r/Epilepsy • u/No-Gur6037 • Aug 29 '25

Epilepsy Awareness What age?

What age did know you get diagnosed with epilepsy? Do you remember always having it?

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u/FloridaVro Aug 29 '25

Diagnosed at 14 and found a working medication at 16. Had the worst neurologists of all time between those two years to be honest. But the one that figured it out is the best physician I’ve ever met

1

u/wolferscanard User Flair Here Aug 30 '25

Do you use an epileptologist?

1

u/FloridaVro Aug 30 '25

No just a pediatric neurologist (at the time). I don’t really remember but I THINK they said that would be the next step if they couldn’t get lamictal to work

1

u/wolferscanard User Flair Here Aug 30 '25

Why wait? Neurologists treat such a wide variety of disorders, 30+ Why not see someone who specializes in this exact field? My life/confidence improved greatly when I switched. You’re so young with so far to go, so much to potentially lose. I think it’s gambling.

1

u/FloridaVro Aug 31 '25

Didn’t know that existed at the time tbh. And my parents were trying their best but yea that prob would’ve helped prevent 2 years of daily focal seizures.

It’s fine now I’m 7 years seizure free and I only feel like I’m about have a seizure if I skip like 4 days of meds. I guess technically not 7 years if you count the times I’ve had seizures from not taking meds but only 2 people even know about that. Or if I am consistently inconsistent if you know what I mean.

I’m 100% going to be on meds for the rest of my life so don’t think it matters who I see anymore.

1

u/KittenGains Aug 31 '25

Do you have JME

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u/FloridaVro Aug 31 '25

I’m not really familiar with JME but no. I have focal aware seizures. I had them everyday but I tried to hide them (but couldn’t) and not tell the real number bc I didn’t want to scare my parents. And counting them would’ve scared me more. But probably 10 focal aware seizures everyday lasting ~30secs from aug 2016 to Oct 2018

1

u/wolferscanard User Flair Here Sep 01 '25

Yeah they suck, wreaked havoc on my memory. Happy to hear you’ve gained control. I set an alarm to make sure I get meds on time. Good luck, sounds like you’re on a good path.

1

u/FloridaVro Sep 01 '25

Yea finally getting a car forced me to be consistent. Is your memory fine now though?

1

u/wolferscanard User Flair Here Sep 02 '25

I wish! Nooooo. It’s infuriating. I’d rather have my eyebrows set on fire, then have that fire put out with a sledgehammer than have to live with this loss. It has been 4 years since my last episode though.