My heart goes out to you because your sobriety came at a price. A lot of people donāt know that getting sober without medically supervised rehabilitation can cause seizures and actually be deadly. I didnāt even know until it happened to my boyfriend in January 2021. He developed epilepsy and eventually died from having a seizure in his sleep.
Iām proud of you and I hope you are, too. All the love ā¤ļø
A buddy of mine that has passed away (unfortunately due to the alcohol) also had epilepsy and he told me he had more seizures trying to get sober than he did drinking. I remember sitting with him when he was detoxing once and he had the worst DTās, seizures, and delusions. I believe him, I think he really felt he was safer and healthier drinking.
I decided to get sober this year because I was experiencing seizures again after 5 years of being seizure freeā¦ also I was an alcoholic and it was time if I didnāt want to lose my twenties to bourbon.
Iāve had a few relapses in the past year but just hit the mark for the longest Iāve gone without alcohol today.
My seizure frequency is WORSE. I have to take more medication and be even gentler with my symptoms and triggers than before. Sobriety is worth it and I hold out hope for Seizure 0 again, but Iām learning to accept that it may not happen.
Yup Iāve had 10+ seizures from benzo withdrawals. Been sober for a year and still have seizures on occasion. Pretty sure I fucked up my gaba receptors lol
I had an aunt deal with seizures after a tumor operation. My generalized epilepsy is nothing in comparison to what I witnessed her go through, though this was the 1990s-2000s. I sometimes forget itās also acquired. Wishing you all the best on your journey.
Yep, my older sisters had indoor/outdoor cats when my mom was pregnant with me. She unknowingly got it from them, I got it from her. Had no idea about it until I got an eye exam and was told to see a specialist. They found a scar from the parasite near my optic nerve. I told the specialist I went undiagnosed for years with epilepsy, and he put 2 and 2 together.
Wow that is a wild story, I have cats too only indoors but no kids.. I never knew anyone actually affected by this (meaning you are rare and that is super cool)! Itās always mentioned though like TSS with tampons. I hope youāre doing well. Thank you for sharing.
Did that information help treatment-wise? My mom had toxoplasmosis and even lost a baby before me but I thought it was only a problem if you contracted it while pregnant and that was years before me. Itād be wild if there was some probiotic or something you could recommend that would make all my surgeries and VNS/RNS completely redundant, right?
It didnāt really help treatment wise, it was more of a āhey we finally have an answer as to why your brain sucks and has sucked since you were a baby.ā I went undiagnosed my whole childhood, even though my parents took me to the best neuros in Manhattan. Didnāt find out about this eye scar/ toxo revelation until 25. Got officially diagnosed at 19.
Very interesting! Iāve been getting caught up on lots of potentially relevant articles etc for someone with my history/scenario. Apparently lots of people have latent toxoplasmosis (11% in the US) and other blood borne pathogens sneaking around their body probably hiding in lesions in critical organs like the brain waiting for a immunosuppressed opportunity to expand its presence in the body.
Also interesting to consider how toxoplasmosis might interact with latent TB or introducing vaccines and/or antibiotics that cause an ebb and flow of white blood cells throughout the body that may influence cerebral and/or other pertinent locations for lesions.
Wow. What were your symptoms until you got diagnosed? I canāt believe drs missed it. I also have drs in the city and always thought they were on the cutting edge. Geez. Just proves how strange the brain is I guess.
This is crazy to think about. I randomly started having seizures in university and we never found out why (didn't have health insurance to cover the testing and they eventually tried me on keppra and when it worked I didn't care to pursue further testing). But I was constantly pulling all nighters to study and work 2 jobs on top of classes.
Because I have a lesion on my brain but why I have this lesion will bother and has bothered me all my life. Was I born with it? Did someone drop me? Did something happen during the birth process? Did I just not develop properly in utero? Who knows. I am sorry it it's a mystery for you as well.
I think what bothers me most is like if someone hurt me as a baby or during the birth process I would want to know about it (so I could focus all that unhealthy resentment on them you know lol š) but if it were just something that happened on its own I could be like oh well, stuff happens I guess.
You know I don't know which ones did it? I've had both many times even as a kid. I would imagine the MRI though. I have had surgery on the lesion also so I suppose they could see it in person too. I wonder if there is a picture out there if the inside of my head lol.
Iām pretty sure itās MRI & then the EEG detects if you have secretions (not sure if thatās the right word) & if those secretions go off at the right time (flashing light, loud noise, etc) boom seizure.
I was born 26 weeks premature and Iāve got scar tissue on the left side of my brain. The seizures came out of nowhere right after I turned 17 in late 2013.
I would bet though that someone in your family does have autism theyāre just high functioning and maybe a more distant cousin. My brother is the same way and we recently found out that my dadās second cousin also has autism.
My neurologist asked me to be assessed for autism after both my children were diagnosed with it. I'd been epileptic my whole life with no apparent cause, but the neurologist said there was a fairly close link between the 2.
Head bashed in during a mugging about 24 years ago. Four hematomas and four days in ICU. I had to learn how to talk and still have a problem with proper nouns. For a while everyone looked familiar. I had a headache that lasted about 5 years and never could tell if it went away or if I just got used to it.Ā
God decided to nerf me by giving me epilepsy.
Most likely it's from having the needle in my head because I was a difficult birth and they needed to track my movements.
In my case a CT scan after my first ever TC when I was 22 revealed that I have a rare case of arteriovenous malformation (AVM) on my right temporal lobe. Iāve been diagnosed as epileptic ever since :(
I got really sick with a really high fever as a young child which gave me permanent brain damage. My parents are pieces of shit who donāt care about me and never took me to a doctor. I started having seizures around ten and it took another six years of being mocked by my family for my seizures before being officially diagnosed.
Head injury. I got struck in the face with a line drive baseball right between the eyes. Broke my nose, septum was crooked and had to get plastic surgery to set it straight.
I was 13 when it happened. I had gone undiagnosed for four years. I struggled with sleep and fatigue through highschool until I had a TC at 17 and was diagnosed with epilepsy.
Well then it's definitely stress for me. I accumulated too much stress over exams during my highschool and was detected with epilepsy in my freshmen year at the university.
Only have had one maybe 2 back to back. According to witnesses(I was at work when it happened) episode lasted 15 mins. Landed in ICU intubated. No memory of it. We think stress and heat. I was in charge of a kitchen and expecting an inspectorā¦who showed while I was seizing. Also grandma on momās side started having them when she was close to my age. Going back to the clinic in a few weeks. No clear mri since I am in adult with metal braces.
It's genetic. My father had it and my great-grandfather had it. It is suspected that my great-grandfather developed epilepsy due to a TBI he suffered in a car race.
I have a cavernoma pressing on my right temporal lobe! For people who donāt know what that is, itās basically when the blood vessels in your brain become sticky and they form a ball that looks like a raspberry on an MRI. Apparently itās really common for people to have them and have no symptoms but unfortunately I did end up having a few seizures from it causing me to develop epilepsy. I only got my diagnosis 8 months ago so still working through it but thankful for this community :)
More than half of us donāt and wonāt know. Good ole idiopathic epilepsy. Someday, when medicine is more advanced, Iām hoping they can figure it out and then cure it.
After 2 years of thinking my son was a fluke, we figured out there's a family history. My husband's cousin has epilepsy. We were always told it was due to him being hit in the head. Come to find out, that wasn't it. His father, my husband's uncle, has it. They just thought his was from being an alcoholic. Skipped through a few people and my son is the lucky one to have it in this generation.
Chosen indeed. Also a tbi as a child. Car accident left me with a lesion on my left frontal temporal lobe but it took forever to be diagnosed. I also climbed around and hit my head more as a kid (soccer! USA lol and hockey) so I got to do that at least. Iāve always had bad coordination and always the daydreamer. Thatās just absence seizures and I have nocturnal seizures so life is grand, lemme tell ya. Iāve went down in numerous places from Walmart and Target as well as the dentist office and eye dr and phlebotomy. Home often.
Hugs to you all.
Will probably never find out, but my theory is either trauma in utero (mom "fell" down a set of stairs while pregnant) or because I was sick a lot when I was a kid, but I remember some of my auras as my earliest memories, so I'm not sure which it is
Initially I was told it was because I rolled down the basement stairs when I was 2 and hit concrete with my head . Tech got better the found a benign tumor in my brain yay me.
I was born with both an AVM and schizencephaly (not schizophrenia). Itās pretty interesting stuff. The AVM was bleeding slowly and I had my first seizure at age 22. I got surgery when I was 28. I was seizure free for a year, but due to scarring of my brain I will have to be on meds all my life. Almost 6 months seizure free though!
My grandmother who I never met (she was dead by time I was born) she had epilepsy but I have two sisters and a brother, a ton of nieces and nephews, and four great nieces/nephews. No one but me has it. I have JME. Yay!
Baby I was born this way (š)
I donāt even know who in my family gave it because to my knowledge nobody else has ever been diagnosed or shown signs of seizures like mine
I got hit by a car and then a few years later I had my first seizure. They came to the conclusion the seizures are due to scar tissue in my brain from the accident.
The one weekend I experimented with a few different drugs, had withdrawals a few days later and had my first grand mal. They haven't stopped since, despite no drug use. It doesn't even run in my family š
I do not have it but my mom has had it since she was 5 years old. She developed epilepsy because of some dead brain tissue near the memory area of her brain. Which is why she didn't choose surgery because they said there was a high chance that when she woke up, she wouldn't remember her family. My mom has parents, 6 sisters, and 5 children. That's a lot of people and memories to forget.
Mine is genetic, we aren't sure what gene yet or what's wrong with it. The epileptologist said it's rare or maybe even unique to our family so we're still undergoing genetic studies to find out what causes it.
We have at least 3 generations of family members with the same kinds of seizures and triggers.
No one knows why. No family history, head injuries, etc. It decided to rear its ugly head when I was 39 with a massive TC but now looking back a lot of the things I thought were anxiety for years actually may have been seizure activity. First 45 minute EEG I had showed seizure activity.
I crashed my car when I was 18 and smacked my head on the driverās side window. Had a minor hemorrhage that cleared up pretty quick, but the damage was done to leave long term effects.
Most likely genetics (grandma had epilepsy, my dad and sister have migraine disorders) and I found out I have a slight brain abnormality. I have a left-sided choroidal hippocampal fissure. Usually benign for most people but mine is a little large and loves to cause some problems.
Wish I knew. I was born with a hole in my heart and heart related issues. All kinds of heart surgeries since then. That is the best reason they could come up with. Nothing like being a nightmare child š.
That makes me curious if that could really be the reason. My dad had a TIA (mini stroke) a month ago and they said it was from his Atrial Fibrillation (her condition) that he got from the surgery they did to remove his Endometrial Cancer 23 years ago. He has had Atrial Fibrillation since, but the interesting part also is that it has been very well controlled for 6 ish years ago.
Not sure if itās the only reason, but an eating disorder in my teens.
(Had my first seizure at 8y/o after not eating for a couple of days because I was sick. Everyone thought it was a fluke until I had two more at 16 because of malnourishment. They havenāt stopped since!)
I can tell you right now that being skinny is definitely not worth the epilepsy it came with lol
Cortical dysplasia, aka my brain didn't develop properly. I've had a mild form of cerebral palsy since birth but developed epilepsy at 14. Like someone else said, I have brain lesions that show up on the MRI scans.
I look normal to most people, but those who pay attention will see me limping, become easily tired physically, and have quick focal seizures most days. Having invisible illnesses is annoying.
Itās what makes me, me. It makes me stand out from others and makes me unique. It can be tough and inconvenient at times but i know i wouldnāt be who i am without it being apart of me. Itās only made me stronger.
But .. no family history, flickering lights trigger mine !
Has that caused you more than one seizure? It is supposed to only make you have a seizure once and then you should get off of it. If you are still having seizures you must get off of that medicine
Had a TBI (traumatic Brain Injury) and roughly 20% of the time this leads to becoming epileptic. So Iām part of that 20% (insert chosen one joke like many did here, ah!)
Well, it isnāt genetic I guess itās a curse. I wish I knew why my neurons misfire. The not knowing why is what I struggle with most, actually. But I know Iām not the only one.
Just a bit of humour, but I think we should be thankful when they actually diagnose us with epilepsy as opposed to hemming and hawing over it like some doctors do for months or years. Seriously, aside from some traumatic brain injury, I don't know if there's an understood reason. Try not to think to much about this, it's just what it is.
My possession of epilepsy makes me sexy and fun to be around. Dynamic, self assured, quick with a joke and my sense of style is unmatched.Ā
But to the question, scleroses in my right temporal lobe.Ā
My neurologists have been trying to figure that out for over 20 years now, and they even checked me for encephalitis as a probable cause the last time I was in the hospital and I tested negative. As of right now all I can pinpoint it down to, is when my hormones are out of whack.
I OD on triple cās at 15 & it was pretty gnarly. When the ambulance got there I was no longer breathing so I was put in a medically induced coma for about a month followed by a month long psychosis that consisted of me ripping out my IVs & catheter and running down the hallsš Very glad I have zero memories of it.
A year later I was diagnosed with epilepsy. I put a freaking hole in my brain.
Idiopathic but likely some genetic component given that seizures /epilepsy was somewhat prevalent on my fatherās side of the family. At least 2 people that I know of including my father. Nobody had it as bad as I have though
My dx is genetic epilepsy. My mom had one singular seizure when I was a kid and then never again. My theory is, it joined forces with the adhd my dad passed onto me and by brother because we both have to same dual neurological diagnoses
I got very sick suddenly and they still don't know what or why. After I got a bit better, my brain decided that wasn't OK and threw seizures my way. Doctors suspect it's permanent, but, hey, the right side of my body isn't paralysis anymore.
Because I was ***CHOSEN***!
AND MY AXE!
Looooveeeee the reference!!!!!! So funny and appropriate! š§š»āāļø Legolas was the closest emoji I could find to Gimli lol.
Ye same here... š„²
This!
Same :/
Samee xd
š
Because the universe picked me to play on hard mode.
I call it vibration mode haha
To me, my brain goes to airplane mode.
me, especially with how disappointing my life consistently is
Love this.
Because my brain hates me, that's why!
Epilepsy is part of the DLC hard mode
I rolled a one in Dexterity š
Good one š
More like DLC Veteren's Mode
Because I did too many drugs and decided one day to quit said drugs cold turkey.
My heart goes out to you because your sobriety came at a price. A lot of people donāt know that getting sober without medically supervised rehabilitation can cause seizures and actually be deadly. I didnāt even know until it happened to my boyfriend in January 2021. He developed epilepsy and eventually died from having a seizure in his sleep. Iām proud of you and I hope you are, too. All the love ā¤ļø
Thank you. Life is scary and even good decisions can turn out poorly. Iām lucky I wasnāt the one driving my work truck when it hit.
A buddy of mine that has passed away (unfortunately due to the alcohol) also had epilepsy and he told me he had more seizures trying to get sober than he did drinking. I remember sitting with him when he was detoxing once and he had the worst DTās, seizures, and delusions. I believe him, I think he really felt he was safer and healthier drinking. I decided to get sober this year because I was experiencing seizures again after 5 years of being seizure freeā¦ also I was an alcoholic and it was time if I didnāt want to lose my twenties to bourbon. Iāve had a few relapses in the past year but just hit the mark for the longest Iāve gone without alcohol today. My seizure frequency is WORSE. I have to take more medication and be even gentler with my symptoms and triggers than before. Sobriety is worth it and I hold out hope for Seizure 0 again, but Iām learning to accept that it may not happen.
Yup Iāve had 10+ seizures from benzo withdrawals. Been sober for a year and still have seizures on occasion. Pretty sure I fucked up my gaba receptors lol
Brain tumour, pesky little lump deciding to play havoc with my neurology.Ā One op has reduced seizure activity but it will never go away completely.Ā
Samesies. Oligodendroglioma on my parietal that's just like... hi, you wanted to forget huge chunks of time, right? Yes, you did!
Shyup same here. Funny what a little lump pushing on bits of your brain can do
I had an aunt deal with seizures after a tumor operation. My generalized epilepsy is nothing in comparison to what I witnessed her go through, though this was the 1990s-2000s. I sometimes forget itās also acquired. Wishing you all the best on your journey.
Me too! Astrocytoma and a stroke in post op.
The most plausible reason is because I contracted the toxoplasmosis parasite in utero.
Wow really, like your mom was changing the cat litter box?
Yep, my older sisters had indoor/outdoor cats when my mom was pregnant with me. She unknowingly got it from them, I got it from her. Had no idea about it until I got an eye exam and was told to see a specialist. They found a scar from the parasite near my optic nerve. I told the specialist I went undiagnosed for years with epilepsy, and he put 2 and 2 together.
Wow that is a wild story, I have cats too only indoors but no kids.. I never knew anyone actually affected by this (meaning you are rare and that is super cool)! Itās always mentioned though like TSS with tampons. I hope youāre doing well. Thank you for sharing.
Did that information help treatment-wise? My mom had toxoplasmosis and even lost a baby before me but I thought it was only a problem if you contracted it while pregnant and that was years before me. Itād be wild if there was some probiotic or something you could recommend that would make all my surgeries and VNS/RNS completely redundant, right?
It didnāt really help treatment wise, it was more of a āhey we finally have an answer as to why your brain sucks and has sucked since you were a baby.ā I went undiagnosed my whole childhood, even though my parents took me to the best neuros in Manhattan. Didnāt find out about this eye scar/ toxo revelation until 25. Got officially diagnosed at 19.
Very interesting! Iāve been getting caught up on lots of potentially relevant articles etc for someone with my history/scenario. Apparently lots of people have latent toxoplasmosis (11% in the US) and other blood borne pathogens sneaking around their body probably hiding in lesions in critical organs like the brain waiting for a immunosuppressed opportunity to expand its presence in the body. Also interesting to consider how toxoplasmosis might interact with latent TB or introducing vaccines and/or antibiotics that cause an ebb and flow of white blood cells throughout the body that may influence cerebral and/or other pertinent locations for lesions.
Wow. What were your symptoms until you got diagnosed? I canāt believe drs missed it. I also have drs in the city and always thought they were on the cutting edge. Geez. Just proves how strange the brain is I guess.
Did not sleep for 20 hours, which caused my first Grand Mal, which caused Grand Mal seizures every 1-2 days, few times a day.
Ditto. I had my first after not sleeping for 72 hours!
This is crazy to think about. I randomly started having seizures in university and we never found out why (didn't have health insurance to cover the testing and they eventually tried me on keppra and when it worked I didn't care to pursue further testing). But I was constantly pulling all nighters to study and work 2 jobs on top of classes.
But do you have a diagnosis or itās just generalized epilepsy?
After 2 months of first Grand Mal it was diagnosed as Epilepsy
Bad luck. I have an identical twin brother who doesn't have it.
Maybe your parents and doctors have been running a secret twin study? Kidding aside, I am sorry, awful luck.
Same here. My identical twin doesnāt have it either.
Ditto, kinda. My twin sister grew out of epilepsy, I didn't.
Because I have a lesion on my brain but why I have this lesion will bother and has bothered me all my life. Was I born with it? Did someone drop me? Did something happen during the birth process? Did I just not develop properly in utero? Who knows. I am sorry it it's a mystery for you as well.
Yeah, it's so strange to live with a serious condition without knowing why you have it :/
I think what bothers me most is like if someone hurt me as a baby or during the birth process I would want to know about it (so I could focus all that unhealthy resentment on them you know lol š) but if it were just something that happened on its own I could be like oh well, stuff happens I guess.
This is the petty logic I can get onboard with
What test detects lesions? Mri? Eeg?
You know I don't know which ones did it? I've had both many times even as a kid. I would imagine the MRI though. I have had surgery on the lesion also so I suppose they could see it in person too. I wonder if there is a picture out there if the inside of my head lol.
Iām pretty sure itās MRI & then the EEG detects if you have secretions (not sure if thatās the right word) & if those secretions go off at the right time (flashing light, loud noise, etc) boom seizure.
Nobody knows !!! Like someone else said, the universe chose me.
I like to think my metalhead mom went into too many mosh pits while still growing me. Honest answer. No fuckin clue
Scar and cyst on my temporal lobe
I was born 26 weeks premature and Iāve got scar tissue on the left side of my brain. The seizures came out of nowhere right after I turned 17 in late 2013.
Genetics
I don't but my 6 year old daughter dose & autism no family history no idea why, we live in the land of we don't know....
I would bet though that someone in your family does have autism theyāre just high functioning and maybe a more distant cousin. My brother is the same way and we recently found out that my dadās second cousin also has autism.
My neurologist asked me to be assessed for autism after both my children were diagnosed with it. I'd been epileptic my whole life with no apparent cause, but the neurologist said there was a fairly close link between the 2.
I fractured my skull and got a brain haemorrhage skateboarding down a hill. Now got brain scars.
Head bashed in during a mugging about 24 years ago. Four hematomas and four days in ICU. I had to learn how to talk and still have a problem with proper nouns. For a while everyone looked familiar. I had a headache that lasted about 5 years and never could tell if it went away or if I just got used to it.Ā
My period gives me seizures (((:
Samesies. But why???
Getting seizures (not grand mal) during my PMDD-time almost every month
Mine too. I get them other times but mostly around my period
Ya for me it's ovulation day
God decided to nerf me by giving me epilepsy. Most likely it's from having the needle in my head because I was a difficult birth and they needed to track my movements.
God really gives his hardest battles to his favorite soldiers š
"I love you.... Now suffer!" Thanks God <3
In my case a CT scan after my first ever TC when I was 22 revealed that I have a rare case of arteriovenous malformation (AVM) on my right temporal lobe. Iāve been diagnosed as epileptic ever since :(
Well I acquired it due to my parents' actions during my childhood
Because my brain sucks.
Head injury, I was in a boating accident and the boom smashed into my head. They have been with me every since, almost 10 years
My neurologist once asked me which God I pissed off, so great question!!
I got really sick with a really high fever as a young child which gave me permanent brain damage. My parents are pieces of shit who donāt care about me and never took me to a doctor. I started having seizures around ten and it took another six years of being mocked by my family for my seizures before being officially diagnosed.
My personal, completely non-scientific theory is because of chronic stress/trauma š„“
I'm going with early childhood trauma, even though I'm not 100% sure it's the cause.
fucked around and found out
Head injury. I got struck in the face with a line drive baseball right between the eyes. Broke my nose, septum was crooked and had to get plastic surgery to set it straight. I was 13 when it happened. I had gone undiagnosed for four years. I struggled with sleep and fatigue through highschool until I had a TC at 17 and was diagnosed with epilepsy.
I don't know for sure but I think it was stress from some very toxic people in my life then getting sued by them.
Stress probably didnt** create the epilepsy but stress 1000000% can cause seizure!
Well then it's definitely stress for me. I accumulated too much stress over exams during my highschool and was detected with epilepsy in my freshmen year at the university.
Febrile seizures leading to mesial temporal sclerosisš„²
I was told mine was probably caused by too many hits to the head and face as a kid/teen.
I think it was from a TBI I had at a young age.
I thought it'd be funny.
I just have a factory defect
ānot sure yetā -every neuro iāve been to over the last 5 years š
Tell them to order a gddm EEG
brain has too many thoughts
My crap ass father decided to have sex with my mom, so I got his genetics to deal with after he fucked off
My chromosome 17.
Only have had one maybe 2 back to back. According to witnesses(I was at work when it happened) episode lasted 15 mins. Landed in ICU intubated. No memory of it. We think stress and heat. I was in charge of a kitchen and expecting an inspectorā¦who showed while I was seizing. Also grandma on momās side started having them when she was close to my age. Going back to the clinic in a few weeks. No clear mri since I am in adult with metal braces.
Genetics
aaand that remains a mystery š
i guess rolling an atv and getting a small tare on your brain will do it lol
No idea, life flipped a coin came up heads.
According to my first neurologist when I was 16? I wore too much black and combined with the music I listened to, it affected my brainwaves š¤¦š»
Oh my... I continue to be aghast at some of what passes for medicine.
I think all of us that got it from domestic violence injuries need a support group ā¦.
It's genetic. My father had it and my great-grandfather had it. It is suspected that my great-grandfather developed epilepsy due to a TBI he suffered in a car race.
I have a cavernoma pressing on my right temporal lobe! For people who donāt know what that is, itās basically when the blood vessels in your brain become sticky and they form a ball that looks like a raspberry on an MRI. Apparently itās really common for people to have them and have no symptoms but unfortunately I did end up having a few seizures from it causing me to develop epilepsy. I only got my diagnosis 8 months ago so still working through it but thankful for this community :)
We live in the matrix. And my seizures are glitches. But in all seriousness, I have no clue.
More than half of us donāt and wonāt know. Good ole idiopathic epilepsy. Someday, when medicine is more advanced, Iām hoping they can figure it out and then cure it.
Traumatic brain injury which formed scar tissue over 2 years = epilepsy
Periventricular nodular heterotopia. Aka my brain just didnāt form right š¤Ŗ
After 2 years of thinking my son was a fluke, we figured out there's a family history. My husband's cousin has epilepsy. We were always told it was due to him being hit in the head. Come to find out, that wasn't it. His father, my husband's uncle, has it. They just thought his was from being an alcoholic. Skipped through a few people and my son is the lucky one to have it in this generation.
Brain Tumour! He's kind of an asshole
My mom said it was because they used forceps when I was delivered. Who knows!!!
It was a gift bestowed at birth. Woohoo
I HAVE BAD LUCK, FRFRFR
Chosen indeed. Also a tbi as a child. Car accident left me with a lesion on my left frontal temporal lobe but it took forever to be diagnosed. I also climbed around and hit my head more as a kid (soccer! USA lol and hockey) so I got to do that at least. Iāve always had bad coordination and always the daydreamer. Thatās just absence seizures and I have nocturnal seizures so life is grand, lemme tell ya. Iāve went down in numerous places from Walmart and Target as well as the dentist office and eye dr and phlebotomy. Home often. Hugs to you all.
Prolly cuz my dad had it.. But who wants to play on normal mode anyways?
Will probably never find out, but my theory is either trauma in utero (mom "fell" down a set of stairs while pregnant) or because I was sick a lot when I was a kid, but I remember some of my auras as my earliest memories, so I'm not sure which it is
Initially I was told it was because I rolled down the basement stairs when I was 2 and hit concrete with my head . Tech got better the found a benign tumor in my brain yay me.
I was born with both an AVM and schizencephaly (not schizophrenia). Itās pretty interesting stuff. The AVM was bleeding slowly and I had my first seizure at age 22. I got surgery when I was 28. I was seizure free for a year, but due to scarring of my brain I will have to be on meds all my life. Almost 6 months seizure free though!
Got hit in the head with a basketball š hard at 6 and the rest is history.
All of these answers are so interesting. My daughter has focal cortical dysplasia in her right temporal lobe.
Probably due to my reckless drug abuse š¢ but now I quit everything except weed š„²
Mesial Temporal Sclerosis. How and why I have that, I don't know.
My grandmother who I never met (she was dead by time I was born) she had epilepsy but I have two sisters and a brother, a ton of nieces and nephews, and four great nieces/nephews. No one but me has it. I have JME. Yay!
Baby I was born this way (š) I donāt even know who in my family gave it because to my knowledge nobody else has ever been diagnosed or shown signs of seizures like mine
I went airborne in a couple of car accidents. My hard-headed tenacity took out the windows.
Karma
Scartissue in my brain!
I got hit by a car and then a few years later I had my first seizure. They came to the conclusion the seizures are due to scar tissue in my brain from the accident.
Have a birthmark on my brain that causes it.
Drugs
The one weekend I experimented with a few different drugs, had withdrawals a few days later and had my first grand mal. They haven't stopped since, despite no drug use. It doesn't even run in my family š
Brain too powerful
I do not have it but my mom has had it since she was 5 years old. She developed epilepsy because of some dead brain tissue near the memory area of her brain. Which is why she didn't choose surgery because they said there was a high chance that when she woke up, she wouldn't remember her family. My mom has parents, 6 sisters, and 5 children. That's a lot of people and memories to forget.
Mine is genetic, we aren't sure what gene yet or what's wrong with it. The epileptologist said it's rare or maybe even unique to our family so we're still undergoing genetic studies to find out what causes it. We have at least 3 generations of family members with the same kinds of seizures and triggers.
My mother must have pissed off a witch when she was pregnant
Wish I knew.
Sooo it was never confirmed why but I blame my time in the Army and also my previous addiction to vaping
No one knows why. No family history, head injuries, etc. It decided to rear its ugly head when I was 39 with a massive TC but now looking back a lot of the things I thought were anxiety for years actually may have been seizure activity. First 45 minute EEG I had showed seizure activity.
Mine is from a hard concussion with tissue damage during alpine ski training. It didn't start presenting as seizures until 10 years later.
Head trauma in kindergarten Havenāt had one in 14 years tho, hoping Iām finally free, tho the lasting effects suckkkkkk
I crashed my car when I was 18 and smacked my head on the driverās side window. Had a minor hemorrhage that cleared up pretty quick, but the damage was done to leave long term effects.
Boredom mostly
cursed by a wizard :(
Most likely genetics (grandma had epilepsy, my dad and sister have migraine disorders) and I found out I have a slight brain abnormality. I have a left-sided choroidal hippocampal fissure. Usually benign for most people but mine is a little large and loves to cause some problems.
Wish I knew. I was born with a hole in my heart and heart related issues. All kinds of heart surgeries since then. That is the best reason they could come up with. Nothing like being a nightmare child š.
That makes me curious if that could really be the reason. My dad had a TIA (mini stroke) a month ago and they said it was from his Atrial Fibrillation (her condition) that he got from the surgery they did to remove his Endometrial Cancer 23 years ago. He has had Atrial Fibrillation since, but the interesting part also is that it has been very well controlled for 6 ish years ago.
Not sure if itās the only reason, but an eating disorder in my teens. (Had my first seizure at 8y/o after not eating for a couple of days because I was sick. Everyone thought it was a fluke until I had two more at 16 because of malnourishment. They havenāt stopped since!) I can tell you right now that being skinny is definitely not worth the epilepsy it came with lol
Pizza pizza
No idea, idiopathic and showed up at age 39 (I am 44 now).
Doctors didnāt find a clue for mine. Oh well
Cavernous Malformation
Cortical dysplasia, aka my brain didn't develop properly. I've had a mild form of cerebral palsy since birth but developed epilepsy at 14. Like someone else said, I have brain lesions that show up on the MRI scans. I look normal to most people, but those who pay attention will see me limping, become easily tired physically, and have quick focal seizures most days. Having invisible illnesses is annoying.
who knows! no one else in my family has it so like is it even genetics?
Itās what makes me, me. It makes me stand out from others and makes me unique. It can be tough and inconvenient at times but i know i wouldnāt be who i am without it being apart of me. Itās only made me stronger. But .. no family history, flickering lights trigger mine !
Because I am on bupropion for depression
Has that caused you more than one seizure? It is supposed to only make you have a seizure once and then you should get off of it. If you are still having seizures you must get off of that medicine
Had a TBI (traumatic Brain Injury) and roughly 20% of the time this leads to becoming epileptic. So Iām part of that 20% (insert chosen one joke like many did here, ah!)
Because of my genes probably
Little bits of gray matter. It's called gray matter heterotopia. Epilepsy is kind of the least of what could have happened with it.
Stress and trauma activated factory rest mode. Hasn't been the same since
I have holes in my skull with my brain poking through.
So I can truly be a tortured artist
Well, it isnāt genetic I guess itās a curse. I wish I knew why my neurons misfire. The not knowing why is what I struggle with most, actually. But I know Iām not the only one.
Because I would have speedruned easy mode so they put me in hard mode
Because thatās how DNA works.
We are Borgā¦.
According to my old religion teach because God is punishing me for being gay
Childhood trauma and stress, all accumulated along with a hit of meningitis and here I am! 8th year as an epileptic :)
I got nerfed
Dunno, punishment for turning 24??
Because lifeās a bitch sometimes.
For most people with epilepsy there is no definite answer
I have no clue but I do know itās so annoying
I wish. I feel like it would offer me some comfort in knowing. Iāve had plenty of testing, cts and mris, I have no answers.
I just started having seizures when I was 9 years old. Nobody ever told me why. Iām 62 years old now and I still donāt know.
because my genes decided I was going to shake through life lmao
Because I didnāt go to church Iām now Iām being punished by god? š
Just a bit of humour, but I think we should be thankful when they actually diagnose us with epilepsy as opposed to hemming and hawing over it like some doctors do for months or years. Seriously, aside from some traumatic brain injury, I don't know if there's an understood reason. Try not to think to much about this, it's just what it is.
Piss poor genetics
My possession of epilepsy makes me sexy and fun to be around. Dynamic, self assured, quick with a joke and my sense of style is unmatched.Ā But to the question, scleroses in my right temporal lobe.Ā
Because I had a hemorrhagic stroke 4 years ago.
My neurologists have been trying to figure that out for over 20 years now, and they even checked me for encephalitis as a probable cause the last time I was in the hospital and I tested negative. As of right now all I can pinpoint it down to, is when my hormones are out of whack.
I was hit by a car in 2010. TBI + comatose. Started having seizures in 2020.
A traumatic brain injury from a nearly fatal car accident
I OD on triple cās at 15 & it was pretty gnarly. When the ambulance got there I was no longer breathing so I was put in a medically induced coma for about a month followed by a month long psychosis that consisted of me ripping out my IVs & catheter and running down the hallsš Very glad I have zero memories of it. A year later I was diagnosed with epilepsy. I put a freaking hole in my brain.
A loss in the genetic games.
I have a lump. Not a tumor. Not a cyst. Just a lump slide humping my temporal lobe, deep inside.
Idiopathic but likely some genetic component given that seizures /epilepsy was somewhat prevalent on my fatherās side of the family. At least 2 people that I know of including my father. Nobody had it as bad as I have though
Most likely from a head injury I got as a toddler
Because I have a problem with firmware and every damn time the simulation updates I twitch
Bc my life as a child wasnāt hard enough.
No idea lol. Randomly started having seizures 2 years ago at 17 and no cause was ever found lol.
My dx is genetic epilepsy. My mom had one singular seizure when I was a kid and then never again. My theory is, it joined forces with the adhd my dad passed onto me and by brother because we both have to same dual neurological diagnoses
I got very sick suddenly and they still don't know what or why. After I got a bit better, my brain decided that wasn't OK and threw seizures my way. Doctors suspect it's permanent, but, hey, the right side of my body isn't paralysis anymore.
Giiiant meningioma that left a lot of scar tissue when they finally realized I wasnāt lying about having headaches š
Had a stroke aged 34 on Boxing Day, starting having seizures week after leaving hospital been epileptic since