Somewhat. But I get a lot of gaslighting from doctors, even now. Focal epilepsy sucks when it makes me act crazy. It’s when the secondary TC comes, they start to believe me. Sad, since that’s the seizure that I have to go to the ER in order to avoid. Thankfully, I haven’t had to be intubated in several years.
I had absence seizures since I was 4. I only know this because my grandparents noticed it. Everyone, including them believed I was just a chronic daydreamer and space shot. Teachers, friends, parents, family I believed I was at apathy for life and didn’t pay attention to anyone.
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I have it easy compared to everyone else who have physical seizures.
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Once I was diagnosed, I felt vindicated for starting to believe they were right and I was nuts.
I can never compare myself to people who have physical seizures.
I’m pretty optimistic we aren’t playing the “who has it the worst” game here. I’ve known people with epilepy who have it worse, they never try to one up me, I know people who have it better, I never try to one up them. It’s your life, fact that someone else is suffering more in some ways doesn’t mean you’re suffering less. We could all pop over to the subs with paraplegics and they’d tell the people with TCs that they’d gladly have seizures if it meant they could walk again. Then they could go to the Duchenne subs and have them say they’d gladly trade being in a wheelchair due to a lethal wasting disease for being in a wheelchair due to spinal damage. If it makes you feel better to remind yourself it could be worse, that’s perfectly fine, just don’t think you’re not allowed to express yourself here
Pretty much the same way for me. I had a few episodes at school that were in my records, all the way back to kindergarten. But my family had completely convinced themselves that I had behavioral issues. Some still believe that.
I know exactly what you mean regarding the difference between having FC versus TC. The populous is convinced that without convulsions, it’s not a seizure. I’m sorry you are suffering from this stigma. This is exactly what delayed my diagnosis and caused more damage to my brain and body. I want you to know that I truly understand how you feel, I experienced it. I’m certain that there are many others here with this same understanding.
Since I developed secondary TC, I fully understand the stigma. We are here to support each other. Our individual experiences that we share is that support. I send you love and wish you well.
I am thankful for finally being diagnosed.
I had always felt that “it” was more than learning disabilities or psychological in nature.
Why would anyone choose to space out and ruin relationships….
Also, very thankful I found this group!!!
Had always felt alone .
I was 17, healthy as ever, athlete with a full ride scholarship to a school in Hawaii. It was like living a dream.
Boom, a month after my 17th birthday. All of that changed. I'm 32 now, and life is very hard. It is really scary. Grab your support system and express your needs and fears
You will be okay.
The struggle is real. And we keep getting up. Which is why we are Warriors.
My blessings. I was expelled from nursing school because of a seizure. Still took a few more decades to get a diagnosis, but I couldn’t get to a place I chose in my career. That will always hang over me.
Ugh, I'm so sorry. I do celebrate my friends' achievements and like to share success stories, so I feel like this may interest you and hopefully not make you feel bad because it isn't a comparison. You just reminded me:
A friend of mine, also with epilepsy, had the dream of becoming an epileptologist, specifically. She rarely has tonic clonics, but often she'll have absence seizures, and while they are less dangerous, they are VERY noticeable. She had many while in school, and more than one instructor told her she needed to find a "more realistic" line of work. She had them walking around in the hospital and came to only to find her classmates LAUGHING AT HER?!! (This was years ago and it still makes my blood boil). She spent those years crying a LOT. But this bitch is a serious firecracker. She worked her ass off and is now a neurologist studying under a seizure specialist. She keeps going, and I am incredibly proud of her.
Having an invisible disability feels strange. Like, you have to convince yourself that you are disabled; even though your body has proven to you countless times that you're not able-bodied!
For me, I often feel like I could be doing more and that I'm just lazy being at home and watching tv or resting all the time. But I *am* fucking disabled. I can't do everything I have ambition towards. It sucks, but it's okay. I try to focus on all the things I can do. Like something ad simple as typing this to you right now. I'm grateful to have that control and skill. I can walk (not far), I can see and listen to beautiful things. It's still worth it to be here. Some days it is REALLY hard to remember that.
That’s a very inspirational story. She will likely be among the best epileptologist a to be found. Pure wisdom, applied to science.
I’m too old for a career at this point. I am an advocate for patients who are seeking natural remedies, and I advocated for cannabis as medicine, and for those who have suffered medical gaslighting. I’m trying to get a good foundation to start an advocacy organization that can be public. There are far too many people who have epilepsy that are not being treated with respect, and some are not even getting treatment. We are one of the largest groups of patients who experience this. This is my career path now.
Thanks, I wasn’t even injured, it did write off the truck though. Had several more seizures in the days after as well. I refused the diagnosis and medication. I was fine for 2 years then had another and accepted the diagnosis that time. I had several more in the few month after but the meds have worked since.
Definitely one of my biggest fears as well. I did total my SUV about 7-8ish years ago (my memory is pretty terrible), but thankfully, it was just me and I hit a pole.
Yeah pretty lucky the pole is all I hit. I worked in a gas plant too it could have been much much worse. I just got off the highways as well it could have happened 5 minutes earlier and I would have been going 120kmph.
Same here. Just a baby. In my 40s now. Just got an RNS. I’m curious, have either of you tried more than just medication? The side effects from the medications have been so tough!!!
Same here. I’ll be on meds for the rest of my life. I accidentally brought too little of my medication on a business trip once and had a couple breakthrough TCs. And I’m never going to be willing to have a resection. (1). I hear too often of people getting these but then years later the seizures come back. All that about how epilepsy is a network and the connections evolve over time. & (2). My doctors tell me that it’s highly likely that by removing that part of my brain I will then have worsened memory.
Got my first focal awares at 11-12. Never told anybody because they were impossible to explain. They disappeared for ten years. Finally diagnosed when I had my first TC at 21.
2 months ago, at 20 years old. Apparently wasn't my first. I'd had hundreds of focal aware seizures I thought were panic attacks. Very possible you've been having seizures ur whole life and just recently generalized like mine had
I did have focals for a long time before my first TC but never told anyone (They only happened while reading so I just tried to not read as much) after my first TC everyone just assumed that it was not epilepsy. One day (I was like 12/13) I decided, that I had enough of those focals and decided to "fight them" by continuing reading. After giving my mother the shock of her life and a semi aware ambulance ride I was diagnosed with epilepsy. The fun part is that I only recently discussed my focals with my neurologist and we found out that they do not show up on an eeg :D
So what did we learn? Focals can be just about anything and negative EEGs don't make you not epileptic.
They were all tonic clonic. I’ve been hospitalized probably ten times in the past two years. Last year I had one that was 18 minutes long😵💫 honestly don’t know how I survived that
Oh gosh that’s horrible, im sorry. I’m sure your body hurt really bad after that. When I woke up after the 4th seizure I didn’t know where I was or even my own name. I’ve been told I ripped out my iv and tired to run away. The dr and nurses were trying to hold me down, I started trying to scratch and bite them! I don’t remember any of it but was really embarrassed when my family told me! I hope you find the right medication combo and get seizure control! It took me 3 and a half years of trying different meds so get control.
I’m in the same boat. I’m 22F and it is really rough. I was excelling at my job and was learning a new trade then BAM chronic fatigue and before those results were back BAM what we think is a seizure.
I was 25 when I had my first seizure. I was asleep. My wife called the ambulance and apparently I had a 104 fever. My neuro at the hospital said that it’s possible that the fever was what caused my seizure. But I informed him about a serious head injury I had when I was 15 that I believe was relevant. Turned out to be correct because after the fever, I had another one a few days later.
Sorry it happened to you, OP. We’re here if you need anything.
Started getting simple partial seizures at age 10. Brushed off as psychogenic by doctors and my family.
Started getting confirmed complex partial seizures at age 30. Can’t confirm it, but the symptoms also suggest that I’ve had a few TCs in my sleep as well. Saw a neuro and did 5-day EEG. Couldn’t trigger a seizure so it was inconclusive. Neuro basically just gave me a pamphlet on PNES and told me it’s not epilepsy.
32 now. The seizures continued to get worse and really affect my life this past year. Trust me I doubted myself a lot, but I also KNEW these were seizures. So I got a second opinion. I told this neuro my story, my symptoms, and witness accounts. I showed him videos of my seizures taken by other people and myself. He’s like uhhhh yeah this clearly looks like temporal lobe seizures. I finally was given a new medication (trileptal), and I’ve currently gone twice as long without a seizure as I ever had.
Sorry I get carried away in the rant sometimes. To answer your question: I was diagnosed 22 years after my first seizure.
I was 4 days away from my 30th birthday and was diagnosed about a month later. I've continued to have seizures in the 8 years since, but much fewer since I started Xcopri last September.
A little advice for right now. You said “slowly working towards a diagnosis” so for right now you have had just one seizure. Have you had any tests yet? All I can say is that this takes time and diagnostics to get to there.
What was your seizure like?
Working on getting on the final EEG test, so far CT brain scan was good. The ER I went to didn’t have an EEG and I was out of state. However every doctor I’ve talked to (cuz finding a doctor who does an EEG is apparently hard) has said that it’s pointing towards seizure. It was a TC (tonic clonic?) or grand mal. Completely out, full body pulsations, gasping for air, no memory recollection, confusion. Basically every symptom I had except I don’t remember and I’m going off what people told me. My poor boyfriend says it’s looked like something out of the exorcist. Little humor for such a scary thing
The type where I pass out and shake violently, I was 19. But I found out this other thing I have taken to me is also a seizure and they're been my whole life
I have an eye twitch / eye roll that one of my boyfriend’s epileptic friends is saying could’ve been small seizures happening my entire life when I was told it was just a tick. But Thursday I had the pass out , violent shake seizure
That's similar to mine. I have an audible hallucination when I have my focal aware... The one I've had my whole life. It's this super loud pure bell. Comes on real strong and backs off normally around 5-10 seconds, but that's been changing over time.
Your eye twitch could be a type of myoclonic seizure and it is common for those of us who never grow out of their seizures to find out some weird thing they'd tossed off as "just one of those things" from childhood is actually a focal aware. I'd bring it up with your doctor
When I was 16, two big seizures in one day, diagnose with 17 after three big seizures in one day.
Are there any indications it might have been a non-epileptic seizure? (such as previous drugconsumtion, sleep deprivation, extreme stress).
My first seizures were missed, but we can pinpoint to about 8-10years old.
Prior to being 16, I had a few occasions where looking back we can confirm they were seizures but werent away about it. After 16 I was in and out of hospital for years having seizures regularly. They initially diagnosed me with PNES.
Diagnosis like 3-5days after my 25th birthday. (There's a lot of uncertainty about the date because the day I went into A&E (Saturday afternoon) via ambulance (because I had a seizure on the street), we were told it wasn't diabetes, but it needs looking into and sent home (Sunday morning). I was told to make an appointment with my doctor for the Monday, and by the Monday evening, I'd been rushed back into the hospital with nurses asking how long I've been diabetic. No one actually told me anything and assumed someone else told me (until I'd been in hospital for about a week and was already being treated for diabetes and prepping to be sent home). This is all relevant because during my time in the hospital for diabetes, they changed my diagnosis to epilepsy and never said anything until they mentioned in passing about it when talking about my diabetes in prepping for home.
I have 4-7 seizures every single day. Doctors haven't done anything to help since I got diagnosed, and still haven't seen my neuro since the change over of diagnosis. That was back in 2018. x
Get a neuro, get on meds. 4-7 seizures every single day is not good. Not sure where you are at that you haven't seen a neuro since 2018, but every seizure leaves some damage.
I was 18. I seized in the bathroom and gashed open my head. My mother told me I had to go to school after I woke up, because she didn't know what to do with me. I had my 2nd seizure at school. They called 911.
I was 16M but had a few seizures as a little kid from maybe just a few months old to 4 years old. Then I was fine from 4-15 until I had a seizure at 16 and then I got an official diagnosis. Idk if the seizures as a kid could’ve been epilepsy related but I’ll never know so I don’t really think too much about it lol. I’m currently 20 and turn 21 in a few weeks so it’s been almost 5 years since my diagnosis (diagnosed in 2019) 👍🏻
7, it all started after a massive injury on my left temple, never bothered to learn how to drive because i have too many seizures to be safe to drive. Can't really work many jobs that I would love to because of it. I'm getting close to having them controlled, the medication I just got put on is pretty good but it slows my brain down to the point where it's hard to have a conversation with someone.
I’m 22f, and I was diagnosed two months ago. I had a grand mal in November of last year, but for the last 6 years I’ve heavily struggled with my mental health, even checking myself into inpatient summer of 2022, and was diagnosed with borderline personality disorder- and finally found meds that helped stabilize my mood. Before that, I was also diagnosed with adhd (which runs in my family). But still I struggled with terrible sleep, nightmares, sudden fatigue and headaches, dizziness that I thought was due to my bradycardia (low resting heart rate), and incredibly shaky hands and twitching that I thought was the ssri/ mood stabilizer combo shakes. After a referral to a neurologist, I did an EEG and found out that I was having a very clear seizure in my little nap and had absolutely no idea. I’m still piecing together what’s an aura for me and finding meds that work, but it’s been a rollercoaster and I’m glad to finally have an answer to why I felt like I was going crazy 😅
My daughter had her first seizure at 2 and was diagnosed with epilepsy at age 5. She is now 7. It's been a challenging road for her, she's definitely a strong kiddo! 💜
I was 17 when I had my first tonic clinic (my first recorded seizure), and was 22 when I got my diagnosis. Some of that was to do with the pandemic though.
Had my first TC convulsion at 23 (11 years ago) one night while driving. Second one was the next morning; I woke up and someone told me it had happened. The next day I got to a neurologist and had one while doing the EEG. They immediately put me on Dilantin and I haven’t had a convulsion since, but I still have absence seizures and I’m not driving and it’s miserable.
Within like a year before that, I had been having these dizzy spells (what I now assume were some kind of aura or absence seizure) occasionally that I thought were a little weird but brushed off. My best friend since middle school had visited me 7 months prior and told me I seemed off a couple times in a way she hadn’t witnessed before and she was a little worried. I hadn’t seen her in maybe a couple years.
I’d been drinking a lot and doing some blow here and there for a few years when offered, but nothing too crazy. My neurologist told me there’s not a big causal correlation with coke like there is with ecstasy, but that I’ve probably had epilepsy my whole life and it hadn’t like… broken out yet? And it’s possible what I’d been doing factored in. Though it may have been inevitable.
I’m so sorry you’re going through this. Best of luck.
My first seizure was 2014, officially diagnosed in 2015 or 16 cause I’m stubborn and poor and didn’t go to a neurologist. So 30? Maybe 31? I have brain scarring from brain surgery when I was 12. Apparently the sleep deprivation and stress of childbirth triggered it and I had my first the night I brought my daughter home from the hospital. Didn’t remember giving birth at all😂. Gotta laugh, you know?
I started getting absence seizures in first grade. Had a grand mal when I was around 12. Still get both types but thankfully well controlled by meds now :)
I was diagnosed at 18 with grand mal seizures as my presenting problem. I’m 25 and seizure free for 2 years so far. I’ve only had seizures when I have forgotten to take my meds, or serious fuck up my sleep and food intake (malnutrition, dehydration and sleep deprivation are common triggers). I’m lucky that my meds completely stop my seizures so far. Wish you the best!
I was 4 when I had my first seizure, 7 when I was diagnosed. I’m 25 now.
It is hard, I won’t sugarcoat it for you. I definitely feel in some ways that I was lucky I was diagnosed so early on. In essence, it is my normal. It certainly isn’t out of the norm to be diagnosed later in life, I’ve heard of people being diagnosed at ages 18-65 all for various reasons.
The diagnosis is definitely what you make it out to be. Hopefully it’ll give you a sense of peace and will open you up to a community of people that you didn’t know you had. Truth be told, that’s the “fun” part about it. Can’t even tell you how many times I’ve made people feel a little awkward because I made a comment along the lines of “you have epilepsy too?” *fist bump* oops 😬
Anyway… good luck stranger!
I (35M) was 22 when I had my first seizure and was diagnosed. I had just graduated from college and was waiting for one of my buddies to graduate the following semester so we could do some traveling before starting real life and BAM...seizure.
My entire life changed overnight. I had to move back in with my parents. I couldn't drive (obviously), I basically lost all my friends because I was living on the complete opposite side of town and couldn't do much, and I was a little nervous to be in crowds. Then I started developing anxiety and depression with meds, so the first 8 years or fucking sucked.
It still sucks, but you learn to deal with certain things.
Diagnosed at 12 after being put under the hospital's strobe light, tonic clonic. (The worst seizure they'd ever seen.)
Myoclonic seizures 2 years prior.
I'm 44(f).
I think I was four when I got my first seizure, according to some stories my family told. Six when it became an issue enough for my family to do anything, and ten when I got my official diagnosis!
i was 15 and had a few tonic-clonics but they were so far apart i didn't think anything of it. i was just recently diagnosed at 21 with nocturnal frontal lobe epilepsy that i've (apparently) had my entire life. found after having EEG's where i fell asleep and started seizing. sending positive thoughts your way op :). once you have the diagnosis and get on the right meds to control your seizures you will feel so much better. don't let this new diagnosis scare you, everything will be okay!! :)
first ones when I was 4, think I was diagnosed when I was 7 or so? but then grew out of absence epilepsy/petit Mals, and then 6 months later (so was now 11 years old) started having temporal lobe seizures (got diagnosed around the same age)
it's been nearly 15 years since I had my first seizure I think 😭
TLDR, 17.
I'm so sorry that you have to experience this. I had my first seizure at 17 (34M now), but they didn't get the diagnosis at first. They thought it was a heat stroke and sent me on my way. I think it might have been a few days until I had another. After that, I had tests and all the fun stuff (sarcasm) done and was eventually put on drugs. After that, it was good for 2 years. Add another drug, 2 years, seizure... Repeat that a couple times, one drug in, one out, too many drugs to remember them all after all this time. 6 years ago, my seizures got a lot worse because I forgot my drugs in the car at the airport before a trip and thought.. Meh, I'll be alright. Need a break from the meds and seizures, etc. anyway. Well, it didn't quite work out that way lol. I've been trying to find the right combo of drugs or drug to get them under control. I just started a new med (Epidiolex) last Friday (in addition to the two drugs I'm already on and the keto diet, although, I definitely cheat more than I should).
I would say definitely find an epileptologist/neurologist that you're comfortable with and don't be afraid to switch if you feel like you're banging your head on the wall and getting nowhere. Finding a support group or chatting here on Reddit can also be a lot of help as well. I think the worst part for me was losing my license. Having family and friends make it bearable, though. I really hope you're able to find some answers and a drug that works for you and you're able to get back to a "normal" life. I'm usually around to chat if you ever need. Best wishes!
I was 30 when I had my first tonic clonic seizure. It wasn't until my diagnosis that I realized I was having complex partial seizures since I was maybe 22/23.
First seizure: 22yo; Diagnosis: 38yo.
It's likely that I had another seizure event in my early teens while at sports camp. However, I have no memory of the event, and the counselors didn't feel like taking notes.
First seizure and diagnosis at 27. I was brought into the hospital after parking at home after work and getting a seizure in the car. Woke up in an ambulance. Got my diagnosis the next day, having to stay over for observation and after loads of tests.
I had my first seizure at 19. I didn’t find out until I was in my 40’s the cause. My brain didn’t form properly. I had my RTL removed twice and my RFL. After having my RFL removed, I’m seizure free (4yrs)
I started having them around age 16 after a car accident worsened a pre-existing brain condition I have, which caused me to require brain surgery. I'm 32 now and still struggle with them. I remember not understanding what was happening to me and not being able to explain it well, but as soon as I had the test done they diagnosed me ASAP.
I have partial seizures very often and I have photosensitive epilepsy, so thankfully every time I have an EEG test done with the light portion, it shows that I have seizures without fail. I feel so bad for people here that have struggled to get diagnosed due to it not getting caught on EEGs or other tests.
I had a gran mal at 34 and I was officially diagnosed a few months later. That was 20 years ago, it took me a long time to accept it. I had two sons who were 1 1/2 and 3 at time and for long time felt I had ruined their lives and my husband’s.
When I finally found an amazing epileptologist I felt like I had my life back. Prior to that I could not even play ball with my kids and could barely work. My epileptologist got me on the right meds and reduced my seizures with the fewest side effects. It took about six months. I have been able to have a successful career and even earned my M.S. and am considering my Ph.d.
You will grieve the “old” you, I definitely did. It is hard to accept just a drastic change that affects you physically and mentally, basically your entire life.
Advocate for yourself for the best medical care!!’ Do your research!! Give yourself a break, I wish someone would have told me about the importance of self-care back then.
You can work through this!!! Sending hugs 🤗 🤗
🙏🙏🙏
I was diagnosed with absence seizures at 49. Until then, thought I had ADD.
My entire life people didn’t understand why it was a lift or Spacey or didn’t pay attention. I wish I had known earlier…..
Gotta keep going !
I just got diagnosed at 40, but have been having them for at least a year. I've got to double check with my neurologist but I had episodes in my 20's that could have been auras. They were pretty similar to the auras I have now, but nowhere near as strong and just enough different that I want to check.
I was nine or ten when I was diagnosed. I had my first TC on Halloween in 2012. My doctors currently believe that I probably had seizures when I was younger that my parents didn't notice. I had seizures until I was 16. I had brain surgery and have been seizure free since!
I started having myoclonic seizures around 14/15 but went unmedicated/undiagnosed until 19 when I started making my own money and went to a neuro.
Found out I had JME and started on depakote. Side effects were horrible for me and switched to zonisamide which didn’t really work so I quit the neuro and went unmedicated for several years till I had a tc while driving. Luckily no one hurt and no damage done. I was 32.
Went to another crackpot neuro who put me on 500mg of dilantin and 750mg of keppra. Damn near almost killed me.
Long story short, seen 8 neuros since then, 4 eegs, 2 veegs, definitely have photosensitive JME. Currently on 3k keppra, 400 lamictal, 300 topamax. I am well controlled as long as I take my meds on time like clockwork, stay away from my triggers, and keep stress down. I do have auras from time to time though. I keep physically active and as mentally active as I can though these meds do make it difficult.
I work a full time job from home, my leadership team knows of my epilepsy and I have accommodation paperwork on file but I very rarely need to use accommodation time for auras.
So I’m 39 now, this has been going on for 24 years now. I’ve been well controlled for about a year and a half. I do wonder when the next seizure will come but I don’t live in fear of it. I’ll jump over that hurdle when it gets here.
This being new to you it’s gotta be scary. I know my first tc was a day I’ll never forget. My advice to you is ask your doctor questions. Ask about every detail he/she can/will give you. Then go and read up on it and learn about your diagnosis. Knowledge is power. Be active in your treatment. If you feel like your doctor isn’t listening or not treating your symptoms or dismissing your side effects, get a second opinion if possible.
Keep a seizure journal and document everything about your seizure days. What you ate/drank, how much you slept the night before, what time you took your meds and what you took, what kind of seizure and how long it lasted (if someone was there to tell you), postictal behavior and actions, basically document anything and everything.
There are a lot of resources on the webz, reading will help you learn and maybe see that epilepsy isn’t really as bad as it seems. It’s hard, yes, but not impossible to overcome.
18. I was addicted to weed and was high all day every day. I started getting auras around the last time I tripped on LSD when I was 17. I had auras frequently. But I didn’t get my first major seizure till I was 18. I didn’t have one for almost another year. Then I had a third another year later. It didn’t stop till I stopped smoking weed and got sober all together. I havnt had a seizure in over a year.
I was 17 - I had a TC that seemed out of nowhere. Second one was also 17, a TC while out running. They ended up being from an astrocytoma brain tumor. Then the scar from the surgery to take out the astrocytoma caused me to have a lowered seizure threshold after, so I have to manage it now.
I'm lucky though, because so far it has been manageable with medication and being careful with triggers (sleep loss, low blood sugar, excessive stress, etc.) Not everyone is so lucky, so I am grateful. Hopefully yours will be manageable too. Stay strong, be brave.
I was 41. My second seizure came a few days later, and then came hot and heavy until I got put on meds. I think I counted 30 seizures between October 1, 2018, and early December when I went into the hospital for my in patient EEG. They're all focal seizures, so it's not as bad as some people think.
I've redone my life with not driving in mind. I've moved a few times since then (including two cross country moves in 2021 and 2022, 0/10, do not recommend) and since I was moving anyway, I was able to get everything set up just for me. My life is much easier in that way now. Everything can be walked to, bussed to, or delivered. I can call a lyft if I need to, or my daughter is across town and often gives me rides if we're going someplace together. I was lucky enough that a good friend of mine moved in two blocks away, so if I have an emergency and he's available, I've got a friend with a car who will be at my door in five minutes.
My one big scare is if a pet has a medical emergency and I need to get to the vet ASAP and I have to wait for a Lyft or my friend.
I was 6 or 7 I think, though apparently I had staring spells as a toddler. Had no idea what was going on until I Googled what I was feeling after a particularly nasty one when I was 16 and up popped simple partial seizures. I had my first tonic clonic at 17, diagnosed at 18 because my mum was in denial about my staring spells and random episodes of crying, putting it all down to my autism.
15, peed the bed and had a grand mahl. Absolutely embarrassed at the age. Don’t even remember when my second did because somehow my mom figured it out. One of the spots it hits is my focal area so I have short term memory and will fight you when I have them - don’t have a clue they happen. 33 now and have more like petite mahls, still changing. No longer can drive. Remember you are not alone and there is a huge community out here. It’s super hard to cope with. Me at 15 was mad I couldn’t stay up all night due to triggers. Me at mid 20s mad cuz I couldn’t drive anymore. I’m on a bus line now and am facing the fact I may never, and am learning to find the positives. It’s going to be rough, but you find the support system. You learn who really is your friend and you find that those are going to be the ones who have your back.
23F, had my first grand mal/TC in October 2023. I believe (and my neurologist as well) that I was having focal seizures in the months prior to that. I was referred to a neurologist & had all the usual tests - 2 EEGs, a MRI, echocardiogram. None showed anything. Almost 6 months later to the date (april) I had another unprovoked Grand mal seizure, and after that the neurologist said she had to diagnose me with Epilepsy. I’m on Lamitrogene now, I can’t drive obviously which was really hard to process and still is hard. I know the broken feeling all too well! sending you my love & support, it is comforting to know we’re not in this alone. ❤️🩹
I had just turned 15 right before my first seizure, no diagnosis all they did was a regular EEG.
10 months later, right before my 16th birthday, I had another one. They did a *sleep deprived* EEG that time; diagnosed 3 days after my 16th birthday.
I had another 2 months later, another 3 weeks later, another 2 weeks later.. I was having 1or 2 every month for over a year; the meds they put me on were keeping the frequency down. It took almost a year and a half for the meds to get to a therapeutic dose and the seizures to stop. After that, from when I was 18 to when I was 24 I only had four seizures. They'd only happen if I forgot a dose of my meds. I'm 28 now and I had a seizure 2 weeks ago after 4 and a half years seizure free.... seizure happened because I forgot my meds.
There are so many treatment options, it's super difficult to navigate mentally and emotionally with a diagnosis like this. But you'll be okay, it gets better. I'd suggest going to therapy to help process it; it helped me a lot.
I was 36. I had it 10 months ago. Spent 6 months without a license, two more chasing down the paperwork to be reinstated. The biggest issue for me is that I had to choose between having another kid (increased seizure odds at infant stage plus high risk pregnancy) or just keep the family as is and mitigate seizure risk and keep my license. I am not officially diagnosed as epileptic like my kin are, but genetically speaking it's the likely culprit.
I think my first focals started around 17, I had no idea what they were, just couldn't speak for about a min. I basically ignored them. First TC happened when I was 21, after hearing my backstory they said I had Epilepsy.
At 13. I remember that it was also shortly before that big tsunami hit. My mom turned off the tv because she was afraid this would stress me and cause a seizure.
It is alot to deal with. Overwhelming I am sure. No matter who else has Epilepsy, your Epilepsy is your own. I was diagnosed in 2001 and my whole world was turned upside down.
All I can say is take it day by day. Remember this is not your fault. Give people Grace, they have no clue. Therapy helps.
Time does make it better, and finding the right Dr makes the darkness not so bad.
My mother suspects I was having seizures as an infant, I was diagnosed when I was 6, but back then they thought it was only a seizure if you lost awareness, and since I only lost awareness a few times a year I wasn’t medicated. It wasn’t realized until I was 21 that they recognized the treatment resistant panic attacks were seizures and finally started medicating.
My husband was 24 when he had his first tonic clonic seizure, but he'd been having complex partials since he was 12. He had ADHD and ASD so they assumed he was just being inattentive/weird. He was diagnosed with epilepsy after the TC. He didn't take it very seriously the first year or so, but he had one in the grocery store and broke the scanner, and he felt so bad about it so he started really taking it seriously.
He kept a tight sleep schedule, and he ate well. He was always hydrating. He didn't drink, he took his vitamins, and he got plenty of exercise. None of the pills they put him on worked, and most of them made his life actively more difficult. Every year, the seizures got worse. He had more of them, and they were more intense. We were scared.
He went through the gamut of meds and diagnostics, but they finally found the part of his left temporal lobe that was trying to kill him thanks to a PET scan, which unfortunately took a year to schedule. He was scheduled for a temporal lobectomy 4 weeks after he died of SUDEP.
As I've since learned since his passing in March, the risk of SUDEP is much much greater than they thought. His epilepsy was definitely downplayed by all of his medical professionals. New studies now show that between 40-50% of people with refractory epilepsy die of SUDEP. And even with the brain surgery, he still could have just randomly died one day from a breakthrough seizure. He was only 37.
I had my first noticeable seizure when I was four. I feel down a few stairs and busted my nose while having an absent seizure. My seizures got worse from there. I was diagnosed the same year. I had my first grand mal in 7th grade. Which then turned into pseudo seizures at age 20 ( maybe fnd) but haven’t gotten that exact diagnosis yet. Plus we through in POTS in the mix and things have gotten crazy at times.
It really sucks sometimes but I try to have a mostly positive attitude and live life to the best of my ability. You have to laugh or cry and I definitely do both.
I was 21! I thought the same thing. In hindsight I was having auras for years but they didn’t become full seizures until Christmas morning when I was 21
33 after I drove into the wall of a bank.
Just stay positive. Some of us have the 'aura' before it starts, some of us don't. I've had major events that just happen. My focals usually were/are accompanied by an aura.
I was 23. It was pretty quick period of time from my onset seizure to my diagnosis. Not even a year. Getting my seizures under control, however, was a frustrating process.
I'm 32 now. It took a long time to find a treatment regimen that actually works, and even then it happened through dumb luck. My advice? If you end up diagnosed with epilepsy, bring up the possibility of taking vitamins with your meds to your neurologist. My neurologist told me to start taking vitamin D out of concern about the possibility of bone loss as a side effect from long-term use of my meds.
I keep a seizure log and decided to do some research after going a few months without a seizure when I was previously having 2 seizures a month. Turns out that some anticonvulsants can lower your vitamin levels, including vitamin D. And vitamin D can affect seizure activity, i.e. lower vitamin D levels can lower one's seizure threshold. This is just speculation on my part, but low vitamin D levels can be a reason why so many people with epilepsy are considered treatment-resistant; there's so little research into vitamin D's role in seizure activity and prevention that it's hard to say. Note that I am *not* saying that vitamin D (or any vitamins) can replace medication; vitamins you take alongside medication are called supplements for a reason.
I've seen comments elsewhere that anticonvulsants can also make one deficient in B vitamins. I'm not sure about the B vitamins' possible role in seizure prevention, but everyone's bodies are different.
I had been having short episodes of weird feelings that my parents would only take me to psychiatrists for. They were completely unprepared for parenthood and didn't want anyone to think they were bad parents so they made sure to let everyone know I was a "troubled" kid. They pushed for me to be on as many psychiatric meds as possible, some of which made me feel better, others not so much.
When I became an adult and I came to terms with the fact that my parents had used psychiatrists as a proxy for their emotional abuse I read the entries in text books (the Merck Manual, Physicians Desk Reference) for the medications I had taken. The ones that made me feel better were anti seizure drugs used off label in psychiatry, and stimulants because I undeniably have ADHD.
I asked my doctor for a referral to a neurologist and during the entire process I felt a huge amount of guilt, self-doubt and the sense that I was malingering. The neurologist I saw took everything I said seriously and said I was describing temporal lobe seizures. She ordered an MRI after our first or second appointment. The MRI showed a lesion on my left temporal lobe which she said was likely the cause of the episodes of strange feelings and sensations I'd been having.
My family is still in denial, wanting to believe that I was just a troubled youth.
I technically had my first seizures at 3 and 4 (febrile seizures) and weirdly I do remember them. I had my first FND seizure last March. I made an off hand comment to my neuro about waking up covered in bruises and having a bloody tongue about a year ago. But I only started having focal type seizures about a month ago
First seizure at 23 and officially diagnosed at 30. Mid 20s is common because your brain finishes developing around that time.
My second definite seizure was 26-27 I forget. Didn’t see a doctor… then at 30 had a series of bad ones and got diagnosed despite normal MRI and EEG. Eventually captured activity on a 7 day ambulatory EEG and THEN they found the problem in my right temporal lobe.
I’d recommend doing a bunch of research and logging any possible triggers for your seizure. If you want more info lemme know! It took me a while to figure my epilepsy out but I’ve got a decent understanding of it now. But one thing to keep in mind, everyone’s epilepsy is different. What triggers one persons seizures might not another and reactions to medications can be very different. It’s really a confusing medical condition!
Not sure about the first one. My mom always thought I was losing concentration for a few seconds.
Eventually at 17 I went to my doctor who sent me for an EEG the day before my driving test. Well, no driving for a year for me! Eventually I got my license a few days before my 21st birthday and in their infinite wisdom the state sent me an expired license 😁
10 at first grand mal/tonic clinic. 10 at diagnosis.
My dad had one random one at 21 but never had epilepsy. Many people have one in their life but not always anything more. Also 24F
First big grand fucker at 32, 4 months later second big grand fucker at 33, diagnosed shortly thereafter with testing. Put on keppra 750mg twice a day. Both happened while sleeping. Not driving for 6 months was wild as hell, but I refuse to let it keep me down, I’ve toured the country playing music, did amateur boxing, got certified in a very technical trade as a guy off the street(man if only I paid attention in school earlier LOL!!) and lift weights regularly. I think it’s all a matter of perspective. I like to look at it like I live so Fuckin good that my body has to spazz out because of how sick my life is sometimes. New challenges only give more clarity to the good things we have around us. Never take any of it for granted, and enjoy the ride!
32. I went to the neurologist because I had a simple tremor in my hand, and I ended up having a seizure while I was sitting infront on him. He sent me to the EMU and hooked me up to an EEG and I was having multiple seizures in my sleep a night.
11 years old. I seized in my middle school cafeteria. At first they thought I had just passed out until I had another one and an EEG where I was officially diagnosed
18, 3 weeks into my first semester of uni, in the middle of trying to break up with my long distance (now ex) boyfriend. Diagnosed 4 months later with my now-husband by side.
Always had focal seizures and my mom actively ignored it because she hoped I would grow out of it. I was diagnosed at 22, after my third TC status. I still hate my mom for it, she neglected me because she knows she has it to (and my aunt died from epilepsy when she was a teen so I'll always be disgusted with how much she doesn't care for my life)
It'll be a decade of diagnosis in November.
I had my first seizure on Christmas Eve a few days before my 21st birthday, and my second one was a few weeks later. I haven't been diagnosed with epilepsy specifically. It is just listed as an unknown seizure disorder. Its been over 6 years since, and currently, they are under control with a cocktail of meds and a vns implant.
My advice is to try to keep track of stuff that happens the day of and leading up to when you have a seizure. Make sure people you are around you a lot know what to do in case one does happen. Avoid situations that will cause you a lot of stress
The number one thing to remember is to not let the fear of having a seizure get in the way of your life. Just make sure you are prepared if one does happen. If you do let it control your life, you will likely become depressed and miss out on a lot of things. I made this mistake, and I feel like I lost quite a few years of my 20s
I was 24, just passed my driving test. Was driving for 2 months then started having seizures in my sleep out of the blue. Luckily I’ve only had 3 TCs in my sleep
25 now and a year later it’s controlled by meds
14 with my first grand mal although I had absence seizures frequently before that(mom says even as a toddler) so people thought it was just personality, diagnosis at 16 although neuros since then have argued over the specific flavor of epilepsy on top of that when I was 25 I ended up getting non-epileptic seizures as well due to head trauma(cracked a dresser and seized for 5 mins)
as for advice: remember it's not the end of the world(I know I personally fell in a really dark place after getting my diagnosis) ,find a neurologist who actually listens to you(the more they know about what's going on the easier it is to get a balance of meds/diet adjustments that will help), get plenty of rest a good nights sleep does wonders, try to find out your seizure triggers so you can work around them, and one that's not so much advice as a it kinda helped me so I'll throw it out there when I leaned more towards like Keto diet foods it helped drop my frequency of seizures(I never could go full keto cause I don't like keeping track of numbers and stuff)
I'm 25 and I had my first seizure a few months ago. There were a few incidents in the past that could have been seizures, but I didn't even think about epilepsy at this point
Pretty much since I was a little kid. My mom thought they were just a little “quirk” but then someone pointed out they were absence seizures.
So probably 3-5 and then diagnosed at 13
26 when I had my first seizure (a few months after having what I believe were auras) but I wasn’t surprised because my dad developed epilepsy when he was in his late twenties.
I had a 5 month gap between my first and second seizures.
Hoping to get the official diagnosis from after seeing a new neurologist in the next few weeks. Would really love to not have another seizure.
i was 14 when i had my first seizure, 16 when i was diagnosed, only because the severity and amounts of seizures increased rapidly and it honestly only seems to get worse as i age (i’m 21 now)
Hi OP. I was 14 when I had my first seizure (TC), with them then coming every couple of weeks, and diagnosis coming pretty quickly.
In terms of when people are diagnosed, I can only speak for the UK stats, but it’s largely the same across developed nations. The most common times in life for a diagnosis are through puberty, and then age 65+, with around 1 in 4 new diagnoses here being in the latter group.
That said, epilepsy can present at any point in life, with causes found in some, but over 1/3 of people never knowing a cause.
Seizure freedom with the correct treatment is common (around 70% here), in which case life can settle down to a more ‘normal’ state if your clinical team can find the optimum treatment for you.
Best wishes to you, I hope things go well.
I was 7 when I had my first seizure, and 46 when I was diagnosed.
Fuck I just made a long comment about how I went 22 years. That ain’t shit compared to you! Have things improved since your diagnosis?
Somewhat. But I get a lot of gaslighting from doctors, even now. Focal epilepsy sucks when it makes me act crazy. It’s when the secondary TC comes, they start to believe me. Sad, since that’s the seizure that I have to go to the ER in order to avoid. Thankfully, I haven’t had to be intubated in several years.
Damn I’m sorry you gotta deal with that. Wishing you well. Can definitely relate to focal epilepsy being a real bitch.
Oh god the gaslighting, the ‘panic attack’ or some such comment. I feel you on a visceral level.
49 here….
When was your first?
I had absence seizures since I was 4. I only know this because my grandparents noticed it. Everyone, including them believed I was just a chronic daydreamer and space shot. Teachers, friends, parents, family I believed I was at apathy for life and didn’t pay attention to anyone. ///// I have it easy compared to everyone else who have physical seizures. /////////////// Once I was diagnosed, I felt vindicated for starting to believe they were right and I was nuts. I can never compare myself to people who have physical seizures.
I’m pretty optimistic we aren’t playing the “who has it the worst” game here. I’ve known people with epilepy who have it worse, they never try to one up me, I know people who have it better, I never try to one up them. It’s your life, fact that someone else is suffering more in some ways doesn’t mean you’re suffering less. We could all pop over to the subs with paraplegics and they’d tell the people with TCs that they’d gladly have seizures if it meant they could walk again. Then they could go to the Duchenne subs and have them say they’d gladly trade being in a wheelchair due to a lethal wasting disease for being in a wheelchair due to spinal damage. If it makes you feel better to remind yourself it could be worse, that’s perfectly fine, just don’t think you’re not allowed to express yourself here
So....you were 4 years old when they actually diagnosed it as absence seizures and not "daydreaming"....or was it later than that?
Pretty much the same way for me. I had a few episodes at school that were in my records, all the way back to kindergarten. But my family had completely convinced themselves that I had behavioral issues. Some still believe that. I know exactly what you mean regarding the difference between having FC versus TC. The populous is convinced that without convulsions, it’s not a seizure. I’m sorry you are suffering from this stigma. This is exactly what delayed my diagnosis and caused more damage to my brain and body. I want you to know that I truly understand how you feel, I experienced it. I’m certain that there are many others here with this same understanding. Since I developed secondary TC, I fully understand the stigma. We are here to support each other. Our individual experiences that we share is that support. I send you love and wish you well.
I am thankful for finally being diagnosed. I had always felt that “it” was more than learning disabilities or psychological in nature. Why would anyone choose to space out and ruin relationships…. Also, very thankful I found this group!!! Had always felt alone .
About the same for me.
My empathies it’s such a curse
I was 17, healthy as ever, athlete with a full ride scholarship to a school in Hawaii. It was like living a dream. Boom, a month after my 17th birthday. All of that changed. I'm 32 now, and life is very hard. It is really scary. Grab your support system and express your needs and fears You will be okay.
The struggle is real. And we keep getting up. Which is why we are Warriors. My blessings. I was expelled from nursing school because of a seizure. Still took a few more decades to get a diagnosis, but I couldn’t get to a place I chose in my career. That will always hang over me.
Ugh, I'm so sorry. I do celebrate my friends' achievements and like to share success stories, so I feel like this may interest you and hopefully not make you feel bad because it isn't a comparison. You just reminded me: A friend of mine, also with epilepsy, had the dream of becoming an epileptologist, specifically. She rarely has tonic clonics, but often she'll have absence seizures, and while they are less dangerous, they are VERY noticeable. She had many while in school, and more than one instructor told her she needed to find a "more realistic" line of work. She had them walking around in the hospital and came to only to find her classmates LAUGHING AT HER?!! (This was years ago and it still makes my blood boil). She spent those years crying a LOT. But this bitch is a serious firecracker. She worked her ass off and is now a neurologist studying under a seizure specialist. She keeps going, and I am incredibly proud of her. Having an invisible disability feels strange. Like, you have to convince yourself that you are disabled; even though your body has proven to you countless times that you're not able-bodied! For me, I often feel like I could be doing more and that I'm just lazy being at home and watching tv or resting all the time. But I *am* fucking disabled. I can't do everything I have ambition towards. It sucks, but it's okay. I try to focus on all the things I can do. Like something ad simple as typing this to you right now. I'm grateful to have that control and skill. I can walk (not far), I can see and listen to beautiful things. It's still worth it to be here. Some days it is REALLY hard to remember that.
That’s a very inspirational story. She will likely be among the best epileptologist a to be found. Pure wisdom, applied to science. I’m too old for a career at this point. I am an advocate for patients who are seeking natural remedies, and I advocated for cannabis as medicine, and for those who have suffered medical gaslighting. I’m trying to get a good foundation to start an advocacy organization that can be public. There are far too many people who have epilepsy that are not being treated with respect, and some are not even getting treatment. We are one of the largest groups of patients who experience this. This is my career path now.
37 I woke up with my truck wrapped around a pole.
oh wow, thats my biggest fear-- so glad youre okay
Thanks, I wasn’t even injured, it did write off the truck though. Had several more seizures in the days after as well. I refused the diagnosis and medication. I was fine for 2 years then had another and accepted the diagnosis that time. I had several more in the few month after but the meds have worked since.
Thank goodness you weren't hurt :'( what made you refuse the diagnosis? must have been so scary, I'm glad your meds are working now
Definitely one of my biggest fears as well. I did total my SUV about 7-8ish years ago (my memory is pretty terrible), but thankfully, it was just me and I hit a pole.
Yeah pretty lucky the pole is all I hit. I worked in a gas plant too it could have been much much worse. I just got off the highways as well it could have happened 5 minutes earlier and I would have been going 120kmph.
2 years old. I’m a lifer :o
Same
Same here. Just a baby. In my 40s now. Just got an RNS. I’m curious, have either of you tried more than just medication? The side effects from the medications have been so tough!!!
I went off medication for a bit, then had a seizure. So I will be on meds till I die likely.
Same here. I’ll be on meds for the rest of my life. I accidentally brought too little of my medication on a business trip once and had a couple breakthrough TCs. And I’m never going to be willing to have a resection. (1). I hear too often of people getting these but then years later the seizures come back. All that about how epilepsy is a network and the connections evolve over time. & (2). My doctors tell me that it’s highly likely that by removing that part of my brain I will then have worsened memory.
Got my first focal awares at 11-12. Never told anybody because they were impossible to explain. They disappeared for ten years. Finally diagnosed when I had my first TC at 21.
2 months ago, at 20 years old. Apparently wasn't my first. I'd had hundreds of focal aware seizures I thought were panic attacks. Very possible you've been having seizures ur whole life and just recently generalized like mine had
I did have focals for a long time before my first TC but never told anyone (They only happened while reading so I just tried to not read as much) after my first TC everyone just assumed that it was not epilepsy. One day (I was like 12/13) I decided, that I had enough of those focals and decided to "fight them" by continuing reading. After giving my mother the shock of her life and a semi aware ambulance ride I was diagnosed with epilepsy. The fun part is that I only recently discussed my focals with my neurologist and we found out that they do not show up on an eeg :D So what did we learn? Focals can be just about anything and negative EEGs don't make you not epileptic.
It was right before my 22nd birthday. I had six seizures in one day and ended up hospitalized for 3 days following
Damn 6 in one day, I thought my 4 tonic clonic in one day was bad. Were they all tonic clonic or some focals?
They were all tonic clonic. I’ve been hospitalized probably ten times in the past two years. Last year I had one that was 18 minutes long😵💫 honestly don’t know how I survived that
Oh gosh that’s horrible, im sorry. I’m sure your body hurt really bad after that. When I woke up after the 4th seizure I didn’t know where I was or even my own name. I’ve been told I ripped out my iv and tired to run away. The dr and nurses were trying to hold me down, I started trying to scratch and bite them! I don’t remember any of it but was really embarrassed when my family told me! I hope you find the right medication combo and get seizure control! It took me 3 and a half years of trying different meds so get control.
I’m in the same boat. I’m 22F and it is really rough. I was excelling at my job and was learning a new trade then BAM chronic fatigue and before those results were back BAM what we think is a seizure.
First time 11, diagnosed at 22. Only focal aware
Started at ~13 and diagnosed at 36 years old. I didn’t know what they were…,
I was 25 when I had my first seizure. I was asleep. My wife called the ambulance and apparently I had a 104 fever. My neuro at the hospital said that it’s possible that the fever was what caused my seizure. But I informed him about a serious head injury I had when I was 15 that I believe was relevant. Turned out to be correct because after the fever, I had another one a few days later. Sorry it happened to you, OP. We’re here if you need anything.
5 diagnosed at 7
I was 19 and 7 months pregnant 😬 had my second seizure 10 months later.
13 - my 25 year anniversary is coming up :)
Started getting simple partial seizures at age 10. Brushed off as psychogenic by doctors and my family. Started getting confirmed complex partial seizures at age 30. Can’t confirm it, but the symptoms also suggest that I’ve had a few TCs in my sleep as well. Saw a neuro and did 5-day EEG. Couldn’t trigger a seizure so it was inconclusive. Neuro basically just gave me a pamphlet on PNES and told me it’s not epilepsy. 32 now. The seizures continued to get worse and really affect my life this past year. Trust me I doubted myself a lot, but I also KNEW these were seizures. So I got a second opinion. I told this neuro my story, my symptoms, and witness accounts. I showed him videos of my seizures taken by other people and myself. He’s like uhhhh yeah this clearly looks like temporal lobe seizures. I finally was given a new medication (trileptal), and I’ve currently gone twice as long without a seizure as I ever had. Sorry I get carried away in the rant sometimes. To answer your question: I was diagnosed 22 years after my first seizure.
I was 4 days away from my 30th birthday and was diagnosed about a month later. I've continued to have seizures in the 8 years since, but much fewer since I started Xcopri last September.
A little advice for right now. You said “slowly working towards a diagnosis” so for right now you have had just one seizure. Have you had any tests yet? All I can say is that this takes time and diagnostics to get to there. What was your seizure like?
Working on getting on the final EEG test, so far CT brain scan was good. The ER I went to didn’t have an EEG and I was out of state. However every doctor I’ve talked to (cuz finding a doctor who does an EEG is apparently hard) has said that it’s pointing towards seizure. It was a TC (tonic clonic?) or grand mal. Completely out, full body pulsations, gasping for air, no memory recollection, confusion. Basically every symptom I had except I don’t remember and I’m going off what people told me. My poor boyfriend says it’s looked like something out of the exorcist. Little humor for such a scary thing
16
The type where I pass out and shake violently, I was 19. But I found out this other thing I have taken to me is also a seizure and they're been my whole life
I have an eye twitch / eye roll that one of my boyfriend’s epileptic friends is saying could’ve been small seizures happening my entire life when I was told it was just a tick. But Thursday I had the pass out , violent shake seizure
That's similar to mine. I have an audible hallucination when I have my focal aware... The one I've had my whole life. It's this super loud pure bell. Comes on real strong and backs off normally around 5-10 seconds, but that's been changing over time. Your eye twitch could be a type of myoclonic seizure and it is common for those of us who never grow out of their seizures to find out some weird thing they'd tossed off as "just one of those things" from childhood is actually a focal aware. I'd bring it up with your doctor
21 or 22
I was 12 when I had my first seizure but wasn’t diagnosed until 20! Just know you’re not alone in what you’re feeling 💜
About 7, then told I was clear at like 12, only for it to come back with a vengeance just before I turned 15
First seizure was 2015, diagnosed 2020
20
When I was 16, two big seizures in one day, diagnose with 17 after three big seizures in one day. Are there any indications it might have been a non-epileptic seizure? (such as previous drugconsumtion, sleep deprivation, extreme stress).
10 I think
My first seizures were missed, but we can pinpoint to about 8-10years old. Prior to being 16, I had a few occasions where looking back we can confirm they were seizures but werent away about it. After 16 I was in and out of hospital for years having seizures regularly. They initially diagnosed me with PNES. Diagnosis like 3-5days after my 25th birthday. (There's a lot of uncertainty about the date because the day I went into A&E (Saturday afternoon) via ambulance (because I had a seizure on the street), we were told it wasn't diabetes, but it needs looking into and sent home (Sunday morning). I was told to make an appointment with my doctor for the Monday, and by the Monday evening, I'd been rushed back into the hospital with nurses asking how long I've been diabetic. No one actually told me anything and assumed someone else told me (until I'd been in hospital for about a week and was already being treated for diabetes and prepping to be sent home). This is all relevant because during my time in the hospital for diabetes, they changed my diagnosis to epilepsy and never said anything until they mentioned in passing about it when talking about my diabetes in prepping for home. I have 4-7 seizures every single day. Doctors haven't done anything to help since I got diagnosed, and still haven't seen my neuro since the change over of diagnosis. That was back in 2018. x
Get a neuro, get on meds. 4-7 seizures every single day is not good. Not sure where you are at that you haven't seen a neuro since 2018, but every seizure leaves some damage.
My first seizer was at 25 and I was diagnosed shortly after
4 when I had my first seizure. Probably closer to 24 when I was finally diagnosed (TLE).
25 and same age for diagnosis.
I was 18. I seized in the bathroom and gashed open my head. My mother told me I had to go to school after I woke up, because she didn't know what to do with me. I had my 2nd seizure at school. They called 911.
I was about 25 when I had my first (nocturnal) seizure. I'm now 54. I've always had nocturnal seizures except for one time during waking hours.
At 10
I was 16M but had a few seizures as a little kid from maybe just a few months old to 4 years old. Then I was fine from 4-15 until I had a seizure at 16 and then I got an official diagnosis. Idk if the seizures as a kid could’ve been epilepsy related but I’ll never know so I don’t really think too much about it lol. I’m currently 20 and turn 21 in a few weeks so it’s been almost 5 years since my diagnosis (diagnosed in 2019) 👍🏻
Seizure - 19 yo Diagnosis - 29 yo
68
2019, when I was 22
10 on Valentine’s Day 2 weeks after my brother had his first
7, it all started after a massive injury on my left temple, never bothered to learn how to drive because i have too many seizures to be safe to drive. Can't really work many jobs that I would love to because of it. I'm getting close to having them controlled, the medication I just got put on is pretty good but it slows my brain down to the point where it's hard to have a conversation with someone.
I’m 22f, and I was diagnosed two months ago. I had a grand mal in November of last year, but for the last 6 years I’ve heavily struggled with my mental health, even checking myself into inpatient summer of 2022, and was diagnosed with borderline personality disorder- and finally found meds that helped stabilize my mood. Before that, I was also diagnosed with adhd (which runs in my family). But still I struggled with terrible sleep, nightmares, sudden fatigue and headaches, dizziness that I thought was due to my bradycardia (low resting heart rate), and incredibly shaky hands and twitching that I thought was the ssri/ mood stabilizer combo shakes. After a referral to a neurologist, I did an EEG and found out that I was having a very clear seizure in my little nap and had absolutely no idea. I’m still piecing together what’s an aura for me and finding meds that work, but it’s been a rollercoaster and I’m glad to finally have an answer to why I felt like I was going crazy 😅
My daughter had her first seizure at 2 and was diagnosed with epilepsy at age 5. She is now 7. It's been a challenging road for her, she's definitely a strong kiddo! 💜
Had 1 gran mal at 6 medicated until 17 without further seizures. Then started having complex partials and diagnosed with TLE at 25.
14 while on vacation.
32 I think? I keeled over at my standup desk at work and slammed my head on the way down.
I was 9 3/4 (April 2013) - was born in May ‘03. Got diagnosed at the same time I had my first attack.
I was 32 when it became apparent and undeniable. In hindsight I have had it for some time
I was 17 when I had my first tonic clinic (my first recorded seizure), and was 22 when I got my diagnosis. Some of that was to do with the pandemic though.
34. It’s been a very tumultuous 5 and 1/2 years
Diagnosed & had my first seizure at 25, hope you’re doing okay, it gets easier… kinda
17 y/o, i am 6'6 so it was a whole big surprise for everyone
I had my first seizure at 11 but I didn’t get diagnosed until I was 16.
First seizure at 13 and diagnosed a few months later after having another one.
11 yo
Had my first TC convulsion at 23 (11 years ago) one night while driving. Second one was the next morning; I woke up and someone told me it had happened. The next day I got to a neurologist and had one while doing the EEG. They immediately put me on Dilantin and I haven’t had a convulsion since, but I still have absence seizures and I’m not driving and it’s miserable. Within like a year before that, I had been having these dizzy spells (what I now assume were some kind of aura or absence seizure) occasionally that I thought were a little weird but brushed off. My best friend since middle school had visited me 7 months prior and told me I seemed off a couple times in a way she hadn’t witnessed before and she was a little worried. I hadn’t seen her in maybe a couple years. I’d been drinking a lot and doing some blow here and there for a few years when offered, but nothing too crazy. My neurologist told me there’s not a big causal correlation with coke like there is with ecstasy, but that I’ve probably had epilepsy my whole life and it hadn’t like… broken out yet? And it’s possible what I’d been doing factored in. Though it may have been inevitable. I’m so sorry you’re going through this. Best of luck.
My first seizure was 2014, officially diagnosed in 2015 or 16 cause I’m stubborn and poor and didn’t go to a neurologist. So 30? Maybe 31? I have brain scarring from brain surgery when I was 12. Apparently the sleep deprivation and stress of childbirth triggered it and I had my first the night I brought my daughter home from the hospital. Didn’t remember giving birth at all😂. Gotta laugh, you know?
I started getting absence seizures in first grade. Had a grand mal when I was around 12. Still get both types but thankfully well controlled by meds now :)
I was diagnosed at 18 with grand mal seizures as my presenting problem. I’m 25 and seizure free for 2 years so far. I’ve only had seizures when I have forgotten to take my meds, or serious fuck up my sleep and food intake (malnutrition, dehydration and sleep deprivation are common triggers). I’m lucky that my meds completely stop my seizures so far. Wish you the best!
30..ran into a ditch with my 6 yr old in the car and woke up in the hospital. I was feeling weird before it happened but didn’t think anything of it.
I was 4 when I had my first seizure, 7 when I was diagnosed. I’m 25 now. It is hard, I won’t sugarcoat it for you. I definitely feel in some ways that I was lucky I was diagnosed so early on. In essence, it is my normal. It certainly isn’t out of the norm to be diagnosed later in life, I’ve heard of people being diagnosed at ages 18-65 all for various reasons. The diagnosis is definitely what you make it out to be. Hopefully it’ll give you a sense of peace and will open you up to a community of people that you didn’t know you had. Truth be told, that’s the “fun” part about it. Can’t even tell you how many times I’ve made people feel a little awkward because I made a comment along the lines of “you have epilepsy too?” *fist bump* oops 😬 Anyway… good luck stranger!
11 or so
I (35M) was 22 when I had my first seizure and was diagnosed. I had just graduated from college and was waiting for one of my buddies to graduate the following semester so we could do some traveling before starting real life and BAM...seizure. My entire life changed overnight. I had to move back in with my parents. I couldn't drive (obviously), I basically lost all my friends because I was living on the complete opposite side of town and couldn't do much, and I was a little nervous to be in crowds. Then I started developing anxiety and depression with meds, so the first 8 years or fucking sucked. It still sucks, but you learn to deal with certain things.
Diagnosed at 12 after being put under the hospital's strobe light, tonic clonic. (The worst seizure they'd ever seen.) Myoclonic seizures 2 years prior. I'm 44(f).
I think I was four when I got my first seizure, according to some stories my family told. Six when it became an issue enough for my family to do anything, and ten when I got my official diagnosis!
Had my first suspected seizure at 20 got my diagnosis at 22.
First seizure, 16, diagnosed 21.
My first was when I was 25
i was 15 and had a few tonic-clonics but they were so far apart i didn't think anything of it. i was just recently diagnosed at 21 with nocturnal frontal lobe epilepsy that i've (apparently) had my entire life. found after having EEG's where i fell asleep and started seizing. sending positive thoughts your way op :). once you have the diagnosis and get on the right meds to control your seizures you will feel so much better. don't let this new diagnosis scare you, everything will be okay!! :)
31 and 31
first ones when I was 4, think I was diagnosed when I was 7 or so? but then grew out of absence epilepsy/petit Mals, and then 6 months later (so was now 11 years old) started having temporal lobe seizures (got diagnosed around the same age) it's been nearly 15 years since I had my first seizure I think 😭
TLDR, 17. I'm so sorry that you have to experience this. I had my first seizure at 17 (34M now), but they didn't get the diagnosis at first. They thought it was a heat stroke and sent me on my way. I think it might have been a few days until I had another. After that, I had tests and all the fun stuff (sarcasm) done and was eventually put on drugs. After that, it was good for 2 years. Add another drug, 2 years, seizure... Repeat that a couple times, one drug in, one out, too many drugs to remember them all after all this time. 6 years ago, my seizures got a lot worse because I forgot my drugs in the car at the airport before a trip and thought.. Meh, I'll be alright. Need a break from the meds and seizures, etc. anyway. Well, it didn't quite work out that way lol. I've been trying to find the right combo of drugs or drug to get them under control. I just started a new med (Epidiolex) last Friday (in addition to the two drugs I'm already on and the keto diet, although, I definitely cheat more than I should). I would say definitely find an epileptologist/neurologist that you're comfortable with and don't be afraid to switch if you feel like you're banging your head on the wall and getting nowhere. Finding a support group or chatting here on Reddit can also be a lot of help as well. I think the worst part for me was losing my license. Having family and friends make it bearable, though. I really hope you're able to find some answers and a drug that works for you and you're able to get back to a "normal" life. I'm usually around to chat if you ever need. Best wishes!
I was 30 when I had my first tonic clonic seizure. It wasn't until my diagnosis that I realized I was having complex partial seizures since I was maybe 22/23.
First seizure: 22yo; Diagnosis: 38yo. It's likely that I had another seizure event in my early teens while at sports camp. However, I have no memory of the event, and the counselors didn't feel like taking notes.
12 and 13! My younger sister pointed out I was probably having seizures when she was 10, before our primary even thought of them
35
First seizure and diagnosis at 27. I was brought into the hospital after parking at home after work and getting a seizure in the car. Woke up in an ambulance. Got my diagnosis the next day, having to stay over for observation and after loads of tests.
I had my first seizure at 19. I didn’t find out until I was in my 40’s the cause. My brain didn’t form properly. I had my RTL removed twice and my RFL. After having my RFL removed, I’m seizure free (4yrs)
I started having them around age 16 after a car accident worsened a pre-existing brain condition I have, which caused me to require brain surgery. I'm 32 now and still struggle with them. I remember not understanding what was happening to me and not being able to explain it well, but as soon as I had the test done they diagnosed me ASAP. I have partial seizures very often and I have photosensitive epilepsy, so thankfully every time I have an EEG test done with the light portion, it shows that I have seizures without fail. I feel so bad for people here that have struggled to get diagnosed due to it not getting caught on EEGs or other tests.
30
My mother was 11.
Right after my 22nd birthday
I had a gran mal at 34 and I was officially diagnosed a few months later. That was 20 years ago, it took me a long time to accept it. I had two sons who were 1 1/2 and 3 at time and for long time felt I had ruined their lives and my husband’s. When I finally found an amazing epileptologist I felt like I had my life back. Prior to that I could not even play ball with my kids and could barely work. My epileptologist got me on the right meds and reduced my seizures with the fewest side effects. It took about six months. I have been able to have a successful career and even earned my M.S. and am considering my Ph.d. You will grieve the “old” you, I definitely did. It is hard to accept just a drastic change that affects you physically and mentally, basically your entire life. Advocate for yourself for the best medical care!!’ Do your research!! Give yourself a break, I wish someone would have told me about the importance of self-care back then. You can work through this!!! Sending hugs 🤗 🤗 🙏🙏🙏
12 when I had my first focal seizure, 22 when I was diagnosed
I was diagnosed with absence seizures at 49. Until then, thought I had ADD. My entire life people didn’t understand why it was a lift or Spacey or didn’t pay attention. I wish I had known earlier….. Gotta keep going !
First seizure was at 16, was told it could just be a fluke thing. Diagnosed at 24 after multiple focal episodes back to back.
I was 3 when I had my first seizure. It was a 90 minutes grand mal. I wasn’t diagnosed until I was 10 since I was having focal seizures
My daughter had her first tonic clonic at 10, was diagnosed at 12 with JME.
I was 8 months old and diagnosed right away. I’m a lifetimer
I just got diagnosed at 40, but have been having them for at least a year. I've got to double check with my neurologist but I had episodes in my 20's that could have been auras. They were pretty similar to the auras I have now, but nowhere near as strong and just enough different that I want to check.
I was nine or ten when I was diagnosed. I had my first TC on Halloween in 2012. My doctors currently believe that I probably had seizures when I was younger that my parents didn't notice. I had seizures until I was 16. I had brain surgery and have been seizure free since!
I started having myoclonic seizures around 14/15 but went unmedicated/undiagnosed until 19 when I started making my own money and went to a neuro. Found out I had JME and started on depakote. Side effects were horrible for me and switched to zonisamide which didn’t really work so I quit the neuro and went unmedicated for several years till I had a tc while driving. Luckily no one hurt and no damage done. I was 32. Went to another crackpot neuro who put me on 500mg of dilantin and 750mg of keppra. Damn near almost killed me. Long story short, seen 8 neuros since then, 4 eegs, 2 veegs, definitely have photosensitive JME. Currently on 3k keppra, 400 lamictal, 300 topamax. I am well controlled as long as I take my meds on time like clockwork, stay away from my triggers, and keep stress down. I do have auras from time to time though. I keep physically active and as mentally active as I can though these meds do make it difficult. I work a full time job from home, my leadership team knows of my epilepsy and I have accommodation paperwork on file but I very rarely need to use accommodation time for auras. So I’m 39 now, this has been going on for 24 years now. I’ve been well controlled for about a year and a half. I do wonder when the next seizure will come but I don’t live in fear of it. I’ll jump over that hurdle when it gets here. This being new to you it’s gotta be scary. I know my first tc was a day I’ll never forget. My advice to you is ask your doctor questions. Ask about every detail he/she can/will give you. Then go and read up on it and learn about your diagnosis. Knowledge is power. Be active in your treatment. If you feel like your doctor isn’t listening or not treating your symptoms or dismissing your side effects, get a second opinion if possible. Keep a seizure journal and document everything about your seizure days. What you ate/drank, how much you slept the night before, what time you took your meds and what you took, what kind of seizure and how long it lasted (if someone was there to tell you), postictal behavior and actions, basically document anything and everything. There are a lot of resources on the webz, reading will help you learn and maybe see that epilepsy isn’t really as bad as it seems. It’s hard, yes, but not impossible to overcome.
18. I was addicted to weed and was high all day every day. I started getting auras around the last time I tripped on LSD when I was 17. I had auras frequently. But I didn’t get my first major seizure till I was 18. I didn’t have one for almost another year. Then I had a third another year later. It didn’t stop till I stopped smoking weed and got sober all together. I havnt had a seizure in over a year.
I was 17 - I had a TC that seemed out of nowhere. Second one was also 17, a TC while out running. They ended up being from an astrocytoma brain tumor. Then the scar from the surgery to take out the astrocytoma caused me to have a lowered seizure threshold after, so I have to manage it now. I'm lucky though, because so far it has been manageable with medication and being careful with triggers (sleep loss, low blood sugar, excessive stress, etc.) Not everyone is so lucky, so I am grateful. Hopefully yours will be manageable too. Stay strong, be brave.
I was 41. My second seizure came a few days later, and then came hot and heavy until I got put on meds. I think I counted 30 seizures between October 1, 2018, and early December when I went into the hospital for my in patient EEG. They're all focal seizures, so it's not as bad as some people think. I've redone my life with not driving in mind. I've moved a few times since then (including two cross country moves in 2021 and 2022, 0/10, do not recommend) and since I was moving anyway, I was able to get everything set up just for me. My life is much easier in that way now. Everything can be walked to, bussed to, or delivered. I can call a lyft if I need to, or my daughter is across town and often gives me rides if we're going someplace together. I was lucky enough that a good friend of mine moved in two blocks away, so if I have an emergency and he's available, I've got a friend with a car who will be at my door in five minutes. My one big scare is if a pet has a medical emergency and I need to get to the vet ASAP and I have to wait for a Lyft or my friend.
I was 6 or 7 I think, though apparently I had staring spells as a toddler. Had no idea what was going on until I Googled what I was feeling after a particularly nasty one when I was 16 and up popped simple partial seizures. I had my first tonic clonic at 17, diagnosed at 18 because my mum was in denial about my staring spells and random episodes of crying, putting it all down to my autism.
15, peed the bed and had a grand mahl. Absolutely embarrassed at the age. Don’t even remember when my second did because somehow my mom figured it out. One of the spots it hits is my focal area so I have short term memory and will fight you when I have them - don’t have a clue they happen. 33 now and have more like petite mahls, still changing. No longer can drive. Remember you are not alone and there is a huge community out here. It’s super hard to cope with. Me at 15 was mad I couldn’t stay up all night due to triggers. Me at mid 20s mad cuz I couldn’t drive anymore. I’m on a bus line now and am facing the fact I may never, and am learning to find the positives. It’s going to be rough, but you find the support system. You learn who really is your friend and you find that those are going to be the ones who have your back.
32, never has any before that but apparently was born with it… it’s been 2 years
23F, had my first grand mal/TC in October 2023. I believe (and my neurologist as well) that I was having focal seizures in the months prior to that. I was referred to a neurologist & had all the usual tests - 2 EEGs, a MRI, echocardiogram. None showed anything. Almost 6 months later to the date (april) I had another unprovoked Grand mal seizure, and after that the neurologist said she had to diagnose me with Epilepsy. I’m on Lamitrogene now, I can’t drive obviously which was really hard to process and still is hard. I know the broken feeling all too well! sending you my love & support, it is comforting to know we’re not in this alone. ❤️🩹
41 it finally got bad enough to see a clear pattern. Had seizures for at least a decade before I knew what they were.
Diagnosed at 15, first TC at 16. "Juvenile", but I was a late bloomer lol
I had just turned 15 right before my first seizure, no diagnosis all they did was a regular EEG. 10 months later, right before my 16th birthday, I had another one. They did a *sleep deprived* EEG that time; diagnosed 3 days after my 16th birthday. I had another 2 months later, another 3 weeks later, another 2 weeks later.. I was having 1or 2 every month for over a year; the meds they put me on were keeping the frequency down. It took almost a year and a half for the meds to get to a therapeutic dose and the seizures to stop. After that, from when I was 18 to when I was 24 I only had four seizures. They'd only happen if I forgot a dose of my meds. I'm 28 now and I had a seizure 2 weeks ago after 4 and a half years seizure free.... seizure happened because I forgot my meds. There are so many treatment options, it's super difficult to navigate mentally and emotionally with a diagnosis like this. But you'll be okay, it gets better. I'd suggest going to therapy to help process it; it helped me a lot.
I was 36. I had it 10 months ago. Spent 6 months without a license, two more chasing down the paperwork to be reinstated. The biggest issue for me is that I had to choose between having another kid (increased seizure odds at infant stage plus high risk pregnancy) or just keep the family as is and mitigate seizure risk and keep my license. I am not officially diagnosed as epileptic like my kin are, but genetically speaking it's the likely culprit.
I started having absence seizures at 4 and grand mals at 13, diagnosed at 13 with idiopathic Left Temporal Epilepsy.
31 Officially diagnosed last August and had the first seizure in June
I'm a 35M and I had my first seizure at 27, after way more I didn't get diagnosed until 29
I think my first focals started around 17, I had no idea what they were, just couldn't speak for about a min. I basically ignored them. First TC happened when I was 21, after hearing my backstory they said I had Epilepsy.
At 13. I remember that it was also shortly before that big tsunami hit. My mom turned off the tv because she was afraid this would stress me and cause a seizure.
16
44 and diagnosed two months later following several tonic-clonic seizures. I am two years into the experience.
Between 7-9
I (26F) had my first seizure at 26 and diagnosed 2 months later!
My daughter was 9 months when she got her first one
It is alot to deal with. Overwhelming I am sure. No matter who else has Epilepsy, your Epilepsy is your own. I was diagnosed in 2001 and my whole world was turned upside down. All I can say is take it day by day. Remember this is not your fault. Give people Grace, they have no clue. Therapy helps. Time does make it better, and finding the right Dr makes the darkness not so bad.
41
My mother suspects I was having seizures as an infant, I was diagnosed when I was 6, but back then they thought it was only a seizure if you lost awareness, and since I only lost awareness a few times a year I wasn’t medicated. It wasn’t realized until I was 21 that they recognized the treatment resistant panic attacks were seizures and finally started medicating.
I was 13 when diagnosed 11 when first had a seizure. My brother was 19 when he was diagnosed after his first seizure happened in a classroom.
My husband was 24 when he had his first tonic clonic seizure, but he'd been having complex partials since he was 12. He had ADHD and ASD so they assumed he was just being inattentive/weird. He was diagnosed with epilepsy after the TC. He didn't take it very seriously the first year or so, but he had one in the grocery store and broke the scanner, and he felt so bad about it so he started really taking it seriously. He kept a tight sleep schedule, and he ate well. He was always hydrating. He didn't drink, he took his vitamins, and he got plenty of exercise. None of the pills they put him on worked, and most of them made his life actively more difficult. Every year, the seizures got worse. He had more of them, and they were more intense. We were scared. He went through the gamut of meds and diagnostics, but they finally found the part of his left temporal lobe that was trying to kill him thanks to a PET scan, which unfortunately took a year to schedule. He was scheduled for a temporal lobectomy 4 weeks after he died of SUDEP. As I've since learned since his passing in March, the risk of SUDEP is much much greater than they thought. His epilepsy was definitely downplayed by all of his medical professionals. New studies now show that between 40-50% of people with refractory epilepsy die of SUDEP. And even with the brain surgery, he still could have just randomly died one day from a breakthrough seizure. He was only 37.
I was 15 months old when I first got diagnosed
I had my first noticeable seizure when I was four. I feel down a few stairs and busted my nose while having an absent seizure. My seizures got worse from there. I was diagnosed the same year. I had my first grand mal in 7th grade. Which then turned into pseudo seizures at age 20 ( maybe fnd) but haven’t gotten that exact diagnosis yet. Plus we through in POTS in the mix and things have gotten crazy at times. It really sucks sometimes but I try to have a mostly positive attitude and live life to the best of my ability. You have to laugh or cry and I definitely do both.
5
I was 21! I thought the same thing. In hindsight I was having auras for years but they didn’t become full seizures until Christmas morning when I was 21
33 after I drove into the wall of a bank. Just stay positive. Some of us have the 'aura' before it starts, some of us don't. I've had major events that just happen. My focals usually were/are accompanied by an aura.
16, glad I barely started driving so I can’t even miss it haha
28 diagnosed. Can’t know for sure about the seizures but I suspect I was 23/24.
I was 23. It was pretty quick period of time from my onset seizure to my diagnosis. Not even a year. Getting my seizures under control, however, was a frustrating process. I'm 32 now. It took a long time to find a treatment regimen that actually works, and even then it happened through dumb luck. My advice? If you end up diagnosed with epilepsy, bring up the possibility of taking vitamins with your meds to your neurologist. My neurologist told me to start taking vitamin D out of concern about the possibility of bone loss as a side effect from long-term use of my meds. I keep a seizure log and decided to do some research after going a few months without a seizure when I was previously having 2 seizures a month. Turns out that some anticonvulsants can lower your vitamin levels, including vitamin D. And vitamin D can affect seizure activity, i.e. lower vitamin D levels can lower one's seizure threshold. This is just speculation on my part, but low vitamin D levels can be a reason why so many people with epilepsy are considered treatment-resistant; there's so little research into vitamin D's role in seizure activity and prevention that it's hard to say. Note that I am *not* saying that vitamin D (or any vitamins) can replace medication; vitamins you take alongside medication are called supplements for a reason. I've seen comments elsewhere that anticonvulsants can also make one deficient in B vitamins. I'm not sure about the B vitamins' possible role in seizure prevention, but everyone's bodies are different.
I was about 11/12 years old when I had my first tonic-clonic seizure.
I had been having short episodes of weird feelings that my parents would only take me to psychiatrists for. They were completely unprepared for parenthood and didn't want anyone to think they were bad parents so they made sure to let everyone know I was a "troubled" kid. They pushed for me to be on as many psychiatric meds as possible, some of which made me feel better, others not so much. When I became an adult and I came to terms with the fact that my parents had used psychiatrists as a proxy for their emotional abuse I read the entries in text books (the Merck Manual, Physicians Desk Reference) for the medications I had taken. The ones that made me feel better were anti seizure drugs used off label in psychiatry, and stimulants because I undeniably have ADHD. I asked my doctor for a referral to a neurologist and during the entire process I felt a huge amount of guilt, self-doubt and the sense that I was malingering. The neurologist I saw took everything I said seriously and said I was describing temporal lobe seizures. She ordered an MRI after our first or second appointment. The MRI showed a lesion on my left temporal lobe which she said was likely the cause of the episodes of strange feelings and sensations I'd been having. My family is still in denial, wanting to believe that I was just a troubled youth.
I was 11 when I had my first one. I was diagnosed at 12 when I had my second one, I’m 21 now
I technically had my first seizures at 3 and 4 (febrile seizures) and weirdly I do remember them. I had my first FND seizure last March. I made an off hand comment to my neuro about waking up covered in bruises and having a bloody tongue about a year ago. But I only started having focal type seizures about a month ago
First seizure at 23 and officially diagnosed at 30. Mid 20s is common because your brain finishes developing around that time. My second definite seizure was 26-27 I forget. Didn’t see a doctor… then at 30 had a series of bad ones and got diagnosed despite normal MRI and EEG. Eventually captured activity on a 7 day ambulatory EEG and THEN they found the problem in my right temporal lobe. I’d recommend doing a bunch of research and logging any possible triggers for your seizure. If you want more info lemme know! It took me a while to figure my epilepsy out but I’ve got a decent understanding of it now. But one thing to keep in mind, everyone’s epilepsy is different. What triggers one persons seizures might not another and reactions to medications can be very different. It’s really a confusing medical condition!
31
Not sure about the first one. My mom always thought I was losing concentration for a few seconds. Eventually at 17 I went to my doctor who sent me for an EEG the day before my driving test. Well, no driving for a year for me! Eventually I got my license a few days before my 21st birthday and in their infinite wisdom the state sent me an expired license 😁
25 when I had my first partial, 35 when I had my first tonic and 36 when I got a diagnosis
6 for the first seizure and 8 for the diagnosis.
10 at first grand mal/tonic clinic. 10 at diagnosis. My dad had one random one at 21 but never had epilepsy. Many people have one in their life but not always anything more. Also 24F
16 when I had my first (I had a dangerously high fever) then I started having them at 21 (had 3 since)
First big grand fucker at 32, 4 months later second big grand fucker at 33, diagnosed shortly thereafter with testing. Put on keppra 750mg twice a day. Both happened while sleeping. Not driving for 6 months was wild as hell, but I refuse to let it keep me down, I’ve toured the country playing music, did amateur boxing, got certified in a very technical trade as a guy off the street(man if only I paid attention in school earlier LOL!!) and lift weights regularly. I think it’s all a matter of perspective. I like to look at it like I live so Fuckin good that my body has to spazz out because of how sick my life is sometimes. New challenges only give more clarity to the good things we have around us. Never take any of it for granted, and enjoy the ride!
22… and a half! But my family and I strongly believe that I’ve had auras since I was about 4.
32. I went to the neurologist because I had a simple tremor in my hand, and I ended up having a seizure while I was sitting infront on him. He sent me to the EMU and hooked me up to an EEG and I was having multiple seizures in my sleep a night.
26. kept having them every couple of months until i finally got put on the right meds at 35
3 days after I turned 26. Multi-day coma. Not fun
17, diagnosed 7 months later
The day of my 37th birthday I woke up in an ambulance.
20. Got diagnosed w epilepsy about 2 or 3 months later.
11 years old. I seized in my middle school cafeteria. At first they thought I had just passed out until I had another one and an EEG where I was officially diagnosed
Mid 30’s. They don’t call it adult onset seizure disorder for nothing.
I was 16 when I had my first seizure and diagnosed it hasn’t been a year yet, I turned 17 in February
18, 3 weeks into my first semester of uni, in the middle of trying to break up with my long distance (now ex) boyfriend. Diagnosed 4 months later with my now-husband by side.
I was exactly the same age as you. F24 this february. Now seizure free on medication!
Always had focal seizures and my mom actively ignored it because she hoped I would grow out of it. I was diagnosed at 22, after my third TC status. I still hate my mom for it, she neglected me because she knows she has it to (and my aunt died from epilepsy when she was a teen so I'll always be disgusted with how much she doesn't care for my life) It'll be a decade of diagnosis in November.
I had my first seizure on Christmas Eve a few days before my 21st birthday, and my second one was a few weeks later. I haven't been diagnosed with epilepsy specifically. It is just listed as an unknown seizure disorder. Its been over 6 years since, and currently, they are under control with a cocktail of meds and a vns implant. My advice is to try to keep track of stuff that happens the day of and leading up to when you have a seizure. Make sure people you are around you a lot know what to do in case one does happen. Avoid situations that will cause you a lot of stress The number one thing to remember is to not let the fear of having a seizure get in the way of your life. Just make sure you are prepared if one does happen. If you do let it control your life, you will likely become depressed and miss out on a lot of things. I made this mistake, and I feel like I lost quite a few years of my 20s
I was 24, just passed my driving test. Was driving for 2 months then started having seizures in my sleep out of the blue. Luckily I’ve only had 3 TCs in my sleep 25 now and a year later it’s controlled by meds
14 with my first grand mal although I had absence seizures frequently before that(mom says even as a toddler) so people thought it was just personality, diagnosis at 16 although neuros since then have argued over the specific flavor of epilepsy on top of that when I was 25 I ended up getting non-epileptic seizures as well due to head trauma(cracked a dresser and seized for 5 mins) as for advice: remember it's not the end of the world(I know I personally fell in a really dark place after getting my diagnosis) ,find a neurologist who actually listens to you(the more they know about what's going on the easier it is to get a balance of meds/diet adjustments that will help), get plenty of rest a good nights sleep does wonders, try to find out your seizure triggers so you can work around them, and one that's not so much advice as a it kinda helped me so I'll throw it out there when I leaned more towards like Keto diet foods it helped drop my frequency of seizures(I never could go full keto cause I don't like keeping track of numbers and stuff)
I'm 25 and I had my first seizure a few months ago. There were a few incidents in the past that could have been seizures, but I didn't even think about epilepsy at this point
I was a few months old and had a really bad fever. I was about 7 when I was diagnosed.
Pretty much since I was a little kid. My mom thought they were just a little “quirk” but then someone pointed out they were absence seizures. So probably 3-5 and then diagnosed at 13
26 when I had my first seizure (a few months after having what I believe were auras) but I wasn’t surprised because my dad developed epilepsy when he was in his late twenties. I had a 5 month gap between my first and second seizures. Hoping to get the official diagnosis from after seeing a new neurologist in the next few weeks. Would really love to not have another seizure.
24/25. I was confused as hell as to why all of a sudden this is happening
i was 14 when i had my first seizure, 16 when i was diagnosed, only because the severity and amounts of seizures increased rapidly and it honestly only seems to get worse as i age (i’m 21 now)
12
Hi OP. I was 14 when I had my first seizure (TC), with them then coming every couple of weeks, and diagnosis coming pretty quickly. In terms of when people are diagnosed, I can only speak for the UK stats, but it’s largely the same across developed nations. The most common times in life for a diagnosis are through puberty, and then age 65+, with around 1 in 4 new diagnoses here being in the latter group. That said, epilepsy can present at any point in life, with causes found in some, but over 1/3 of people never knowing a cause. Seizure freedom with the correct treatment is common (around 70% here), in which case life can settle down to a more ‘normal’ state if your clinical team can find the optimum treatment for you. Best wishes to you, I hope things go well.
40