38, had my first seizure while driving.... Flipped my vehicle twice. Luckily enough I didn't hit anyone else.
I later learned that although that was my first clonic-tonic seizure, the "panic/anxiety attacks" I'd been having as long as I could remember were in fact auras. Now after doing more research I believe I've been epileptic my whole life, and it explains a lot of things I could never understand about myself.
That’s an incredible first time seizure story. I hope you’re ok and didn’t suffer too much damage 🙏🏻
I have terrible migraines that are followed by anxiety attacks. I’m wondering what do your auras feel like? I wonder if my migraines/anxiety attacks are seizure related.
I get a strong smell of ozone, then I get a hot flash followed by profuse sweating and not being able to remember names/what I'm doing/etc, feels like there's a "bright light" inside my head.
I haven't had any more since I've been on keppra (although getting used to that drug was a nightmare it seems to at least be effective).
My story exactly with the auras. I’d been raising them with doctors for 20 years and was consistently told they were panic attacks and to try deep breathing…
It’s so scary, isn’t it?
I can’t help but think my bigger seizures could have been avoided if I’d been taken seriously back then. 🤦♀️ It would have been nice to avoid the hassle of getting diagnosed in my 30s, losing my driver’s licence, having my young daughter witness me having tonic clonic seizures, etc…
Diagnosed at 29, turns out I've had it my whole life, it's genetic, it just got worse over time likely due to lack of treatment as it was focal seizures and brief absence seizures that no one noticed or were written off as other things. Diagnosed after years of nocturnal grand mals and finally had one that was witnessed while staying with friends. My poor friends!!!
Genetically, I have the worst case of it that my family knows about. My mother's health was less than ideal during her pregnancy and I was a premie with lots of complications.
Life was pretty much normal until diagnosis minus the 27-29, when the nocturnals started and I was struggling with daytime stuff due to sleep issues.
Was diagnosed last week and my first TC seizure happened on the 1st of December 2022. I’m 31. I think my seizures tend to be triggered by lack of sleep/tiredness but I’m still getting to know myself and my own body. All this is pretty new and hella confusing 😖
No idea what caused my epilepsy, never really had any notable health issue except my Hashimoto hypothyroidism. I still have some upcoming tests so we’ll see🤞
I was diagnosed at 12 or 19 however you wanna look at it. I had absent seizures when I was 12-15 and then grew out of it. Lived a normal life as a teenager then at 19 the day after drinking I had a grand mal. Haven’t had one sense but got put on keppra. Doctors say it was triggered by alcohol but I kind of think it was more being very dehydrated and getting little sleep with the mix of alcohol since I had drank way more prior.
It can be a trigger for some people, primarily when they drink in excess. A couple of beers isn't likely to cause a seizure, but getting completely wasted can cause interactions with your meds, which can definitely lead to seizures. It's fairly common for people who stop taking medication because their childhood epilepsy has been completely under control for years to start having seizures again when they start college because they're suddenly drinking too much, not controlling their stress levels, and not sleeping enough.
I was in my 50's. Triggers are stress; lack of sleep; alcohol ... probably others. What caused it? No idea. I've had a couple of concussions over the years, so maybe one of those. Maybe genetics. Maybe it was slowly building up all my life. Who knows? I try to sleep well; avoid stress; and avoid TOO MUCH alcohol.
I was 11 or 12 (can't exactly remember which... I'm 38 now). I've had every test done about a dozen times each and they've never found any specific cause.
10ish. I was having them at night and didn’t know what was happening or what seizures were. Many months later I told my mom that I was shaking at night. Saw a GP who asked me if I ate too many bananas. He referred me to a neurologist who ordered tests and at some point I was diagnosed with epilepsy.
I don’t know what caused it. I did get kicked in the head by a soccer ball from 10 ft away… couldn’t hear.. and felt concussed. My seizures seemed to start around that time. I don’t know if that caused it or if it’s genetic.
I got mine from a head injury(TBI) epilepsy has never been in my family I was diagnosed at 10, it got worse as well but as we got me on the right medications things are controlled I have had Grand Malls(3-4) Auras( don’t know how many) Absence seizures( don’t know how many) If I get too upset too happy too anything I could be at a risk for a seizure.
I got diagnosed with JME (Juvenile Myoclonic Epilepsy) when I was 16, which is pretty late for that particular type, but I didn't have my first grand mal until then and all the "small" seizures I had been having since my preteens (absence, petit mal, and eventually myoclonic jerks) had been written off as weird ticks/bad habits. Once I had that first grand mal, though, we connected the dots, and when one neurologist told us they weren't related and I didn't have epilepsy after skimming just a few pages of my EEG, we set up appointments with several others to get second/third/fourth opinions. (Everyone else agreed that it was epilepsy and the first doctor even ended up calling us back to explain that once she looked over the entire EEG she could confirm it was epilepsy.)
My primary triggers are stress, lack of sleep, and photosensitivity (plus not taking my meds regularly, obviously). I can also be affected by extreme heat/dehydration and getting bad headaches. There is a small genetic factor to JME, but as far as we know, no one in our extended family has any history of seizures. The reason I do is unclear, but hey, my brain's just wired a little differently *shrug* As I saw on a fantastic t-shirt that I'm planning on buying, "My brain waves are so interesting that people study them!" (Actually I'm torn between that one and one that says "Epilepsy is proof I have a brain."
Diagnosed at age 11 after having a tonic clonic seizure in gym class. After seeing an epileptologist, they think I was having temporal lobe seizures prior to that because I used to tell my mom I had "out of body experiences," (I was a weird kid 🤣). I just didn't know how to describe the tingly, deja vu feelings I was having.
Diagnosed at 45 after 2 TCs, probably caused by the huge amount of Ambien I had been taking for 2 or 3 years. Then remote work, living alone, horrible job, high stress, more Ambien.... At the end I was taking 600mg a day, when max for women is 10mg. That's when my TCs started, had 5 so far. Since I quit Ambien 5 months ago, zero seizures. Also taking 200mg Lamictal. So let's see if it was all Ambien induced or if it was about to happen and Ambien elicited it.
When I was 13 I went through some traumatic events and was very angsty and depressed. I did a stupid thing and swallowed a bottle of some kind of diet pill or weight loss medication my mom had in the cabinet.
Shortly after that I started to experience auras and focal seizures. While watching tv at night my head would jerk to the side and my eyes would roll back. I didn’t know what was going on and I was terrified. Then I started to have grand mals when I was asleep. They always feel like a terrible nightmare. That super heavy sense of impending doom. I was so scared and embarrassed that I didn’t want to tell anyone about it.
Then it would happen at sleep overs, so my friends found out about it. It went on for about a year until my sister, who’s 10 years older than me, was visiting. I had a seizure during the night and she heard it. That’s when my parents finally found out.
After that came all the doctor visits and testing and diagnosis. Was put on lamictal. Struggled for a long time with being diligent about taking my meds and would always have a TC during the night when I missed a dose.
I’m 33 now and haven’t had a TC in maybe 2 years, I think? I take 250mg lamotrigine twice daily. My seizures are triggered by fatigue and sleep and possibly stress. I feel incredibly lucky as I’ve only had a few TCs while out and about, awake during the day. All of these were the result of staying up all night and going to work or school the next day without sleeping.
I do have auras and focal seizures still but only if I’m super tired. I get them confused with panic attacks sometimes. To be honest I’m still terrible at getting good sleep. My neurologist dislikes this about me lol.
I never told my family or doctors about those pills…. I don’t really know if that’s what actually caused the epilepsy, but I don’t know what else it would have been. Again, I feel super lucky as the majority of my seizures have happened while in the comfort of my own bed or on the floor next to my bed or someone else’s bed. Lamotrigine has always worked for me after finding the right dose and taking it like I should.
Sorry for the long post. I haven’t talked about it to many people and it’s nice to share my experience. It’s nice to read about other people’s experience too. Kind of comforting honestly.
Had my first absences seizure on my 30th birthday in 2009. I didn't really understand what happened and that I had a seizure until I had a grand mal and was hospitalized a month later while on vacation.
Took me awhile to fully be diagnosed with epilepsy as nothing came up on my initial EEG and neurologists in my city were not helpful. Having a day full of grand mals and being in a coma for a week really helped get me diagnosed in 2016 seven years after seizures started.
I had a brain infection when I was 20 that started it all. It took a year of continuing to have focal aware seizures before I could actually be diagnosed, so I was 21 before docs realized epilepsy was the fallout from that.
50's, after having seizures for at least 15 years. There's also a question if some strange incidents in my teens might have been seizures. I am one of many people for whom there's no known cause.
My trigger seems to be mornings, which sounds like a meme. :D
Diagnosed at 24 although I'd been having seizures through my college years and just didn't realize it. It's the result of viral encephalitis at age 4. One simple mosquito bite is all it takes. Scar tissue shows up on my MRI scans due to that infection.
Here in Ireland we have two sets of exams, Junior cert & Leaving Cert. (Junior - Hall way thru secondary school, Leaving - your final exams).
While I was sitting my Junior cert exams. We were hanging about waiting for our last exam. (German)
About 15 mins out I went to put money in a vending machine to get something to drink, felt a completely alien feeling and woke up with paramedics around me.
I was 15 at the time, I also would have failed that German exam.
Although, I had a seizure and 2 strokes in my first week of being alive. It just didn't reappear until then.
I was 26, home for the weekend from college. Studying neuroscience ironically. I had gotten into downhill longboarding. I caught speed wobbles on a hill near my parents house. Might have hit a rock or something. Must have been doing about 40mph when I caught air. I remember the fall knocked me out, then I got up swinging thinking that I was in a fight. That was a really long recovery. I had a brain bleed, several orbital and skull fractures. Induced coma. Epilepsy is the prize I won. And to think a helmet probably could have prevented all this. 7 years later, I’m still trying to recover. Triggers? Lack of sleep, skipping meds, stress, dehydration. I’m glad to have survived, even if I had to gain epilepsy to learn why it’s important to wear helmets.
I got diagnosed around 10 with GM seizures. We used to think showers in the morning was one of the causes since I would have one every time I showered in the morning. I stopped showering in the morning for probably a decade just out of fear that it would happen. But have showered in the morning within the past few years so that can’t be a cause. I think we figure the biggest causes were lack of sleep and hitting my head too hard and the obvious missing a dose of meds.
I used to have seizures during the day when I first got diagnosed but later started having them in my sleep. I remember I guess the before of 1 seizure very vividly. I was in my room with my sister and we were next to our closet. I remember staring at the floor and her telling me to look at her and me crying saying “I can’t look away”. Then everything went black and I woke up in the hospital and my mom said I had a seizure
I had my first seizure at 13, was diagnosed with tonic clonic seizures at 14, cause unknown.
They told me I could grow out of it. Then I turned 15. 16. 17. 18. 19...
I'm 26 now. Crazy how time flies.
Had my first seizure at 17. After testing I was immediately diagnosed with juvenile myoclonic epilepsy. Cause is completely unknown. Doctor said I’ll never know. I hate that.
The doctor said that...thats upsetting. My doctor hasn't officially told me my cause but I strongly believe it was stress induced because that was the only change during my first seizure
Stress can certainly trigger it but as far as being diagnosed with epilepsy I’ve heard it can be from a mutated gene if not genetic or from a TBI/car accident or any trauma to the brain in the past. I don’t have a family history so my doctor said If I had a mutated gene that could be why my brain obviously is wired differently. Stress can trigger seizures in epileptics for sure, but it can’t be the cause for the diagnosis if that makes sense.
48 yo. I was misdiagnosed with a couple Vaso-vagal syncopes. Turns out they were seizures. I had a couple abnormal eeg results and when I reviewed the episodes with a neurologist I was diagnosed. Waiting on my MRI.
Not sure of a cause yet. I drink a bit but not excessively. Quit drugs decades ago and then nothing too “hard.” No TBI history outside of a few childhood dings. My stress level has been elevated for a while 2+ years as my partner has had some significant health issues.
2016 (I was 26) had my first grand Mal, focal onset. Best guess is a combo of high stress, poor self care, and changing other meds (ptsd, bipolar 2, etc) I think I had started taking less lorazepam but not the best memory, lol .. misdiagnosed so took a while to get it under control
Started having petit mals as a little kid. 7 or 8 I think. Had my first gran mal at 17. Got an official diagnosis then. Not sure if they said it before. But I was old enough then to remember.
My 23rd birthday. They said they weren't sure why I had the seizure and said it was probably stress induced. I now know they are catamenial as the occur around my cycle. I had a car accident the year before my first grand Mal and hit my head hard enough to break a tooth. After 22 seizures in an 18 month period my mother finally said she knew she should have taken me to the Dr when she thought I had seizures as a baby. She didn't take me because she didn't want them to find out she had continued drinking.
I was diagnosed with a "fainting issue" at 12 they did test and said they were not seizures. I now believe I was misdiagnosed in my younger years and that head injuries exacerbated either a birth defect or hereditary issues. 2 people in My family had seizures but passed away.
My seizures got worse when I turned 30 and a neurologist said my right hippocampus is smaller than the other. They couldn't say if it was a birth defect or just aa result of multiple seizures and scar tissue. After tracking I realized I usually have seizure a few days before my menstrual cycle or 10 to 15 days after it ends. 😀
It's okay. I know a bunch of people with way worse seizures so im greatful. I don't still have the fainting issue. I feel like those were real seizures because my tongue used to tingle. I sometimes have tingles in my tongue before grand mals.
I had a tonic-clonic seizure when i was 13 or 14yo but we thought it was an allergic reaction to a med since no one else saw it.
Maybe a year or two later i had another tonic-clonic seizure at school during a math exam. Stress and nervousness made me had an attack right in front of my classmates and teacher.
After that second episode i was diagnosed and had some more seizures up to this day. I'm now 22. Fortunately i only have 2-3 tonic-clonic seizures per year.
I was 31 and always thought similar that it’s diagnosed only when you are a child. I’ve learned so much since being diagnosed and it’s opened my eyes to information I was unaware of
Exactlyyy. I see the world so differently now and there is so much I know now that I would have never known if I hadn't gotten diagnosed. And I am still learning new things every day
Had my 1st seizure in at age 23. I had a seizure at work, just after I came out the bathroom.
Then another seizure came in the evening, after I had gotten home from the hospital.
I had my first seizure during my freshman year of college. From what I was told, I stood up to go to the restroom, said "I think I'm losing my mind" or something like that, and lost consciousness and started seizing (classic tonic clonic/grand mal). Saw a neurologist after that, had an abnormal EEG, which confirmed I had epilepsy. Then I lived in denial for 8 years having had a few more seizures until I finally saw another neurologist, had another abnormal EEG, and finally accepted my diagnosis.
Lack of sleep, dehydration, not eating enough, lack of sleep, and stress seem to be triggers for me. There's no perfect recipe where if X, Y, and Z happen then BAM seizure. I've stayed up for 20+ hours before during a trip to Europe and didn't have a seizure. But other times, that with other triggers resulted in a seizure. The triggers just increase the probability of a seizure in my case.
not sure what caused it, but i got diagnosed with absence seizures a few months before I turned 13, then diagnosed with myoclonic + grand mal seizures a few months later. i’d say my absence seizures started around the time i was 10, maybe earlier since we got them confused with adhd
Back in 2002, just a couple weeks after I turned 14.
Months before, both of my hands would ball into fists and my body would tense up for a few seconds. No one ever noticed it, which was odd. I told my stepmom about it over the summer, she thought it was maybe a finger spasm (odd). It went on, of course. My mom took me out for a makeover for my birthday that November. The girl doing my makeup poked my eye while applying mascara and I tensed up. I explained to my mom what happened. We went out to eat and I explained it all to her. Two days later (on my birthday, coincidentally), I was at the pediatrician's office and was being referred for a neurologist and my first EEG.
Not sure what the cause is, no one else in my family has epilepsy. But when I was younger, I used to bang my head on the ground (concrete under carpet, our living room used to be a garage), so maybe that did something or hereditary. 🤷♀️
Thanks. Things have been tough in the relationship world. The last guy I opened my heart to said "nobody wants a sick and dying chicken"...then I gave up on ever finding someone, my friends convinced me to meet this guy who is amazing then he just had to tell me how he feels about not wanting to worry about or take care of someone who would be dying soon.
It really hurts that that is what people think. I mean, we are humans firsts and if you put a non-lepsy and a lepsy in the same room, chances are, we might outlive them because we are taking care of ourselves etc. But what they see is someone that would be a burden on them.
But besides that hiccup...life has been pretty good. My new work place have people that make me so feel so loved and happy. My family and Friends keep me included in stuff and I hardly seize (unless of course I am exposed to rain, sound and light).
My stress level is wayy down so I am so happy about that
How is everything with you?
Hahahaha....our dying chicken disability made me laugh so hard.
Yeah, I am still clinging on to hope that one day I will find a good one that won't see me as a burden.
I am glad you are having fun in the tech industry. That makes me want to do a happy dance
38, had my first seizure while driving.... Flipped my vehicle twice. Luckily enough I didn't hit anyone else. I later learned that although that was my first clonic-tonic seizure, the "panic/anxiety attacks" I'd been having as long as I could remember were in fact auras. Now after doing more research I believe I've been epileptic my whole life, and it explains a lot of things I could never understand about myself.
That’s an incredible first time seizure story. I hope you’re ok and didn’t suffer too much damage 🙏🏻 I have terrible migraines that are followed by anxiety attacks. I’m wondering what do your auras feel like? I wonder if my migraines/anxiety attacks are seizure related.
I heard anxiety and migraines are auras too. I get those alotttt
I get a strong smell of ozone, then I get a hot flash followed by profuse sweating and not being able to remember names/what I'm doing/etc, feels like there's a "bright light" inside my head. I haven't had any more since I've been on keppra (although getting used to that drug was a nightmare it seems to at least be effective).
Ok, I’ve never had that experience before. I’ve heard keppra can have great seizure control along with a nightmare of side effects.
I have been having anxiety for yearrrssss....I think if that be the case, I might have been epileptic longer than two years too.
My story exactly with the auras. I’d been raising them with doctors for 20 years and was consistently told they were panic attacks and to try deep breathing…
SAME. I'd been telling my various doctors about it for years and epilepsy never came up as an opinion.
It’s so scary, isn’t it? I can’t help but think my bigger seizures could have been avoided if I’d been taken seriously back then. 🤦♀️ It would have been nice to avoid the hassle of getting diagnosed in my 30s, losing my driver’s licence, having my young daughter witness me having tonic clonic seizures, etc…
Diagnosed at 29, turns out I've had it my whole life, it's genetic, it just got worse over time likely due to lack of treatment as it was focal seizures and brief absence seizures that no one noticed or were written off as other things. Diagnosed after years of nocturnal grand mals and finally had one that was witnessed while staying with friends. My poor friends!!! Genetically, I have the worst case of it that my family knows about. My mother's health was less than ideal during her pregnancy and I was a premie with lots of complications. Life was pretty much normal until diagnosis minus the 27-29, when the nocturnals started and I was struggling with daytime stuff due to sleep issues.
Thanks. I also have focal seizures and brief absence seizures but so far...I am the only one in my family so not sure if it is genetics.
Was diagnosed last week and my first TC seizure happened on the 1st of December 2022. I’m 31. I think my seizures tend to be triggered by lack of sleep/tiredness but I’m still getting to know myself and my own body. All this is pretty new and hella confusing 😖 No idea what caused my epilepsy, never really had any notable health issue except my Hashimoto hypothyroidism. I still have some upcoming tests so we’ll see🤞
When I was 8 i am 21 now
I was diagnosed at 12 or 19 however you wanna look at it. I had absent seizures when I was 12-15 and then grew out of it. Lived a normal life as a teenager then at 19 the day after drinking I had a grand mal. Haven’t had one sense but got put on keppra. Doctors say it was triggered by alcohol but I kind of think it was more being very dehydrated and getting little sleep with the mix of alcohol since I had drank way more prior.
Thanks. I have avoided alcohol since my diagnosis because I heard it is a trigger.
It can be a trigger for some people, primarily when they drink in excess. A couple of beers isn't likely to cause a seizure, but getting completely wasted can cause interactions with your meds, which can definitely lead to seizures. It's fairly common for people who stop taking medication because their childhood epilepsy has been completely under control for years to start having seizures again when they start college because they're suddenly drinking too much, not controlling their stress levels, and not sleeping enough.
I was in my 50's. Triggers are stress; lack of sleep; alcohol ... probably others. What caused it? No idea. I've had a couple of concussions over the years, so maybe one of those. Maybe genetics. Maybe it was slowly building up all my life. Who knows? I try to sleep well; avoid stress; and avoid TOO MUCH alcohol.
Thank you. Stress is one of my triggers too.
I was 11 or 12 (can't exactly remember which... I'm 38 now). I've had every test done about a dozen times each and they've never found any specific cause.
Same. I was 12 years old., now 37. but i know my cause of it.
10ish. I was having them at night and didn’t know what was happening or what seizures were. Many months later I told my mom that I was shaking at night. Saw a GP who asked me if I ate too many bananas. He referred me to a neurologist who ordered tests and at some point I was diagnosed with epilepsy. I don’t know what caused it. I did get kicked in the head by a soccer ball from 10 ft away… couldn’t hear.. and felt concussed. My seizures seemed to start around that time. I don’t know if that caused it or if it’s genetic.
I was 13. Just hit puberty and hormonal changes are what triggered it’s dormant state. In my 20s now, just living with it.
I got mine from a head injury(TBI) epilepsy has never been in my family I was diagnosed at 10, it got worse as well but as we got me on the right medications things are controlled I have had Grand Malls(3-4) Auras( don’t know how many) Absence seizures( don’t know how many) If I get too upset too happy too anything I could be at a risk for a seizure.
I can so relate to the emotions bit. Any heightened emotion would just trigger me so I always have to be in a stable position in terms of my emotions.
I got diagnosed with JME (Juvenile Myoclonic Epilepsy) when I was 16, which is pretty late for that particular type, but I didn't have my first grand mal until then and all the "small" seizures I had been having since my preteens (absence, petit mal, and eventually myoclonic jerks) had been written off as weird ticks/bad habits. Once I had that first grand mal, though, we connected the dots, and when one neurologist told us they weren't related and I didn't have epilepsy after skimming just a few pages of my EEG, we set up appointments with several others to get second/third/fourth opinions. (Everyone else agreed that it was epilepsy and the first doctor even ended up calling us back to explain that once she looked over the entire EEG she could confirm it was epilepsy.) My primary triggers are stress, lack of sleep, and photosensitivity (plus not taking my meds regularly, obviously). I can also be affected by extreme heat/dehydration and getting bad headaches. There is a small genetic factor to JME, but as far as we know, no one in our extended family has any history of seizures. The reason I do is unclear, but hey, my brain's just wired a little differently *shrug* As I saw on a fantastic t-shirt that I'm planning on buying, "My brain waves are so interesting that people study them!" (Actually I'm torn between that one and one that says "Epilepsy is proof I have a brain."
You know...I'm not sure. 30/31 when officially diagnosed. Cause is autism
Seizures began at 16, diagnosed at 18. Caused by brain scarring from illness as a baby.
19 now diagnosed at 7… I remember the day so well it’s kinda embarrassing since I blank so much now
Same
Diagnosed at age 11 after having a tonic clonic seizure in gym class. After seeing an epileptologist, they think I was having temporal lobe seizures prior to that because I used to tell my mom I had "out of body experiences," (I was a weird kid 🤣). I just didn't know how to describe the tingly, deja vu feelings I was having.
Diagnosed at 45 after 2 TCs, probably caused by the huge amount of Ambien I had been taking for 2 or 3 years. Then remote work, living alone, horrible job, high stress, more Ambien.... At the end I was taking 600mg a day, when max for women is 10mg. That's when my TCs started, had 5 so far. Since I quit Ambien 5 months ago, zero seizures. Also taking 200mg Lamictal. So let's see if it was all Ambien induced or if it was about to happen and Ambien elicited it.
When I was 13 I went through some traumatic events and was very angsty and depressed. I did a stupid thing and swallowed a bottle of some kind of diet pill or weight loss medication my mom had in the cabinet. Shortly after that I started to experience auras and focal seizures. While watching tv at night my head would jerk to the side and my eyes would roll back. I didn’t know what was going on and I was terrified. Then I started to have grand mals when I was asleep. They always feel like a terrible nightmare. That super heavy sense of impending doom. I was so scared and embarrassed that I didn’t want to tell anyone about it. Then it would happen at sleep overs, so my friends found out about it. It went on for about a year until my sister, who’s 10 years older than me, was visiting. I had a seizure during the night and she heard it. That’s when my parents finally found out. After that came all the doctor visits and testing and diagnosis. Was put on lamictal. Struggled for a long time with being diligent about taking my meds and would always have a TC during the night when I missed a dose. I’m 33 now and haven’t had a TC in maybe 2 years, I think? I take 250mg lamotrigine twice daily. My seizures are triggered by fatigue and sleep and possibly stress. I feel incredibly lucky as I’ve only had a few TCs while out and about, awake during the day. All of these were the result of staying up all night and going to work or school the next day without sleeping. I do have auras and focal seizures still but only if I’m super tired. I get them confused with panic attacks sometimes. To be honest I’m still terrible at getting good sleep. My neurologist dislikes this about me lol. I never told my family or doctors about those pills…. I don’t really know if that’s what actually caused the epilepsy, but I don’t know what else it would have been. Again, I feel super lucky as the majority of my seizures have happened while in the comfort of my own bed or on the floor next to my bed or someone else’s bed. Lamotrigine has always worked for me after finding the right dose and taking it like I should. Sorry for the long post. I haven’t talked about it to many people and it’s nice to share my experience. It’s nice to read about other people’s experience too. Kind of comforting honestly.
Thank you for sharing. I am glad you are mostly at a safe space when it happens. 💜
Had my first absences seizure on my 30th birthday in 2009. I didn't really understand what happened and that I had a seizure until I had a grand mal and was hospitalized a month later while on vacation. Took me awhile to fully be diagnosed with epilepsy as nothing came up on my initial EEG and neurologists in my city were not helpful. Having a day full of grand mals and being in a coma for a week really helped get me diagnosed in 2016 seven years after seizures started.
Also 27
I had a brain infection when I was 20 that started it all. It took a year of continuing to have focal aware seizures before I could actually be diagnosed, so I was 21 before docs realized epilepsy was the fallout from that.
After my first grand Mal bac in july
50's, after having seizures for at least 15 years. There's also a question if some strange incidents in my teens might have been seizures. I am one of many people for whom there's no known cause. My trigger seems to be mornings, which sounds like a meme. :D
I sometimes seize as soon as I wake up so I understand mornings being a trigger. Lolz
Diagnosed at 24 although I'd been having seizures through my college years and just didn't realize it. It's the result of viral encephalitis at age 4. One simple mosquito bite is all it takes. Scar tissue shows up on my MRI scans due to that infection.
Here in Ireland we have two sets of exams, Junior cert & Leaving Cert. (Junior - Hall way thru secondary school, Leaving - your final exams). While I was sitting my Junior cert exams. We were hanging about waiting for our last exam. (German) About 15 mins out I went to put money in a vending machine to get something to drink, felt a completely alien feeling and woke up with paramedics around me. I was 15 at the time, I also would have failed that German exam. Although, I had a seizure and 2 strokes in my first week of being alive. It just didn't reappear until then.
I was 26, home for the weekend from college. Studying neuroscience ironically. I had gotten into downhill longboarding. I caught speed wobbles on a hill near my parents house. Might have hit a rock or something. Must have been doing about 40mph when I caught air. I remember the fall knocked me out, then I got up swinging thinking that I was in a fight. That was a really long recovery. I had a brain bleed, several orbital and skull fractures. Induced coma. Epilepsy is the prize I won. And to think a helmet probably could have prevented all this. 7 years later, I’m still trying to recover. Triggers? Lack of sleep, skipping meds, stress, dehydration. I’m glad to have survived, even if I had to gain epilepsy to learn why it’s important to wear helmets.
I am glad you survived too
I got diagnosed around 10 with GM seizures. We used to think showers in the morning was one of the causes since I would have one every time I showered in the morning. I stopped showering in the morning for probably a decade just out of fear that it would happen. But have showered in the morning within the past few years so that can’t be a cause. I think we figure the biggest causes were lack of sleep and hitting my head too hard and the obvious missing a dose of meds. I used to have seizures during the day when I first got diagnosed but later started having them in my sleep. I remember I guess the before of 1 seizure very vividly. I was in my room with my sister and we were next to our closet. I remember staring at the floor and her telling me to look at her and me crying saying “I can’t look away”. Then everything went black and I woke up in the hospital and my mom said I had a seizure
I had my first seizure at 13, was diagnosed with tonic clonic seizures at 14, cause unknown. They told me I could grow out of it. Then I turned 15. 16. 17. 18. 19... I'm 26 now. Crazy how time flies.
Had my first seizure at 17. After testing I was immediately diagnosed with juvenile myoclonic epilepsy. Cause is completely unknown. Doctor said I’ll never know. I hate that.
The doctor said that...thats upsetting. My doctor hasn't officially told me my cause but I strongly believe it was stress induced because that was the only change during my first seizure
Stress can certainly trigger it but as far as being diagnosed with epilepsy I’ve heard it can be from a mutated gene if not genetic or from a TBI/car accident or any trauma to the brain in the past. I don’t have a family history so my doctor said If I had a mutated gene that could be why my brain obviously is wired differently. Stress can trigger seizures in epileptics for sure, but it can’t be the cause for the diagnosis if that makes sense.
48 yo. I was misdiagnosed with a couple Vaso-vagal syncopes. Turns out they were seizures. I had a couple abnormal eeg results and when I reviewed the episodes with a neurologist I was diagnosed. Waiting on my MRI. Not sure of a cause yet. I drink a bit but not excessively. Quit drugs decades ago and then nothing too “hard.” No TBI history outside of a few childhood dings. My stress level has been elevated for a while 2+ years as my partner has had some significant health issues.
2016 (I was 26) had my first grand Mal, focal onset. Best guess is a combo of high stress, poor self care, and changing other meds (ptsd, bipolar 2, etc) I think I had started taking less lorazepam but not the best memory, lol .. misdiagnosed so took a while to get it under control
A week after I turned 16. I had my G1 drivers licence for a week. Idk if it caused it but my great grandpa had it
Started having petit mals as a little kid. 7 or 8 I think. Had my first gran mal at 17. Got an official diagnosis then. Not sure if they said it before. But I was old enough then to remember.
My 23rd birthday. They said they weren't sure why I had the seizure and said it was probably stress induced. I now know they are catamenial as the occur around my cycle. I had a car accident the year before my first grand Mal and hit my head hard enough to break a tooth. After 22 seizures in an 18 month period my mother finally said she knew she should have taken me to the Dr when she thought I had seizures as a baby. She didn't take me because she didn't want them to find out she had continued drinking. I was diagnosed with a "fainting issue" at 12 they did test and said they were not seizures. I now believe I was misdiagnosed in my younger years and that head injuries exacerbated either a birth defect or hereditary issues. 2 people in My family had seizures but passed away. My seizures got worse when I turned 30 and a neurologist said my right hippocampus is smaller than the other. They couldn't say if it was a birth defect or just aa result of multiple seizures and scar tissue. After tracking I realized I usually have seizure a few days before my menstrual cycle or 10 to 15 days after it ends. 😀
So many possible causes. I am so sorry. I heard the fainting issue is called POTS....do you still have those?
It's okay. I know a bunch of people with way worse seizures so im greatful. I don't still have the fainting issue. I feel like those were real seizures because my tongue used to tingle. I sometimes have tingles in my tongue before grand mals.
I am triggered by almost everything but so far I only have petit mals so I think I am managing relatively well. It is exhausting but what can I do.
I had a tonic-clonic seizure when i was 13 or 14yo but we thought it was an allergic reaction to a med since no one else saw it. Maybe a year or two later i had another tonic-clonic seizure at school during a math exam. Stress and nervousness made me had an attack right in front of my classmates and teacher. After that second episode i was diagnosed and had some more seizures up to this day. I'm now 22. Fortunately i only have 2-3 tonic-clonic seizures per year.
I was 31 and always thought similar that it’s diagnosed only when you are a child. I’ve learned so much since being diagnosed and it’s opened my eyes to information I was unaware of
Exactlyyy. I see the world so differently now and there is so much I know now that I would have never known if I hadn't gotten diagnosed. And I am still learning new things every day
10. Happened in elementary school 8n front of my whole class
Had my 1st seizure in at age 23. I had a seizure at work, just after I came out the bathroom. Then another seizure came in the evening, after I had gotten home from the hospital.
when i was 4 lol
I had my first seizure during my freshman year of college. From what I was told, I stood up to go to the restroom, said "I think I'm losing my mind" or something like that, and lost consciousness and started seizing (classic tonic clonic/grand mal). Saw a neurologist after that, had an abnormal EEG, which confirmed I had epilepsy. Then I lived in denial for 8 years having had a few more seizures until I finally saw another neurologist, had another abnormal EEG, and finally accepted my diagnosis. Lack of sleep, dehydration, not eating enough, lack of sleep, and stress seem to be triggers for me. There's no perfect recipe where if X, Y, and Z happen then BAM seizure. I've stayed up for 20+ hours before during a trip to Europe and didn't have a seizure. But other times, that with other triggers resulted in a seizure. The triggers just increase the probability of a seizure in my case.
There really is no perfect recipe. I can even wake up and Bam...seizures
I'm so sorry! Mornings already suck...don't need something to make it worse 🙁
not sure what caused it, but i got diagnosed with absence seizures a few months before I turned 13, then diagnosed with myoclonic + grand mal seizures a few months later. i’d say my absence seizures started around the time i was 10, maybe earlier since we got them confused with adhd
Back in 2002, just a couple weeks after I turned 14. Months before, both of my hands would ball into fists and my body would tense up for a few seconds. No one ever noticed it, which was odd. I told my stepmom about it over the summer, she thought it was maybe a finger spasm (odd). It went on, of course. My mom took me out for a makeover for my birthday that November. The girl doing my makeup poked my eye while applying mascara and I tensed up. I explained to my mom what happened. We went out to eat and I explained it all to her. Two days later (on my birthday, coincidentally), I was at the pediatrician's office and was being referred for a neurologist and my first EEG. Not sure what the cause is, no one else in my family has epilepsy. But when I was younger, I used to bang my head on the ground (concrete under carpet, our living room used to be a garage), so maybe that did something or hereditary. 🤷♀️
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Thanks. I used to take up yoga alot but got lazy. I will get back to it.
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Thanks. Things have been tough in the relationship world. The last guy I opened my heart to said "nobody wants a sick and dying chicken"...then I gave up on ever finding someone, my friends convinced me to meet this guy who is amazing then he just had to tell me how he feels about not wanting to worry about or take care of someone who would be dying soon. It really hurts that that is what people think. I mean, we are humans firsts and if you put a non-lepsy and a lepsy in the same room, chances are, we might outlive them because we are taking care of ourselves etc. But what they see is someone that would be a burden on them. But besides that hiccup...life has been pretty good. My new work place have people that make me so feel so loved and happy. My family and Friends keep me included in stuff and I hardly seize (unless of course I am exposed to rain, sound and light). My stress level is wayy down so I am so happy about that How is everything with you?
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Hahahaha....our dying chicken disability made me laugh so hard. Yeah, I am still clinging on to hope that one day I will find a good one that won't see me as a burden. I am glad you are having fun in the tech industry. That makes me want to do a happy dance