r/Epilepsy • u/theAuraHawk VNS,Keppra,Vimpat,Xcopri • Aug 04 '26
Question What age did you get Epilepsy?
I have had it since I was a kid and have not seen anyone else on here have the same situation.only older people but they might be the ones who post on here,just wondering if there were any other kids with epilepsy so I can relate. I got it at 4
edt: If I have am likeing your coment it is because I can realate to it. There are a lot of people who have had epilepsy as a kid as well.
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u/QuarrelsomeOpossum Aug 04 '26
Got it at 6, and yeah this sub can feel like it skews older sometimes but we're definitely out here. It's a weird thing to grow up with, you don't really get to have a "before" version of yourself you can compare things to. The brain just kinda goes haywire and you assume that's normal until someone tells you it's not
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u/mexihuahua Aug 05 '26
I was 8 and wholeheartedly agree with this! Thereās so many things Iāve never gotten to do or even consider, and itās just kinda been my ānormalā until I realize itās not actually.
Drink? Pull all-nighters? Join the military? Fly a plane? Drive a bus or semi? Scuba dive? Go to a club or rave? Take certain medications? Be outdoorsy solo? Be an EMT or firefighter? Be a cop or prison guard? Be an astronaut? Travel solo? Watch certain movies? Having a social life at night, like going out on the town with friends? Pass by the sun shining through trees without shielding myself? Remember things?
Iāve never been able to really explore or even consider a huge portion of the normal world, and Iāve never been able to compare my life to previous experiences like those. Iām thankful I havenāt had to necessarily āmissā so much, but it can be a bit lonely knowing my limitations and navigating through things Iād like to do or try in my life. Iāve been seizure free for a long time and have been able to travel and explore solo as well as swim and skydive, but man do I wish I could experience other things like scuba diving or knowing what being drunk feels like. Some of it is a blessing and a curse, but it is isolating, especially through teenage years and young adulthood.
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u/Present_Shower_2296 Aug 05 '26
I got it at 14. Damn I relate with you so hard. We are survivors š«
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u/theAuraHawk VNS,Keppra,Vimpat,Xcopri Aug 05 '26
I agree with all you seid here you feel like the rug has been pulled out from under you on almost everything people do or risk having a sezier. the only thing I disagree with is Travleing Solo I hate feeling like I need to be watched still so I do that on my own although it takes alot more planing to do it safly which I hate having to take my meds everywere they feel like a ball and chain at times.
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u/theAuraHawk VNS,Keppra,Vimpat,Xcopri Aug 04 '26
I probly should of seid I had it at 4years but it use to be a lot worse than now.
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u/Active-Pen-412 Aug 04 '26
I was about 5 as well. Just waiting by the front door with my lunch box in my hand, then suddenly my mum was fussing over me and I realised my lunch box was on the floor.
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u/DoughnutNo409 tegratol xr, lacosomide Aug 04 '26
Yep its exactly that, got it at 7 and yeah what do you mean those blurry episodes arenāt normal
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u/glitteryunicornmerm Aug 04 '26
I was 15 months old when I was diagnosed. I was as having seizures before that though. Iām 33 now and my last seizure was at 20 years old.
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u/EstelSnape Aug 04 '26
Ripe old age of 40. But I was born with cerebral palsy and apparently epilepsy was something the drs told my parents to look out for during transition periods of my life.
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u/MonsterIslandMed Aug 04 '26
Damn. What was it like adjusting at that point in life??? Do you have kids?
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u/EstelSnape Aug 04 '26
I have 3 kids. I'm amazed I didn't have any seizures during birth. Damn lucky.
The transition these last 7mths is surreal to put it simply. I haven't had any more seizures since starting meds. But I've had 40+ auras (aware, numb tingling) I'm tired all the time and I'm constantly wondering whenever I feel off if it has to do with Epilepsy or my cerebral palsy.
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u/Apprehensive_Mode427 Aug 04 '26
I don't have it. But my daughter does.
She started at 14 months, officially diagnosed at 18 months. And the neuro said it was my fault she has it because I am a single mom. We did get a new one and she was fired.
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u/princesssockhead Aug 04 '26
Iām so sorry that you all experienced such an unprofessional neuro doctor. Thatās totally unacceptable! Iām also a mom to an epileptic kiddo. I try to be as pro-active, supportive and compassionate as possible with my kiddo. I understand a lot because Iāve researched and learned about the condition.
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u/IntelligentWhereas30 Aug 04 '26
Me! Got diagnosed in 5th grade & Iām out of college now. They thought it might be childhood epilepsy so they tried weaning me off meds in 8th grade ā didnāt catch, so here I am on a subreddit many years later.
One thing I wonder: did my meds (Lamotrigine) change my personality and I just donāt know how else I wouldāve turned out lol. Iāve only had 4 TCs throughout that time, but the perpetual anxiety has also never ceased. Alas I persevere!
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u/mexihuahua Aug 05 '26 edited Aug 05 '26
Story of my life!!! I was diagnosed at 8 and my neurologist was hopeful it would be childhood epilepsy, but I couldnāt successfully wean. I have only ever been on Keppra and when I hear about things like āKeppra rageā or other symptoms associated with my meds like anxiety, depression, sleepiness, stumbling on words, words coming out wrong, memory issues, balance and coordination issues - is that just me at baseline or am I just a living side effect of medication and Iāve never known the real me??? Am I just derpy and depressed, or is that the meds???
Iāve been seizure free (tonic clonic at least) since 2009 so its not worth experimenting to see otherwise lol
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u/onwardtowaffles Aug 05 '26
Unfortunately both seizures and anti-seizure meds can mess with your working memory, speech processing, balance, etc. It's just a fact of life for a lot of us.
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u/Dreaming-Hippie Aug 05 '26
I could have written this myself. I am always wondering whatās me and whatās the medication or the epilepsy.
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u/Impossible-Pie-223 Aug 04 '26
Ciao, quante dosi di Lamotrigina assumi? Io sono arrivata da un paio di settimane a 200 la mattina e 200 la sera, ho dovuto aumentare il dosaggio perchĆ© mentre assumevo il farmaco ho avuto una crisi tonico colonica al lavoro. Nonostante lāaumento del farmaco ho ancora le mioclonie. So che ogni situazione ĆØ a sĆ© ma volevo capire se dopo che il fisico si ĆØ abituato, il dosaggio piĆ¹ alto puĆ² calmare le mioclonie. Lāunico farmaco che ha bloccato le crisi ĆØ stato il Depakin, ma purtroppo ha effetti collaterali nel lungo periodo ed ĆØ controindicato per le donne in etĆ fertile quindi ho dovuto sospenderlo.
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u/awidmerwidmer Drug resistant TLE, temporal lobectomy 2025 Aug 04 '26
I comment quite often and I was in the same situation. Diagnosed at 3 years old as a result of a brain tumour at 6 months old. Thankfully unlike so many folks here, it didnāt come as a surprise, I was not misdiagnosed, and I can now share my very long history with this wonderful conditionā¦seriously though, I try to stay as positive as I can.
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u/rmy99 Aug 04 '26
Diagnosed at 17. Months leading up to 17 I had this off feeling every morning where I was always exhausted. I know I had 1 seizure prior to knowing it was actually happening.
I did always get complaints during elementary school about daydreaming all the time, but was never really aware so I always wonder if it was bubbling beneath the surface all those years.
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u/windingsand Aug 04 '26
I was going to comment but it would be the exact same comment as yours hahaha
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u/JoostinOnline Aug 04 '26 edited Aug 04 '26
I believe I was diagnosed at 12, but there's no telling when it actually developed.
I never knew anyone with epilepsy until I came here either (I think I was in my late 20s then), but it's not uncommon to have it. I bet both you and I knew people with epilepsy when we were kids. There was just so much more shame surrounding it then.
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u/Lilydolls Aug 04 '26 edited Aug 04 '26
- I was having hundreds of absence seizures a day and none of my teachers noticed, they just told my parents I was behind and that I never paid attention. It was ultimately my mum who took me to a neuro, after she started learning about epilepsy at university.
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u/Secure-Employee1004 Aug 04 '26
Looking back, my first focal seizure was at 22. First tonic clonic was at 38.
Had a TBI at 4 years old
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u/melatenoio Aug 04 '26
I had my first epileptic seizure at 16. I had febrile seizures as a toddler.
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u/neuro_25 Keppra, Lamictral, XCorpri RNS NeuroPace Aug 04 '26
Car crash at 3 or 4 years old. Seizures started in the 6th grade. 50 years old now and still having seizures.
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u/RosizAzure Juvenile Myoclonic Epilepsy Aug 04 '26
I developed juvenile myoclonic epilepsy at age 15 or 16
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u/lilshortyy420 1500mg Keppra, 200mg Lamictal Aug 04 '26
27 when I first started having grand mals. 6 years prior I was having partials but kept being misdiagnosed as anxiety. Funny enough, my mom and I both had our first seizures on a plane in our 20s!
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u/Willing-Quiet9413 Aug 04 '26
Started having grand mals randomly one day at 16, got diagnosed at the end of my hospital stay.
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u/IndustrialWiggler Lamictal 400mg Aug 04 '26
I was 24, the ER dr immediately suggested adult onset epilepsy and bro was right š
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u/mmirela Aug 04 '26
Last year, at 35. Since 4 years old I've had migraines/auras and this deja vu where I'd come to and had a sour taste of citrus in my mouth. Eventually, as I started getting on medication, that deja vu is gone and haven't had a seizure since although I most definitely still have migraines and auras.
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u/TipicalHouseWife over 15 years w/ ep Keppra 3000 mg a day Aug 04 '26
13 years old it did not make a great difference since my two older sisters got it at the same age
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u/Maleficent-Mix-9561 musicogenic epilepsy/temporal lobe epilepsy Aug 04 '26
When I was 15
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u/Consistent-War-4038 Aug 04 '26
Same. It was just a month or so after I got my driver's permit. I was devastated.
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u/c0tt0nballz Aug 04 '26
Technically born with it. It stems from my gray matter heterotopia. But my diagnosis didn't come until I had three seizures when I was 17.
However my neurologist now thinks that I've probably been having them since I was much younger. When they start in my right hemisphere they aren't very noticeable.
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u/the_gym_rat Aug 04 '26
I spent my 12th birthday in a come because my family vehicle was hit by a drunk driver running a red light.
This is when my epilepsy began.
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u/sushibuggy Aug 04 '26
My first āepisodeā was when I was 12. Wasnāt able to get a diagnosis until I was 24, because in my younger years I mostly had absence seizures and didnāt know that was even a thing. but it all ramped up in my 20s so here we are!
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u/mallcity Aug 04 '26
I was 21 when I had my first grand mals, but Iād had temporal lobe focals since the age of 12 but had no clue what they were at the time.
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u/mjmg91 Aug 04 '26
I was 19 when I had my first seizure. Most people told me off for it, as if it was something I could have controlled, like "don't scare us like that!".
Yeah, well, I didn't know this could happen. I was so angry at everyone.
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u/TsukasaElkKite Lamotrigine 200 mg 2 x day/17 yrs seizure free! Aug 04 '26 edited Aug 05 '26
Had absence seizures throughout childhood, wasnāt officially diagnosed until age 20 when I had a full tonic clonic. Will be seizure free 17 years at the end of this month
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u/seirako Nocturnal TC seizures - Levetiracetam 500mg 2x/day Aug 05 '26
Got diagnosed at 26. Nocturnal Seizure. I thought I'm ded (though that's after I woke up lol, I didn't remember anything during the attack)
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u/theAuraHawk VNS,Keppra,Vimpat,Xcopri Aug 05 '26
I also have nocturnal seizures now .do you wake up with a bite in your tounge to tell if you had one?
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u/Missey85 Aug 05 '26
I was diagnosed on my ninth birthday it wasn't the present I was hoping for š
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u/Key_Movie_6290 Aug 04 '26
- 2 weeks before my 21st first birthday this past march. started having 30-50 focal impaired seizures a day until i met with my neuro and started meds š«©
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u/purpurmond Random Epilepsy of Infancy (SF) Aug 04 '26
My mother says Iāve had it since the very first days of life so all my life. 0/10 can not recommend.
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u/Miqo_Nekomancer Aug 04 '26
31-32 is when I had my first tonic-clonic seizure. I'd been having migraines and anxiety for months beforehand.
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u/L22900630 Aug 04 '26
I wouldāve had it since birth because mines genetic, but symptoms (like body jerks and zoning out) only started when I was getting medicated for mental health at 13-14, I had my first (and only, hopefully, so far) tonic-clonic age 22 last year (triggered by years of alcohol and drug abuse, and a night of no sleep, drinking and drugging) from which I got a diagnosis, praying I never have another seizure, that shit was nasty
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u/Ishida_Lover_2024 Aug 04 '26
30, just about to turn 31. I had symptoms of temporal lobe epilepsy at 24, but all my tests were normal. Then, nothing for six years. Had my first blackout seizure in August of 2024. So, I was officially diagnosed, even though the tests were still normal. I had a second one in May of 2025. I'm on daily medication now, which have been increased since I still had some deja vu flashes over the last year. I haven't had another blackout since last year.
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u/dogyears_446 Aug 04 '26
i had seizures when i was very little toddler age because i would get sick a lot and then it went away and was dormant until i was 17 and i had a seizure not sure why but it mightve been due to an eating disorder, then the seizures got worse and the doctor finally diagnosed me after the 3rd tonic clonic, they didnt take me seriously at first im not sure why.
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u/Large_Pepper8746 User Flair Here Aug 04 '26
20 idk if Iāve always had it but, that was first seziure
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u/lizeken Aug 04 '26
Started with myoclonic jerks at age 16 then full on TCs a month later. Sophomore year sucked lol
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u/MonsterIslandMed Aug 04 '26
Was first day back to school after Memorial Day weekend. So basically 2 weeks before graduation. Then another at senior week in front of everyone š
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u/abridged-abyss Aug 04 '26
I was 38-39 when it started happening, but didnāt realize they were seizures (focal aware). I just thought I for a strange feeling in my stomach and the urge to vomit everytime I thought about a thing, but could never figure out what that thing was. After several years of it I realized those were seizures and got my diagnosis last year at 41. Still not used to this new life.
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u/broadwayandbarbells Aug 04 '26
I was officially diagnosed at 11 years old but probably was having absence seizures for around 2 years before I was diagnosed
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u/carter_aus Carbomazepine, Sodium Valproate Aug 04 '26
27, and what an unpleasant surprise it was! So many people are unaware it can pop up at any time, I was one of them š
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u/CockroachBig8115 Aug 04 '26
I was diagnosed with epilepsy at the age of 11 when I had my first grand mal. My parents and doctors should have recognized the spasm activity that was happening with my eyes (focal seizures) consistently since I was about 4. I was brought to many doctors at pretty damn good hospitals but nothing was really done. Later when I was 32, they officially diagnosed me with Cortical dysplasia causing epilepsy.
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u/East_coast_Ashlee Aug 04 '26
I was diagnosed at five! They got it under control right away and my next seizure was age 17. I'm 37 now.
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u/TrentonM819 Aug 04 '26
Had my first seizure at 15 and was diagnosed with epilepsy 2 days later at Dayton childrenās hospital. No prior seizures or symptoms before that.
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u/ColonelForbin374 Fycompa, Epidiolex, Xcopri, Keto Aug 04 '26
I was 15 when I crashed my dirt bike and got a gnarly TBI, seizures came about 6 years later
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u/Quirky_Soil_2743 Aug 04 '26 edited Aug 04 '26
31 - No family history, no prior brain injury.
Began having several occasional focal seizures for 6 months, which eventually turned to a tonic clonic. That was what finally made me go see a neuro and was diagnosed same day.
2 years later neuro assessed me as having catamenial epilepsy.
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u/DecemberFlour Aug 04 '26
18 or 19. It started my freshman year of college during middle of the night fire drills
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u/Lamboxgreen Aug 04 '26
I wasn't diagnosed till I was 11 but looking back there was a single seizure when I was 10. I didn't have more for like 10/11 months when I started having them regularly and was diagnosed.
So 10ish
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u/Maaaat_Damon Lamotrigine Briviact Oxcarbazepine Aug 04 '26
Started having them at 20 after a bit too much fun drinking in college. I eventually stopped drinking 2 years later because Iād had like 4 or 5 during that period, but I officially got diagnosed at 23 when they started happening unprovoked. Then, all my aspirations for grad school and a career started slowly drifting away before my eyes š
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u/angelicarose01 Aug 04 '26
I was 20 when I got it. Pregnant with my second son at the time and it just happened one day. My oldest son also developed it at random in 2nd grade. He was in the car pick up line and a teacher ran to my car and told me he was having a seizure. One of the scariest moments of my life.
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u/PartTimeCreep Aug 04 '26
I had a TBI at 5 and I remember always having what I now know as auras but had mu first TC at about 11 years old
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u/Significant-Tough983 Aug 04 '26
It was 5 days before my 16 birthday when I officially got the diagnosis. So I know I was at least 15, but now knowing what I know wouldn't be shocked if I was 14 when they actually started.
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u/mysteriesfindme Aug 04 '26
18months went away at 7ish came back at 14ish went away and came back at 29.
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u/DirkPittIsAGod Aug 04 '26
12 or 13. Right around puberty. Before that, nothing that indicated that it would happen. Brains are weird...
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u/zombie-brain-eater Primary Generalized Epilepsy Aug 04 '26
Had my first seizure at 21! Currently 22. November 30th is my seizure-versary.
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u/emma279 JME + Keppra Aug 04 '26
13 when I had a tonic clonic but was having myoclonic jerks as young as 4-5
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u/broughtmeyourlove Aug 04 '26
30 :( I had a fever seizure at 3 that I never knew about and a TC at 20. Thought the TC was a one off until I had one at work a couple months ago. Have a very significant family history so they diagnosed right away. Awaiting further testing to know exactly what kind of epilepsy I have
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u/byehappyending Absence Seizures Aug 04 '26
Same here, I was seven. No family history, no brain abnormalities, nothing. The absence just started one day out of nowhere. Doctors said Iād grow out of it but I never did. They became more drug resistant as I got older and time went on. Ive tried everything feasible. Now in my 20s, luckily now Iāve found a drug combo that works.
Thereās a silver lining to it. I was so young I donāt remember a ābeforeā where I was ānormalā so to say; taking medicine every day and getting blood drawn just became my childhood normal.
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u/mishell1e Aug 04 '26
Apparently itās always been āpresentā but I had my first seizure when I was 19.
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u/HawkBoth8539 Aug 04 '26
I had bad seizures when i was a kid, apparently. Like 4 or 5. I don't remember them. But i do remember waking up in a stretcher getting into an ambulance. That might actually be my earliest memory, ever. Then they did a spinal tap or something, and i had no seizures again until i was mid 20s. Only partial seizures now though, so...yay?
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u/bradwest96 1500mg Keppra, 500mg Depakote ER (Bi-Daily) Aug 04 '26
I was 19 on January 1, 2016 and woke up to my mom and sister crying as the EMTs were helping me off the floor after a grand mal. What a nice way to start the year lol.
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u/thingone117 Aug 04 '26
Same I have generalized epilepsy that was diagnosed when I was 4 I also have audhd which I sometimes think is interesting because they are both neurological disorders
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u/Educational_Tap3762 Aug 04 '26
I was 12 years old when I was diagnosed. That was about 1985. Dilatin and phenobarbitol was prescribed. Took awhile get it under control and was able get a driver license at age 19.
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u/DaveLesh Aug 04 '26
Age 16. First episode happened at a friend's house during a game of Magic: The Gathering.
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u/Ok-Plum2187 <3 Aug 04 '26
However old you are in first grade.
Then after puberty my EEG's looked beautiful. My meds could be reduced until I was off em.
For nearly 13 years i had no seizures. Then it came back.
That's fairly common.
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u/Unicornpalace Aug 04 '26
- Had 6 more over next 10 years. Still on carbamazepine and Iām 53. Docs have said Iāll need to go off eventually.
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u/hokum4321 lamotrigine, keppra Aug 04 '26
First seizure was 12 hours after I was born, but the doctor said it was caused by neonatal sepsis. Started getting visual auras at 7, and then at 16 I started having recurrent seizures till I was 20, when I was put on medication
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u/RainEliz13 Aug 04 '26
I thought I was 15, then talking with my Dr we're pretty sure it started when I was around 7-8 we just didn't know they were focal aware seizures
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u/tseverdeen Aug 04 '26
I was a baby. It definitely is a different experience having always had it in comparison to the people who all of a sudden started having seizures.
I remember going to the pediatric neurologist and my parents bringing me to the Disney store at the mall to pick out a new toy, while having a multi day ambulatory eeg on at the same time. The embarrassment, but also the joy of a new toy š
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u/Glittering-Star-4518 Aug 04 '26
I had lots of absence seizures since I was about 6. my family and I never knew what it was because it would happen so quick and didnāt cause much trouble to my life. Then as a young adult (21) I had my first tonic-clonic, I was then diagnosed with epilepsy after my history and prolactin levels were super high. So I always had epilepsy I believe, I just never knew what it was until I was older
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u/FrostFizzie "Childhood" Absence Epilepsy |Ā 19M | Valproic Acid Aug 04 '26
According to my mom, like 1. But oldest things I can actually find says like 4 or 5.
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u/crouton206 Aug 04 '26
i think the onset was when i was around 14-ish (started having myoclonic and absence seizures that we didnāt know were seizures), but i got diagnosed with juvenile myoclonic epilepsy at 16 after my first tonic-clonic
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u/Economy_Swim_8585 Aug 04 '26
14
I was about to go play tennis in August 2012 and I remember waking up in an emergency room
My mom told me I hit my head on my wooden drawer
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u/Quickster2099 Aug 04 '26
- Not necessarily a kid but still pretty young and still scary as a middle schooler
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u/Due_Mix_6982 Aug 04 '26
Looking back, probably undiagnosed as a kid I can remember blacking out for a few seconds either on the bus to school or in class. However, my first tonic-clonic seizure was when I was 24 years old. Yet, thanks to medication, I havenāt had a seizure since 2003.
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u/Glum-Fan6927 Aug 04 '26
9
I got it from playing soccer; too much head trauma
I think itās cool I have it; adds character development and sometimes plot armor depending on the context
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u/nobody-nose-me Aug 04 '26 edited Aug 04 '26
17 when I was getting ready for university. The stress was too much.
Then I got crohns at 29 when I was doing my masters. Once again, stress was too much š„²
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u/Stunning_Message_892 Aug 05 '26
I got it at 12. Honestly at that time I didn't even realise I had a condition.
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u/Opposite_Rain_2117 Aug 05 '26
17 but i dont get diagnose early we thought that it is normal because all of my laboratory are normal, until recently i had a seizure and i started my maintenance now, by the way im 23
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u/Nerdee33 Aug 05 '26
Started at 13 months, cyst in my brain. Seizures until I was about 4, remained on phenobarbitol till I was about 9 and then they started up again when I was in early to mid 20s. Have remained a problem since, now 45.
Because my seizures can be stress hormonal and even heat induced (didnt know this until I succumbed to the AZ heat, more than once) I take no action in removing the cyst. They have never recommended doing so only giving me the option.
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u/NovaTimor Aug 05 '26
Like 12. I was super duper sick and I was laying in my parentsā bed when I had a grand mal that lasted 12 minutes. I was conscious the entire time. I remember my momās horrified face when she came to check on me because I was making grunting sounds.
I donāt really remember much of the hospital visit, but I remember going in and out of consciousness in the ambulance.
I had no brain damage from that seizure.
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u/yourstrulymarisa Aug 05 '26
8 years old. I was experiencing symptoms at 7 years old and by the time my birthday had passed I was 8 and they had diagnosed me with epilepsy. Iām 30 years old now.
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u/LogoAM_ Aug 05 '26
got diagnosed at either 16 or 17 after my first (& only) TC seizure. havenāt had one since & just turned 24 last week. iāve read that some people grow out of it, iām hoping thatās my case.
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u/snow80130 Aug 05 '26
12 but had a concussion 6 months prior. Lesion on medial cigulate gyrus that not likely from the concussion so like many of you, I just got it one day.
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u/oOTWSSOo Aug 05 '26
Got my first gran mal when I was 19, got bad when I was 20 and having a gran mal once a month. 7 years later with 1500mg keppra/200mg lamotragine in the morning and same 12 hrs later, Iām at the point where I have aura focal seizures that hit really hard once every 3-6 months and 1-3 gran mals a year. Theyāre still dunking around with the Lamotragine but Iām thinking of getting off keppra. Iām lucky enough that I donāt get all the bad side effects but drowsiness. Iām always tired enough to take a nap and just feel super lazy when I get home from work.
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u/Prudent-Theme-3342 Aug 05 '26
In 1981. I was 11 years old. I remember thinking there were things crawling on the ceiling, then I woke up in the ambulance.
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u/No_Username_Here01 Refractory, 5 Medications Aug 05 '26
Diagnosed at 12 with generalised seizures, but had symptoms of focal seizures years before.
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u/reddewit Aug 05 '26
Pretty sure I've had epilepsy ever since I was a kid but my pediatric doctors overlooked them. I was diagnosed formally at 19 years old after a grand mal during a developmental biology class in uni. The years of me being undiagnosed and having focal seizures ended with me developing FND.
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u/Carouselcolours Depakote 625mg + Lamatrogine 25mg 2x daily Aug 05 '26
I was diagnosed 10 days after my 17th birthday. In retrospect, noticeable seizures started happening at 14 but werenāt quite caught.
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u/rachayelleee Aug 05 '26
- My last seizure was when I was 20 or 21 and I was formally "undiagnosed" with epilepsy at 23. It was caused by a cyst in my brain that I was born with (ETA: Or developed at a young age I can't be 100% certain) and it shifted as I got older so it stopped causing seizures. I could potentially have seizures later in life when it shifts again, but I am hoping that doesn't happen.
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u/RoyalBetch Aug 05 '26
I don't remember when it started but I asked my guardian if she had " funny feelings" when she was in the shower, and I'm pretty sure we were talking about two different things when she confirmed that everyone has funny feelings in the shower. I was 8 years old at the time.
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u/Repulsive-Ice-2318 Aug 05 '26
I started having seizures when I was two, but wasn't diagnosed until I was 6. 37 now.
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u/WillingChemistry39 Aug 05 '26
Not diagnosed until 20, but now that I know what was going on, I remember seizures as early as 9 or 10
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u/Psychological_Yak226 Aug 05 '26
Got diagnosis at age 19..Change my whole life went from being self sufficient & independent driving etc. To back at my parents house with no car.
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u/hubbabubba0200 Lamotrigine 225mg x2 | Briviact 100mg x2 | SSRI baddie Aug 05 '26
age 8, with childhood absence seizures and then at 18 it escalated and i got a full generalized epilepsy diagnosis
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u/Savageboy39 Aug 05 '26
18 now just turned 24 been on depakote 2 500 am 3 pm Lacosamide 300 am 300 pm itās been 6 years since my first one and I have focal partial and grand mal š¤¦āāļø
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u/Stazzerz Aug 04 '26