12:48 12:48 12:48 12:48 My daughter is possibly looking into having left temporal epileptic seizures. Her clinical psychologist is concerned due to what she tries to best explain what happens when she feels weird. She states, I feel frozen and I know something is off but don't understand what's happening " I myself as her mother has noticed that she stares at random times. There was an incident where her and I were watching a show... we were having a conversation and then she stopped talking for maybe 30 to 40 secs.. I witnessed her on the couch saying she was going to kill the cat. This is not her normal behavior. The cat was scratching at a picture on the wall. I asked her if she remembers what we were watching before this happened. She stated, No I have no clue of what we were watching. Her knee surgeon has mentioned her memory is quite poor. Her last episode she did forget her night meds which are used for mood stability but are anti seizure meds. She started attending a partial day program for her mood stability and emotion regulation. On day three she woke up and she was more tired then usual. She was on her me menstrual cycle. In the morning she said she had a panic attack. In the afternoon she explained she felt frozen, felt like she was there and listening but has no memory of even driving to group that day or even what the group discussed that day. She states she wants to say something but verbally can't. Afterwards she left group and had been yelling and screaming and crying and thrashing around and was dismissed from the program. Before she gets angry and out of control her thinking is not clear. She has done things to the point that she has no memory of cutting her hand and face on a glass picture in my home. When she is in this raging fit... she states, " I can't see anything, hear anything or feel anything. After the episodes have subsided she is so exhausted that there was a time her cousin who lives in Florida told her recently that she slept in the front yard for two hours. Has a huge headache but doesn't understand why or what triggers these. Today she explained that she is noticing more often then not while driving that she goes into another world for maybe 20 secs and then she realizes she's driving. Her memory has changed within the last 5 years. Many events or places or people that she can't remember. Another thing she explains is that she feels like time lapses. Or everything just stops as if she is going through the motions. These episodes do pop up more around her menstrual cycle as we have been watching and noting these events. She does hold her head with both hands on each side of her head while yelling and screaming and a cool rag sometimes helps over her head and eyes. Her head is physically very hot to the touch that is why I get a cold rag and then it can snap her out if it. Any idea or light you could shine in order to help her before she sees the neurologist at the end of this month?
Thank you for posting this. I was diagnosed about 15 years ago (can’t remember exactly imagine that), with having focal seizures. I’ve been medicated since but haven’t followed up with the neurologist since that time. Recently I’ve had a lot of these symptoms which have led me to research it more. I have the deja vu and physic like experiences often. I constantly smell the scent of vinegar and smoke type smells. I have nights where I will wake up because my head is vibrating, along with it I have an intense euphoric feeling as if my brain is being massaged. Sometimes my wife will feel it before I wake up and she gets scared and has to wake me up. Sometimes I hear things when no one else around, usually whistling or faint music. Random words will pop into my head out of nowhere. Random times throughout the day I’ll feel pressure in my head along with a euphoric feeling. I experience what I guess is best described as vertigo. I’m having a lot of joint problems now. Primarily in my neck at the base of my head. Worst of all my concentration and memory has gone to crap causing me a great amount of frustration. Recently I’ve been finding it very difficult to hold a conversation. I can’t seem to find the words to articulate my thoughts. It’s like I know they are in there somewhere but I can’t dig them up and spit them out. Often when asked simple questions, I don’t have the answers. I stand there feeling like an idiot and It’s starting to become quite embarrassing. For some reason writing and typing is much easier. My wife has even said in the past that it’s odd that I’m able to express myself better in text then in person. For a long time I’ve been blowing off these individual symptoms but they seem to be piling up more and more which has caused me to start doing some research and I’ve made an appointment with a neurologist. I guess I had thought it’s just how I was but I’m realizing that it’s not right and I need to get checked out before another symptom pops up. I’m scared to death to go for fear of the outcome because I have a family to support. As I’m typing this I asked my wife if she has lit any candles because the scent of candle is overwhelming yet she hasn’t and she doesn’t smell anything. Thanks again for sharing these videos.
Benjamin Hawkins Wow, that’s a lot happening. It sounds very upsetting. It is very good you’re going to see a neurologist. I’m not sure if you are still on Epilepsy meds, but it’s really important to get safety labs and monitor specific bloodwork because Epilepsy meds can be strong. Also, it’s important to keep trying different meds if they don’t control all your seizures or are not tolerable due to side effects. I went through 12, and now have a almost no seizures, only a few mild focal/partial a month. I had some meds that only stopped my tonic clonic seizures. That’s why I am on 2 now. But lots made me tired, or gave me headaches. One caused amnesia! Haha! I know it doesn’t sound fun, but the process is so worth it. My quality of life is so much better. I’m not sure if you’re afraid of going to the neurologist because of what you might find out, or that you might have to stop driving or something. Really, it’s best to get all the info because then you can get the best treatment. Also, I have gone periods where I couldn’t drive due to med changes etc, but once you’re on the new med and it works, you can go back to driving. I encourage you to remember that getting things figured out and meds right will ultimately be more supportive of your family. Your health is important, and it might take some time etc, but you can take care of them much better long term if you can take care of your health. Both mentally and physically. This stuff takes a toll in so many ways. Be sure to talk to your doc or a psych if you feel depressed too. Epilepsy, especially TLE can often increase depression a lot. I genuinely wish you the best! If you have any questions, let me know. I really believe it will get better if you get answers and treatment. Remember that your experience is real, and if a doc is not helpful, find a different one. I’ve had very good and very bad neurologists. Some say it’s all psych or don’t listen well. If you don’t feel heard, you are the authority, not them. No one who has never had a seizure will really know what it’s like, so describing them is kind of a crap shoot! 👍🏼😁
Thank you for the encouragement. Sorry for taking so long to respond but ironically I forgot, lol. You’re right, I hadn’t gone for fear of what they would say. I finally got an appointment but it’s a few weeks out. This week was so bad I just went to the hospital. They did an mri to rule out tumors and then sent me to another hospital to have an eeg. I’m currently here waiting for that now. The drs and nurses have been very helpful. They said “your not crazy, there is something wrong.” Lol. They are saying they think it is either temporal lobe epilepsy or mesial frontal. I’ve been on lamictal for about 20 yrs and they’re saying if it is mesial frontal that lamictal is the wrong treatment. I’m just happy to be making headway at least. Thanks again so much.
Benjamin Hawkins I’m so glad you’re getting some validation and information. I know that’s a crappy way for it to happen, but I’m glad you’re getting things figured out. Even if LAMICTAL works for some people with TLE, it’s not the best for everyone. I hope you get some good info and up your quality of life. If you like, give me an update sometime. Wishing you the best!
I cannot tell you how wonderful it is to have found your channel. I'm a 69 year old male geezer, a songwriter and musician, who obviously has been having TLE simple partial seizures since I was about 20 years old. No doctor or shrink has ever even mentioned this possibility. The convictions of doom and dread, death crawling up my fingers, terrible deja vu, a feeling of something bubbling up from below, strange hallucinations, a loss of recent memory, rumbling voices that I can't quite hear, the feeling that all is more real than reality, a smell/taste like ozone or diesel exhaust... I've had it all. The one facet I have that I don't think I've seen described is a horrible feeling of a subtext. It's just like when you are first waking up and know you have had a powerful dream but can't quite remember it, but have the conviction that it is still going on, just below the surface, and that it's real. It's like that, coupled with the dread that if you ever did tune into it, you wouldn't be able to tune OUT of it. It's like a subtext. There is so much more; I feel like I could write a book about this, it is so complex. It has tinted my whole adult life. I haven't had a bad life, but wonder how many decisions I have made based on a dread of these attacks (I've even given it a name; I call it Zondo, which is an anagram for "NoDoz.") Currently I'm on a tiny dose of lorazepam (.5mg once a day) and it seems to be helping to keep Zondo at bay somewhat. Finding your channel has been a major enlightenment for me; there is no way I can thank you enough for explaining what fifty years of shrinks and doctors couldn't begin to fathom. Thank you Ariel.
+Agnes Onus I really appreciate what you said, I understand how hard it is to live with this. I think I know what you are saying about a subtext. My fear was that I was always about to do something wrong. Strange feeling like dread but continuing. If you can get to an epileptologist or at least a good neurologist, you may be able to get on the right meds to stop the seizures. I used to take Benzo's such as Lorazepam and clonazepam, and they helped stop the seizures. Now, I am on two other epilepsy meds that almost completely control my siezures. Do check it out with doctors if you want to try meds. My quality of life is way higher, and my level of fear and anxiety has gone down alot.Blessings
+ariel on health thank you for this kind response. "Always about to do something wrong" is an interesting component. I think I know what you mean by this. As I mentioned, I think this is such a complex affliction that it's hard to pin down all its facets. I certainly am familiar with "the strange feeling like dread but continuing." Sincere thanks, once again, for your extremely helpful and thoughtful observations, and for taking the time to reply.
I'm 15 and I play a lot of music and I feel like many of my 'episodes' are almost triggered by the music. Obviously I'm not a medical professional but it's hard to ignore that intuition. I can't imagine living without music and I would hate to have to get on medication so it's a tough situation to escape. More recently, though, I have begun to be a bit complacent with them, I have lost the fear factor a few months ago. It's almost soothing in a weird way. I was wondering if you have ever experienced anything like this and how you are able to deal with it, if you have.
I have these symptoms too but I am anyways able to talk etc so no one believes me, except the doctor, & he assumes I pass out & don't realise!! Neither is right, I am litterally just a but weird sometimes & have funny thoughts, & it ruins all of my jobs & my life.
I’m undiagnosed but listening to you speak about partial seizures I’m like wow…. I’ve been dealing with this my whole life without knowing it. In the past 2 years I’ve had partial seizures that last a couple of seconds. I didn’t know what it was before and I thought I was going crazy. Growing up and even now I’ve always had mood swings, bad sleep, vertigo, disassociation sometimes at seemingly random moments. Until recently now that I’ve experienced focal awareness seizures I just realized that something more was going on. Thank you for your videos. I’m hoping to get diagnosed soon, and listening to your story puts me at ease because I’ve been experiencing the same things!
I was diagnosed with this almost ten years ago. I've been on lamictal. I'm so grateful for my neurologist. I wish I had discovered this earlier in life, because I suffered through my childhood (only the anxiety was present then) and we couldn't figure out what I had. Interesting and relieving to see that there are others going through the same thing.
+BeccaRaptor94 I totally understand, I spent about 14 years having SP seizures before they were diagnosed. I was having TC seizures, but I didn't know that the other experiences were seizures. This led to a lot of confusion for me, I just didn't tell anyone bc I thought I must be crazy. I am so glad you got yours figured out. Be well.
Tee Cee Yeah, I know how that is. You really do need to find someone who will hear out your experiences. They need to believe your descriptions to really help you. Best of luck!
I cannot thank you enough for explaining how I’ve been feeling. I haven’t been able to voice it to people around me without someone just brushing it off.. I had another one today, and have been getting them more often over the last year. I had another one today and finally broke down and have started to look more into it.. this video helped a lot!! 💛
I am so genuinely glad it helped. Keep learning about it, Doctors will dismiss you over and over. I think one of the reasons is that it’s so difficult to describe.
I never forget, your experience is real. Here’s a video I talked about my experience with neurologist and temporal lobe epilepsy th-cam.com/video/_eEIvO9YO_U/w-d-xo.html
Thank you from NZ. Diagnosed at age 10, still being treated at age 41. You raised so many issues that I beat myself up about for a very long time. An excellent resource for everyone xxx
+Lee Finch Thanks for your comment. I really understand being hard on yourself. Fortunately, when you know more about it, it's possible to be kinder to yourself. I hope you can.
Ariel, you have changed my life! Thank you so much for this video series! I have been experiencing just what you describe for 30 years. After a very bad series of what I now know are seizures, I lost most of my memory and had to start life anew. I kept my experiences to myself for all my life, mistaking them to be paranormal occurrences and not wanting them to impact my reputation. The de-ja-vu, missing time, and unexplained injuries, and altered states are so easy to mistake as anything but Epilepsy (especially if you google the symptoms!!!) It was when I stumbled upon this video of yours in March that I finally found the answers I had been seeking for 3 decades. I am now awaiting my appointment with my new Epileptologist to confirm that my seizures begin in the Temporal Lobe. It is a long wait - until August!! Once it is confirmed I hope to share about my seizures too. You've shown me how helpful it can be to speak about the details of what one experiences during a seizure. Thank you, again, Ariel!
Maya's Dream Wow, thank you so much! I really hoped that this channel would help someone like me to get their life back. I’m so glad you let me know. Sending you loads of good thoughts on this journey! I hope you can get things stable and improve your quality of life. You make this whole experience of sharing so worth it! Let me know how it goes if you want. Remember, your experience is real! I had one Epilepsy doc who was really terrible, so if you come across that, I say just move on and trust that you know your body and can figure out what you need. 😁 Best wishes
Thank-you for your channel! The videos and experiences you've shared have been really comforting, as I also have temporal lobe epilepsy. It has helped me a lot over the past year to talk about TLE and after checking out your channel, I feel better knowing I'm not alone in my own experiences with seizures. You're great in describing what epilepsy is like for you, and not only specifically seizures, so just thank you. The clips you've posted reminds me how legitimate and real the impact epilepsy can have on one's life! Knowledge is power!! Sharing these things gives hope for happiness and good health so thank you for that too. Look forward to anything else you may share! Take care!
I used to feel so alone. I still don't like talking to much about it but it feels good to be informed and to feel somehow accompanied in this. Thank you.
Gerardo Barrera I felt so alone for so long, my goal here has been to help other people feel some connection, so I really appreciate you telling me it makes a difference. 😁
@@arielonhealth It totally did, thanks a lot. Now I'm currently struggling on being able to talk about it because until know just a few people know about it and I think even fewer understand what is it about.
Gerardo Barrera I didn’t tell anyone except close friends and family for 15 years. So, it was hard at first. Really worried about what people thought, felt a lot of shame for years. It’s really sad that we feel shame for our illness because of stigma and ignorance. Once I got tired of feeling like so many people misunderstood Epilepsy, and I started learning about it, then I decided to educate people and that made it easier. I wrote essays in college, and slowly started educating family and friends so I could share my experience. I felt I had to give them enough information so they would get it was a real disease and thing I experience. Especially the partial/focal seizures. They can sound bizarre so I liked to tell people more when I told them I had them. With the tonic clonic/grand mal seizures, I think people feel shame because when people see a seizure, they are scared. It’s not our fault. We didn’t do anything wrong. But the discomfort with how awful and scary it is to people, makes them uncomfortable to talk about it often. I remember becoming part of an Epilepsy meetup, I went to an Epilepsy Foundation conference, and when I talked to more people with Epilepsy, I realized I am not weird, or wrong somehow. That really helped me.
I found a connection between Ischemic stokes and temporal lobe seizures. When I was younger I may have been having strokes and not known it until my 30's, and since then these have intencified, and now include two Ischemic strokes turning into 2 mild seizures. My research into this began with a study I did about understanding my Hypergraphia.
Thank you so much for posting these videos. I have it too and it's always been difficult to find other people that are able to understand it let alone diagnose it.
I'm so grateful to you for sharing your experience and knowledge on tle. I am just beginning the process of being "tested" for this- have an eeg and mri with contrast scheduled for a month or so from now! I've been doing lots of research to calm my nerves :) your videos have been a great resource!
I have watched your videos over and over cause I have epilepsy. I relate to you so much. I just keep watching it because I feel like I’m not alone. Thank you so much. I have thought I was crazy for years. I typically have focal seizures all day long. On and off. Like. A lot. And I never leave my house because I’m scared to death to walk outside. The light affects me. Makes me feel sick. Mine has gotten so bad I don’t remember my childhood at all. I’ve been having uncontrolled seizures for over ten years. I’m still praying something helps. I feel like I’m dying.
LINDSAY COUSINS that sounds so horrible! Wow, I’m sorry you are having them all day long. I was so petrified when I didn’t know what they were, as I’m sure you were too. I’m so glad my videos have been able to help you not feel so alone. That was literally my goal with this channel. I felt so alone, and thought I was crazy. Feel free to ask me questions. I hope you can get some help. If you have access to a neurologist or even a PCP can prescribe some seizure meds. Have you tried any? I got so afraid of my focal seizures that I couldn’t leave the house eventually too. It’s such a hard experience. It took trying 12 meds to get on a combination that basically stops all my seizures. I got a dog I trained as a service dog for when I had a focal seizure, and then I felt more comfortable going out. So my QOL is much better. I hope this for you too! 💜
Chloe Weeks I’m so glad you find it helpful. I didn’t know how to describe my seizures either! I hope to someday put together a “seizure dictionary” with patient descriptions. Then doctors could have you look at it and you can say- That’s it! It’s so strange, because there is nothing quite like a seizure in the rest of my life to compare it to for someone who has never had one.
+mani00 I am so glad I could help!!! I had so many for 14 years or so before I knew what they were. I am so glad to help people figure out what SP seizures are. They are very difficult and confusing. Sometimes, really hard to describe to people and doctors.
Yes! I just recently increased my keppra from 500 mg to 750 mg cuz I had another generalized secondary seizure :( but i noticed that i still get SP seizures right before/on the day of or a day after ovulation and my period but SUBSTANTIALLY decreased from what i had when i wasnt on keppra and the 500mgs . So i dont know if I should tell my doctor to increase my dosage again to 1000mg or just start taking progesterone BC because I have heard that works great. Just dont know what I would do when I want kids a few yrs down the road. I am so confused :(
mani00 I cant tell you reccomendations, however, I use Keppra at 1000 mg a day and Progesterone. Makes a big difference. I am also on 600 mg Lamictal a day. I also worry about what I will do about kids, I guess just taking it one day at a time, Looking for support online for mothers to be, and talking to your doc if you are really close to having kids seem like a good idea. Best to you!
I take bio identical progesterone increasing throughout my cycle, because the time when I have most seizures is toward the end right before my period. Talk to your primary care doc. My neuro wouldn't prescribe it for me bc she said it helped but it was not in "her field". So, my gyno doc does. I tried lots of birth control and that can help as well.
Thank you so much for this video! It has definitely confirmed a lot of what I have suspected has been going on with me. I just learned about TLE about a month ago and have been living with what I imagine it is (simply because I have yet to be diagnosed), and I can truly relate to the feeling of not trusting anyone to talk about the experience for fear of being branded with a psychotic disorder. Thank you for all of the information and support! You just got a new subscriber :) 💪🏻✨🎉
+ariel on health god only cures and help ,god is the only helper god a saver for who follows him he follows the right road he follows the right path and whoever follows his word is save, doctors told me that i have a temporal lobe epilepsy, i have seizures but i have communicated with devils and god prophets , i believe that i have supernatural power from god himself , because an epileptic person cant predict the future , most doctors exploiters and liars , god will send so many to the hell,
+ariel on health doctors most of them are exploiters , i dont rely on them they dont rely on me and i am not relying on doctors and we dont rely on them, just believe in god not false science and you all are cured ,god who is refused by the doctors ,they will go to the hell for desecrating the word if god
Thank you sooo much for posting this! I am as of yet undiagnosed but have had years of "attacks" where i fall on the floor, vomit, have complete incontinence, head splitting headache, only partial loss of lucidity but i can only see straight in front of me and seems far far away, hum in ears, muscle tightness, unbelievable profuse sweating and shaking(not grand mal ish tho) and rapid blood pressure crash. I've been having these for 8 years but they are getting worse now. more frequent. So far I'm told "mystery, panic attacks, migraine, abnormal migraine phenomena, orthostatic hypotension, and mostly vasovagal syncope from my village doc. They are currrently doing thyroid biopsy on me(had attack right on the table when done), EEG testing and told me my hypothalmus doesn't seem to be getting the right messages from my thyroid. my doc hasn't seen me have on yet so i think he keeps thinking it's a psychogenic panic/faint of some description. We've told him that I've had several severe concussions(the last one was particularly bad 15 years ago and has affected me altho in many ways i have healed very well). I know...long story(yawn) but so frustrating. Unfortunately my SO has just been putting up with these and cleaning up the terrible messes when they occur and getting me the salt water to raise my blood pressure but i , like you used to be, just don't feel like going out for fear of having one in public If someone calls an ambulance(i'm sure they would cuz it's Canada and most Canadians(and others) assume they(and many other medical stuffs/services) are free but it's not all free. it's $300 each time(just ambulance) and there's no way we can afford that. i've had that happen before(well meaning but unfortunately unknowing and obviously more healthy/better coverage than i have folks)... anyway...any ideas anyone and/or ariel? Sorry if i sound like a crank...just frustrated but grateful for any others who would like to share their similar experiences or knowledge :)
Mad-Village Muller that sounds really intense. Hard to deal with too. I hope you get some good answers. I know it’s hard being undiagnosed. Wish you the best.
Thanks for the personal reply Ariel! I will watch more of your videos to educate myself about epilepsy in case it turns out to be that. I wish you a super festive season, seizure free(we can hope), safe, calm and yummy! Happy Festive Season, Merry Christmas and Winter warmth to all your subscribers here too! :)
Great video for people looking for answers and information. I had a benign glioma tumour removed from my right temporal lobe when I was 16. Been having seizures since I was 8. Now I get simple partial seizures, never get the complex ones, but they sometimes turn into the full generalised ones. Do you ever feel ecstatic afterwards? I do sometimes, never get any fear though, except the natural hope that a simple partial doesn't spread while it's occuring.
john higgins Thanks, glad it’s helpful. I don’t feel good after any type of seizure. I feel confused, get a headache, exhausted, upset. My focal seizures used to turn into tonic clonic but now they don’t. I feel much less stressed. Hope things go well.
Is suddenly tasting blood in your mouth applicable? Because I'm struggling to find what type of epilepsy i have. My neurologist doesn't give me simple answers i can understand because i have trouble understanding sometimes. I'm really helpless rn
Hey Ariel, why didn't you include Jamais Vu in the list of TLE symptoms? I have TLE and let me tell ya, while I do occasionally have spells of intense Deja Vu, I'd have to say I have had more experiences involving horrendously overwhelming Jamais Vu. Scary as fuck too. Anyway, thanks for the videos. You're an awesome person. ;)
Fugg Guegol I talk about Jamais Vu in a video that I am editing describing more of my seizures. I have only had that happen intensely once and it was scary. I didn’t know it was a seizure at the time, so I was totally freaked out. I’m glad you mentioned it. I’ll try to put that up soon.
im 41 years old and have had temperal lobe epilepsy since the age of 11. i have had every kind of seizure going from shaking to staring into space with funny smells stars flashing in my eyes and end up with an almighty headache and feeling really tired.
your videos are so so helpful and inspiring thank you for helping me understand! I have been getting so tests done for possible complex/partial seizures and have a few questions.. I experiance a lot of what you are saying and when I leave my house I often experiance that things aren't real like a depresonalisation feeling and my doctors are trying to work out wiether I have borderline personality as well as seizure activity, so very tricky. a lot of my experiences are hard to decide wither it was a simple seizure or not however I have a lot of experiences where I have that doom feeling and depersonalisation and then all of a sudden I will be listening to a conversation or whatever but what was going on a few minutes after that strange feeling I have no memory of so I know something has happened but nobody seen anything.. I guess I'm doubting that I'm feeling these things because nobody is noticing my blank moments etc.. I have had a sleep deprived eeg which showed abormalaties but is it possible for people not to see what's going on durinng my 'seizure' moments.. I wish there was a way I could explain to family that this is real and for them to know when it's happening.. thanks again for posting your videos it's nice to know others experiance this..
Biz, I understand how hard it is to have people doubt you. Just keep telling the truth of what you experience, whether or not others see it. That's very important because only you know what it is like, whatever the diagnosis is. look at the videos with examples of seizures, and about how doctors doubt many people. I used to be scared to tell anyone what I experienced bc I was worried they would think it was only a psych problem, when it is actually seizures or both. just remember, what you are experiencing is real for you. 😃
Sorry, I am on my sons computer. I am Joseph Christopher Dodge on Facebook, if you ever need, to ask me a question. My wife and I share my Facebook page. You are by far the most help that I have ever had. .... Besides kepra and depakote.
I had Temporal lobe epilepsy, the medications works very well with me, but I still thinking about surgery to stop using the medications. I need advice what do you think??
Ahmed Kamal Surgery is a very personal decision. It really depends on how much the surgery would help versus the complications. I understand wanting to get off medication though. I don’t like it but I am so glad not to have many seizures though. Hope you feel out what is best for you. Wish you the best.
Basically I have been able to continue to take my two epilepsy meds and work on getting my hormones balanced which helps to prevent seizures. So now I have almost none. Since it was one of the symptoms of my seizures, stopping seizures was the key.
@@OS-bs9ky I'm doing a live stream tonight at 9pm if you are interested. If you are subscribed, you will probably get a notification. But only if you have the bell on. I'm just gonna be doing my nails and chatting and people can write in the chat and talk about stuff or answer questions or just hang out. I would be happy to discuss this later if you’re able to come. It’s the first one but it’s helpful for me because I enjoy your videos and I don’t like writing. Also other people might have similar questions. I hope you have a good night
I've had MS for 17 years. Started having Temporal Lobe Seizures for the last 5 years. Not sure if they are related or not. My neurologist sent me to have an EEG or EKG, (can't remember), Yay for memory loss. Anyway, it turned up nothing. Basically they just tried to induce a seizure with noise and flashing lights with my head hooked up to a ton of wires. When they finished, the doctor tells me, "well, the results don't show anything abnormal. You don't want to be diagnosed with seizures anyway, they take away your driving privileges." Wow. Starting to think I should get a second opinion.
Did you ever see another neurologist? A person can have an EEG that does not show seizure activity if they are not actually having a seizure. Some people have seizure activity that shows up all the time. I hate when doctors say nothing is wrong when something is. Even if they don't know what. If you are having seizures, the best thing to do is treat them. The doc knows that when you treat them you can go back to driving. It's not necessarily a forever thing. I didn't want to lose my license so I didn't get help, and honestly it was a living hell.
Look into food and epilepsy. There may be a link between "leaky gut" and your epilepsy. Seems to help mine if I stay away from cheese. There is a veterinarian that works with dogs that have epilepsy that has had astonunding results by removing the glution, casein, Soy and corn from there diets. He goes by Dogtor J. Hope this helps. Troy
+Troy Bass Thanks, I am on a gluten free, sweetener free, additive free diet for my lyme disease, which helps alot with that. I hope it helps with seizures.
Hello. I have left mesial temporal epilepsy. I had a temporal lobectomy about 2 months ago. For now, I'm a little better than before. if you have a chance of surgery, try this.
uhomachinky I’m so glad to hear it went well. I hope you continue to do better. Fortunately, my seizures are almost completely controlled with meds now.
When i get deja vu i get everything in so much detail from the exact lighting on the room to the amount of skin o have exposed it comes in burst but i would always just shrug it off intill it would happen then i would start to freak out not sure if this is something i have or not i also see the auras all the time everywhere i go i used to think it was because i had bad eyesight but i relized not everyone saw what i saw which is basicly like a imprint of light but with more colors
uwu I found the deja vu to be so intense that it caused me a lot of anxiety. It was so vivid, like you said. Also, it just felt trippy to have it really feel like time was happening over again. I didn’t know they were seizures for 14 years. Then I read a patient description that said it seemed “more real than real life.” That was it, the deja vu other people say they have must just be a mild odd experience. But when I have deja vu, it’s a sudden intense experience. I didn’t realize we weren’t talking about the same thing, but I am so grateful I know they are seizures now. 12 meds later, and I haven’t had a deja vu in a long time. Mild sensory seizure every so often.
Hey great video, I'v been getting worried recently as when I was 17 (im now 27) I was overdosed by the hospital and I had 20 grand mal seizures in the space of 4 hours which was caused by the overdose. Ever since then I have had quite a lot of mental health problems eg anger, hallucinations (smelling, tasting and hearing things) like I would suddenly say I can taste swimming pools and it makes sense in my head and my friends have said I go vacant and stare, and then i can't remember anything for those 30-40 seconds my speech goes a little muddled then im fine again. The last few weeks I've been getting this déjà vu feeling and then just not feeling right but i can't explain why I don't feel right and then after a few minutes it passes. I'm seeing my GP next week and maybe i should discuss this with him, we have tried several times in the past but they put it down to being mentally ill when im worried there is something causing this. Hope you are well, and thank you for sharing the infomation.
+Taylor Smith I hope that things went well with your GP appt. I know that many people say this is just a mental health thing. I am aware that both aspects are probably at play here. Many people with seizures have mental health disorders as well, but the seizures may be an important part.
I am about to change Dr. but I am not sure what to do the Dr. I have now does not think I have seizure s so not treating me and I know something is wrong. I have been having problems for about 7 years and all they want to say is that I am having sudo seizures but I can sometimes feel them before and other times I can't. I have a real hard time talking after I have had one
+Sara Hunt I had the same difficulty. My doc diagnosed me with Epilepsy, then later changed his mind bc my EEG was normal. I was so frustrated, I changed doctors also. I am so glad, I have pretty good control now, and someone who listens and believes me. That's especially important for TLE. I did a video on dr. who won't believe you.
I get deja by ever few seconds sometimes in very rapid secession. no clue what going on with me and it's been hard looking for a cause or even articles on the matter. each hit of deja by lasts just a second but happen so much it's like a jolt in my brain. it's not like what I would call a normal deja by where is last awhile and fades with you trying to figure out why that thing was familiar but rather a burst of the feeling of deja by that can be almost audible and my eyes almost twitch. I haven't the slightest clue what going on with me but it's been this way for a couple months. I had a bad neck and back injury in Afghanistan but I'm not sure if anything like that could bring this on
+Tj Finley Yes definitely. Nervous system disorders can happen with spinal injuries. I feel jolted as well. Had a seizure yesterday and almost jumped. It was auditory, where the sound goes muffled in one ear and I hear a ringing sound. Same feeling in my head as when I have deja vu. They can all be siezures. Really, get checked out with a neurologist. There is help for this.
+ariel on health this is exactly what I'm going through. I was just diagnosed with temporal lobe epilepsy. my minor seizures are usually triggered by boits of severely heavy deja vu that cause loss of hearing and tunnel vision. I've thought that was normal my whole life untill I collapsed from it recently. seems like it happens mostly when I'm under extreme stress or having bouts of anxiety.
+Tj Finley LITERALLY EXACTLY WHAT HAPPENS TO ME, DUDE! (Well, not really anymore, because I've been on lamictal for almost 10 years.) You are the first person that I've seen describe it exactly as I do, and it's a relief to meet others like me. PS. Love your R2-D2 profile pic!
Thanks. Do you have a driver's license? Hey I think I see an eighth of an inch on the top left of the bulletin board that isn't used yet, just so you know. (lol)
twinstar9 Hi, I just saw this. Not that you still need an answer to the question but I’ll say anyway. Yes, I have my license. My focal/partial seizures are almost under condition, very mild, doc and I decided it was safe. Also, haven’t had a tonic clonic seizure in 15 years. However, I didn’t have my license for 7 years due to seizures. That was so hard. I hope things are going well.
I get the anxiety, smell,and deja vu , I'm so scared , I don't want it to spread so I get full blown shaking seizures , and I'm deff not getting surgery
Lucid memories Hi, many people only have focal/partial seizures. Getting checked out for seizures is helpful so that you can rest assured they don’t turn into tonic clonic seizures. Surgery is actually quite uncommon for Epilepsy. There has to be a really good reason, which is usually that someone is med resistant (after trying everything) and their seizures are super intense or endangering them. I’m on meds and they’ve almost completely stopped. I encourage learning more about it. You may have seizures, you may have something else. It’s helpful to find an answer, but hopefully you can remember that your experience is real and whatever is happening affects you. Hope you do well!
+Tj Finley The sudden feeling of euphoria is also a seizure described by some people. I typically have ones with fear and sudden anxiety and dread. I also have depression and anxiety, and you can have all of them. They are all affected by each other as well. Check out the video on epilepsy and depression. Wishing you the best.
I've had this since I could remember. It got so bad to the point where going to school was so impossible I had to drop out senior year of school and get a job. It really screws everything up, but I did start smoking marijuana and I honestly haven't had a single seizure since smoking everyday. It doesn't make you normal again, but I definitely didn't have involuntary trips all the time! that's why medical marijuana is legal
what about nocturnal seizures? I've had them since I was 5, but didn't know what it was until 28. I have hard time speaking. I stutter, get confused in conversations, and short term memory issues. I might even be dyslexic. Many people around me don't want me to go to doctor or even speak about it (my husband and his mother). But call me stupid right front of me under their breath. I still can understand everything that goes on, but it's like I can't communicate well.
That sounds so horrible. The thing we need the most is supportive family and friends. Do get to your doctor please, you do not need to suffer like this. Also, check out my video on Epilepsy and Memory, maybe if they watch it that will help them understand a little. Yes, I do know about nocturnal seizures. 90% of my tonic-clonic seizures were in my sleep. What do you want to know about them?
+ariel on health My nocturnal sleep seizures went along with sleep terrors during my childhood. Eyes wide open, screaming, walking through every room in the house. These terrors happened from 8 to 15. I sleep talk as an adult. "One time I sat up, patted the bed, and asked where is my cheese burger? (said few cuss words) which I am not know to cuss. Is nocturnal epilepsy different for everyone? How often does seizures and dyslexic are inherited into families? I've read that seizures eventually cause dyslexia, but I am worried for my daughter. I guess somebody in my husband's family has the nocturnal epilepsy (he also stutters. My father is severely dyslexic. Sister talks in her sleep and my brother use to sleep walk and is minor to moderate dyslexic. I am also worried that medicine would make me worse off with confusion or losing my DL.
+ariel on health My nocturnal sleep seizures went along with sleep terrors during my childhood. Eyes wide open, screaming, walking through every room in the house. These terrors happened from 8 to 15. I sleep talk as an adult. "One time I sat up, patted the bed, and asked where is my cheese burger? (said few cuss words) which I am not know to cuss. Is nocturnal epilepsy different for everyone? How often does seizures and dyslexic are inherited into families? I've read that seizures eventually cause dyslexia, but I am worried for my daughter. I guess somebody in my husband's family has the nocturnal epilepsy (he also stutters. My father is severely dyslexic. Sister talks in her sleep and my brother use to sleep walk and is minor to moderate dyslexic. I am also worried that medicine would make me worse off with confusion or losing my DL.
+ariel on health My nocturnal sleep seizures went along with sleep terrors during my childhood. Eyes wide open, screaming, walking through every room in the house. These terrors happened from 8 to 15. I sleep talk as an adult. "One time I sat up, patted the bed, and asked where is my cheese burger? (said few cuss words) which I am not know to cuss. Is nocturnal epilepsy different for everyone? How often does seizures and dyslexic are inherited into families? I've read that seizures eventually cause dyslexia, but I am worried for my daughter. I guess somebody in my husband's family has the nocturnal epilepsy (he also stutters. My father is severely dyslexic. Sister talks in her sleep and my brother use to sleep walk and is minor to moderate dyslexic. I am also worried that medicine would make me worse off with confusion or losing my DL.
Rob Melendez Well, a seizure can be very short like that. If you have no other history of seizures it’s hard to know. I feel like a seizure is unique for me because it is totally unrelated to anything that is going on. It starts suddenly and jolts me. I am not necessarily feeling stressed or worried at the time that the fear comes. Now that my seizures are more controlled, they are much milder and not as hard to deal with. They still happen suddenly and have a certain odd feeling (I can only describe it as the feeling I know is a seizure bc it is not like anything I have ever experienced otherwise). Hope that helps. Wish you the best.
Rob Melendez For most people, a panic attack happens based on something going on that is stressful or scary. They will be somewhere and start to feel anxious and then it builds up, sometimes very quickly. I’ve never heard of a panic attack that stopped suddenly on its own. The person has to do things to calm themselves down, meds, change location, deep breathing, get support. Sometimes that can go on for at least minutes and then it will take hours usually to get to feeling calm again. So no, I don’t think panic attacks are like that.
I was driving when this happened and I was thinking what in the world is this random feeling of fear so intense out of nowhere I got scared and was about to pull over but as soon as I got to the exit of the free way it was gonna and left me a little anxious thinking what that was
Rob Melendez I totally understand feeling anxious about it. Having something like that come out of the blue is really weird. Before I knew that what I was experiencing was seizures, it scared and confused me so much. Like I said, I can’t tell whether it was one or not. But being attentive to any other things that happen suddenly like that and if it continues and is a problem, look into it.
When I was in seventh grade (I'm a junior in high school now), I had really bad déjà vu episodes where I'd remember what I thought was a dream, maybe a recurring one. It would play through my head, and this feeling of dread would come over me. I would pray and pray for it to stop while it was happening, I got so sick to my stomach, and then as soon as it started, it was over. I couldn't remember what the "dream" was about or what happened in it. They happened a lot, every few days, or every couple of weeks. But one day, in school, it happened twice, and then I started keeping count. It happened at least twenty times by the end of the day. I harassed my parents about it, and they didn't understand so they just thought I was acting out. I was terrified. I typed in my symptoms into google one day, and with every thing I saw, I assumed it was because of my migraines. But I told my doctor and they said they had no idea what I was talking about. After that day, they started happening less. The last one that happened was in eighth grade, and I thought I was okay. Well, every year since, maybe once or twice a year, I get the feeling I get before the déjà vu happened. The déjà vu never happens, but I still think I should be concerned. I have struggled so much with depression since I was younger, but right now anxiety is my biggest issue. It's crippling and it's hindering my ability to work and get a good job. I'm afraid whatever this is may be lying dormant, and it's not over yet. I still go to a pediatrician since I'm a minor. Who should I see, and what do I say? I don't ever like self-diagnosing, but is it wrong to think I may have TLE?
Keep harassing your doctor. Mine took over a year for th m to diagnose. I had to go to a neurologist about a 2 months ago and that’s when I found out it’s Partial Complex seizures. Don’t give up. It took me a long time!!! 1.5 years later....
wow this is so crazy I experience the SAME EXACT THING. especially with the “dreams”. I’ve had this since about 2012 and it’s taken me so long to be able to describe the sensation. I always sound like I’m totally crazy when I try to explain it to my friends and family, you have no idea how relieved I am to see that I’m not alone.
my exact experience!! the “dream” part is soooo real it’s like a dream you’ve had but forgot about and then you get that feeling and totally forget what it was
I’m just recently diagnosed, and to be honest you have been more help than any of the doctors in explaining things to me. Keep doing what you do.
Thanks for telling me. 💜 I wish you the best
12:48 12:48 12:48 12:48 My daughter is possibly looking into having left temporal epileptic seizures.
Her clinical psychologist is concerned due to what she tries to best explain what happens when she feels weird.
She states, I feel frozen and I know something is off but don't understand what's happening "
I myself as her mother has noticed that she stares at random times. There was an incident where her and I were watching a show... we were having a conversation and then she stopped talking for maybe 30 to 40 secs.. I witnessed her on the couch saying she was going to kill the cat. This is not her normal behavior.
The cat was scratching at a picture on the wall.
I asked her if she remembers what we were watching before this happened.
She stated, No I have no clue of what we were watching.
Her knee surgeon has mentioned her memory is quite poor.
Her last episode she did forget her night meds which are used for mood stability but are anti seizure meds.
She started attending a partial day program for her mood stability and emotion regulation.
On day three she woke up and she was more tired then usual. She was on her me menstrual cycle.
In the morning she said she had a panic attack. In the afternoon she explained she felt frozen, felt like she was there and listening but has no memory of even driving to group that day or even what the group discussed that day. She states she wants to say something but verbally can't. Afterwards she left group and had been yelling and screaming and crying and thrashing around and was dismissed from the program.
Before she gets angry and out of control her thinking is not clear.
She has done things to the point that she has no memory of cutting her hand and face on a glass picture in my home.
When she is in this raging fit... she states, " I can't see anything, hear anything or feel anything.
After the episodes have subsided she is so exhausted that there was a time her cousin who lives in Florida told her recently that she slept in the front yard for two hours. Has a huge headache but doesn't understand why or what triggers these.
Today she explained that she is noticing more often then not while driving that she goes into another world for maybe 20 secs and then she realizes she's driving.
Her memory has changed within the last 5 years. Many events or places or people that she can't remember. Another thing she explains is that she feels like time lapses. Or everything just stops as if she is going through the motions.
These episodes do pop up more around her menstrual cycle as we have been watching and noting these events.
She does hold her head with both hands on each side of her head while yelling and screaming and a cool rag sometimes helps over her head and eyes. Her head is physically very hot to the touch that is why I get a cold rag and then it can snap her out if it.
Any idea or light you could shine in order to help her before she sees the neurologist at the end of this month?
I have temporal lobe epilepsy too. I needed to thank you for helping me.
Thank you for posting this. I was diagnosed about 15 years ago (can’t remember exactly imagine that), with having focal seizures. I’ve been medicated since but haven’t followed up with the neurologist since that time. Recently I’ve had a lot of these symptoms which have led me to research it more. I have the deja vu and physic like experiences often. I constantly smell the scent of vinegar and smoke type smells. I have nights where I will wake up because my head is vibrating, along with it I have an intense euphoric feeling as if my brain is being massaged. Sometimes my wife will feel it before I wake up and she gets scared and has to wake me up. Sometimes I hear things when no one else around, usually whistling or faint music. Random words will pop into my head out of nowhere. Random times throughout the day I’ll feel pressure in my head along with a euphoric feeling. I experience what I guess is best described as vertigo. I’m having a lot of joint problems now. Primarily in my neck at the base of my head. Worst of all my concentration and memory has gone to crap causing me a great amount of frustration. Recently I’ve been finding it very difficult to hold a conversation. I can’t seem to find the words to articulate my thoughts. It’s like I know they are in there somewhere but I can’t dig them up and spit them out. Often when asked simple questions, I don’t have the answers. I stand there feeling like an idiot and It’s starting to become quite embarrassing. For some reason writing and typing is much easier. My wife has even said in the past that it’s odd that I’m able to express myself better in text then in person. For a long time I’ve been blowing off these individual symptoms but they seem to be piling up more and more which has caused me to start doing some research and I’ve made an appointment with a neurologist. I guess I had thought it’s just how I was but I’m realizing that it’s not right and I need to get checked out before another symptom pops up. I’m scared to death to go for fear of the outcome because I have a family to support. As I’m typing this I asked my wife if she has lit any candles because the scent of candle is overwhelming yet she hasn’t and she doesn’t smell anything. Thanks again for sharing these videos.
Benjamin Hawkins Wow, that’s a lot happening. It sounds very upsetting. It is very good you’re going to see a neurologist. I’m not sure if you are still on Epilepsy meds, but it’s really important to get safety labs and monitor specific bloodwork because Epilepsy meds can be strong. Also, it’s important to keep trying different meds if they don’t control all your seizures or are not tolerable due to side effects. I went through 12, and now have a almost no seizures, only a few mild focal/partial a month. I had some meds that only stopped my tonic clonic seizures. That’s why I am on 2 now. But lots made me tired, or gave me headaches. One caused amnesia! Haha! I know it doesn’t sound fun, but the process is so worth it. My quality of life is so much better.
I’m not sure if you’re afraid of going to the neurologist because of what you might find out, or that you might have to stop driving or something. Really, it’s best to get all the info because then you can get the best treatment. Also, I have gone periods where I couldn’t drive due to med changes etc, but once you’re on the new med and it works, you can go back to driving. I encourage you to remember that getting things figured out and meds right will ultimately be more supportive of your family. Your health is important, and it might take some time etc, but you can take care of them much better long term if you can take care of your health. Both mentally and physically. This stuff takes a toll in so many ways. Be sure to talk to your doc or a psych if you feel depressed too. Epilepsy, especially TLE can often increase depression a lot. I genuinely wish you the best! If you have any questions, let me know. I really believe it will get better if you get answers and treatment. Remember that your experience is real, and if a doc is not helpful, find a different one. I’ve had very good and very bad neurologists. Some say it’s all psych or don’t listen well. If you don’t feel heard, you are the authority, not them. No one who has never had a seizure will really know what it’s like, so describing them is kind of a crap shoot! 👍🏼😁
Thank you for the encouragement. Sorry for taking so long to respond but ironically I forgot, lol. You’re right, I hadn’t gone for fear of what they would say. I finally got an appointment but it’s a few weeks out. This week was so bad I just went to the hospital. They did an mri to rule out tumors and then sent me to another hospital to have an eeg. I’m currently here waiting for that now. The drs and nurses have been very helpful. They said “your not crazy, there is something wrong.” Lol. They are saying they think it is either temporal lobe epilepsy or mesial frontal. I’ve been on lamictal for about 20 yrs and they’re saying if it is mesial frontal that lamictal is the wrong treatment. I’m just happy to be making headway at least. Thanks again so much.
Benjamin Hawkins I’m so glad you’re getting some validation and information. I know that’s a crappy way for it to happen, but I’m glad you’re getting things figured out. Even if LAMICTAL works for some people with TLE, it’s not the best for everyone. I hope you get some good info and up your quality of life. If you like, give me an update sometime. Wishing you the best!
I cannot tell you how wonderful it is to have found your channel. I'm a 69 year old male geezer, a songwriter and musician, who obviously has been having TLE simple partial seizures since I was about 20 years old. No doctor or shrink has ever even mentioned this possibility. The convictions of doom and dread, death crawling up my fingers, terrible deja vu, a feeling of something bubbling up from below, strange hallucinations, a loss of recent memory, rumbling voices that I can't quite hear, the feeling that all is more real than reality, a smell/taste like ozone or diesel exhaust... I've had it all. The one facet I have that I don't think I've seen described is a horrible feeling of a subtext. It's just like when you are first waking up and know you have had a powerful dream but can't quite remember it, but have the conviction that it is still going on, just below the surface, and that it's real. It's like that, coupled with the dread that if you ever did tune into it, you wouldn't be able to tune OUT of it. It's like a subtext. There is so much more; I feel like I could write a book about this, it is so complex. It has tinted my whole adult life. I haven't had a bad life, but wonder how many decisions I have made based on a dread of these attacks (I've even given it a name; I call it Zondo, which is an anagram for "NoDoz.") Currently I'm on a tiny dose of lorazepam (.5mg once a day) and it seems to be helping to keep Zondo at bay somewhat. Finding your channel has been a major enlightenment for me; there is no way I can thank you enough for explaining what fifty years of shrinks and doctors couldn't begin to fathom. Thank you Ariel.
+Agnes Onus I really appreciate what you said, I understand how hard it is to live with this. I think I know what you are saying about a subtext. My fear was that I was always about to do something wrong. Strange feeling like dread but continuing. If you can get to an epileptologist or at least a good neurologist, you may be able to get on the right meds to stop the seizures. I used to take Benzo's such as Lorazepam and clonazepam, and they helped stop the seizures. Now, I am on two other epilepsy meds that almost completely control my siezures. Do check it out with doctors if you want to try meds. My quality of life is way higher, and my level of fear and anxiety has gone down alot.Blessings
+ariel on health thank you for this kind response. "Always about to do something wrong" is an interesting component. I think I know what you mean by this. As I mentioned, I think this is such a complex affliction that it's hard to pin down all its facets. I certainly am familiar with "the strange feeling like dread but continuing." Sincere thanks, once again, for your extremely helpful and thoughtful observations, and for taking the time to reply.
:)
I'm 15 and I play a lot of music and I feel like many of my 'episodes' are almost triggered by the music. Obviously I'm not a medical professional but it's hard to ignore that intuition. I can't imagine living without music and I would hate to have to get on medication so it's a tough situation to escape. More recently, though, I have begun to be a bit complacent with them, I have lost the fear factor a few months ago. It's almost soothing in a weird way. I was wondering if you have ever experienced anything like this and how you are able to deal with it, if you have.
I have these symptoms too but I am anyways able to talk etc so no one believes me, except the doctor, & he assumes I pass out & don't realise!! Neither is right, I am litterally just a but weird sometimes & have funny thoughts, & it ruins all of my jobs & my life.
I’m undiagnosed but listening to you speak about partial seizures I’m like wow…. I’ve been dealing with this my whole life without knowing it. In the past 2 years I’ve had partial seizures that last a couple of seconds. I didn’t know what it was before and I thought I was going crazy. Growing up and even now I’ve always had mood swings, bad sleep, vertigo, disassociation sometimes at seemingly random moments. Until recently now that I’ve experienced focal awareness seizures I just realized that something more was going on. Thank you for your videos. I’m hoping to get diagnosed soon, and listening to your story puts me at ease because I’ve been experiencing the same things!
I was diagnosed with this almost ten years ago. I've been on lamictal. I'm so grateful for my neurologist. I wish I had discovered this earlier in life, because I suffered through my childhood (only the anxiety was present then) and we couldn't figure out what I had. Interesting and relieving to see that there are others going through the same thing.
+BeccaRaptor94 I totally understand, I spent about 14 years having SP seizures before they were diagnosed. I was having TC seizures, but I didn't know that the other experiences were seizures. This led to a lot of confusion for me, I just didn't tell anyone bc I thought I must be crazy. I am so glad you got yours figured out. Be well.
Thanks for making videos
:)
All I need now is a doctor who is willing to listen and take their time with me instead of rushing me out the door
Tee Cee Yeah, I know how that is. You really do need to find someone who will hear out your experiences. They need to believe your descriptions to really help you. Best of luck!
I cannot thank you enough for explaining how I’ve been feeling. I haven’t been able to voice it to people around me without someone just brushing it off.. I had another one today, and have been getting them more often over the last year. I had another one today and finally broke down and have started to look more into it.. this video helped a lot!! 💛
I am so genuinely glad it helped. Keep learning about it, Doctors will dismiss you over and over. I think one of the reasons is that it’s so difficult to describe.
Here is a video I did recently about describing seizures and how hard that is
th-cam.com/video/z5F9bBYfqEQ/w-d-xo.html
I never forget, your experience is real. Here’s a video I talked about my experience with neurologist and temporal lobe epilepsy
th-cam.com/video/_eEIvO9YO_U/w-d-xo.html
Thank you from NZ. Diagnosed at age 10, still being treated at age 41. You raised so many issues that I beat myself up about for a very long time. An excellent resource for everyone xxx
+Lee Finch Thanks for your comment. I really understand being hard on yourself. Fortunately, when you know more about it, it's possible to be kinder to yourself. I hope you can.
Ariel, you have changed my life! Thank you so much for this video series!
I have been experiencing just what you describe for 30 years. After a very bad series of what I now know are seizures, I lost most of my memory and had to start life anew. I kept my experiences to myself for all my life, mistaking them to be paranormal occurrences and not wanting them to impact my reputation. The de-ja-vu, missing time, and unexplained injuries, and altered states are so easy to mistake as anything but Epilepsy (especially if you google the symptoms!!!)
It was when I stumbled upon this video of yours in March that I finally found the answers I had been seeking for 3 decades. I am now awaiting my appointment with my new Epileptologist to confirm that my seizures begin in the Temporal Lobe. It is a long wait - until August!! Once it is confirmed I hope to share about my seizures too. You've shown me how helpful it can be to speak about the details of what one experiences during a seizure. Thank you, again, Ariel!
Maya's Dream Wow, thank you so much! I really hoped that this channel would help someone like me to get their life back. I’m so glad you let me know. Sending you loads of good thoughts on this journey! I hope you can get things stable and improve your quality of life. You make this whole experience of sharing so worth it! Let me know how it goes if you want. Remember, your experience is real! I had one Epilepsy doc who was really terrible, so if you come across that, I say just move on and trust that you know your body and can figure out what you need. 😁 Best wishes
@@arielonhealth 💛 Thank you SO SO much! I will keep you posted! I GREATLY appreciate your advice and support. 💛
Thank-you for your channel!
The videos and experiences you've shared have been really comforting, as I also have temporal lobe epilepsy. It has helped me a lot over the past year to talk about TLE and after checking out your channel, I feel better knowing I'm not alone in my own experiences with seizures. You're great in describing what epilepsy is like for you, and not only specifically seizures, so just thank you. The clips you've posted reminds me how legitimate and real the impact epilepsy can have on one's life!
Knowledge is power!! Sharing these things gives hope for happiness and good health so thank you for that too. Look forward to anything else you may share! Take care!
+Kat Falkenberg Thank you so much for saying that! Honestly, that is all I really want to do. Ariel
I used to feel so alone. I still don't like talking to much about it but it feels good to be informed and to feel somehow accompanied in this. Thank you.
Gerardo Barrera I felt so alone for so long, my goal here has been to help other people feel some connection, so I really appreciate you telling me it makes a difference. 😁
@@arielonhealth It totally did, thanks a lot. Now I'm currently struggling on being able to talk about it because until know just a few people know about it and I think even fewer understand what is it about.
Gerardo Barrera I didn’t tell anyone except close friends and family for 15 years. So, it was hard at first. Really worried about what people thought, felt a lot of shame for years. It’s really sad that we feel shame for our illness because of stigma and ignorance. Once I got tired of feeling like so many people misunderstood Epilepsy, and I started learning about it, then I decided to educate people and that made it easier. I wrote essays in college, and slowly started educating family and friends so I could share my experience. I felt I had to give them enough information so they would get it was a real disease and thing I experience. Especially the partial/focal seizures. They can sound bizarre so I liked to tell people more when I told them I had them. With the tonic clonic/grand mal seizures, I think people feel shame because when people see a seizure, they are scared. It’s not our fault. We didn’t do anything wrong. But the discomfort with how awful and scary it is to people, makes them uncomfortable to talk about it often. I remember becoming part of an Epilepsy meetup, I went to an Epilepsy Foundation conference, and when I talked to more people with Epilepsy, I realized I am not weird, or wrong somehow. That really helped me.
I found a connection between Ischemic stokes and temporal lobe seizures. When I was younger I may have been having strokes and not known it until my 30's, and since then these have intencified, and now include two Ischemic strokes turning into 2 mild seizures. My research into this began with a study I did about understanding my Hypergraphia.
Thank you so much for posting these videos. I have it too and it's always been difficult to find other people that are able to understand it let alone diagnose it.
Ryan Keating I’m so glad to be able to share this and hopefully more and more people will know they’re not alone
@@arielonhealth I spent years thinking no one understood what was going on. Thanks again! And I love all the LGBT stuff on your wall!
Hi Ariel,
Ive had partial seizures since 2011, and its so frustrating. Thanks so much for the helpful info.
+Lisa Scott Thank you so much for saying that.
+ariel on health youre welcome ariel. I love your videos.
I'm so grateful to you for sharing your experience and knowledge on tle. I am just beginning the process of being "tested" for this- have an eeg and mri with contrast scheduled for a month or so from now! I've been doing lots of research to calm my nerves :) your videos have been a great resource!
Thank you so much!
I have watched your videos over and over cause I have epilepsy. I relate to you so much. I just keep watching it because I feel like I’m not alone. Thank you so much. I have thought I was crazy for years. I typically have focal seizures all day long. On and off. Like. A lot. And I never leave my house because I’m scared to death to walk outside. The light affects me. Makes me feel sick. Mine has gotten so bad I don’t remember my childhood at all. I’ve been having uncontrolled seizures for over ten years. I’m still praying something helps. I feel like I’m dying.
LINDSAY COUSINS that sounds so horrible! Wow, I’m sorry you are having them all day long. I was so petrified when I didn’t know what they were, as I’m sure you were too. I’m so glad my videos have been able to help you not feel so alone. That was literally my goal with this channel. I felt so alone, and thought I was crazy. Feel free to ask me questions. I hope you can get some help. If you have access to a neurologist or even a PCP can prescribe some seizure meds. Have you tried any?
I got so afraid of my focal seizures that I couldn’t leave the house eventually too. It’s such a hard experience. It took trying 12 meds to get on a combination that basically stops all my seizures. I got a dog I trained as a service dog for when I had a focal seizure, and then I felt more comfortable going out. So my QOL is much better. I hope this for you too! 💜
THANK YOU SO MUCH for saying the words I can't find to say and explain how I feel....!
Chloe Weeks I’m so glad you find it helpful. I didn’t know how to describe my seizures either! I hope to someday put together a “seizure dictionary” with patient descriptions. Then doctors could have you look at it and you can say-
That’s it! It’s so strange, because there is nothing quite like a seizure in the rest of my life to compare it to for someone who has never had one.
thanks for this video..this just confirmed that I have been having simple partial seizures for at least 10 years
+mani00 I am so glad I could help!!! I had so many for 14 years or so before I knew what they were. I am so glad to help people figure out what SP seizures are. They are very difficult and confusing. Sometimes, really hard to describe to people and doctors.
Yes! I just recently increased my keppra from 500 mg to 750 mg cuz I had another generalized secondary seizure :( but i noticed that i still get SP seizures right before/on the day of or a day after ovulation and my period but SUBSTANTIALLY decreased from what i had when i wasnt on keppra and the 500mgs . So i dont know if I should tell my doctor to increase my dosage again to 1000mg or just start taking progesterone BC because I have heard that works great. Just dont know what I would do when I want kids a few yrs down the road. I am so confused :(
mani00 I cant tell you reccomendations, however, I use Keppra at 1000 mg a day and Progesterone. Makes a big difference. I am also on 600 mg Lamictal a day. I also worry about what I will do about kids, I guess just taking it one day at a time, Looking for support online for mothers to be, and talking to your doc if you are really close to having kids seem like a good idea. Best to you!
+ariel on health oh okay do you take progesterone everyday? like the mini-pills/birth control or is it something more specific to epilepsy??
I take bio identical progesterone increasing throughout my cycle, because the time when I have most seizures is toward the end right before my period. Talk to your primary care doc. My neuro wouldn't prescribe it for me bc she said it helped but it was not in "her field". So, my gyno doc does. I tried lots of birth control and that can help as well.
Thank you so much for this video! It has definitely confirmed a lot of what I have suspected has been going on with me. I just learned about TLE about a month ago and have been living with what I imagine it is (simply because I have yet to be diagnosed), and I can truly relate to the feeling of not trusting anyone to talk about the experience for fear of being branded with a psychotic disorder. Thank you for all of the information and support! You just got a new subscriber :) 💪🏻✨🎉
Awesome, so glad to help!
+ariel on health god only cures and help ,god is the only helper god a saver for who follows him he follows the right road he follows the right path and whoever follows his word is save, doctors told me that i have a temporal lobe epilepsy, i have seizures but i have communicated with devils and god prophets , i believe that i have supernatural power from god himself , because an epileptic person cant predict the future , most doctors exploiters and liars , god will send so many to the hell,
+ariel on health doctors most of them are exploiters , i dont rely on them they dont rely on me and i am not relying on doctors and we dont rely on them, just believe in god not false science and you all are cured ,god who is refused by the doctors ,they will go to the hell for desecrating the word if god
Thank you sooo much for posting this! I am as of yet undiagnosed but have had years of "attacks" where i fall on the floor, vomit, have complete incontinence, head splitting headache, only partial loss of lucidity but i can only see straight in front of me and seems far far away, hum in ears, muscle tightness, unbelievable profuse sweating and shaking(not grand mal ish tho) and rapid blood pressure crash. I've been having these for 8 years but they are getting worse now. more frequent. So far I'm told "mystery, panic attacks, migraine, abnormal migraine phenomena, orthostatic hypotension, and mostly vasovagal syncope from my village doc. They are currrently doing thyroid biopsy on me(had attack right on the table when done), EEG testing and told me my hypothalmus doesn't seem to be getting the right messages from my thyroid. my doc hasn't seen me have on yet so i think he keeps thinking it's a psychogenic panic/faint of some description. We've told him that I've had several severe concussions(the last one was particularly bad 15 years ago and has affected me altho in many ways i have healed very well). I know...long story(yawn) but so frustrating. Unfortunately my SO has just been putting up with these and cleaning up the terrible messes when they occur and getting me the salt water to raise my blood pressure but i , like you used to be, just don't feel like going out for fear of having one in public If someone calls an ambulance(i'm sure they would cuz it's Canada and most Canadians(and others) assume they(and many other medical stuffs/services) are free but it's not all free. it's $300 each time(just ambulance) and there's no way we can afford that. i've had that happen before(well meaning but unfortunately unknowing and obviously more healthy/better coverage than i have folks)... anyway...any ideas anyone and/or ariel? Sorry if i sound like a crank...just frustrated but grateful for any others who would like to share their similar experiences or knowledge :)
Mad-Village Muller that sounds really intense. Hard to deal with too. I hope you get some good answers. I know it’s hard being undiagnosed. Wish you the best.
Thanks for the personal reply Ariel! I will watch more of your videos to educate myself about epilepsy in case it turns out to be that. I wish you a super festive season, seizure free(we can hope), safe, calm and yummy! Happy Festive Season, Merry Christmas and Winter warmth to all your subscribers here too! :)
Great video filled with lots of information. Thanks !
So glad it was helpful!
Thanks Ariel.
You are so welcome!
Thanks for the helpful video
+Thomas Ludlow Thanks for saying that, I really want to reach people and share. :)
Great video for people looking for answers and information. I had a benign glioma tumour removed from my right temporal lobe when I was 16. Been having seizures since I was 8. Now I get simple partial seizures, never get the complex ones, but they sometimes turn into the full generalised ones.
Do you ever feel ecstatic afterwards? I do sometimes, never get any fear though, except the natural hope that a simple partial doesn't spread while it's occuring.
john higgins Thanks, glad it’s helpful. I don’t feel good after any type of seizure. I feel confused, get a headache, exhausted, upset. My focal seizures used to turn into tonic clonic but now they don’t. I feel much less stressed. Hope things go well.
Is suddenly tasting blood in your mouth applicable? Because I'm struggling to find what type of epilepsy i have. My neurologist doesn't give me simple answers i can understand because i have trouble understanding sometimes. I'm really helpless rn
Thank you for this video!
You are so welcome! Thanks for watching!
Hey Ariel, why didn't you include Jamais Vu in the list of TLE symptoms? I have TLE and let me tell ya, while I do occasionally have spells of intense Deja Vu, I'd have to say I have had more experiences involving horrendously overwhelming Jamais Vu. Scary as fuck too. Anyway, thanks for the videos. You're an awesome person. ;)
Fugg Guegol I talk about Jamais Vu in a video that I am editing describing more of my seizures. I have only had that happen intensely once and it was scary. I didn’t know it was a seizure at the time, so I was totally freaked out. I’m glad you mentioned it. I’ll try to put that up soon.
im 41 years old and have had temperal lobe epilepsy since the age of 11. i have had every kind of seizure going from shaking to staring into space with funny smells stars flashing in my eyes and end up with an almighty headache and feeling really tired.
+Lee Thilwind I wish you the best!
New subbie!!!
your videos are so so helpful and inspiring thank you for helping me understand! I have been getting so tests done for possible complex/partial seizures and have a few questions.. I experiance a lot of what you are saying and when I leave my house I often experiance that things aren't real like a depresonalisation feeling and my doctors are trying to work out wiether I have borderline personality as well as seizure activity, so very tricky. a lot of my experiences are hard to decide wither it was a simple seizure or not however I have a lot of experiences where I have that doom feeling and depersonalisation and then all of a sudden I will be listening to a conversation or whatever but what was going on a few minutes after that strange feeling I have no memory of so I know something has happened but nobody seen anything.. I guess I'm doubting that I'm feeling these things because nobody is noticing my blank moments etc.. I have had a sleep deprived eeg which showed abormalaties but is it possible for people not to see what's going on durinng my 'seizure' moments.. I wish there was a way I could explain to family that this is real and for them to know when it's happening.. thanks again for posting your videos it's nice to know others experiance this..
Biz, I understand how hard it is to have people doubt you. Just keep telling the truth of what you experience, whether or not others see it. That's very important because only you know what it is like, whatever the diagnosis is. look at the videos with examples of seizures, and about how doctors doubt many people. I used to be scared to tell anyone what I experienced bc I was worried they would think it was only a psych problem, when it is actually seizures or both. just remember, what you are experiencing is real for you. 😃
Sorry, I am on my sons computer. I am Joseph Christopher Dodge on Facebook, if you ever need, to ask me a question. My wife and I share my Facebook page. You are by far the most help that I have ever had. .... Besides kepra and depakote.
thank you so much for saying that, it made my day!
I had Temporal lobe epilepsy, the medications works very well with me, but I still thinking about surgery to stop using the medications. I need advice what do you think??
Ahmed Kamal Surgery is a very personal decision. It really depends on how much the surgery would help versus the complications. I understand wanting to get off medication though. I don’t like it but I am so glad not to have many seizures though. Hope you feel out what is best for you. Wish you the best.
do you have an auditory and visual experiential hallucinations (like a flashes of images from your past or a voices) ?
I used to have things like that but I don’t anymore. It’s been many years.
@@arielonhealth what med. did you take for the symptoms ?
Basically I have been able to continue to take my two epilepsy meds and work on getting my hormones balanced which helps to prevent seizures. So now I have almost none. Since it was one of the symptoms of my seizures, stopping seizures was the key.
@@arielonhealth how to make sure it is indeed TLE ? I did EEG once and it was normal.
@@OS-bs9ky I'm doing a live stream tonight at 9pm if you are interested. If you are subscribed, you will probably get a notification. But only if you have the bell on.
I'm just gonna be doing my nails and chatting and people can write in the chat and talk about stuff or answer questions or just hang out. I would be happy to discuss this later if you’re able to come. It’s the first one but it’s helpful for me because I enjoy your videos and I don’t like writing. Also other people might have similar questions. I hope you have a good night
i have temporal lobe, right i believe, only a dozen grand mal (tonic clonics) and suffer from simple partials. Gotta know your triggers.
+Jonny Bravo thanks for doing this it was really well presented.
+Jonny Bravo
Thanks Jonny, I wish you the best
I've had MS for 17 years. Started having Temporal Lobe Seizures for the last 5 years. Not sure if they are related or not. My neurologist sent me to have an EEG or EKG, (can't remember), Yay for memory loss. Anyway, it turned up nothing. Basically they just tried to induce a seizure with noise and flashing lights with my head hooked up to a ton of wires. When they finished, the doctor tells me, "well, the results don't show anything abnormal. You don't want to be diagnosed with seizures anyway, they take away your driving privileges." Wow. Starting to think I should get a second opinion.
Did you ever see another neurologist? A person can have an EEG that does not show seizure activity if they are not actually having a seizure. Some people have seizure activity that shows up all the time. I hate when doctors say nothing is wrong when something is. Even if they don't know what. If you are having seizures, the best thing to do is treat them. The doc knows that when you treat them you can go back to driving. It's not necessarily a forever thing. I didn't want to lose my license so I didn't get help, and honestly it was a living hell.
Look into food and epilepsy. There may be a link between "leaky gut" and your epilepsy. Seems to help mine if I stay away from cheese. There is a veterinarian that works with dogs that have epilepsy that has had astonunding results by removing the glution, casein, Soy and corn from there diets. He goes by Dogtor J. Hope this helps.
Troy
+Troy Bass Thanks, I am on a gluten free, sweetener free, additive free diet for my lyme disease, which helps alot with that. I hope it helps with seizures.
thank you very helpful.
I'm so glad!
I have a query about epilepsy, does left temporal lobe get perfectly healed, mean there is no more radiation or any sort of treatment??
Hi. Sorry, I don't understand the question.
ok here it is, what are the chances that anaplastic oligodendroglioma grade 2 does not grows back after surgery and radiations i.e. Gama Knife...
+Malik Saad I don't know.
Hello. I have left mesial temporal epilepsy. I had a temporal lobectomy about 2 months ago. For now, I'm a little better than before. if you have a chance of surgery, try this.
uhomachinky I’m so glad to hear it went well. I hope you continue to do better. Fortunately, my seizures are almost completely controlled with meds now.
When i get deja vu i get everything in so much detail from the exact lighting on the room to the amount of skin o have exposed it comes in burst but i would always just shrug it off intill it would happen then i would start to freak out not sure if this is something i have or not i also see the auras all the time everywhere i go i used to think it was because i had bad eyesight but i relized not everyone saw what i saw which is basicly like a imprint of light but with more colors
uwu I found the deja vu to be so intense that it caused me a lot of anxiety. It was so vivid, like you said. Also, it just felt trippy to have it really feel like time was happening over again. I didn’t know they were seizures for 14 years. Then I read a patient description that said it seemed “more real than real life.” That was it, the deja vu other people say they have must just be a mild odd experience. But when I have deja vu, it’s a sudden intense experience. I didn’t realize we weren’t talking about the same thing, but I am so grateful I know they are seizures now. 12 meds later, and I haven’t had a deja vu in a long time. Mild sensory seizure every so often.
Hey great video, I'v been getting worried recently as when I was 17 (im now 27) I was overdosed by the hospital and I had 20 grand mal seizures in the space of 4 hours which was caused by the overdose. Ever since then I have had quite a lot of mental health problems eg anger, hallucinations (smelling, tasting and hearing things) like I would suddenly say I can taste swimming pools and it makes sense in my head and my friends have said I go vacant and stare, and then i can't remember anything for those 30-40 seconds my speech goes a little muddled then im fine again. The last few weeks I've been getting this déjà vu feeling and then just not feeling right but i can't explain why I don't feel right and then after a few minutes it passes. I'm seeing my GP next week and maybe i should discuss this with him, we have tried several times in the past but they put it down to being mentally ill when im worried there is something causing this. Hope you are well, and thank you for sharing the infomation.
+Taylor Smith I hope that things went well with your GP appt. I know that many people say this is just a mental health thing. I am aware that both aspects are probably at play here. Many people with seizures have mental health disorders as well, but the seizures may be an important part.
I am about to change Dr. but I am not sure what to do the Dr. I have now does not think I have seizure s so not treating me and I know something is wrong. I have been having problems for about 7 years and all they want to say is that I am having sudo seizures but I can sometimes feel them before and other times I can't. I have a real hard time talking after I have had one
+Sara Hunt I had the same difficulty. My doc diagnosed me with Epilepsy, then later changed his mind bc my EEG was normal. I was so frustrated, I changed doctors also. I am so glad, I have pretty good control now, and someone who listens and believes me. That's especially important for TLE. I did a video on dr. who won't believe you.
+Sara Hunt th-cam.com/video/0iUAox7JVvs/w-d-xo.html
Here is the other video. :)
I get deja by ever few seconds sometimes in very rapid secession. no clue what going on with me and it's been hard looking for a cause or even articles on the matter. each hit of deja by lasts just a second but happen so much it's like a jolt in my brain. it's not like what I would call a normal deja by where is last awhile and fades with you trying to figure out why that thing was familiar but rather a burst of the feeling of deja by that can be almost audible and my eyes almost twitch. I haven't the slightest clue what going on with me but it's been this way for a couple months. I had a bad neck and back injury in Afghanistan but I'm not sure if anything like that could bring this on
+Tj Finley Yes definitely. Nervous system disorders can happen with spinal injuries. I feel jolted as well. Had a seizure yesterday and almost jumped. It was auditory, where the sound goes muffled in one ear and I hear a ringing sound. Same feeling in my head as when I have deja vu. They can all be siezures. Really, get checked out with a neurologist. There is help for this.
+ariel on health this is exactly what I'm going through. I was just diagnosed with temporal lobe epilepsy. my minor seizures are usually triggered by boits of severely heavy deja vu that cause loss of hearing and tunnel vision. I've thought that was normal my whole life untill I collapsed from it recently. seems like it happens mostly when I'm under extreme stress or having bouts of anxiety.
+Tj Finley LITERALLY EXACTLY WHAT HAPPENS TO ME, DUDE! (Well, not really anymore, because I've been on lamictal for almost 10 years.) You are the first person that I've seen describe it exactly as I do, and it's a relief to meet others like me. PS. Love your R2-D2 profile pic!
+lain4231 Most types of stress can be huge triggers for seizures. Glad you got stuff figured out with a doc.
Thanks. Do you have a driver's license?
Hey I think I see an eighth of an inch on the top left of the bulletin board that isn't used yet, just so you know. (lol)
twinstar9 Hi, I just saw this. Not that you still need an answer to the question but I’ll say anyway. Yes, I have my license. My focal/partial seizures are almost under condition, very mild, doc and I decided it was safe. Also, haven’t had a tonic clonic seizure in 15 years. However, I didn’t have my license for 7 years due to seizures. That was so hard. I hope things are going well.
I get the anxiety, smell,and deja vu , I'm so scared , I don't want it to spread so I get full blown shaking seizures , and I'm deff not getting surgery
Lucid memories Hi, many people only have focal/partial seizures. Getting checked out for seizures is helpful so that you can rest assured they don’t turn into tonic clonic seizures. Surgery is actually quite uncommon for Epilepsy. There has to be a really good reason, which is usually that someone is med resistant (after trying everything) and their seizures are super intense or endangering them. I’m on meds and they’ve almost completely stopped. I encourage learning more about it. You may have seizures, you may have something else. It’s helpful to find an answer, but hopefully you can remember that your experience is real and whatever is happening affects you. Hope you do well!
@@arielonhealth thanks this helped calm anxiety about surgery , I've always thought I was going crazy until I looked up why I had these symptoms
is there any cure for mesial temporal sclerosis
Suhani Tilak I really don’t know. Best to ask a neurologist.
Anyone with neocortical temporal lobe epilepsy?
also get random and sudden bouts of euphoria and diagnosed with depression and severe anxiety
+Tj Finley The sudden feeling of euphoria is also a seizure described by some people. I typically have ones with fear and sudden anxiety and dread. I also have depression and anxiety, and you can have all of them. They are all affected by each other as well. Check out the video on epilepsy and depression. Wishing you the best.
Thank you for the info
+Kim Schutzenhofer I used to feel like I was going crazy for sure with all the strange partial seizures I had.
I've had this since I could remember. It got so bad to the point where going to school was so impossible I had to drop out senior year of school and get a job. It really screws everything up, but I did start smoking marijuana and I honestly haven't had a single seizure since smoking everyday. It doesn't make you normal again, but I definitely didn't have involuntary trips all the time! that's why medical marijuana is legal
+Mr Dinkleberg So glad that it's helping.
I made a shorter version of this video if you want to check it out:
th-cam.com/video/pwkwXbkMRUs/w-d-xo.html
Ariel
what about nocturnal seizures? I've had them since I was 5, but didn't know what it was until 28. I have hard time speaking. I stutter, get confused in conversations, and short term memory issues. I might even be dyslexic. Many people around me don't want me to go to doctor or even speak about it (my husband and his mother). But call me stupid right front of me under their breath. I still can understand everything that goes on, but it's like I can't communicate well.
That sounds so horrible. The thing we need the most is supportive family and friends. Do get to your doctor please, you do not need to suffer like this. Also, check out my video on Epilepsy and Memory, maybe if they watch it that will help them understand a little. Yes, I do know about nocturnal seizures. 90% of my tonic-clonic seizures were in my sleep. What do you want to know about them?
+ariel on health My nocturnal sleep seizures went along with sleep terrors during my childhood. Eyes wide open, screaming, walking through every room in the house. These terrors happened from 8 to 15. I sleep talk as an adult. "One time I sat up, patted the bed, and asked where is my cheese burger? (said few cuss words) which I am not know to cuss. Is nocturnal epilepsy different for everyone? How often does seizures and dyslexic are inherited into families? I've read that seizures eventually cause dyslexia, but I am worried for my daughter. I guess somebody in my husband's family has the nocturnal epilepsy (he also stutters. My father is severely dyslexic. Sister talks in her sleep and my brother use to sleep walk and is minor to moderate dyslexic. I am also worried that medicine would make me worse off with confusion or losing my DL.
+ariel on health My nocturnal sleep seizures went along with sleep terrors during my childhood. Eyes wide open, screaming, walking through every room in the house. These terrors happened from 8 to 15. I sleep talk as an adult. "One time I sat up, patted the bed, and asked where is my cheese burger? (said few cuss words) which I am not know to cuss. Is nocturnal epilepsy different for everyone? How often does seizures and dyslexic are inherited into families? I've read that seizures eventually cause dyslexia, but I am worried for my daughter. I guess somebody in my husband's family has the nocturnal epilepsy (he also stutters. My father is severely dyslexic. Sister talks in her sleep and my brother use to sleep walk and is minor to moderate dyslexic. I am also worried that medicine would make me worse off with confusion or losing my DL.
+ariel on health My nocturnal sleep seizures went along with sleep terrors during my childhood. Eyes wide open, screaming, walking through every room in the house. These terrors happened from 8 to 15. I sleep talk as an adult. "One time I sat up, patted the bed, and asked where is my cheese burger? (said few cuss words) which I am not know to cuss. Is nocturnal epilepsy different for everyone? How often does seizures and dyslexic are inherited into families? I've read that seizures eventually cause dyslexia, but I am worried for my daughter. I guess somebody in my husband's family has the nocturnal epilepsy (he also stutters. My father is severely dyslexic. Sister talks in her sleep and my brother use to sleep walk and is minor to moderate dyslexic. I am also worried that medicine would make me worse off with confusion or losing my DL.
What about just a burst of fear for like 10 seconds then nothing nothing else wrong just that ?
Rob Melendez Well, a seizure can be very short like that. If you have no other history of seizures it’s hard to know. I feel like a seizure is unique for me because it is totally unrelated to anything that is going on. It starts suddenly and jolts me. I am not necessarily feeling stressed or worried at the time that the fear comes. Now that my seizures are more controlled, they are much milder and not as hard to deal with. They still happen suddenly and have a certain odd feeling (I can only describe it as the feeling I know is a seizure bc it is not like anything I have ever experienced otherwise). Hope that helps. Wish you the best.
But don’t panic attack do the same ?
Rob Melendez For most people, a panic attack happens based on something going on that is stressful or scary. They will be somewhere and start to feel anxious and then it builds up, sometimes very quickly. I’ve never heard of a panic attack that stopped suddenly on its own. The person has to do things to calm themselves down, meds, change location, deep breathing, get support. Sometimes that can go on for at least minutes and then it will take hours usually to get to feeling calm again. So no, I don’t think panic attacks are like that.
I was driving when this happened and I was thinking what in the world is this random feeling of fear so intense out of nowhere I got scared and was about to pull over but as soon as I got to the exit of the free way it was gonna and left me a little anxious thinking what that was
Rob Melendez I totally understand feeling anxious about it. Having something like that come out of the blue is really weird. Before I knew that what I was experiencing was seizures, it scared and confused me so much. Like I said, I can’t tell whether it was one or not. But being attentive to any other things that happen suddenly like that and if it continues and is a problem, look into it.
i do think panic or anxiety attacks happen as a result of brain waves acting up. İf constant, go in and have EEG done. If not, forget about it.
thats the same thing i went though last year after finding out i have Aids then a smail storke iam a gay man
Same David hope you are on treatment.
When I was in seventh grade (I'm a junior in high school now), I had really bad déjà vu episodes where I'd remember what I thought was a dream, maybe a recurring one. It would play through my head, and this feeling of dread would come over me. I would pray and pray for it to stop while it was happening, I got so sick to my stomach, and then as soon as it started, it was over. I couldn't remember what the "dream" was about or what happened in it. They happened a lot, every few days, or every couple of weeks. But one day, in school, it happened twice, and then I started keeping count. It happened at least twenty times by the end of the day. I harassed my parents about it, and they didn't understand so they just thought I was acting out. I was terrified.
I typed in my symptoms into google one day, and with every thing I saw, I assumed it was because of my migraines. But I told my doctor and they said they had no idea what I was talking about.
After that day, they started happening less. The last one that happened was in eighth grade, and I thought I was okay.
Well, every year since, maybe once or twice a year, I get the feeling I get before the déjà vu happened. The déjà vu never happens, but I still think I should be concerned.
I have struggled so much with depression since I was younger, but right now anxiety is my biggest issue. It's crippling and it's hindering my ability to work and get a good job. I'm afraid whatever this is may be lying dormant, and it's not over yet. I still go to a pediatrician since I'm a minor. Who should I see, and what do I say? I don't ever like self-diagnosing, but is it wrong to think I may have TLE?
Keep harassing your doctor. Mine took over a year for th m to diagnose. I had to go to a neurologist about a 2 months ago and that’s when I found out it’s Partial Complex seizures. Don’t give up. It took me a long time!!! 1.5 years later....
wow this is so crazy I experience the SAME EXACT THING. especially with the “dreams”. I’ve had this since about 2012 and it’s taken me so long to be able to describe the sensation. I always sound like I’m totally crazy when I try to explain it to my friends and family, you have no idea how relieved I am to see that I’m not alone.
Mine feel like a reoccurring dream too! I hope things get better for you!!!
my exact experience!! the “dream” part is soooo real it’s like a dream you’ve had but forgot about and then you get that feeling and totally forget what it was