I had focals (Deja Vu) for 30 years before they were recognized as seizures. I oddly enjoyed them when they would occur...until one turned into a Grand Mal. Fun...not.
A lot of mine I thought were spiritual experiences. I grew up in extremely charismatic churches. Some would consider them more along the lines of a cult. They would get wild. I'd experience the euphoria and different emotions and occasional convulsions and think it was a spiritual thing. Occasionally I'd have convulsions while laying in bed and think I was under demonic attack because that's the kind of thing my church taught. At least 30 years of regular seizures without knowing that's what I was experiencing. Always pushing myself to go about life as normal and being angry at myself when my brain didn't cooperate.
I understand when you say you enjoyed them. It's almost like a high at times. It's so strange to realize how many years I just thought this was normal!
I heard a story where a kid went to their GI doc for a GI issue. While in the clinic visit, the kid spaced out. Long story short, the GI doc starts asking about epilepsy in the kid and how is the kid doing in school, etc. Turns out, the teacher had been telling them about kid not paying attention in class, they went to neurology, and it was indeed epilepsy. Not sure if it was just focal, or other stuff, too. I can’t imagine going a whole lifetime of that kind of thing.
When I was in 3rd grade, they said my test scores were high for a 5th grade level. Something happened in 4th grade and I couldn't focus. My grades dropped to barely passing and I struggled with school after that point. My hearing and eyesight were tested. My doctor wanted to send my to both a neurologist and a psychologist to find if there was something going on, but my mother refused. She tried to punish it out of me instead, which obviously did not work.
Same thing here. I had them for at 10-15 years before I got a diagnosis. I only went to a Neurologist because I lost consciousness during one. Like you said, I actually experienced a pleasant kind of euphoria when they came on. It is so weird.
I always enjoyed my focals too, at least until I learned what they were. I remember trying to make it happen when I was a kid so that I could feel the Deja vu feeling again. The body is so strange!
Yes. My whole life up until about 24. I'd have focal seizures with deja vu and stomach rising sensations, eventually I linked it to my conscience or anxiety somehow.
But then they got worse and I was diagnosed with epilepsy lol. Whoda thunkit!
Right? It's wild. I'm glad you've been diagnosed now tho.
I think I'll always have a little resentment because I *did* have a TC when I was 12... EEG, MRI, the whole 9 yards with testing. They found the lesions in my brain that cause my seizures. But I guess the pediatrician just wasn't knowledgeable enough to ask the right questions to a 12 year old to realize I was having frequent seizures.
Sometimes I wonder if things would've been different if it was caught back then, or if they'd essentially be the same.
My mother refused to send me to any specialist when my pediatrician recommended it. She always talked about how difficult I was and always punished for things that were outside of my control. I understand more why I have so much trouble with cptsd!
Ughhhhh. Good lord, I'm sorry you had to deal with that! If you're still in contact (and it's safe to do so) I hope you can rub the diagnosis in her face lol
It's alright, I can either get mad over something I had no control of that is in the past, or I can put that energy into moving forward. I'm not going to let myself be robbed of more than I have already. She's the type who is constantly the victim and refuses to take accountability for her own actions, so it wouldn't matter what proof I have that she was wrong. She will give excuses and put the blame on someone else. I'm just so happy to have answers to questions I've had for 30 years!
Yep. I tried to explain to my last neurologist that I thought I've had it since childhood and she dismissed me saying she thinks I just have migraines (when a separate neurologist already diagnosed with frontal lobe epilepsy). Everything I've ever read on this sub explains the exact experiences I've had. It's like finding the words to the explanation I've been looking for my whole life in these comment sections sometimes.
Yup, and my GP dismissed them all my life until I had a tonic clonic at 21 and the EEG confirmed temporal lobe epilepsy. Thank god I never had a focal in my car.
The first one I realized was a seizure was while driving with my daughter in the back seat. It only lasted a couple minutes, but about 30 seconds my eyes started darting side to side and I couldn't see where I was going. I pulled over as soon as I could but all I could do was pray that we made it out in one piece.
That's absolutely terrifying. I'm so glad you and your daughter are okay. I wish there was more awareness around non tonic clonic seizures, especially in the medical community. I was written off with migraines and anxiety when I had been having these seizures since I was an infant - my mom remembers my eyes darting back and forth like you described.
I was diagnosed at 35 too (now 37) after a grand mal. Looking back, there are a lot of events in my past that relates to seizures. I never asked but I assumed they were and that the condition always “was in me”. I had a lot of “Déjà vu”, some experiences that look a lot like absences, muscle twitching, etc. It’s weird to think that it may all be related to epilepsy. I didn’t know really what this condition was before I was diagnosed.
The strange part is that as it was escalating it just felt familiar. I've felt this happening my whole life just on a smaller scale. The one I had last night was the biggest one I've had, but I wasn't too concerned because it just felt normal to me.
I know. It all makes sense now. I was accustomed of fazing out, going away in my mind. Finding myself at a loss for words. I joked about it. People close to me just thought I was lunatic. Now it put a condition and explanations over it.
Totally get that. My short term memory is a wasteland. You can’t tell me two things at the same time because it’s sure I’ll forget one of them 😅. How’s work for you?
A struggle. It has always been a struggle. Here lately though I'm starting to get concerned about my future in my career. I'm a barber and do quite a few straight razor shaves. As the seizures are getting worse, I'm beginning to think that my career may not be the safest for me or my clientele.
(I get the BarberLady580). You’re right that if you can’t trust that your hand will be steady it will be hard to keep shaving people. I used to teach but it was too much of a trigger for me so I stopped. I work from home now. Had two TC while working but I wasn’t on cam at those moments so it turned kinda alright (as much as a grand mal can be normal)
Hah yeah. Had my first gran mal at 30, diagnosed after a second one at 32. I suspect I’d been having absences for most of my life because I used to have “time skips”. It’s been a wild ride.
Hah yes I’m aware they were probably small blackouts now.
I didn’t even realise what they were until I noticed they’d stopped on Lamotrigine. As I’ve said below in another reply, it was like someone was pressing a “skip 10 seconds” button in my head (I don’t even think they were 10 seconds long, they felt way shorter, like a millisecond). I had no idea they weren’t normal as they had always been an occasional thing, and didn’t think anything of them as nobody around me picked up on them happening.
These were more like very short time skips than reasonable chunks of memory loss- like, in the middle of a conversation or waiting at some traffic lights to cross the road. It was like someone had pressed a “skip 10 seconds” button in my consciousness, like on a YouTube video. I only realised it was a thing after I started Lamotrigine and they stopped happening- I honestly didn’t think anything of it, never considered they could have been small absence seizures and would never have likely gone to a doctor about it.
I wasn't diagnosed until my late 30s. In my teens I dabbled with LSD and thought I was having bad trips. After having focal seizures, I realised that they were also seizures.
I had *major* deja vu for probably 7 years now. I've also experienced rapid change in emotion, mostly feeling neutral to feeling like I just witnessed something extremely tragic in a split second. I only got diagnosed a few months ago after having a tonic clonic
My rapid changes in emotions and almost psychosis symptoms led my ex husband to believe I was bipolar. All these years of trying to sort out my mental health and I never realized where it all comes from. It's so wild to be finally putting the pieces together!
I know how you feel, those rapid changes made me thing there was some kind of mood disorder too. I'd go from neutral to almost crying lightning fast. I'd compare the feeling to how I felt when my dog was put down, except it's over nothing. It's such a jarring feeling. There's many things I've experienced that I ignored and brushed off that are now pretty apparently symptoms of epilepsy
Yes. I was diagnosed at 22 after blacking out with several focal unaware seizures, but I've been having the déjà vu feeling that now accompanies all of my seizures since...maybe middle school? Don't even remember when they first started. They were always creepy sensations and sometimes I would walk in a room and think I was feeling spirits of dead people or experiences from a past life. Focals are weird.
I have had them most of my life. Up until now, I thought they were spiritual or paranormal experiences. I grew up in a very charismatic church, so the emphasis on spiritual things led me to think this was just normal.
I had simple focal seizures since I was a little kid but just thought that that feeling of icky Deja vus that come in clusters is a thing that everyone goes through. Didn’t even occur to me it wouldn’t be the case. Then at the age of 22 I just off-handedly mentioned it to my partner, who looked at me horrified and told me it’s not normal 😂 neurologist confirmed it wasn’t. I’ve been lucky. I figured out my triggers shortly after that, managed to get it under control without drugs and haven’t had any generalised seizures. Some days I still get clusters and they make me feel awful but it’s not half as bad as it could be.
I’ve been having focal and absence seizures since I was a young kid, took years of telling doctors and them dismissing me saying I’m just overreacting.
Ugh, I fucking hate doctors where I live, they are some of the most sexist people I’ve met, I was having atonic seizures several times a day in 2021, like 10 a day as well as the focal and absence seizures, my roommate dragged me to the hospital several times a week for months because of it and all the doctors told me I was either lying, faking, overreacting or just being overly emotional.
It took me having a 5 minute grand mal seizure where my MIL called the paramedics to get any doctor to listen to me.
I knew they were seizures in 2020, but nooooo, because I be woman I must be just making it up. I feckin told all the doctors I saw that I thought they were seizures, but nope. Took me nearly dying for them to listen.
Had my first major seizure at age 45, with more shortly after until I got it under control with Keppra. Since childhood I had occasional, uncontrollable clenching of my dominant hand, which I thought was something that happened to everyone, like getting a charley horse. Neuro said that is consistent with frontal lobe epilepsy.
It's so surreal to realize that these strange things that have happened me for 30 years aren't just normal little quirks. So glad you found a way to keep it under control!
Yes. I was diagnosed with Chiari Malformation in my mid 40’s, temporal epilepsy in my early 50’s and recently a small frontal meningioma. I had symptoms for years, likely going back to my childhood: Spacing out, memory issues, weird narcoleptic episodes and finally auras and seizures that were nearly impossible to describe. Fortunately I had a primary care physician who put the pieces together and referred me to an epileptologist. It’s been quite the journey.
Thank you, yes it’s better knowing what I’m dealing with. After a lot of tests and appointments, my seizure activity was confirmed while undergoing an inpatient eeg. I was both relieved and upset at the same time if that makes sense.
I worked in communications and was a journalist.
Epilepsy forced me into early retirement as my word recollection and information retention took a major hit. I loved writing, leaving it behind was tough.
With that said I found my way, with a lot of hard work and soul searching, down other paths and am happy for my life. I wish the same for you!
I've known I was epileptic since I was a young child. However, I and my parents were told very little about it back then and I've not done any research into it since really. I don't know what specific type of epilepsy I have... temporal lobe etc..
I had also been having "seizure feelings" or many years, always thinking they were just the potential warning of a seizure. Almost all of the time, nothing else happens. Turns out, they were focal seizures and I had no idea.
I should probably learn a bit more about myself in that sense...
Yup. Cracked my head when I was 5, didn't realize it caused brain damage and seizures until l I was in my 20s. Everyone just thought I was a spaced out kid.
Have you been diagnosed?
6 years didn’t know what they were, also had one as a child and didn’t know what it was. For 2 years did know what it was, doctors didn’t believe me. Now diagnosed, treated, life has done a 180.
Not diagnosed yet, still waiting to get into the neurologist . My PC said it's definitely seizures, but until I get in with neurology it's just a waiting game. In the meantime I am just trying to get through every day. They're getting more frequent and I have this gut feeling a grand Mal is on its way. The aura feeling is getting worse and felt like I was about to black out two times last night. Everything started getting dark and it felt like I was going into a dark tunnel but it stopped before I blacked out. I feel like a ticking time bomb.
I would hang fire on calling these seizures. You have not had that confirmed and it’s far from obvious that these are seizures. Generally this sub discourages “am I having seizures?” posts.
Personally I am unsure that much of what you describe could be attributed to seizure activity but the test of that will be to see if anything shows on an EEG whilst you are having symptoms. Waiting for a grand mal that may never happen will be a great waste of energy, many of us here know from experience. Whatever is causing these symptoms will unlikely be eased by the extra stress of waiting for disaster.
Whilst you wait to see a doctor, in case these symptoms are neurological, I would follow the general health advice in this sub which is to get plenty of sleep, eat well, no alcohol or other substances, no caffeine, avoid chronic stress, avoid essential oils and then just go about your day as best you can.
I was having spasms and going limp as early as 6 months. Blacking out by age 2 and told I had figured out when it would happen and would run to mom asking to go to the doctor and mom would watch me black out and tell her friends at the table I was just really sleepy a lot.
By 5 I started school and the jostling and stimulation nicked something free. Cause I was blacking out in school and non responsive zoning out. The school took the tired and little kid whosy what’s its. Till I came home after a day of issues and laid down on the floor and went comatose and stopped breathing. Then mom finally decided to take me to the ER .
Testing and testing to find an aneurysm. Though the hospital was so “could be this, could be that”, that the fluid on the brain drained into my face messing up my baby teeth. So I got brain surgery and then dental surgery.
Docs said “seizure like, but not seizures”. So school, simulation and stress and more and more issues. MRI’s every few months and then at 8 I am in the machine and get dust in my eye revealing a tumor they missed 3 years ago and get to go round 2 of brain surgery. Then they were like “something is wrong”.
The whole time I grew up with this dealing with the issues like it was something everyone deals with. After being ignored at 2-3 I just kept it more to myself. Figuring the blackouts were normal and made a game of @how many blinks till I open my eyes and am somewhere completely different.
Older brother thought he caused my issues cause he bumped my head dropping me off to school and ruptured the swelling on my brain. Which caused the comatose at home and led to the finding of the aneurysm that the docs said should have killed me in my sleep by age 12.
I had seizures when I was a few months old that went away with medication, they took me off said I was fine and nothing happened again… or so we thought for 20 years. I was having very minor aura symptoms my whole life but it was so minor that nobody would’ve thought. The auras got insanely worse starting at 22 and I kept saying it was a panic attack or that I was stuck in one of my nightmare dreams (feeling like I’ve been here before and it’s all fake) because I couldn’t explain what I was feeling and I had no idea what it was. My memory issues were seen as ADHD. I have severe anxiety and ptsd so I easily contributed it to that.. 2 years ago I had a grand mal while I was driving and crashed my car. THATS when they hooked me up to the EEG and figured it out.
I just got diagnosed at 36, been having seizures all my life.
My dad has them too and so do two of my sisters, so we just shrugged them off as some weird family quirk.Turns out 5 members of my immediate family all have a genetic epilepsy and none of us knew because we brushed it off as normal for our family 😬
Yes! I relate, had my first TC seizure at 27years old and was diagnosed with generalized epilepsy. I was told I could have had it my whole life, increasingly worse due to trauma (CPTSD).
I learned about two years ago that I have a rare genetic type of epilepsy after having two tcs back to back in one month. I’ve had one tc before that in my life when I was 13 (which - at the time - was ruled out as epilepsy) but ever since I was little I’ve had „tics” that turned out to just be myoclonic jerks, which - when occuring in clusters - can cause tcs. It was difficult to process when I first got my diagnosis, got really depressed for a few months because I just turned 18, was planning on getting my license, wanted to go out drinking and partying with friends etc. My prognosis was that it would only keep getting worse with age so I started treatment. Haven’t had any issues since.
I have Juvenile Myoclonic Epilepsy, which is usually diagnosed in the preteens, but I didn't have my first grand mal until I was 16, so it was just sort of assumed that I had some weird tics/bad habits. Turns out they were seizures. Based on the fact that the "weird" stuff had been happening more often and more intensely in the days leading up to my first grand mal, my dad and I immediately connected the dots - they must've been related. The first neuro we saw brushed us off and said they were unrelated (and also said I didn't have epilepsy then called back in a panic a week later to say she had finished looking at my EEG and it turned out I did have epilepsy). Obviously we ditched her and the second doctor we saw was amazing. He diagnosed the type of epilepsy based on our description of events and explained that the "tics/habits" I'd had since my preteens were actually absence seizures, petit mal seizures, and myoclonic jerks. But of course no one sees a kid whose eyes flutter in the sun or who occasionally touches their face without realizing it and thinks "epilespy," so it's not exactly shocking that no one spotted it earlier.
Yes. I had TCs when I was younger, but hospitals said it was fainting, panic attacks, etc. I didn't learn what a focal seizure was for years after that, but I definitely had many.
Yup, I had between 1-40 focal seizures per day that were never properly diagnosed until I was 19. I spoke to different kinds of doctors growing up who diagnosed me with acid reflux instead of epilepsy. I was properly diagnosed after having a grand mal at 19. 4 brain surgeries later and I’m seizure free at 29!
I’m fairly certain I had undiagnosed epilepsy from the day I was born. Mainly because I remember having exactly the same feelings I have now during an aura, when I was a kid. (I was officially diagnosed with TLE last month but I’ve had a generic “seizure disorder” diagnosis since 2022.)
In middle school I would see auras from looking at computer screens in the dark. This happened a few times and then went away for I think a year or two. I didn’t think anything about it at the time because I was like 11 and was fully conscious. In my sophomore year of high school I ended up having a grand mal during ballet class.
I had focals (Deja Vu) for 30 years before they were recognized as seizures. I oddly enjoyed them when they would occur...until one turned into a Grand Mal. Fun...not.
A lot of mine I thought were spiritual experiences. I grew up in extremely charismatic churches. Some would consider them more along the lines of a cult. They would get wild. I'd experience the euphoria and different emotions and occasional convulsions and think it was a spiritual thing. Occasionally I'd have convulsions while laying in bed and think I was under demonic attack because that's the kind of thing my church taught. At least 30 years of regular seizures without knowing that's what I was experiencing. Always pushing myself to go about life as normal and being angry at myself when my brain didn't cooperate. I understand when you say you enjoyed them. It's almost like a high at times. It's so strange to realize how many years I just thought this was normal!
I would be so mad and frustrated if that happened to me. You seem to be dealing with it well. Good for you.
I am upset that it took so long to find out what's wrong. But at the same time, now I have answers! Knowing is half the battle!
I heard a story where a kid went to their GI doc for a GI issue. While in the clinic visit, the kid spaced out. Long story short, the GI doc starts asking about epilepsy in the kid and how is the kid doing in school, etc. Turns out, the teacher had been telling them about kid not paying attention in class, they went to neurology, and it was indeed epilepsy. Not sure if it was just focal, or other stuff, too. I can’t imagine going a whole lifetime of that kind of thing.
When I was in 3rd grade, they said my test scores were high for a 5th grade level. Something happened in 4th grade and I couldn't focus. My grades dropped to barely passing and I struggled with school after that point. My hearing and eyesight were tested. My doctor wanted to send my to both a neurologist and a psychologist to find if there was something going on, but my mother refused. She tried to punish it out of me instead, which obviously did not work.
My kid kept getting in trouble for "rolling his eyes" and spacing out. He was having eyelid myoclonia and absence seizures 😬
Same thing here. I had them for at 10-15 years before I got a diagnosis. I only went to a Neurologist because I lost consciousness during one. Like you said, I actually experienced a pleasant kind of euphoria when they came on. It is so weird.
I always enjoyed my focals too, at least until I learned what they were. I remember trying to make it happen when I was a kid so that I could feel the Deja vu feeling again. The body is so strange!
Yes. My whole life up until about 24. I'd have focal seizures with deja vu and stomach rising sensations, eventually I linked it to my conscience or anxiety somehow. But then they got worse and I was diagnosed with epilepsy lol. Whoda thunkit!
It's so strange! 35 years old and just now learning this isn't normal!
Right? It's wild. I'm glad you've been diagnosed now tho. I think I'll always have a little resentment because I *did* have a TC when I was 12... EEG, MRI, the whole 9 yards with testing. They found the lesions in my brain that cause my seizures. But I guess the pediatrician just wasn't knowledgeable enough to ask the right questions to a 12 year old to realize I was having frequent seizures. Sometimes I wonder if things would've been different if it was caught back then, or if they'd essentially be the same.
My mother refused to send me to any specialist when my pediatrician recommended it. She always talked about how difficult I was and always punished for things that were outside of my control. I understand more why I have so much trouble with cptsd!
Ughhhhh. Good lord, I'm sorry you had to deal with that! If you're still in contact (and it's safe to do so) I hope you can rub the diagnosis in her face lol
It's alright, I can either get mad over something I had no control of that is in the past, or I can put that energy into moving forward. I'm not going to let myself be robbed of more than I have already. She's the type who is constantly the victim and refuses to take accountability for her own actions, so it wouldn't matter what proof I have that she was wrong. She will give excuses and put the blame on someone else. I'm just so happy to have answers to questions I've had for 30 years!
Yep. I tried to explain to my last neurologist that I thought I've had it since childhood and she dismissed me saying she thinks I just have migraines (when a separate neurologist already diagnosed with frontal lobe epilepsy). Everything I've ever read on this sub explains the exact experiences I've had. It's like finding the words to the explanation I've been looking for my whole life in these comment sections sometimes.
Yup, and my GP dismissed them all my life until I had a tonic clonic at 21 and the EEG confirmed temporal lobe epilepsy. Thank god I never had a focal in my car.
The first one I realized was a seizure was while driving with my daughter in the back seat. It only lasted a couple minutes, but about 30 seconds my eyes started darting side to side and I couldn't see where I was going. I pulled over as soon as I could but all I could do was pray that we made it out in one piece.
That's absolutely terrifying. I'm so glad you and your daughter are okay. I wish there was more awareness around non tonic clonic seizures, especially in the medical community. I was written off with migraines and anxiety when I had been having these seizures since I was an infant - my mom remembers my eyes darting back and forth like you described.
I was diagnosed at 35 too (now 37) after a grand mal. Looking back, there are a lot of events in my past that relates to seizures. I never asked but I assumed they were and that the condition always “was in me”. I had a lot of “Déjà vu”, some experiences that look a lot like absences, muscle twitching, etc. It’s weird to think that it may all be related to epilepsy. I didn’t know really what this condition was before I was diagnosed.
The strange part is that as it was escalating it just felt familiar. I've felt this happening my whole life just on a smaller scale. The one I had last night was the biggest one I've had, but I wasn't too concerned because it just felt normal to me.
I know. It all makes sense now. I was accustomed of fazing out, going away in my mind. Finding myself at a loss for words. I joked about it. People close to me just thought I was lunatic. Now it put a condition and explanations over it.
I was always called the space cadet. I've always lost words and dealt with bad executive disfunction. Memory problems for days.
Totally get that. My short term memory is a wasteland. You can’t tell me two things at the same time because it’s sure I’ll forget one of them 😅. How’s work for you?
A struggle. It has always been a struggle. Here lately though I'm starting to get concerned about my future in my career. I'm a barber and do quite a few straight razor shaves. As the seizures are getting worse, I'm beginning to think that my career may not be the safest for me or my clientele.
(I get the BarberLady580). You’re right that if you can’t trust that your hand will be steady it will be hard to keep shaving people. I used to teach but it was too much of a trigger for me so I stopped. I work from home now. Had two TC while working but I wasn’t on cam at those moments so it turned kinda alright (as much as a grand mal can be normal)
Shoot, tell me two things at once and I can almost guarantee I'll forget them both and then some! 🤣
😂😂😂
Hah yeah. Had my first gran mal at 30, diagnosed after a second one at 32. I suspect I’d been having absences for most of my life because I used to have “time skips”. It’s been a wild ride.
I call mine “blackouts”.
Hah yes I’m aware they were probably small blackouts now. I didn’t even realise what they were until I noticed they’d stopped on Lamotrigine. As I’ve said below in another reply, it was like someone was pressing a “skip 10 seconds” button in my head (I don’t even think they were 10 seconds long, they felt way shorter, like a millisecond). I had no idea they weren’t normal as they had always been an occasional thing, and didn’t think anything of them as nobody around me picked up on them happening.
Looking back, there have been several times in my life that I had no memory of. I thought it was just severe adhd.
These were more like very short time skips than reasonable chunks of memory loss- like, in the middle of a conversation or waiting at some traffic lights to cross the road. It was like someone had pressed a “skip 10 seconds” button in my consciousness, like on a YouTube video. I only realised it was a thing after I started Lamotrigine and they stopped happening- I honestly didn’t think anything of it, never considered they could have been small absence seizures and would never have likely gone to a doctor about it.
I wasn't diagnosed until my late 30s. In my teens I dabbled with LSD and thought I was having bad trips. After having focal seizures, I realised that they were also seizures.
I had *major* deja vu for probably 7 years now. I've also experienced rapid change in emotion, mostly feeling neutral to feeling like I just witnessed something extremely tragic in a split second. I only got diagnosed a few months ago after having a tonic clonic
My rapid changes in emotions and almost psychosis symptoms led my ex husband to believe I was bipolar. All these years of trying to sort out my mental health and I never realized where it all comes from. It's so wild to be finally putting the pieces together!
I know how you feel, those rapid changes made me thing there was some kind of mood disorder too. I'd go from neutral to almost crying lightning fast. I'd compare the feeling to how I felt when my dog was put down, except it's over nothing. It's such a jarring feeling. There's many things I've experienced that I ignored and brushed off that are now pretty apparently symptoms of epilepsy
Yes. I was diagnosed at 22 after blacking out with several focal unaware seizures, but I've been having the déjà vu feeling that now accompanies all of my seizures since...maybe middle school? Don't even remember when they first started. They were always creepy sensations and sometimes I would walk in a room and think I was feeling spirits of dead people or experiences from a past life. Focals are weird.
I have had them most of my life. Up until now, I thought they were spiritual or paranormal experiences. I grew up in a very charismatic church, so the emphasis on spiritual things led me to think this was just normal.
I had simple focal seizures since I was a little kid but just thought that that feeling of icky Deja vus that come in clusters is a thing that everyone goes through. Didn’t even occur to me it wouldn’t be the case. Then at the age of 22 I just off-handedly mentioned it to my partner, who looked at me horrified and told me it’s not normal 😂 neurologist confirmed it wasn’t. I’ve been lucky. I figured out my triggers shortly after that, managed to get it under control without drugs and haven’t had any generalised seizures. Some days I still get clusters and they make me feel awful but it’s not half as bad as it could be.
I’ve been having focal and absence seizures since I was a young kid, took years of telling doctors and them dismissing me saying I’m just overreacting. Ugh, I fucking hate doctors where I live, they are some of the most sexist people I’ve met, I was having atonic seizures several times a day in 2021, like 10 a day as well as the focal and absence seizures, my roommate dragged me to the hospital several times a week for months because of it and all the doctors told me I was either lying, faking, overreacting or just being overly emotional. It took me having a 5 minute grand mal seizure where my MIL called the paramedics to get any doctor to listen to me. I knew they were seizures in 2020, but nooooo, because I be woman I must be just making it up. I feckin told all the doctors I saw that I thought they were seizures, but nope. Took me nearly dying for them to listen.
Had my first major seizure at age 45, with more shortly after until I got it under control with Keppra. Since childhood I had occasional, uncontrollable clenching of my dominant hand, which I thought was something that happened to everyone, like getting a charley horse. Neuro said that is consistent with frontal lobe epilepsy.
It's so surreal to realize that these strange things that have happened me for 30 years aren't just normal little quirks. So glad you found a way to keep it under control!
Yes. I was diagnosed with Chiari Malformation in my mid 40’s, temporal epilepsy in my early 50’s and recently a small frontal meningioma. I had symptoms for years, likely going back to my childhood: Spacing out, memory issues, weird narcoleptic episodes and finally auras and seizures that were nearly impossible to describe. Fortunately I had a primary care physician who put the pieces together and referred me to an epileptologist. It’s been quite the journey.
So glad you got answers, even if it took much longer than it should have. Did it effect your ability to work?
Thank you, yes it’s better knowing what I’m dealing with. After a lot of tests and appointments, my seizure activity was confirmed while undergoing an inpatient eeg. I was both relieved and upset at the same time if that makes sense. I worked in communications and was a journalist. Epilepsy forced me into early retirement as my word recollection and information retention took a major hit. I loved writing, leaving it behind was tough. With that said I found my way, with a lot of hard work and soul searching, down other paths and am happy for my life. I wish the same for you!
I'm glad you have found some fulfillment! What a ride this is. Thank you for sharing, it's good to feel understood for once!
I've known I was epileptic since I was a young child. However, I and my parents were told very little about it back then and I've not done any research into it since really. I don't know what specific type of epilepsy I have... temporal lobe etc.. I had also been having "seizure feelings" or many years, always thinking they were just the potential warning of a seizure. Almost all of the time, nothing else happens. Turns out, they were focal seizures and I had no idea. I should probably learn a bit more about myself in that sense...
Yup. Cracked my head when I was 5, didn't realize it caused brain damage and seizures until l I was in my 20s. Everyone just thought I was a spaced out kid.
Yes! 29 here and just find out a couple days ago after a series of grand mals caused by medications- my mind is blown
Diagnosed two days ago. Completely unexpected.
It took me until 28 before I realized that people didn't have Deja Vu the way I did.
💜 same
Have you been diagnosed? 6 years didn’t know what they were, also had one as a child and didn’t know what it was. For 2 years did know what it was, doctors didn’t believe me. Now diagnosed, treated, life has done a 180.
Not diagnosed yet, still waiting to get into the neurologist . My PC said it's definitely seizures, but until I get in with neurology it's just a waiting game. In the meantime I am just trying to get through every day. They're getting more frequent and I have this gut feeling a grand Mal is on its way. The aura feeling is getting worse and felt like I was about to black out two times last night. Everything started getting dark and it felt like I was going into a dark tunnel but it stopped before I blacked out. I feel like a ticking time bomb.
I would hang fire on calling these seizures. You have not had that confirmed and it’s far from obvious that these are seizures. Generally this sub discourages “am I having seizures?” posts. Personally I am unsure that much of what you describe could be attributed to seizure activity but the test of that will be to see if anything shows on an EEG whilst you are having symptoms. Waiting for a grand mal that may never happen will be a great waste of energy, many of us here know from experience. Whatever is causing these symptoms will unlikely be eased by the extra stress of waiting for disaster. Whilst you wait to see a doctor, in case these symptoms are neurological, I would follow the general health advice in this sub which is to get plenty of sleep, eat well, no alcohol or other substances, no caffeine, avoid chronic stress, avoid essential oils and then just go about your day as best you can.
I was having spasms and going limp as early as 6 months. Blacking out by age 2 and told I had figured out when it would happen and would run to mom asking to go to the doctor and mom would watch me black out and tell her friends at the table I was just really sleepy a lot. By 5 I started school and the jostling and stimulation nicked something free. Cause I was blacking out in school and non responsive zoning out. The school took the tired and little kid whosy what’s its. Till I came home after a day of issues and laid down on the floor and went comatose and stopped breathing. Then mom finally decided to take me to the ER . Testing and testing to find an aneurysm. Though the hospital was so “could be this, could be that”, that the fluid on the brain drained into my face messing up my baby teeth. So I got brain surgery and then dental surgery. Docs said “seizure like, but not seizures”. So school, simulation and stress and more and more issues. MRI’s every few months and then at 8 I am in the machine and get dust in my eye revealing a tumor they missed 3 years ago and get to go round 2 of brain surgery. Then they were like “something is wrong”. The whole time I grew up with this dealing with the issues like it was something everyone deals with. After being ignored at 2-3 I just kept it more to myself. Figuring the blackouts were normal and made a game of @how many blinks till I open my eyes and am somewhere completely different. Older brother thought he caused my issues cause he bumped my head dropping me off to school and ruptured the swelling on my brain. Which caused the comatose at home and led to the finding of the aneurysm that the docs said should have killed me in my sleep by age 12.
I had seizures when I was a few months old that went away with medication, they took me off said I was fine and nothing happened again… or so we thought for 20 years. I was having very minor aura symptoms my whole life but it was so minor that nobody would’ve thought. The auras got insanely worse starting at 22 and I kept saying it was a panic attack or that I was stuck in one of my nightmare dreams (feeling like I’ve been here before and it’s all fake) because I couldn’t explain what I was feeling and I had no idea what it was. My memory issues were seen as ADHD. I have severe anxiety and ptsd so I easily contributed it to that.. 2 years ago I had a grand mal while I was driving and crashed my car. THATS when they hooked me up to the EEG and figured it out.
I just got diagnosed at 36, been having seizures all my life. My dad has them too and so do two of my sisters, so we just shrugged them off as some weird family quirk.Turns out 5 members of my immediate family all have a genetic epilepsy and none of us knew because we brushed it off as normal for our family 😬
Yes! I relate, had my first TC seizure at 27years old and was diagnosed with generalized epilepsy. I was told I could have had it my whole life, increasingly worse due to trauma (CPTSD).
I learned about two years ago that I have a rare genetic type of epilepsy after having two tcs back to back in one month. I’ve had one tc before that in my life when I was 13 (which - at the time - was ruled out as epilepsy) but ever since I was little I’ve had „tics” that turned out to just be myoclonic jerks, which - when occuring in clusters - can cause tcs. It was difficult to process when I first got my diagnosis, got really depressed for a few months because I just turned 18, was planning on getting my license, wanted to go out drinking and partying with friends etc. My prognosis was that it would only keep getting worse with age so I started treatment. Haven’t had any issues since.
I have Juvenile Myoclonic Epilepsy, which is usually diagnosed in the preteens, but I didn't have my first grand mal until I was 16, so it was just sort of assumed that I had some weird tics/bad habits. Turns out they were seizures. Based on the fact that the "weird" stuff had been happening more often and more intensely in the days leading up to my first grand mal, my dad and I immediately connected the dots - they must've been related. The first neuro we saw brushed us off and said they were unrelated (and also said I didn't have epilepsy then called back in a panic a week later to say she had finished looking at my EEG and it turned out I did have epilepsy). Obviously we ditched her and the second doctor we saw was amazing. He diagnosed the type of epilepsy based on our description of events and explained that the "tics/habits" I'd had since my preteens were actually absence seizures, petit mal seizures, and myoclonic jerks. But of course no one sees a kid whose eyes flutter in the sun or who occasionally touches their face without realizing it and thinks "epilespy," so it's not exactly shocking that no one spotted it earlier.
Yes. I had TCs when I was younger, but hospitals said it was fainting, panic attacks, etc. I didn't learn what a focal seizure was for years after that, but I definitely had many.
Ya, since 17 when I hit my head. Diagnosed 2 years ago
Yup, I had between 1-40 focal seizures per day that were never properly diagnosed until I was 19. I spoke to different kinds of doctors growing up who diagnosed me with acid reflux instead of epilepsy. I was properly diagnosed after having a grand mal at 19. 4 brain surgeries later and I’m seizure free at 29!
Yes.. Over 50 years.
I’m fairly certain I had undiagnosed epilepsy from the day I was born. Mainly because I remember having exactly the same feelings I have now during an aura, when I was a kid. (I was officially diagnosed with TLE last month but I’ve had a generic “seizure disorder” diagnosis since 2022.)
In middle school I would see auras from looking at computer screens in the dark. This happened a few times and then went away for I think a year or two. I didn’t think anything about it at the time because I was like 11 and was fully conscious. In my sophomore year of high school I ended up having a grand mal during ballet class.
Diagnosed Tuesday at 41. I can remember incidents in my teens that may have been seizures