it if you can. Let me know how it goes.
As I wrote under one of Yours other vids, I understood as kid, 'my way of thinking is weird' - as I had anxiety inside me, or 'depression like' symptomes(like weakness and being unmotivated) WITHOUT any trait of TRUE depression. Like I WANT to do 1000 things at time... But staying AWAKE IS TOO F-KING HARD.
I HAD/HAVE self value(between normal or skyrocketting, had quite high one) but with time couldn't remember own thoughts sometimes during putting them in WORDS, which f-ed up my socializing.
I loved doing MANY things... But staying focused when almost falling asleep is... HARD.
I saw 'weird pictures' or had growing REALLY ANTISOCIAL MOODS and 'distouched' way of thinking (like said, characteropath of F07.0 type - all is an option, even if it is not 'socially accepted' one) ... but I don't care for others a bit(to do anything bad).
I FEEL MAD AS FXCK sometimes... But am always fully clear on my thinking... Or was, till starting falling unconcious for hours. 😑
I just recently started having 'motoric simple partial seizures', when till now I mostly had, for years it seams, sensoric, visual, psychogenic ones.
As my memories always was slidding and my awareness is more and more foggy(then almost razor sharp, then EXTREAMLY, ON A BORDER OF TOO WEAK TO MOVE), I just acknowledged REALLY bad thing. Like if I am starting having MOTORIC(like inability to talk as losing voice, mouth-brain connection and mouth muscles jearking on one or other side) troubles... It looks like my 'condition' is spreading...
Somehow I understood it just AFTER watching Your vid. Hope it is coincidence, but mouth-brain connection 'error' is almost as annoying as memory 'lenght' of 5 minutes at max. 😏
That sounds really, really intense. Hopefully, you can get a chance to rest sometimes where you aren't experiencing motor seizures.
@@arielonhealth I can only feel blessed not having generalized (tonic, clonic, tonic-clonic) seizures. And since I last time had strong complex (hours going) seizure (evolved from simple partial), I feel much better, even my EEG next day was (first time in 13th years) good one. And even if 2 days ago I was close, I didn't blacked out since nearly month(and due to You-know days, it is normal to be bit more weak).
I think, we must NOT think ONLY about 'when I can again size out', as we will lose our lives... And I should be just grateful and not moaning, I am sorry for that. I have time to prevent it spreading to t-c(in worst case). Most important... How are YOU feeling those days? 🤔
@@mbuszka5295 Thanks for asking, I am almost seizure free which is awesome, but I have another disease where I am homebound and in a wheelchair, and recently got worse, so it's really hard. Being sick in bed is no fun. But my channel brings me a lot of joy to be able to share with people what I learn. I believe it's good to have gratitude, but acknowledge the difficult reality at times. I am so grateful I am not having uncontrolled seizures, life being home bound and sick is actually better than seizures to me. Be Well!
@@arielonhealth I will hold my thumbs for You, too. And happy new year. 😁
I have not been diagnosed with TLE yet. Like you I neer told anyone about it be ause it sounded crazy, but now it is happening more and I am having more syptoms. With mine it comes with no warning. It comes for a dew seconds in the left side of my head. My head will turn for a few seconds and then I come out of it. It's painless... until recently it has been giving me headaches. My left eye has been twitching for a few days often and that's never happened before either. Not often anyway. I now have an idea of what this is though finally and know how to explain it to a doctor without sounding like a basket case. It's been going on maybe 4/5 years. I honestly never kept track. What I have mentioned does it resonate with TLE? After watching this video I felt like it did. What are your thoughts?
Sounds rough, especially when no one knows about it. I can't tell if it's TLE or not because so much of this is unique. You could also have another type of Epilepsy. If you have to go to your primary care to get a referral to a neurologist you can just try to be as clear about what is happening and specific with your symptoms. If you're confident that what you are experiencing is real and you need to get it figured out and can clearly say it to them, they are most likely to listen and believe you. I would recommend keeping track of it more exactly with dates, times, how often, and write it down. You can take a video of the twitching to show them too. I wish you the best!
Thankyou! It's been hard to catch, but now my eyes are constantly twitching. It was just rarely my left eye now it is both eyes and it's seems to be constant.
I think my boyfriend has this. He’s been having these “panic attacks” for months. But in the past few months 2 of these attacks turned into a shaking seizure. He says he tries to tell someone when it’s happening but the words don’t come out, he speaks gibberish, says he thinks he’s gonna die, heart goes fast and he sweats. Are those symptoms of it? It’s sudden and it only lasts him about 20-30 seconds.
Also, he told me that right before they start the noise around him becomes heightened and loud.
Neurology is not well understood, and still many symptoms or types of seizures may be "uncharted" territory. When they turned into "shaking" seizures, was he conscious? I have had a time where I couldn't speak during a focal aware seizure and that was very scary. A lot of the other symptoms are symptoms of the autonomic nervous system (heart rate, temperature regulation). There are focal aware autonomic seizures as well. You might want to look more at those too. I think there are many things that affect neurology, and whether or not it is a seizure, it is debilitating and upsetting. It's important for him to remember his experience is real no matter what. In terms of treatment, basically seeing a neurologist and possibly getting on Epilepsy meds is pretty much the treatment. But, remember that some neurologists are jerks, invalidating etc. Also, some anxiety meds like benzodiazepines are actually Epilepsy meds. So, if for example, Lorazepam stops the "episodes" it may still be a seizure. I hope you get some help and he feels better. Best of luck!
Thanks so much. From what i understand he passes out and then seizes. He went to the nuerologist and they prescribed him lorazepam because he said they sound more like panic attacks, which has helped him a lot. He still has to go get his eeg and mri done but hopefully they can find out what’s wrong. Thanks for taking time to reply i appreciate it!
I'm glad he is having some relief. But, like I said, Lorazepam is also able to stop seizures. So, it may be seizures and not just anxiety. If they try a different anxiety med and he does well then I'd say go with it. Something that is not a benzodiazepine. Because even though it's an improvement, having the right diagnosis is important. Passing out and shaking is a tonic clonic seizure usually. I am concerned that the doc is not taking this seriously. It's good to get an MRI and EEG, but both can be clear and you can still have Epilepsy and those can still be seizures. If possible, try to get one on camera, that will help to distinguish.
Most importantly, if he is still passing out and seizing, that is extremely dangerous. I just encourage you to tell him that he can keep looking into it until it is figured out. So many docs tell people it's anxiety, it's extremely common to get misdiagnosed with TLE. If he has had 2 tonic clonic seizures, he is likely to have more. Lorazepam can stop any seizure in a high enough dose. But often, a dose for anxiety wouldn't stop a tonic clonic seizure. If you have any questions, please ask. I hate to have docs not take people seriously and leave them in a dangerous position.
So, to clarify-a focal aware seizure (which I call a simple partial seizure in this video because the names got changed in 2017) can become a "focal to bilateral tonic clonic seizure" (secondarily generalized tonic clonic is this video). That is where your focal seizure turns into a tonic clonic seizure. If he is having focal seizures and starting to have them turn into tonic clonic seizures, it may continue. I hope he gets good help.
I’m not sure if it’s a seizure but since I can remember I’ve had moments of deja vu then sudden nausea and the urge to throw up but I never do. Lately I had experienced this and then seized and lost consciousness and memory. Was told by family it happened. Only 14 and very worried
thisisnecessary i’m sure it’s very scary. it does sound like you might’ve had a grand mal or Tonic clonic seizure. Having partial seizures and tonic clonic seizures is very common. Personally when I was 12 I started having tonic clonic seizures and so I was diagnosed with epilepsy because it was clear that I was having seizures because I was unconscious and seizing. I was not able to understand the other thing I was experiencing and I was not able to explain it and when I tried I got bad responses. So for me I didn’t tell people about the partial seizures I was experiencing for 14 years. If you think that you are having seizures, it’s really important that you get diagnosed because tonic clonic seizures can be very dangerous. I had them from age 12 to 22 and they were uncontrolled because my parents didn’t want to put me on medication. I personally think that was a horrible decision and my quality of life would’ve been so much better if I had been on meds. I am now on meds and have almost no seizures at all. I have not had a tonic clonic seizure for 17 years. I know this is scary and no one wants to have Epilepsy, but knowledge is power and getting a diagnosis will help you to get the right treatment and actually epilepsy can be pretty manageable. It’s really important to manage it right away though because otherwise you could end up in situations where you’re getting hurt by going unconscious, confused with partial seizures and get memory loss etc. And I don’t say that to make it scary I just want you to know that if you treat it right away and you don’t have a lot of seizures you don’t actually have a big impact in your brain. I know it’s not fun taking meds and I had to try 12 meds to get the right combination. But it was so worth it. I am now on a combination and my quality of life is good. If you have any questions or want to update me as you go along in this process if you go to a neurologist or anything, please do. One thing to know is that a lot of doctors and even neurologist do not know anything about temporal lobe epilepsy. Which means that the simple partial seizures you describe to them may not sound like seizures to them and that can be difficult. Many many people have been diagnosed with anxiety and psychiatric diagnoses when they have epilepsy. So if you see a neurologist you will need to know a lot about this type of epilepsy to stand strong with declaring your reality in case they dismiss you. Get a new doctor If they don’t listen to you or believe you, it’s not worth it having someone who doesn’t. Some epilepsy specialists know more, but for me it’s been hit or miss with every neurologist and Epileptologist. Some are helpful, some treat you like you’re crazy. Just remember you’re not, and your experience is real. Like I said also really researching this type of epilepsy will really help you get the care you need and the right treatments. If you check out more of my videos hopefully you can learn some more. Also there’s a book called the epilepsy patient and family guide. I found that very helpful because it had patient descriptions around actual seizures. I have quite a bit of information that I have gained through research. I did most of my essays in college on some aspect of epilepsy so I could learn more. If you would like some resources go to the epilepsy foundation and they are really awesome. And if you’re having trouble finding more about temporal lobe epilepsy let me know and I can try to direct you somewhere. I’m sure this is overwhelming, it’s not fun and it’s scary. But if you treat it, you might have a really good life that is not highly impacted by your epilepsy. I hope this helps and I wish you the best
ariel on health thank you
Those of you that get it.
How do you deal with the uneasy feeling in your stomach and how long does it last for you? Is there any remedy that makes it go away?
I found that the uneasy feeling tends to go away slowly after the seizure. But it can be increased if I feel like I’m in an unsafe situation already so for me it’s about trying to be safe so I can think clearly and assure myself that I actually am safe even when I have those feelings.
I think besides the seizures the worst part is the memory loss. I had to start writing daily so I can read back through to see what I did.
Takeoffyour Pants and jacket That’s rough. I’ve heard a lot of people say that the most difficult part of any of the illnesses I have is the brain fog or the memory loss. Not being able to think clearly is really disabling on top of the physical stuff
I don't know if you have this but I've had seizures my whole life and when I have a seizure start to see sparkles in my right eye and then I go completely blind and then that's when I start shaking and I pass out and I don't remember anything after that
Why do you think it took so long to get diagnosed? Especially having tonic clonic seizures. It took me years to get diagnosed with POTS
I was diagnosed with Idiopathic Epilepsy at 12. But being diagnosed with TLE did not happen until 28 or so.
Thanks so much for this. I know you like to remind us you're not a medical professional but I still think this info is really handy and comprehensive. But can I contact you privately about this? It would mean a lot to me.
Ra Belaqua thanks! Due to my other severe illnesses, right now I don’t have energy to be in touch. If there is something simple, feel free to ask.
@@arielonhealth Thanks so much
Mine's right temporal lobe and seem to aways have simple partials about 99% of the time, the odd time it spreads to a grand-mal. Due to a glioma (non cancerous tumour) which got removed in 2009. To be honest I haven't had any simple partials in a long time, but a few days ago had a grand mal in my sleep.
john higgins That’s rough. 90% of the time when I was not on my meds, mine would be a tonic clonic (grand mal). So scary honestly. Most of them were in my sleep, and when I woke up it was so upsetting. After awhile, I just hated going to sleep, especially if I had experienced triggers and guessed I would have one. Very stressful. I’m glad you are not having many partial seizures lately, but it’s always hard for me to have a tonic clonic. My body felt horrible afterwards too. Hope you’re doing ok today. 👍🏼
I have temporal lobe epilepsy, I think I have simple partial. I don’t pass out and I know that I had one but I can’t remember details afterwards. I cracked my head when I was 6, I’m almost 22 now. Would that incident be the cause of my epilepsy or should I get checked for brain tumors?
Please talk to your neurologist. I passed out and fell on my face about 20 years ago and that is how I found out I had seizures. It was a seizure that spread and I lost consciousness and fell from a bench onto the floor.
Have you ever seen a neurologist? If so, it's important to tell them about the head injury, that can be a precursor to having seizures. An accident or a brain tumor are not the only reasons people have Epilepsy. A large number of people have "idiopathic" epilepsy- epilepsy with no known cause. If you are ever around someone when you have one, you could ask what they saw. Often, if the recall is not clear, that could be a complex partial/impaired awareness focal seizure. Just a different type of partial seizure. But, it's really important you have a good neurologist involved. Be well
I had 3 'spells';this morning. Started at 6amish. Strong Deja Vu. Makes me break out in sweat... My mom has full body seizures. I've only been dealing with this for a couple yrs only tho. I also been having memory problems, note I'm only 34 so no age related issues. I'm afraid
That sounds hard, dealing with seizures is never easy. I have a video on memory loss from Epilepsy you might find helpful.
@@arielonhealth sure.
Do you have your drivers license taken off you if you have temporal lobe epilepsy?
It depends on whether you are currently having seizures and if they impair your driving. I have my license now, but did not for 7 years at one point.
I tried to explain this to my doctor, saying how I've found people suggesting it may be an epileptic seizures but he just told me it was nothing and only to write down if it happens. I don't know what I'm supposed to do
xxna5eemxx I hope you can find a way to either video or document exactly what you feel when it happens. That will be helpful. Do you see a neurologist?
17 years ago, I described it to my doctor and was told it was an intense headache. They refused to stated it was anything more. As it’s gotten worse, it’s expanded to Complex Partial and onto Secondary Generalized Tonic Clonic. Keppra has helped me. Do write down what you remember and, if possible, have someone watch you for any loss of consciousness or motor movements. I had no idea I was losing consciousness and luckily it only occurred in very calm environments (ie bed.). Good luck bro.
I was diagnosed with temporal lobe epilepsy and I ALWAYS remember the seizure. Is that odd?
It’s one type of TLE partial seizure where you are completely aware.
PLEASE HELP!! To understand it!!
It starts to happen to me a year 1/2 ago. to make it short. I can be any any place (my car, my couch,in the store) and if im doing something and wherever my eyes (my sight) is seen,it transporting me to a dream scene(usually a night before dream or a old dream) and in that second i feel like a panick attack.
The videos are the best I can give you. There are lots
Feeling something akin to a taste or smell. But different. Something like hearing a repeating sound or rhythm that repeats
Deja vu. Depression. Anxiety. Memory problems
Never grand mal unless drug induced
would i just ask a neurologist to give me a brain scan for this? i dont understand. i feel like i may have this and ocd, but i also fear it may be a schizo disorder, and/or this simultaneously. ive currently been diagnosed with mdd with psychotic features. im unsure what to do at this point. ive been to a few psychologists and they diagnose me with things that dont seem right, but its just like, how am i to know for sure. im not a specialist at this. im so overwhelmed. i just hope i figure this out soon, i hate this deja vu and random “memories” popping up in my head that are actually false memories.
i think ive had 2 of these actual seizures and it made it feel as if the world had shifted around me i guess and i just stayed in the same spot. maybe this will make sense? is this what one of the seizures felt like? it kinda felt as if i was fainting without actually fainting and being aware of it, just unable to describe it.
on a day to day basis i experience dreams/nightmares almost every time i sleep. i experience deja vu often. i have delusional thoughts. i also have a lot of forced thinking and intrusive/negative thoughts and strange, indescribable thoughts & feelings (i guess, not even sure what to call it) simultaneously.
That sounds really difficult. One of the hard things is that it’s so difficult to describe seizures. Honestly if someone’s never had one, they will never really understand what you’re talking about. Because it’s just different.
Getting diagnosed correctly is often very difficult. Especially if you have psychiatric and neurological conditions. But they are often together, because it’s all your brain. It sounds like you’re overwhelmed and maybe it would be helpful to get a clear diagnosis. Seeing a neurologist is a good place to start. They usually do an EEG and an MRI. But actually even if those do not show anything you can still be having seizures. If you do have schizophrenia or schizoaffective disorder, Or any other psychiatric condition along with epilepsy, it may be impossible to completely tease them apart. I personally don’t think it’s totally necessary, as long as you can determine the diagnosis so that you can do the correct treatment. You may end up just trying different meds and see what works. Because really what you want is to stop the experience. Many doctors and neurologists especially, dismiss symptoms that they think sound psychiatric at all. But certain types of epilepsy, Can I have very emotional/mental components. Let me know if you have any other questions, and I wish you the best.
ariel on health thank you a lot. im going to try and see a neurologist as soon as possible. i hope maybe this isnt whats wrong with me, but at the same time itd clear up so much.
Thank God i saw this, it was hard to describe to my mama. But when it happen, its usually caused by 1 of my senses, i feel it bein warned before it come. Then when it do come out the blue, i thought it was demonic lol cause the dejavu be scary. But once it happen, i cant read or talk for about 20secs. And i get hella sleepy. And a headache. Shit is scary man
Treveyon Kinnard I also get very tired after.
Seizures are really scary. I get very tired after also. I felt scared it was some kind of weird spiritual thing because my family said that and there wasn't any other explanation. I usually only get headaches after a tonic clonic (grand mal) seizure.
I would say the rush of joy would be better but I’ve had those feelings and they are strange but the fear is icky
Divine Feminine Tarot Yeah, I agree. I really don’t like seizures. The level of intensity makes it feel so real for me. I am glad to say that mine are almost completely controlled now with meds. It took a lot of trial and error, but I’m so glad.
Yay that’s super awesome. We aren’t sure but I’m wondering if mind are caused by a Chiari Malformation or a CSF Leak. What meds do the have you on? I was going to try CBD oil since meds are super strong for me most of the time
I've tried 12 meds actually. I have to say it's really just a bunch of guessing. I am now on 2. But everyone reacts differently. I tried High CBD Cannabis oil and it didn't do anything for me.
I have a friend with Chiari with EDS. I hope you get things figured out.
I am 41 and have been dealing with this for the last 11 years. Shortly after turning 30 I started having seizures and was diagnosed with left temporal. How old were you when they started
Takeoffyour Pants and jacket I was 12 when mine started. It’s amazing how they can happen anytime. Minor personally related to hormones in so that’s probably why it started when I was 12
Can TLE be with a normal EEG ?
O S Yes, temporal lobe epilepsy can occur with a normal EEG. I think it’s kind of crazy that doctors don’t tell anyone and information is not out there saying that if you’re not having a seizure while you’re on the EEG machine you may have a clean EEG, and you can still have epilepsy. Some people have seizure activity when they are not having a seizure and others don’t. I think it’s because it’s easier to diagnose someone if you have an EEG showing seizure activity.
Here’s an article about it from The Epilepsy Foundation
www.epilepsy.com/learn/diagnosis/eeg/what-if-its-normal
@@arielonhealth how do you react to SSRI/SNRI antidepressants ? didn't it increase the frequency of your auras ?
I do not have an increase in my seizures with SSRIs which is what I use. I also take Wellbutrin which people are concerned it can lower your seizure threshold and I have had no problems with it. Being less depressed has been wonderful. My seizures and predisposition to depression made things really horrible.
@@arielonhealth is it possible that TE aura lasts 20-30 min ?
I studying the temperol epilopsy because I had those since I was a baby they stopped for a view years then came back in a view weeks I'm going in for a MRI to see how big the black dots are if there big enough I might be having surgery to get rid of them
That must be tough that they started again. I'm glad you are getting help and checking with the MRI. Surgery sounds scary to me, but if it will help, I hope you are able to do it.
I hit my head 2.5 months ago- no symptoms of concussion (no headache, nausea, etc). I started getting depersonalization and anxiety, and it’s been persistent, but i never get that deja vu or rising feeling. Would this be just an anxiety thing or possibly TLE? Given that depersonalization is caused by anxiety, and I’ve been very anxious over my health ever since. The depersonalization doesn’t hit in episodes, it’s just there constantly and gets worse when i get anxious.
I don't know, it could probably be both. Hitting your head can definitely create neurological problems. The anxiety that goes with all that can be almost as confusing. It might not be TLE, but it could be good to see a neurologist. Neurology and psychology are both so intertwined, and I think the world is learning that more and more. It's all your brain after all!
That can be a TBI without epilepsy! (although you could definitely have epilepsy) make sure you are incorporating a Neuro protective approach to recovery
Yesterday I had about 6 episodes of intense deja Vu, plus hot flashes, my hands shaking, and a rush of anxiety. It's really freaked me out. Before I had had that happen maybe once every few months.
Is it strange for this to start late in life? I'm 34.
Cassandra Wladyslava what did you find out
Hi Cassandra, I just found your message. No, it is not strange for Epilepsy to start later in life because it really can start anytime. Mine started age 12. Mine is affected by my hormones-a category called Catamenial Epilepsy. The 2 weeks before my period I am more likely to have seizures. Just thought of that because you said hot flashes. That can be many things, but it is sometimes a hormonal imbalance (not necessarily menopause). Hope you are able to get some help.
Hi love, ive just read your reply and you seem to be going through the exact same thing, I don't know what to do.. have you got anywhere in relation to dealing with them? Treatment/medication? Gem (I'm 35 been having them about 2years)
whats bad with me is I always suffered with anxiety since pre teen years and would go numb on one side and that what happened before I had my gran mal seizure last year. since my seizure I have Myoclonic jerks still but take meds to help control it. my type is focal or generalized.
Spike 1984 I find that anxiety can be very connected to seizures. I feel anxious from the fear of having them, sometimes the seizures cause anxiety, and then afterward I get confused and that makes me anxious.
Do patients with TLE make kind of a very scary scream-more like a camel voice- at the beginning of the seizure? + thank you for the wonderful explanation ♥️♥️
Rasha Rahim many times people have a sound they make at the beginning of a tonic clonic seizure meaning a grand mal seizure. That is where the air is getting thrust out of them. That’s the time I’ve heard of any sound that is involuntary. I hope that things get better for you and I’m glad I could help
Im having this for 9 years now . Ive had 1 or 2 years without or very little of attacks . But now I have it 2 a month . Its always 3 days when 1st day is the worst and 3rd day is very light . Is anyone experiencing agression before 1st day of attacks? And is anyone experiencing Vertigo 1 day before TLS starts ?
Marta hi, personally I haven’t had problems with aggression. I get vertigo from my other illnesses so I’m not sure about that. But my seizures are linked to my menstrual cycle and so they happen in a cycle and I was just wondering if yours seem like they’re in a cycle because you said two a month and for 3 days. Do you keep track of your cycle? Once I figured that out, I was able to be ready for the seizures which was at least a start. If you want to stop the seizures it’s definitely important to see A neurologist if you haven’t already. If you don’t have a diagnosis it can be a bit of work to go through the process of getting one but for me stopping my seizures greatly greatly improved my quality of life. I also take supplemental bio identical hormones that have decreased the seizures that happen right before my menstrual cycle along with my medication. I used to have one tonic clonic seizure approximately a month and then a bunch of partial (focal aware) seizures and they would increase the two weeks before my period. Even after I got the tonic clonic seizures under control, I still had many partial seizures before my period. So I found a second med that helps with those and with the hormones I have almost no seizures now. Best to you.
*That* was the short version?
Lol!
Pds d I was just thinking this last week just in conversation lol
My grand mail started 8 years ago. !!??We're do u go for nolage because our NHS consultants are thick or don't last long and this one is nice but her education on epilepsy is less than wot I now it seems I'm past from one consultant two the others funking he'll I could have been locked up with on consultant absolute plank .lol o well done next I try two keep the consultants at bay .Bay now so I can use the benefits to my advantage.
I had to get CPR done on me because I had a sizure
Sorry for the spelling. I didn't want to interrupt the video by turning on the microphone to spell. I had to get CPR done on me because I had a epileptic seizure. My life flashed before my eyes and I really only came to terms this morning that I had a near death experience and now I feel depressed ATM to the point where I physically can't go out past my front door now.
What is CPR? I'm sorry. Hang in there. Hugs
Have you considered laser ablation for epilepsy?
no, I am not really a candidate, have you done that?
+ariel on health first off, thank you for sharing your video's! It's really helpful to find online communities like this who share experiences. I have focal epilepsy with secondary tonic seizures. I also get simple partial seizures. I've been getting tonic clonic seizures since February of this year. So far no medication has helped to fully control my tonic clonic seizures. I'm starting my fourth medication now. I've felt like a guinea pig these last few months. It got to point where I told my neurologist that I couldn't take it anymore, physically and emotionally (as you mentioned epilepsy often goes hand in hand with depression). She said that I would possibly be a good candidate for surgery. They would have to run more tests to make sure. The laser ablation surgery seems less invasive than the classic lobectomy. Have you heard of anyone getting laser ablation surgery and possibly their experiences? Thank you, wishing you all the best!!
+Fanny Durocher I don't know of anyone who got the laser surgery. I'm glad the videos help! I totally understand feeling like a guinea pig, I have tried 12 epilepsy meds. It took a long time to find a second med to stop the partial seizures after the TC were finally controlled after 10 years of both. I have had some that didn't work, some that gave me such horrible side effects, I couldn't stand them, and only 3 that work and I tolerate. if you have to go slowly changing, it makes sense. it's like an emotional and physical rollercoaster. best of luck!
ariel on health
Thanks for the clear way you talk about TLE. I'm really struggling with the emotional overload of my seizures and newly diagnosed. So good to hear you explain this stuff in a way neuro's dont.
Death can come of it...right
I went to my doctor and she said that I it’s a migraine aura. I’m not sure :/
Emily Smith I hope you can get something to help it. All neurological problems can be so complex.
Sadece temporal epilepsi anlıyorum başka bir şey anlamıyorum :)
Any way of contacting you privately?
having 24 modes of perception.
script have color feelings and imagery.
Oh dear, I’m just realising this is what may be happening to me. I’m really suffering and pretty scared.
Lissy Moz I’m sure it is overwhelming. Whatever you are going through, whether it is a seizure or not, it is important and you deserve help. I always say “your experience is real”, and it’s important to remember that dealing with other people and doctors. Just know that getting an answer may be helpful because then treatment is an option. I now have almost no seizures. Remember, you are not alone. 😊
I've suicidal my whole life. Check out my channel. I've got 3 videos on how the tle effected my life.
I was like you and I was completely healed because of my return to God and Islam. Praise be to God that this universe has a creator who said in the Holy Quran: Why would God make you torment [of your past sins] if you were grateful and gained faith - bearing in mind that God always responds with gratitude and gratitude, I was very addicted to porn, and repented to God so that I could get rid of it , and whenever I went back to porn I would have an epileptic seizure as a punishment, but when I became straight for God’s sake, it didn’t come. I have been suffering from temporal epilepsy from my childhood, and I did not know until this year, and thank God I recovered from it. Now its five months i didn't have a seizure, I invite you to discover your Lord and your Islam to get rid of this torment, for it is the true religion
Can you talk out of your head and and your 👀 are open yet you can't see anyone and only hear deep on in your head.
I don't think I have had that experience exactly, but since there is no impairment in consciousness with the focal aware/simple partial seizures, my eyes are open. Seizures involving the senses, such as seeing, hearing, smelling are definitely a type that some people have. It is where exactly the seizure is starting in your brain that causes the type. That sounds really intense though, not nice at all.