The Difficulty Describing Focal Aware Seizures (Simple Partial)-especially with TLE

I went many years being undiagnosed with focal aware seizures because I had never heard of anything remotely close to what was happening to me. I had already been diagnosed with tonic clonic seizures, but I didn’t know how to describe what I was experiencing to anyone, including doctors. Hearing other people describe their seizures really made me understand what was happening and then I was able to clarify to my doctors what I was experiencing.

[@eminaomerovic3038]

I have focal temporal epilepsy, and it took me 9 years to get diagnosed, for exactly that reason: I could not describe what was happening and what I was feeling in 15sec before the seizure, and after that I would blackout, but keep talking, walking etc. so no one believed me at first. I heard a lot of "you are crazy/it's just stress/you just want attention" etc. Thankfully I did get diagnosed, got the right meds, and have been seizure free for 4 yrs now.

[@arielonhealth]

Yay! I'm so glad you got it figured out. It's good to hear a success story. So many people who come to my channel are in that time of being misdiagnosed, dismissed and minimized. Took me 14 years to get the partial seizures diagnosed and my life is so much better now that they are treated. I am almost seizure free. No tonic clonic (grand Mal) seizures for 17 years. No extremely debilitating partial seizures for about 4 years. I still have very mild ones once in a while but it's not like they used to be.

[@s4moor369]

I came to the realization today that I have been experiencing what I suspect to be temporal or insular seizures for (at least) the past 6 years. I’m not sure why I never did research on these experiences before but I had one this morning and decided to google “why does deja vu make me nauseous” and found all these studies on focal epilepsy. I obviously have not been diagnosed yet but I am almost 100% certain that this is what it is. I’ve told my friends and loved ones about these experiences before and have even experienced them in front of them and of course since it doesn’t look like a typical “seizure” it was always brushed off as something psychological or a panic attack. I get the overwhelming sense of deja vu, and like you said, it feels more real than real life. It’s like all my senses are heightened to the extreme at the same time. I’ve always just called it “weird deja vu.” I experience overwhelming anxiety and fear, I start sweating, and I have gastric uprising where I begin to gag and almost puke. As I said, I’ve experienced them for at least 6 years. I’ve also experienced psychosis many times. My memory and ability to process information as well as communicate effectively and easily have deteriorated drastically over this time and I’ve always just blamed it on my mental health or dissociation. But now so many of my problems make sense. The bathroom lighting at my childhood home always triggered these episodes and I assumed it was PTSD or sensory issues. I now shower by candlelight. I’ve tried talking to some people today about this discovery and how I’m fairly certain that I’m having seizures, and they have all either looked at me crazy or downplayed the severity of my experience or ability to be diagnosed or treated. It has been an incredibly isolating experience not knowing what the issue is, but now that I’m sure I do, I still feel isolated. This video has helped me feel less alone and valid in my beliefs around whether this is legitimate or not. Thank you.

[@RalphSmith-cj5he]

I had a stroke several years ago and I am using an AED. I am also on Disability

[@clarefraser8288]

If only there was a pill for the doctors could take and have one episode just to understand. I was miss diagnosed for 20 years!! I have temporal lobe epilepsy. All that you describe makes total sense to me, you do describe it well. I get so scared and very emotional. People say it will be fine, but it doesn't feel as if it will, I am scared I will stay in that state and just walk out the door and not know who I am or where I am. The dejavoo and it also feels crystal clear so clear. Dont know if any of this makes scence ! Thank you x

[@arielonhealth]

I think that would be so great! I swear people and especially docs have no idea what it’s like. Sometimes I wish docs could experience my other chronic illnesses also. They would take me way more seriously. What you say totally makes sense! I wasn’t diagnosed with TLE for 14 years😢. It was a living hell. I used to get confused and lost after a seizure sometimes. It got really scary. I started being too scared to leave the house. Now I have a service dog I trained who came with me everywhere for a year. My seizures are almost completely under control now so he isn’t always with me. But now I am home bound due to M.E. So we’re together a lot. It took many years and meds to try, but I am so grateful to be almost seizure free, my quality of life is sooo much better! Wish you the best

[@dqdave]

Described well. Family and friends know the word “seizure” but explaining it and them understand the seizure is not possible.

[@eminaomerovic3038]

Oh I whish there was a pill like that, it's soo hard to explain a focal seizure (I also have temporal). It took 9 years of hearing "no, nothings wrong, you are just stressed/want attention etc." for me to get diagnosed ..

[@Nikki3b0oxX]

@Clare Fraser my Deja Vu was so crystal clear I also had a vision lol. It was WEIRRDDD .

[@quiteaware333]

I say things like, "my thoughts stop immediately. I cannot make my eyes stop moving. It is like my mind cannot form thoughts"

[@arielonhealth]

That's hard! For me, during the seizure, my thoughts are almost heightened.I really feel like I can't think afterward. It's like someone unplugged my brain. But that sudden "bam!" out of the blue experience of having any seizure is so difficult and definitely a common thread.

[@jaihatch]

Me too. I can’t comprehend anything and my words don’t make since and I can’t think until it stops :(

[@andreacarter9913]

My words start to fumble then I get embarrassed, then I start to get confused and rushing thoughts and I have to start taking notes about what is going on. To keep up - all whole working trying to act normal. I'm like I gotta go people!!

[@dqdave]

“Faking it” like nothing is happening sucks. You’re not in the same reality and even after “pulling out” of the seizure, you are “out of it” for hours. Exhausted brain. As if you woke up after sleeping only a couple of hours at night.

[@arielonhealth]

I swear, that is the hardest thing! Because I didn't know they were seizures, I used to just keep busting through whatever I was doing and it was so intense and I would get so confused, and pretend nothing was happening and try to function, which is hard because my brain is fried. I agree that is the worst, and I felt so alone with no one understanding. Now that I know it's a seizure, I just stop whatever is going on-literally say "hold on, having a seizure, got to go lie down". I know you may not be able to tell everyone at work or whatever that it is a seizure, if that is a problem, but since my friends and family know, there is just an understanding, and no one tries to talk to me or have me make sense or freak out if I say I am having a seizure. With my service dog, I also did that in public, you can use another word that people don't freak out from, like-a "neurological condition" to excuse yourself. I describe the exhausted brain, "out of it" like you said, as if someone pulled the plug on my brain, it's offline, will not connect. I literally just can't think. It makes sense, your brain just got overworked and misfired. I so hear you! Nice to know I'm not alone too.

[@dqdave]

Andrea, I sincerely can’t thank you enough for your video. I would not have the courage nor the right words to say about what they are and feel like. It’s giving me hope. That’s a wonderful gift Thank you.

[@rhiannoncurle9802]

This captures so PERFECTLY exactly what I’ve dealt with so long. It’s taken 8 years for a neuro to go “I think you’re having focal seizures” I get bad anxiety and low mood after them - so a lot of the time it was chalked up to bad mental health!!

[@chonie-kids]

when i finally got to see my neuro she looked at me and said it was strange and talked to me like i was crazy i was really upset to not get the answers i had hoped for i had an eeg and mri which had shown nothing because i just didn't have a seizure at the time of them. im so glad i found TLE support groups on facebook its made a huge difference and its nice to not feel alone. im still having breakthrough seizures with my medication but they arent as bad as what they were when i started low dosage meds, if i had an episode i would vomit straight after im glad that hasn't happened in a while. i also have depression and anxiety but explaining a seizure is the worst it really does sound like you are crazy. im thankful that i can feel them coming on and can let someone around me know to make sure im in a safe space and cant do alot while its happening. ive never experienced anything so frightening in my life its something i wouldn't wish apon anyone. my mum had told me that her brother also had epilepsy, as an adult now hes had no seizures in years im hoping when i get into my older years it will just go away, im an exhausted mum of 3 with epilepsy on top of that i do have my bad days but i let me kids know im okay they know to get help from another adult if i really need it

[@arielonhealth]

Chantelle Le Breton I’m so sad to hear that you had the same experience with A neurologist. Honestly they’re there to help you and when they dismiss you and don’t even try to help you it feels awful. I’m glad that you were able to get some support and that you are now on epilepsy meds. For me it was definitely a lot of trial and error, I ended up trying 12 different meds. I found the two that I have the best control and the least side effects. That has definitely helped my quality-of-life. I still have very small and infrequent breakthrough seizures that are partial seizures and it’s not upsetting anymore. However, in the past seizures were the most difficult thing I’ve experienced mentally emotionally and physically. It is totally frightening and Traumatic. I also have Depression and anxiety. I don’t know if you’ve seen my video about depression and epilepsy but so many people with Epilepsy have depression and anxiety. The area in your brain where seizures associated with temporal lobe epilepsy are in the area where memories and emotions are. I can’t imagine being a mom and juggling this illness as well. Hopefully you can continue to get good help and maybe at some point be seizure free. I wish you the best. 😊

[@ElectrikCandies]

The intense feelings that are not quite emotions... When I try to explain them to friends, I tell them to imagine the complex feelings that they feel when they think about their childhood home, or something nostalgic of the sort. Then imagine you are filled with one that is familiar, yet completely alien because it's not attached to any known memory. Trying to recall where this feeling is from is when the attack starts and my mind gets flooded with dream like scenarios and then I get the intense fear and nausea (and end up vomiting).

[@arielonhealth]

That is so hard. 🤗

[@Wall_Flour]

Yeah, This video resonates with my experience with mental health and my past experiences with (what I believe are Simple, Partial (Focal) Seizures) [I'm going in to get a referral to a neurologist later this week]. For Psychiatric Diagnoses, I've got: GAD, SAD, AvPD, BP type 2, Cannabis Dependency Disorder, PTSD, and High-Functioning Autism. The first time I ever spoke with someone else who had experienced Major Depression was a breath of fresh air. "I wouldn't wish it upon my worst enemy," was what we conveyed; and in that moment, I knew: They knew. Similarly, For Acute Anxiety, there's a great description by Andrew Soloman (in a TED talk): "It's that feeling of when you either slip or trip, and as you're falling the ground is rushing up towards you; but, instead of lasting for a split second: as that does, it last for days or weeks on end." For me, It's hard to discuss such esoteric experiences with people who haven't been through them, because you just know that: no matter how hard you or they try, they're simply not going to have a fully accurate understanding. (Similar to the essence of Plato's Allegory of the Cave.) I recall reading 'Shopclass as Soulcraft' a book from my college philosophy class: in which the term Tacit Knowledge was explained. Tacit Knowledge is knowledge that is gained through experience, but can't be explicitly conveyed to other people. (It's sort of like developing intuition: you know something, but don't necessarily know how you know it or how to describe how you know it.) For me, the Simple, Partial (Focal) Seizure experience is particularly difficult to convey, but after years of apperception, via reviewing my life in regards to psychological conditions, I feel I'm more capable of trying to explain the feeling. So here's my attempt: Suddenly, seeming out of nowhere, I feel an odd sensation of dissonance. I begin to enter a dissociative state that draws my attention away from being immersed within my surroundings and towards being focused: primarily on my internal somatic sensations, feelings, emotions, and thoughts; although, throughout this, external stimuli is not completely blocked off and my situational awareness is relatively intact. The sensation is quite visceral and surreal. On one hand, it's as if you're a war-veteran manifesting the 5000-yard stare: not looking at anything discrete, within your immediate environment, but more-so looking past everything: as if to gaze into an abyss of one's own pensive recollection of past experiences; yet, on the other hand, it feels unreal, like the stereotypical movie moment: where a character is, for a brief moment, hyper-aware of their circumstances: gaining an almost metafictional awareness, feeling as if they are becoming aware of the illusionary nature of the reality that is presented to them. All the while, as the dissociation sets in, I lose any meaningful faculty of motor function: as if to experience a temporary form of 'Locked-In Syndrome'; I can look around, but regardless of how desperately I wish I could convey to other's "I'M HAVING THAT MOMENT AGAIN!", I simply am incapable of interacting with what now is a slightly distanced environment. Around this time, Several seconds into the experience, I'm fully aware of the circumstances: of this being 'one of those moments' ... But despite my awareness, that very awareness is all I possess: I am simply an observer. My mind seems to race, slightly, but I can retain both: attentiveness to my thoughts and most of the external stimuli: albeit, external stimuli lack a bit of fidelity. After a few more seconds pass, I can only spend this time recalling past experiences of such 'moments', and my desire to be able to maintain this altered state of mind: as it it were to be captivating experience yet one that causes slight apprehension. "I've experienced this before", I think to myself; but whether this sentiment is literal or metaphorical, I am ambivalent about. I know for certain: "I've experienced this type of experience before"; but, In an almost delusional and paranoid manner, I also question whether these moments aren't some type of 'revelation', so to say: As if I'm experiencing a bit too much of what day-to-day reality is mean to be, being given a brief glimpse behind the curtain. I desire to know whether the latter: metaphorical interpretation, is accurate, and so I try to race against my own thoughts: seeking to push forward and gain some resemblance of control. But rather than being met with the clairvoyant perspective I desired to attain, I'm instead brought back: out of my dissociative state. 'Was that "Real", or is this return to my previously immersive environment really "Reality"?' I can only sit and reflect upon the experience, trying to come to grips with the knowledge that: the experience was a brief moment in time, which was certainly real: in the subjective manner that everything which is perceived is real, for everyone, within their own perspective. Yet, I can't so easily shake away the notion that: this moment might have simply been the "Deja Vu", of which everyone seems to experience from time-to-time, or it might have had a greater salience. However, Despite how much I contemplate these such moments, I'm left wary as to whether it's even worth trying to convey to others: 'surely the couldn't truly understand'. I've tried before, but they just don't seem to care: as I do, about trying to discerning whether our experiences are mutual or dissimilar. So I do try to convey the experience; however, yet again, it's dismissed under the rhetoric of: "Everyone has those moments every once in a while." or "Yeah, that's common."

[@arielonhealth]

💜

[@Amelia-sc7es]

This is a perfect explanation!

[@philippage2513]

Thank you for your video. I suffer from focal seizures and yes you are absolutely right, not many people understand seizures unless they suffer from them. Seizures come with a lot of weird sensations, mine effects the limbs and head and teeth chattering which is really strange and also anxiety, confusion and learn problems, and forgetting how to spell words. It is very scary indeed

[@arielonhealth]

philip page I’m glad you found the video helpful. I am just so grateful that I have a way to support other people with this because it is so difficult. It’s amazing how many different symptoms people can have. It’s almost like anything is possible. I hope that You are able to have a good quality of life and not feel alone with this.

[@bitch_bites_dog]

I started having seizures 2 years ago pretty randomly. I don't have family members with epilepsy and I don't have any obvious history of seizures. I just started having them months after turning 30. It was odd because in the span of 4 months I had 5 seizures and then the strange unsettling feelings in between, which I guess were simple partial seizures. I hadn't had another seizure until over a year later (minus the ones I didn't think were seizures). I decided after the 6th seizure I had to start getting tests done. The first test was an EEG, which I guess I got "lucky" with because I had irregular activity in my left temporal lobe, and I was diagnosed with TLE pretty quickly. The scarier seizures I have turned out to be partial complex seizures w/secondary generalization. They start off with me not being able to speak, the lights in the room become very bright, then I cannot move my arms and then I start to have something that is similar to tonic clonic seizures except I never lose consciousness.The diagnosis doesn't seem real to me still (everything happened so quickly). I guess because, other than the more obvious symptoms, most of the "moments" I have are not always intense. A lot of what I experience is mild but still confusing and frightening. For instance, I'll be talking to someone and my mind goes completely blank--I've forgotten what I was going to say and what the conversation was about momentarily. I've also had seizures where my thinking just turns into noise (almost like my brain is stuck on the beginning of a word). Or sometimes conversing with people I struggle finishing a word and it seems like I'm stuttering, but it's usually accompanied with slight nausea and light appearing brighter. It's can be tough for me to take myself serious because most people I encounter with epilepsy seem to have such obvious and much more intense symptoms and I mostly just feel icky.

[@arielonhealth]

I don’t have any obvious reasons for my epilepsy either. Many people have what is called idiopathic epilepsy, meaning there is no known cause. Mine started at age 12, I think it may be whatever is a trigger in your body perhaps causes it to start, I don’t know. Those do sound very scary. I’ve had something similar with where I was trying to speak and I started stuttering but I only had that once. I’ve had quite a few, not all of them have I had multiple times. I think that’s pretty interesting. I am sorry that it happened so quickly and that it’s a big deal and I’m sure it’s upsetting and something that will take a while to get used to. I would say that actually most people with epilepsy you would have no idea Because often they are on medication, Or they tend to have seizures at night, like in my case. Also I had tonic clonic seizures and that was obvious, however partial seizures nobody saw those or knew about those and I just felt so alone and got very depressed. I felt like there was just something wrong with me because he didn’t make sense and it was so weird. I hope you know that you’re not alone, and there’s nothing wrong with you, I wish you the best.

[@bitch_bites_dog]

@@arielonhealth Thank you

[@flowerpower9541]

I get ya, my first eeg, showed spiking in temporal lobe. Although I had fell asleep, and hadn't 'had one'. I hope you are feeling better in that your fear is leaving you. After time, I relied on my cynical sense of humor and have learned to be more at peace with my defunct brain. We are UNIQUE!❤ seriously though, just make sure you are getting the treatment you need and take care of yourself. Prayers, hugs

[@lilacbelly]

This video put something into words that I’ve really been thinking about. I am working on getting my diagnosis now and many of my friends think it is ptsd/anxiety. Even I thought it was one or the other until I found out about focal aware/tle and it made a lot more sense for the timing/presentation of my symptoms. Thanks for this :)

[@rachaelhaines2200]

Thank you for doing this video. It explains so much and helps me to not feel so alone.❤

[@MRCATWRENCH]

It just dawned on me today that I’ve had two seizures in 2020, one today and one in May. My experience was a very brief deja vu feeling followed by a minute or two of extreme confusion about what the hell just happened. The first time I had no idea what it was, today I did some symptom googling and it started making sense. I’ve battled migraines for many years and am pretty sure this is related to that. I had a tough time articulating the first part, but when I read about someone else’s deja vu description it hit home.

[@arielonhealth]

I hope you get some good help. 🙂

[@ulrikezachmann7596]

You are an excellent educator. Very grateful to you for helping people understand. Sweet little dog too.

[@brettreed8599]

I am just starting to experience these events. You put into perfect words what I am dealing with.

[@flowerpower9541]

That was a PERFECT way to explain it, in layman's terms. A seizure is something ive only experienced during the seizure, in everyday life, i haven't experienced, to try to quote you, that was great!

[@account7020]

It is such a breath of fresh air to hear someone else describe these emotions, thoughts, and feelings that i experience during these episodes. For a long time i thought i was experiencing panic attacks but they were too random and had nothing to do with a person, place or situation. I stay aware, able to talk and retain memories but would feel an INTENSE, super uncomfortable feeling that went from my belly all the way up to my head. I would feel flushed and my face felt like it was on fire. The dejavu part was the first symptom i would feel at the start of my episode but they were about the most random circumstances that in regular life would never cause my any anxiety or fear. Ughh im rambling...Thank you for your input in your video, there is not a lot of information about this unfortunately.

[@wmd40]

Thank you so much. I have PTSD, ADHD, social anxiety disorder, and a headache/migraine disorder. I have felt a lot of crazy things in my life, and honestly I've done some drugs when I was younger so I know what all sorts of things feel like. The other night I was just sitting there with my boyfriend and all of a sudden everything felt WRONG and WEIRD! Things looked much different than they usually do, farther away and bigger than normal. I felt like I couldn't move my head or eyes at all. And I was pretty scared and tried to explain it to my boyfriend but I couldn't think right and couldn't get the words out. The back of my neck was tingling and it moved from my neck up the back of my head I have never had a TC seizure but it felt like that was going to happen. I also felt like my stomach had a rock in it that was being pulled down into the couch. Then after like 2 minutes it was over and I went back to how I normally feel. I have lesions on my brain from "migraines" according to my neurologist but I am going to go for a second option now but I'm scared they won't believe me.

[@arielonhealth]

You believe yourself first and foremost. Best wishes

[@RavensHouseOfTarot1111]

Mine are like the worse panic attacks ever and intense fear an indescribable fear. I’ve had deeply emotional dysfunction like intense euphoria and intense sadness!. Everyone looks at me like I’m crazy!

[@arielonhealth]

Divine Feminine Tarot That sounds really hard. The more emotional ones really throw me off. Strange because if you think about it your brain is actually having the experience of some thing and yet you have to tell yourself that it’s not real which is true because it’s actually a misfiring. Intense

[@ragsdmc7789]

Many people treat it less than what it is. My boss said to me it's not that bad my niece has seizures.

[@ericzimmerman8487]

Trying to explain a siezure is like trying to explain an acid or shroom trip.

[@arielonhealth]

Eric Zimmerman I think that’s a great way to explain it! It’s like trying to explain to somebody who’s never been in that world what it is like. I guess people just seem to be more open to different experiences that people have on acid trips. I wish they would be open to the fact that we can have some pretty bizarre bizzare, but they’re still very real.

[@alexmcdonald2111]

I have focal aware seizures and that’s how I’ve tried to explaining what it feels like. Like having a bad trip or being stuck inside a nightmare

[@melissasimpson669]

@@alexmcdonald2111THANK YOU! I tried explaining this to my first doctor and she just diagnosed me with panic attacks and tried multiple different medications for that and none of them helped and I got so tired of it I gave up and I just refused to talk about it because I was afraid of being treated like I was crazy. I didn’t have a big one in almost 7 years until this last Friday one hit me and scared me bad enough that I said f*ck it and sent a message to my current doctor telling him what happened and asking for an appointment because I can’t handle going through those big ones again. I can’t do it. I’m hoping on Monday at my appointment I can get him to look into testing me to confirm that they’ve been seizures.

[@flowerpower9541]

I TOTALLY agree!! Lol. SOOO out of this world

[@flowerpower9541]

​@alexmcdonald2111 my complex partial seizures had the unusual "religious" auras. So they could sometimes be almost enjoyable. Almost lol. And now I'm having what I think is what you describe, a very VERY unpleasant few minutes of, memory loss and saying nonsensical words, NOT enjoyable at all

[@LittleCutieABDL]

That would be very helpful that pamphlet have a similar thing of NCBI but certain ones I experienced were not as you say questioned in the office. Thank you Ariel, doctor too not believing hope you are feeling better but CFS and put Epilepsy and everything into respective very difficult to live with I imagine, I myself with a mystery illness that was not properly diagnosed and almost killed my last close to 2 months ago, living with it for years now. I partially explained it in your last recent video, thank you for all your videos, you’re amazing and like my twin soul, I fell I could talk with you for hours just how you speak and your sense of being sorry if sounds odd but yeah U are is comforting listening to your videos knowing I’m not alone. Not to make this a testament more than I should, We Will keep on fighting. Much love, ~ Mila

[@arielonhealth]

I hope someday a group of us with Epilepsy will make a pamphlet. It could really help a lot of people. I am so glad you find my videos helpful and comforting. :)

[@kerise9281]

I've not even been diagnosed I found out after my so called "epilepsy nurse" made a U-turn after finding the EEG was clear so said it's "possible epilepsy" just because the meds were working. but mine is linked to a rare genetics disorder and epilepsy is very common in it. 90% of patients would have it. listening to your vid is very very similar to what I've been experiencing as I'm always aware and remember them after but its really confusion and fear that I suddenly get with intense anxiety/panic attacks for no reason then I'm suddenly but still feel slightly confused after and get very tired after. I know my taste buds change or I get a weird headache before it starts suddenly but I can't always tell.

[@dqdave]

So nice to know I’m not alone in trying to describe these seizures. 80+ a year. Still don’t / can’t understand them......

[@arielonhealth]

I think it's the hardest part of having TLE because you can only get help if a doctor gets it and usually the first time people describe their focal aware seizure they are written off and invalidated. I used to have probably that amount, plus at least one tonic clonic seizure a month, but since I couldn't explain them, the tonic clonic seizures were the only thing that got treated for years.

[@TheRainbowHexagon]

omg you summed it up perfectly. i was also waitressing when i had a tonic clonic and the auras are like that, im on keppra now but i still get focal seizures

[@Nikki3b0oxX]

I had that Deja vu experience and the neurologist said yes that was a seizure and when I started having breakthrough seizures on medication the doctors said I was having fake seizures . I got so tired of being told it was freaking anxiety when I was having weird things like not being able to talk or feeling weird and disconnected and just not myself . I’m so tired of explaining it to my mom and not being heard . No one gets me . Makes me feel crazy So I just deal with it now on my own and pray I don’t have another one where my body stiffens .

[@arielonhealth]

L I wow that is so awful. It’s so scary when people won’t listen to your reality and no one else can know it but you! I have had doctors and other people say I don’t have epilepsy and it’s been very traumatic. I was wondering if that first neurologist still sees you and if you’re still on epilepsy medication because whether or not the other doctors believe you if you’re on meds and it’s working that’s the really important thing. I’m really sorry that you’re going through this though I really do know how horrible it is and how horrible it is that doctors do this to people. Hopefully you don’t feel so alone here. Also check out resources like the epilepsy foundation talking to other people who have similar seizures and have had similar experiences including not being believed really helped me. I hope that helps

[@Nikki3b0oxX]

@ariel on health Hi thanks for responding . So interesting story my cousin worked in that same office as the doctor . I hadn’t seen her in over ten years and recently I went to visit her for some face masks she was making and she believes I should go back to that doctor who diagnosed me she believes me and said it sounded like seizures so I’m motivated to go back to him again. I was on Keppra I personally believe it didn’t work for me . It gave me severe panick attacks which I believed caused me to have those seizures that don’t look real to doctors (hence why an emergency doctor told me they didn’t think it was real) . It has been horrible to not know exactly what’s going on but I just know it’s more than anxiety . Idk how people would explain the auras I feel and how my speech changes or I can’t speak . It’s like I feel trapped inside and can’t respond to my mother and tell her what’s wrong . She finally believes me she just wants me to get further testing . But to answer your question I stopped taking the keppra altogether . I haven’t had a bad episode but I’ve had atleast 3 minor ones the last one I had flashing lights before and afterwards I slept for like two hours . I don’t think those are anxiety attacks . Sorry for the long message .

[@f8-4-4n-fighter8]

I’m on the keppra sometimes I feel like I’m freaking out

[@flowerpower9541]

I have complex partial, but lately ive had what i think are seizures, but its different than my typical. I will suddenly be aware, having "lost" moments, maybe only a minute or 2 of time, i will be saying a word(im unaware of it) both times, the person with me told me i had said something just a totally off the wall word that did not apply to the conversation, and i cannot remember wjhat seems like the last 5 minutes, but am told i seemed fine except for my speech. The one happened in front of a neurosurgeon in fact, he was aware i had a history of seizures, i sas there for my neck. He did not pursuit it further as that is not why i was there, but asked me if my sister was driving me home, kinda jokingly. But i digress, im think im having absent seizures now, thoughts? And as to this video...very nicely done. Prayers for your well being. Our ability to be at peace with our afflictions, i believe is an incredible blessing, that we all can attain ❤

[@weeziii8193]

Hello Ariel, thank you for everything you do. A little back story. I've had an accident 2years ago where I hit my forhead directly to the ground and it cracked my bike helmet. It happened so fast so in very high speed. My head was scanned and had an MRi everything normal. And bloodwork. But I had a massive concussion, and couldn't form a proper sentence or really speak for at least 2weeks. 3months after i went to neurologist he barely looked at me, but he said everything was fine and what I was feeling was normal for concussion symptoms. 6 months to 1year later. I started to faint/syncope like episodes, and have tingling sensation. I have wroten it down in sections to hopefully make it more easy to read and understand down below. I am sorry in advance for the very long description. My doctor told me the fainting is probably because of my concussion and doesen't do anything about it. So I've changed doctor and am going to my first appointment in two weeks. This time I want to be more sharp and know what kind of test to ask or how to describe my symptoms without sounding crazy. And I hope you can help me with that or point me to what you think it might be so I can do my research. By the way this is my 6 or 7 concussion during a span of 15years. I did allot of combat sport. But this is the first one that did not go away after 1week. Here comes the episode description:

[@weeziii8193]

1. Shut down: Where I get hit by extremely tiredness. Lose focus in the conversation. My body feels extremely heavy as if you would hit me with a baseball bat I wouldn't be able to react. Most times I tend to lean to my left side. Blink really quickly because my vision sort of weakens I think and eyes get very dry. I am fully aware of my surroundings. But I am so extreme tired. When I speak I speak gibberish, and am not always aware of the sound i make are not words. I forget words in the sentence. i can picture them in my head, but I sort of lose the vocabulary when the episode happens during a conversation with people. I have nausea Vertigo, and am afraid, very thirsty afterwards. Most times I have a dejavu feeling. A prolonged dejavu as if I can predict what is going to happen either by having an episode or what say the person I am speaking with is going to say even if we've never met before and speaking for the first time. very uncomfortable and scary. Sometimes I have the dejavu hours before, and a ringing sound like a plug to a speaker in my left ear. Mostly in my left ear. 2. Light switch: One minute I am there, the next I am gone like switching light. Like in a day dream or thousand thoughts at once and yet None specific I wouldn't be able to recall if asked what I was thinking, if that makes any sense? Where everything feels surreal. Have the same symptoms as above in shut down, but here I can't really see, things are either very blurry or very Sharp stretched out. As if you've been inside drinking alkohol, and go outside and get hit by a sudden realization that you are drunk. No balance, and no sensation in your body. Like watching yourself outside your body. Here I notice I don't care about anything or anybody. In the first (1) I am scared, but here its like sleep paralysis but being awake. I can't move nor talk. I mostly feel the tingling sensation in feet and hands after the episode. Whereas in number 1 I feel it during. And then I just can't hold my head up or body up and I am gone. Both episodes happen in only 1-2. Minutes. But sometimes they come in waves. Where 1-2minute or 30seconds i have a Episode and then I Carry on with the conversation, and then it happens again, then back to normal. I am very tired also here. But not as much as number 1. 3. Vibrating head. This I've only experienced a few times but extremely uncomfortable. Last time i was walking and got a dejavu sensation and fear or thought I might be having an episode but then when tried to ignore symptoms of 1. And 2. And kept walking. I get extremely warm in my head. My hands and feet get cold and Numb. And it feel like someone is shaking my brain inside my body all the way to my Bones and toes. I get extremely nausea, and feel like I am about to faint every second and an irrational fear like my head was gonna explode. I saw dark/ red spots like when you run really fast and can feel your puls to your head pounding, but it helped when I put cold on my head and stopped walking. But my vision it felt like looking through a video camera and someone was shaking the camera so the vision was very blurry. Had a huge headache during and after. But from the outside I was told I wasn't shaking at all. I remember the last time It happened I didn't care my in laws were there and everybody could see I just couldn't stand the feeling so I tok my jacket of and was in a tank top during winter to get my body to feel cold so I could feel better. and first after the head vibrating/ buzzing/ shaking, whatever you wanna call it stopped I could feel the tingling in my hands and feet. This probably lasted about 2-3minute max 5minutes so longer than the other ones. But it felt more like eternity. After my body was cold I was completely normal just a little tired and the headache went away. But next couple of days after feels like I've been to a festival sleeping on the ground and drinking everyday and massive hungover. My question to you is. Does this sound like something epilepsy related? Or is it more like PNES? Can't seem to know how to distinguish the two apart. Or maybe panic attack? Even though these episodes come very random and during whatever I am doing, even when I am very excited and opening birthday presents, or during quiet dinner. My triggers are. Sharp light, alcohol, loud noises, heat, when I am exited about something, or lack of sleep, days up to menstruation. Pretty much very random times. Thank you so much for your time you or whoever reads this.

[@arielonhealth]

What do you have written is going to be great at your appointment. I couldn’t get back to you until now because I haven’t been well. However I really hope the appointment went well and one book that I liked is called the epilepsy patient and family guide by Orrin Davinsky and the website for the epilepsy foundation has a lot of good material to read and also to help you get ready for appointments or what to say the doctors to get your point across.

[@weeziii8193]

​@@arielonhealththank you for your response and recomendations. I hope you feel better soon. 🦋. My doctor wants me to make a time line over my life. And past before my accident. How my childhood was and upbringing. If I changed school allot and my Family how my relationship to them is and friends etc. Her reason was so she can get to know me better, but I suspect it's because she thinks it's mental illness. Especially the questions she asked me. What I wrote to you, does that sound like it could be epilepsy? Someone told me usually people don't have different types of epilepsy seizures.. And they said seizures are usually with the same symptoms and not different as I wrote ... I think my doctor is leaning towards dyssociative episode or something. She hasn't exactly said that but she said after the next appointment she will go through my life timeline she made me do. She will afterwards determine where I should go. Or what we should do. So I am very confused. Also worried that it might be PNES.

[@arielonhealth]

It definitely sounds like the doctor thinks that it’s possibly psychiatric. Unfortunately that is super common for doctors to think that certain seizures are actually psychiatric problems. Often times, anxiety, depression, or whatever go along with many illnesses, including epilepsy, so it’s not that we don’t have plenty of psychiatric issues that need help. But, the aspect of thinking that patients who have strange seizures have some kind of conversion disorder is unhelpful. You could flat out ask her what she’s thinking, when you bring back your timeline of your life. Because it might be a waste of your time if you don’t think that’s what it is. In the book I recommended there are a lot of patient descriptions of seizures, and I found that to be one of the most helpful things because then I was more able to describe my seizures to my doctor. Ultimately, that doctor still thought I had a conversion disorder and I needed to go to a different epilepsy specialist. If you think you have epilepsy, they should definitely be doing an EEG preferably a 24 hour EEG or longer, but they should at least be doing a simple EEG. Fainting and syncope is also a really shitty situation and the doctor should be taking that seriously especially if it puts you in danger I highly recommend that you keep advocating hard for yourself to get the help you need and if you try stuff that is for psychiatric problems and it helps that’s great if not, you have to remember that seizures only stop with seizure medication and eventually you might need to find a doctor who will try that with you. I really wish you the best. This is a tough situation, just remember that you’re not alone and this is a common occurrence. So keep your head up and believe yourself. Ultimately, you’re the only one who really knows what you’re experiencing what it’s like, and sometimes it’s really hard to explain. I hope you get some good help.

[@flowerpower9541]

​@@weeziii8193I have seizures, and your description SOO sounds like seizures, take this that you wrote out, and if you see a new neurologist (I think you should, and one who has experience with epilepsy. Make sure they do) show them. I have trouble communicating, and writing things down has helped me alot. Unfortunately when we don't have grand male, or other illnesses that they can "see" drs will definitely dismiss patients. It's an ego disease almost all of them have, believe me. Don't let their dismissal and disrespect stop you from getting the care you deserve. Prayers for you. Hang in there and keep your sense of humor!

[@wokeslayer577]

Thanks for sharing chica

[@arielonhealth]

Matame Hapedos Grateful you are watching 😁

[@chrissybutcher2917]

Thank you so much for sharing. You speak very well about it. I don’t feel so crazy about all my increasing déjà vu after hearing you talk about it. Sometimes it’s hard for me to tell the difference because I think some days I have them very often. It’s not as easy to tell them as it is when I go into a tonic clonic. I love many people but none of them understand my seizures and it’s very lonely sometimes. I’ve been very curious about CBD to treat it. Does anybody know much about CBD for TLE? I’m currently on Keppra for it and I think it does decrease my big seizures but I feel like the Keppra is making me sicker.

[@arielonhealth]

Thanks for watching. It's definitely easier to tell when you have a tonic clonic, and I doubted myself for years after I learned that deja vu was a focal aware seizure. But I really think that sudden experience, the feeling of the deja vu, and then how I feel afterward, are something that I can more clearly see now. I think I used to have them many times a day before I knew they were seizures. One of the tell tale signs for me is how I function afterwards. I often feel exhausted, I can't think, I can't make decisions like what to do next (which comes from "is it a seizure, is it not a seizure?". My doctor finally said to assume it was a seizure, and take action from that understanding-like call someone, take meds etc.). I often feel a bit off balance, and confused. In the time after a seizure, I don't "code" memories well, so I used to get lost and not really function well after, and now I can't really remember it all clearly so I can't tell you how many a day I was having, but you can have a lot. They were often triggered by my menstrual cycle. The increase would be in the Pre-menstrual time (up to 2 weeks) before my period. I finally wrote in on my calendar because I have PMDD, and with an increase of seizures as well, life was debilitating. Check out my info on PMDD if you are curious, or more about Catamenial Epilepsy-seizures affected by your hormones, and perhaps try tracking your seizures and your cycle and see if you find any connection.

[@flxffy_edits]

you literally just spoke all of my thoughts

[@abirose4875]

When I started getting seizures a number of years ago I never told anyone because I thought I was going crazy... strange deja vu with intense nausea and dizziness. It was only when that developed into tonic-clonics I got diagnosed. Originally seizure free for twoish years. The other day I think I had another one.... it is different but similar in its intensity. Now this feels crazy to me... but I could hear two voices talking to one side of me, my vision went funny, dizzy, headache... just really intense and strange and hard to describe. Different to what it was before but similar intensity so to me it makes sense it was a seizure. It sucks because I wasn’t too far off passing my driving test.

[@arielonhealth]

Abi Rose that’s really a bummer that you were close to doing your driving test. My partial seizures or focal aware seizures have changed over time. I’ve also had many different types. Auditory and visual hallucinations are very common. So although it can seem very strange that it’s very different, if you have a sense that it’s a similar feeling, then it probably is a seizure. That’s basically how I started to look at it because not all of mine were déjà vu. I got auditory hallucinations, visual hallucinations, a sudden rush is a fear and adrenaline, a feeling of impending doom and I did get jamais vu, which is the opposite of déjà vu where everything seems strange as in unknown. It was very intense. Trust yourself and like I said if it has that same sense and feeling, which it sounds like you think it does, then getting help and getting that under control is important. I am aware that somebody who’s never had a seizure will never really know what we’re talking about, and so in that case the content of the seizure is not necessarily as important as the overall experience when talking to a doctor. I hope that helps

[@abirose4875]

ariel on health yeah that does help thanks 😊 it can be hard when I don’t know anyone who knows what it is like, and the researching on the internet can only give you so much. So it’s good to know how other people find it as well. I remember when I first starting getting seizures I had no clue what they were so obviously I googled it... and you can imagine the strange results that came up. It was only one person on a reddit thread who said it was a seizure but when I saw it it just didn’t seem plausible to me so I ignored it. I completely see the value of more visibility about this, so people don’t spend years thinking they are going crazy.

[@arielonhealth]

Abi Rose Yeah my goal is to get this information out there so people don’t feel so alone and are able to figure out what’s going on a whole lot sooner. I was having the partial seizures for 14 years before I told anybody. I was already diagnosed with Epilepsy because of having tonic clonic seizures since I was 12 but I couldn’t seem to explain what else was going on and and when I tried, people made it sound crazy and so I just stopped talking about it. When I read other patients descriptions in a book I finally realized that it was another type of seizure. I wish you the best with this and let me know what happens if you like. You’re definitely not alone and your experience is real.

[@yetibigfoot7350]

If I'm in public and feel that awful anxiety..I find a bathroom. Even a stall away from people until it passes. Usually the handicapped one. Gives me room in case I start break dancing. Anyone else have a plan you use?

[@arielonhealth]

When I didn't know what they were, I often would get so scared and overwhelmed that I would go into a bathroom and try to deep breathe and get clear headed (which doesn't happen in minutes after a seizure for me), and then try to walk out into work of the world and act normal when I could barely think or be functional and I was scared. It was really horrible. Once I got my service dog, since I have no motor seizures, I would just stop wherever I was and sit or lie down with my dog next to me until I felt safe because I could think clearly again enough to make good decisions when I got up. He had his service dog vest on and people often would just assume I was okay and not freak out. That was really helpful. But that was once I knew what they were.

[@chaleebergren2814]

I’ve had it my entire life and wasn’t diagnosed til 26 and I’m now 27 I’ve been thinking I was just crazy my whole life and then one night my husband woke up to me having a big seizure in my sleep he thought I was possessed. They ran test and thought it was just a one time deal fast forward I’m 6 months pregnant with my daughter and I wake up on my couch with a bunch of ambulance people and cops and I had another big one. Turns out My headaches and “deja vu panic attacks” weren’t panic attacks I’ve had epilepsy my entire life and been having focal aware yoga to 20 times in a day and my moaning in my sleep was me having seizures all this time

[@arielonhealth]

Chalee Bergren WOW! That’s so intense. That sounds really scary being pregnant with your daughter and having a big seizure. That was always something I feared. I’ve never ended up having kids but partly because of my epilepsy. I’m sorry it took so long for it to be clear that it’s epilepsy. I’m sure you felt very alone, I Felt so alone because for 14 years I didn’t tell anyone about the “experiences” I was having. When I was 26 I learned about Temporal Lobe Epilepsy, then I knew exactly what was happening. I had tonic clonic seizures, which are also called grand mal seizures since I was 12, however I didn’t know that the other “experiences” were also seizures. Now I’m almost seizure free and haven’t had a tonic clonic seizure in 17 years and my life is so much better. I have lots of trauma so I have PTSD which I would not be surprised if you get from having these and not knowing what they were. Partly the emotional toll that it takes with people not believing you or dismissing you, and partly just how crazy the experiences are and the physical toll. It’s terrible how often that happens with this type of epilepsy especially. It’s called medical PTSD specifically. I have a video on epilepsy and PTSD that you might want to watch. Well I’m so glad you found out that they are seizures because now it means you can treat them. That’s the best part about knowing they are seizures. Also you can learn how to deal with them The best possible way. Either trying meds or learning to live with them and manage things so that you’re safe. I know this is hard. But you’re not alone. I wish you the best. I have continued to learn as much as I could about it and then I’ve been able to live with it a lot better. It takes a lot of advocating for myself and knowing information to really get my needs met. It took me trying 12 meds to get where I am so it’s not always easy but it’s definitely worth it. I’m glad you found my channel and I’m sorry you’re going through such a rough thing. Be in touch if you need to. I really do think it will get better though.

[@soupsnakes424]

You haven’t posted a new video in a while, I hope you are well. ❤️

[@wildspritzee]

ive been having something and im not sure what it is. for me, the best way to describe it to people is like when you are tired and your brain forces you to nod off uncontrollably, except im not tired, and that its almost like a rush of electricity in my brain that makes it feel like its doing a flip, and i cant hear briefly. it only last a few seconds but it terrifies me and sometimes i get them in clusters. anyone know what it might be?

[@popularunity386]

I had partial seizures since young (very strange and subtle seizures, also migranes but without grand mal until recently, at least when i was awake) and i'm still trying to figure out if some things that i feel are also seizures or not, because doctors try to help but without the actual experience of them dealing with it or without specific vocabulary to make it know how it feels it is actually very difficult to communicate. The thing that got me worried was knowing that people don't usually have deja-vu every week or month (and they dont have side effects before or after the deja-vu), after knowing that and speaking about it and some other "sensations" i discovered that a lot of things that happened to me were not usual, and i stopped talking about it and started reading dozens (and hundreds of abstracts) of academic studies about different things mostly those with the keywords "strange+emotions/sensations" and "deja-vu+anxiety+vomit" and after a time in denial (and losing consciousness two times after a deja-vu) i requested a visit with the neurologist to explain it, and he said it was because i smoke cannabis (in fact i smoke cannabis because the episodes of deja-vu, vomits, migraine, and waking up all wet stopped when i tried it for the first time...). I was lucky and that doctor was replaced by a new neurologist that is more open to read studies, listen and doesn't have some prejudices, and i feel more comfortable explaining to her some of those things. Some things that could be auras but i don't know since it's a lot different that what i've read about (but i'm not having them since i'm taking the meds): Sometimes i get blind progressively from the periphery of my visual field of vision to the center (like a tunnel, sometimes i get totally blind sometimes it stops before reaching the center of the field), the blind part is close to the tv static or a black/white/gray at the same time. Another episode i have since kid is seeing white/black/multicolor light dots (all those colors at the same time) and the dots seem to come towards you, they are very small in size like those fruit flies but they seem covered in glitter, and they are a bit elusive, you can't focus in one particular dot, this episode also comes with a bit of dizziness and sense of euphoria, revelation or authenticity and all the colors of the place i'm in seem a lot more vivid than before and the sunlight (even when i had this episode in cloudy days the light was so warm and made it all fit together so nice). This ones i'm pretty sure they are seizures: Sometimes listening some music i dream awake (hallucinations, but they don't mix with reality it's just like photos), it comes with a sense of infinite happiness. I also have that "emotion, that is not good but it isn't bad and doesn't have a word associated with it and there isn't anything close to this emotion", i normally get the same look of "wtf" when i try to speak about it... My deja-vu also come with a feeling of "oh, this looks familiar (...oh, no, not again...) this is it, here we go" deja-vu inside a deja-vu inside a deja-vu (...), and most of the times in the middle of it i have to rest horizontal and rush to the toilet at the end to vomit, sometimes (most of the times)... This is less usual but also some anxiety and panic attacks that come from nowhere (but sometimes it has been triggered when i've felt strong emotions, but not always, emotions also triggered me some deja-vu episodes). And always after those episodes it's like they have happened a long time ago. Sorry for this long post and for butchering the english language :( PS: I also have problems understanding language sometimes for some seconds i understand each word but i can't put them all in context, and it becomes overwhelming...

[@arielonhealth]

PopularUnity I’m so glad that you started reading about seizures. Some people never figure it out. Some of those definitely sound like seizures especially the déjà vu the nausea and the anxiety and auditory hallucinations. The visual hallucinations may be different than what other people see, but that is a pretty common one also. I would say that that is a very neurological experience and probably not a psychiatric thing. Also something that is really important that I realized recently, is that picking apart the anxiety, fear and stress that comes from having seizures, is almost impossible because it’s mixed in with the seizures that produce anxiety and fear. Stress can trigger seizures. That was definitely one of my biggest triggers always. Often times I would get very emotional, and after a big upset I would have a tonic clonic seizure the next day. Even though a doctor may want to pick it apart, if you’re not experiencing What you did before because you’re on seizure meds, then most likely it’s a seizure. I don’t think it’s necessary to figure out which one is which. It’s just important to know that you’re having seizures, and that anxiety and depression are extremely common for people with epilepsy. Also the PTSD that you can get from years of seizures, can trigger more anxiety when you have them and have been unsafe so many times. For me, having no diagnosis for 14 years was really traumatic and I didn’t tell people about them. So I felt very alone. The before and after stages of not feeling normal such as in the way you described it with the déjà vu, are really what helped me to see that my experience was different than what other people were talking about. People always said they had déjà vu and I couldn’t understand why it didn’t scare them. Lol, wish you the best

[@tiffanyheilman6119]

You literally described word for word what my 7 yr old daughter tells me when I ask her what it's like when she has an episode. *TV static *light/color dots *dizziness *emotional *deja vu Her EEG shows abnormal discharges firing off from the occipital and temporal lobe every 1:45 seconds. Idk how to help her 😕 the meds the neurologist tried made her miserable

[@popularunity386]

@@tiffanyheilman6119 side effects of the meds also made me sick and it didn't worked that well (i was prescribed with Zebinix + keppra) but recently they changed it to a nightly dose of Zebinix (eslicarbazepine acetate) and a nightly dose and another one when i wake up of Vimpat (Lacosamide), and it much better i have almost 0 side effects now and just 2 partials (just puking, no deja-vu, no dots, no dizziness, nothing it works wonders). Try to ask to her neurologist to try other meds until finding her dosage and the right medicines for her. Be strong, support her and be happy and make her happy it's the only thing you can do :)

[@account7020]

So after years of experiencing focal aware seizures, about 3 weeks ago i experienced two full blown seizures. Of course this scared my family and me so i was placed on Keppra. I have not had any full blown seizures since taking it and I also noticed that my focal aware seizures have also gone away. Can I ask you if you have tried taking medication and if you have, have they ever lost their effectiveness after a certain period of time?

[@jaideelatham8583]

Thank you🙏🎉

[@arielonhealth]

JD 91 So glad I can help 😁

[@RavensHouseOfTarot1111]

That’s the best idea you should try it because I mean even my epileptic boyfriend who has tonic clonics doesn’t get it.

[@jaredhull2337]

The hardest part is I have panic attacks, or what I'm told are panic attacks and am scared they are seizures. I have tonic clonic seizures but have been medicated for 2 years and haven't had one but since having my last seizure I've had horrible health anxiety. I've had CT Scans and MRI done and they came back clear but am still worried that because they did the MRI without contrast that maybe they are missing something

[@arielonhealth]

I have always had a clean MRI and CT scan. I have both tonic clonic and focal aware seizures if not on meds. If you are still having seizures, it doesn't mean anything is wrong other than your Epilepsy. I know it's scary to think maybe you have something worse, but idiopathic (meaning the cause is unknown) is very common. I have had 5 Brain MRI's, about 10 CT scans, and multiple EEG's including a sleep-deprived and multiple video EEG's. Nothing shows. I even had a 3 Tesla MRI which is a higher resonance. So, you may just be having seizures and not have something else wrong. I know it's not necessarily just easy to stop stressing about stuff like this. But, the seizures themselves are already hard. So, if you can get help with anxiety, then it can become clear if you are also having seizures that are similar to panic attacks. Once you know that, you can treat those as well. I am on psych meds and 2 Epilepsy meds. It is all important and valid. I hope you get the help you need.

[@jaredhull2337]

@@arielonhealth Thank you for your response. I am trying to check out biofeedback for my health anxiety so maybe that will help. One more question for you though, what are your symptoms with the focal aware seizures? Do you ever get mouth spasms or weird sensations on left side of face?

[@arielonhealth]

jared hull I don’t personally, but there are definitely some like that. One side of the face or body is common because of where the seizures are starting in that case. My symptoms are in my videos “Descriptions of Simple Partial/Focal Aware Seizures “.

[@thesingingalto5825]

I have not officially been diagnosed but my symptoms are obvious I think. It starts with a smell of ammonia hrs, days or even weeks before it happens. I will stop and it feels like I'm going out of my body. It's quick and very unpleasant and I'm very tired after. When I feel it coming, I lean back and I'm like whoa! Then it's over. I'm keeping track because I think it may center around changes in my hormones during my cycle. The occurrences had increased when a cyst had formed on my ovary and was bleeding for a yr. Has decreased since surgery.

[@arielonhealth]

The Singing Alto I’m glad you are keeping track. Mine are directly linked to my hormones. It’s called Catamenial Epilepsy when that happens. I take Bio identical Progesterone to lower the crash in my hormones before my period, and that decreases my seizures. Keep looking it up, I’ve wanted to make a video on that, it’s on the list. 😁

[@thesingingalto5825]

@@arielonhealth oh wow! That's interesting! So I guess I'm not crazy lol. So bio identical hormones are natural instead of hormone replacement therapy? I've always had the hunch that my progesterone definitely is not enough. I've heard of something called white yam cream

[@arielonhealth]

The Singing Alto Hi! Yes, wild yam cream has progesterone. I have a prescription for progesterone caps. I take it in a cycle. It’s been hard to get doctors to work with me on it. My neurologists won’t ever. Which really pisses me off. I have to see a functional medicine doctor who is also an Ob/gyn and pay out of pocket for Appointments. But it really helps, so it’s worth it for me. My other gynecologist said if I gave her enough scientific info, she would consider it. 🤪 But I’m actually going to do that now bc I can’t afford to see the other doc. I have PMDD also, and my seizures increase and with the PMDD it’s awful. I have a video on that I can post here. It’s talking about the progesterone cycle I do.

[@arielonhealth]

The Singing Alto I had to search hard on Catamenial Epilepsy bc there are hardly an studies. I don’t have the energy to find the links, but if you research you might be able to get some help. I actually came up with the progesterone idea after trying 3 different types of birth control, trying to regulate my hormones. But basically, the progesterone crash at the end of your cycle is a big deal. Progesterone helps lower seizures, estrogen can increase them. So it’s a tricky thing.

[@arielonhealth]

The Singing Alto kzbin.info/www/bejne/rmrFaI2Fq72fY68

[@kassidyquintessaamaryllis6496]

I really do beleive I have this. Through the depersonalization and derealization and the fear, confusion, anger, intense feeling and being unable to recognize things or feel like you've lived it before happens to me a lot. I hate the weird sounds and smells amd the crying and laughing and tiredness. The visuals are wacky and are simular to Alice In Wonderland Syndrome. Things stretch and shrink and get bigger and swirl. I have trouble with migranes without really the head pain. I call them auras. And sleep paralysis that lasts for 3 hours because my brain I think is overactive in my sleeep and I'm pretty sure I've convulsed in my sleep. I wake up always wanting to call 911. Like that's the time I want to do it. So I know it's bad. My MRI came back normal so my doc is referring me to a psychologist. I think its because I told her I hear voices i know aren't real. And I have weird thoughts like panda bears go to mars and intense psychotic feelings lol. The immense pain in my body feels electric and I get the convulsing happening when im aware or just tiny little tics. I went to the eye doc. Everything was fine but now my depth perception is way worse than it was from 6 months ago! I wonder if that is part of it. I wish my mind was the same and I can remember and talk and be an artist the same

[@arielonhealth]

I hope things start to get figured out and get better for you. I wish you the best

[@kassidyquintessaamaryllis6496]

@@arielonhealth the other day I had an ER doctor actually beleive what I was going through! I still haven't kicked the Epstien Barr Virus but we understand that viruses can do some pretty wacky things to the body!

[@XYZ-sq7ki]

@@kassidyquintessaamaryllis6496 I had an episode while having EBV. If you get EBV frequently I highly suggest asking ur doctor about Dysautonomia and POTS … or related neurological disorders (if you have ANY chronic symptoms) …. Seizures are also related to these disorders as is EBV

[@ragsdmc7789]

I have different types and people cant understand and they do try to make it a mental thing!!

[@duncansowders7607]

This is mine to a T, thanks

[@bridarby2299]

Hey do you still experience the head vibration ?

[@arielonhealth]

I would say I call it a head vibration but it doesn’t really make sense it’s almost like things go muffled and I have kind of this feeling of buzzing but I guess I’ve described it as kind of a head vibration before.

[@tonyjulien1028]

In my lifelong ever-intensifying condiyion of temporsl lobe epilepsy, I have never seen a "proper" description of a focal seizure. One thing's for sure: every single one of them is a DREADFUL experience. I've overdosed on my medication, off and on, in a sometimes futile attempt to ward off the occurrence of them. That's how much I dislike their disconcerting effect on me.

[@my5kidoz997]

Hi thank you for uploading this it gives me a better perspective on what ive always assumed or wondered what i t could be my daughter alondras episodes could be feeling like ive always known that she knows or feels them coming on and shes 3 going on 4 shes medical complex born with several issues lung gastro heart list goes on but at 3 months we took her to neuro due to her not opening her right hand when we left with a diagnosis of possible infintile spasms and put on pheno but everytime weve done mri only 1 to date and now 3 eegs they can never catch any in her test except for abnormal wave activity slowing to be exact of her waves yet each time weve attempted removal of seizure meds her episodes have changed and gotten worse after a year of going back and forth of trying to get her diagnose on her 2nd bday in choc they ended up agreeing that she had seizures in past but what has happening then was more dystonia due to a syndrome possibly well after we did genetic test they changed it to movement disoder anyhow in march while on a second attempt to remove her of phenobar my parents where watching her and she had an episode which then they stated it was a seiuere she became un able to get to respond for more than 5 hrs and after all was said and done we went home with a diagnosis of altered mental state and partial idiopathic epelipsy with seizures of localized onset and then they swithched us docs and this new doc put her on keppra and it just made it all worse to the point im in invistagation with cps she stated i was fabricating everything altho i had letters from therapist and stated that alondra didnt have not only seizures but also distonia and yet here we are months later and my daughter isnt only at square one but also worse in pain that ever but she does tell us im not feeling good mami my head and eye hurt or my hands feel funny and will sometimes wince or even rub her face and prior to her getting one she roams around fussy gets so irritable and at times is just not making sence then she will slowly begin to as slow down almost like slow motion video and begin to slur and at times mid way stop and then repeat herself again and then she goes into one sometimes she can speak other times she can and she tries to hide it from us and will attempt to continue moving during it aswell after it passes she is left with involuntary like reflexes or like jerks of her legs or as of restlessness sort of and yet no one is yet to diagnose her properly last night i couldnt go to bed becuase she kept screaming im scared and bolting up and sure enough 30 mins later she stiffened but she cries in pain as well they have now gone as far as stating its her withholding her bowels stating shes constipated becasue sometimes she does grab her crotch area and says during it im doing it im doing it and or peee peee yet its not true im sorry for rambeling on im just frustrated and sux not being able to help your child when you see them suffer and its painful to them and they cry out help me thanks agian

[@arielonhealth]

My 5kidoz I am so sorry that that’s happening to you the worst part is that all those different people said totally different things and none of them were helpful. And when people disagree and you go back-and-forth but they don’t look at just what works. I think it’s medical malpractice to not do what’s necessary to help a child not hurt or be scared or be in pain and if that means giving her a seizure med then that’s what they should do. I don’t know if it’s possible for you to see someone who specializes in epilepsy but like you said you’ve seen so many different people and they come at it from a different angle. If you really think it’s epilepsy and that the Phenobarbital works, I’d say just keep trying to find somebody who will do that. I had a Doctor Who decided it was bipolar instead of epilepsy and would’ve taken me off my epilepsy meds which is just stupid to say the least because they work really well. I did have to find a new neurologist. Now I see another Epilepsy specialist and she actually listens to me when I say what works and not. I have a normal MRI and EEG. They do not have to be abnormal for you to have epilepsy. That is a misconception and I making a video on it and I have a link on it but if you look up the Epilepsy foundation, they talk about it because doctors act like they can just dismiss you if those tests are normal. Sometimes even a doctor like a PCP who really gets what is going on with your daughter and sees it more on a regular basis and really gets to know your family they might end up being The one to help you get the right meds because they are not trying to fit it in a box they just want her to get better. Anyway, this reminds me of my life and how horrible it is to have people just throw you around and say stuff is this or that and not actually listen to you or ask you what you feel and not pay attention to what works and act like it’s all in your head and on and on. I wish you the best and if you want to let me know if you’re able to get any help I’d love to know. Blessings

[@my5kidoz997]

ariel on health this means so much your absolutely right and this I expressed to the neuro and she supposedly was a movement disorder doctor as well anyhow we got in at standford and we opted to begin the keppra wein either way I knew it isn’t the correct meds it’s improved her spasms but she’s still having them and she had a seizure the other day she’s on baclofen meanwhile until we go see at standford dr Jennifer O’Malley in person hopefully in September but till then I’m hopeful for now that she won’t begin having episode and if she does then finally they will begin to believe due to her once again stop in meds causing another big seizure hopefully this time around she won’t get like last year where she became unresponsive for hours and looks like cps is closing the case so that’s great I will definitely keep you posted and sub already I appreciate your support 😊💜I’m getting ready to upload another video of her episode from yesterday and planning this week to upload a video explaining our situation in new to this actually a little lost on how to even begin but will figure it out and speak from the heart anything for my warrior and many others like yourself spread AWARNESS 💜💜💜💜take care

[@arielonhealth]

My 5kidoz that’s so great that you’re feeling more confident. I just wanted to say that I had a really bad experience with Dr. Graber at Stanford. Also with the neuropsychiatrist he works with. So I would not recommend him. He basically wanted to prove he was right once he got the idea in his head that I don’t have Epilepsy. I see an Epileptologist in Sacramento now and I really like her. I had to try a lot of meds before I found the right combination. So that’s also important to remember. I am on Keppra and Lamictal now and that’s the best combination for me but it’s totally different for every single person. The trial and error is really worth it for quality of life I think.

[@my5kidoz997]

ariel on health absolutely I think the same and yes omg that’s what happens at UCSF with dr grijalvo re garding my daughters focal seizures and the dystonia diagnosis due to the eeg being normal she said mind u she was on the keppra during the eeg and she didn’t have. Any of those episodes and again this has always been the case with alondra the eegs show abnormal waves or slowing but not the siezures and yet she still had to be right and as I wrote a Letter calling her on the questions she wouldn’t explain she filed cps case insane thanks for ur support and advice have a great day luv

[@arielonhealth]

My 5kidoz temporal lobe epilepsy can occur with a normal EEG. I think it’s kind of crazy that doctors don’t tell anyone and information is not out there saying that if you’re not having a seizure while you’re on the EEG machine you may have a clean EEG, and you can still have epilepsy. Some people have seizure activity when they are not having a seizure and others don’t. I think it’s because it’s easier to diagnose someone if you have an EEG showing seizure activity.

[@sheilamoradi9231]

I know exactly what you mean I have epilepsy for 52 years I have tumors in my brain and I know exactly what you mean

[@daimenwhite2284]

I’ve been keeping records of a few experiences I’ve been having that seem to be getting worse over the last couple years. I’ve kinda been considering I may be going insane, I’d like it if you guys would let me know if any of these sound familiar to you. I was laying in bed and my ears started ringing insanely loud, I felt extremely fatigued as if the bed was trying to pull me through it, I started having muscle spasms all over my body, tiny twitches, not noticeable by anyone but me. That was followed by an intense feeling as if my body was trying to cry, I could feel emotions everywhere. Then I could smell someone cooking hotdogs right next to me, shortly after the hotdogs, I forgot how to breathe. I had to practice breathing and I kept forgetting to continue. The insane fatigue hit me again and I started losing the ability to concentrate (I was trying to take notes of what was happening so I could make sense of it afterwards) My notes stopped there, however I remember being able to feel my brain think. It felt emotionally good and somehow uncomfortable at the same time. That’s the first event i recorded. I was watching tv with my girlfriend with the lights dimmed. My ears started ringing again so I told her something might happen. I couldn’t focus on anything except the picture of the tv. I told her it was the most beautiful picture I’ve ever seen. I couldn’t understand the words on the tv nor what she was saying at the time, all I could understand was the beautiful colors. It started getting more intense to the point I could feel the emotions of the colors. I started coming out of this one and felt slightly dazed and light headed. It probably lasted five minutes. I paused the tv to tell her what I just experienced, we booked an appointment with a doctor directly afterwards. Some other things that I have issues with: I have been caught walking laps around the building at work, it felt like I had walked into a room and forgot why so I was searching for something to remind me. But I probably would have been stuck in that loop until something stopped me. I will go shopping to grab a couple things, after I’m done I will get home and I don’t know if it took all day or if I was gone for a couple minutes. It’s as if I left my brain somewhere along the way and when I get back to it I remember what happened, but not when exactly. Sometimes things around me look strange, like they’re an important part of a video game. Things stand out and seem somewhat foreign. I seem to zone out quite a bit, but not in a way that I can’t still talk. It’s just like my brain is struggling to stay on the same page. As I’m walking around sometimes I feel as if I’m seeing everything I do from behind me. Like I’m in control of a zombies body. I see everything that’s going on, but I’m seeing it through a computer screen. As you guys can imagine, my doctor looked at me like I was absolutely insane. I’ll be going to a neurologist shortly to see what may be going on. I’m sorry about posting a novel, but I wanted to see if it’s similar to anything you’ve experienced and if so maybe someone else will be able to relate to it as well.

[@daimenwhite2284]

I’d also like to add that I’m not entirely sure I’m not making it up. I kinda feel like all of this happens, but I also feel like it’s in my head and I’m making me think it’s happening.

[@arielonhealth]

It sounds really distressing. Just the fact that you were out walking laps when that was not your intention, or suddenly you feel like things are happening in front of you and you’re just watching them, and feeling strong emotions, is a terribly difficult experience. And I just wanna validate that whatever the reason for it, whether it’s psychiatric or neurological or both, you’re still having to go through it and that makes it real. It also makes it exhausting scary and something that you have to deal with in your life that is a big unknown and very stressful. Doctors are definitely going to look at you like you’re crazy because most temporal lobe epilepsy seizures sound crazy to them. I don’t know if these are seizures or not, some of the aspects sound neurological such as the changes in light, the experience of being zoned out, sudden smells etc. Some of those things sound a lot like depersonalization, or other mental states that happen when you get triggered into an emotional flashback. I don’t know if you’ve had trauma and whether or not you know if you have PTSD, but the part about watching yourself from outside of yourself and watching your life sort of happen like it’s a video game is pretty common for depersonalization and derealization. I did a video on PTSD and epilepsy that’s here on my channel. You can check that out if you think maybe this pertains to you. Also I’ll link to another video because it’s really important that whether or not it’s only a seizure, a lot of times it can be a combination of seizures and traumatic experiences that trigger PTSD and other mental states. I hope you just remember that whatever anyone says, this is real you’re having to deal with it and it’s hard and you need help so whatever that means a doctor being a jerk or judging you or whatever is not helpful and getting a different doctor then is a good idea.

[@arielonhealth]

kzbin.info/www/bejne/jHWxhaiDhNuYoJY

[@arielonhealth]

Daimen White kzbin.info/www/bejne/iqK5hoSvm9dpd8k

[@wewearmaskshere2577]

Yes!!!!!!!

[@thesacredwild1020]

omg someone saying you needed to protect your energy ;____;

[@ragsdmc7789]

Im sorry 😞 they confused u so. Thats also why I live in a place of basic truth and facts because of all of the nuanced episodes that i couldn't control.

[@nicole4659]

Ok i know what u are talking about. But u are completely butchering this..

[@syncerebaca11]

How is she butchering it? If you are going to make a statement, where’s the proof? Not trying to be rude, I’m just curious

[@JudyHarris-en2kx]

You are good Heather good actress you are nuts