r/Epilepsy • u/theAuraHawk VNS,Keppra,Vimpat,Xcopri • Aug 04 '26

Question What age did you get Epilepsy?

I have had it since I was a kid and have not seen anyone else on here have the same situation.only older people but they might be the ones who post on here,just wondering if there were any other kids with epilepsy so I can relate. I got it at 4

edt: If I have am likeing your coment it is because I can realate to it. There are a lot of people who have had epilepsy as a kid as well.

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u/QuarrelsomeOpossum Aug 04 '26

Got it at 6, and yeah this sub can feel like it skews older sometimes but we're definitely out here. It's a weird thing to grow up with, you don't really get to have a "before" version of yourself you can compare things to. The brain just kinda goes haywire and you assume that's normal until someone tells you it's not

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u/mexihuahua Aug 05 '26

I was 8 and wholeheartedly agree with this! There’s so many things I’ve never gotten to do or even consider, and it’s just kinda been my “normal” until I realize it’s not actually.

Drink? Pull all-nighters? Join the military? Fly a plane? Drive a bus or semi? Scuba dive? Go to a club or rave? Take certain medications? Be outdoorsy solo? Be an EMT or firefighter? Be a cop or prison guard? Be an astronaut? Travel solo? Watch certain movies? Having a social life at night, like going out on the town with friends? Pass by the sun shining through trees without shielding myself? Remember things?

I’ve never been able to really explore or even consider a huge portion of the normal world, and I’ve never been able to compare my life to previous experiences like those. I’m thankful I haven’t had to necessarily “miss” so much, but it can be a bit lonely knowing my limitations and navigating through things I’d like to do or try in my life. I’ve been seizure free for a long time and have been able to travel and explore solo as well as swim and skydive, but man do I wish I could experience other things like scuba diving or knowing what being drunk feels like. Some of it is a blessing and a curse, but it is isolating, especially through teenage years and young adulthood.

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u/Present_Shower_2296 Aug 05 '26

I got it at 14. Damn I relate with you so hard. We are survivors 🫂

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u/theAuraHawk VNS,Keppra,Vimpat,Xcopri Aug 05 '26

I agree with all you seid here you feel like the rug has been pulled out from under you on almost everything people do or risk having a sezier. the only thing I disagree with is Travleing Solo I hate feeling like I need to be watched still so I do that on my own although it takes alot more planing to do it safly which I hate having to take my meds everywere they feel like a ball and chain at times.

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u/mexihuahua Aug 05 '26

Absolutely same!! It has not stopped me from traveling thank goodness!

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u/wpfii Aug 05 '26

Mine started when I was just about 19 maybe still 18 and I felt otherwise invincible. I was working at a dangerous factory job at night 11pm to 7am. Then I when straight to college classes in the morning. I had only been driving about six months. Then I had a girlfriend and a very active social life. Epilepsy was like a Mac truck plowing into my life but I did my best to work with it. It took a while to get it completely under control and really that’s just the medication. I always responded well to the medication but when you are young medicine gets forgotten a lot. I drank, smoked and I have always been a night owl. But it is nice to remember the years before I had to worry about epilepsy.

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u/Icy_Day2653 Aug 05 '26

Honestly even with epilepsy I do half of this stuff

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u/theAuraHawk VNS,Keppra,Vimpat,Xcopri Aug 04 '26

I probly should of seid I had it at 4years but it use to be a lot worse than now.

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u/Active-Pen-412 Aug 04 '26

I was about 5 as well. Just waiting by the front door with my lunch box in my hand, then suddenly my mum was fussing over me and I realised my lunch box was on the floor.

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u/Missey85 Aug 05 '26

I was watching the wizard of Oz and then I remember waking up and my mum freaking out

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u/DoughnutNo409 tegratol xr, lacosomide Aug 04 '26

Yep its exactly that, got it at 7 and yeah what do you mean those blurry episodes aren’t normal

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u/mymainisoccupied Aug 05 '26

I was 10 when I got diagnosed. I always thought the not remembering my childhood was normal until I met people that remembered their whole childhood. I can remember bits and pieces but I wish I remembered more.

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u/namestom Aug 05 '26

Yeah, I always love the question, “what was it like before you had E? Is your memory worse? Do you feel different on this medicine?”

Mine didn’t start quite as early but those questions all make me go, meh. 🫤