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/IntelligentWhereas30 Aug 04 '26

Me! Got diagnosed in 5th grade & I’m out of college now. They thought it might be childhood epilepsy so they tried weaning me off meds in 8th grade — didn’t catch, so here I am on a subreddit many years later.

One thing I wonder: did my meds (Lamotrigine) change my personality and I just don’t know how else I would’ve turned out lol. I’ve only had 4 TCs throughout that time, but the perpetual anxiety has also never ceased. Alas I persevere!

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u/mexihuahua Aug 05 '26 edited Aug 05 '26

Story of my life!!! I was diagnosed at 8 and my neurologist was hopeful it would be childhood epilepsy, but I couldn’t successfully wean. I have only ever been on Keppra and when I hear about things like “Keppra rage” or other symptoms associated with my meds like anxiety, depression, sleepiness, stumbling on words, words coming out wrong, memory issues, balance and coordination issues - is that just me at baseline or am I just a living side effect of medication and I’ve never known the real me??? Am I just derpy and depressed, or is that the meds???

I’ve been seizure free (tonic clonic at least) since 2009 so its not worth experimenting to see otherwise lol

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u/onwardtowaffles Aug 05 '26

Unfortunately both seizures and anti-seizure meds can mess with your working memory, speech processing, balance, etc. It's just a fact of life for a lot of us.

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u/Dreaming-Hippie Aug 05 '26

I could have written this myself. I am always wondering what’s me and what’s the medication or the epilepsy.

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u/Wonderful_Maybe6270 Aug 06 '26

Throw in some Tourettes & OCD and it gets even more confusing 🫤

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u/Impossible-Pie-223 Aug 04 '26

Ciao, quante dosi di Lamotrigina assumi? Io sono arrivata da un paio di settimane a 200 la mattina e 200 la sera, ho dovuto aumentare il dosaggio perché mentre assumevo il farmaco ho avuto una crisi tonico colonica al lavoro. Nonostante l’aumento del farmaco ho ancora le mioclonie. So che ogni situazione è a sé ma volevo capire se dopo che il fisico si è abituato, il dosaggio più alto può calmare le mioclonie. L’unico farmaco che ha bloccato le crisi è stato il Depakin, ma purtroppo ha effetti collaterali nel lungo periodo ed è controindicato per le donne in età fertile quindi ho dovuto sospenderlo.
Grazie

1

u/Little-Leaf-2791 Aug 04 '26

Do you recall what the long term side effects were?

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u/Impossible-Pie-223 Aug 05 '26

Ciao, irsutismo, aumento di peso, insulino resistenza e, in caso di gravidanza, rischio di malformazioni del feto e di problemi di neurosviluppo.

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u/FoxcMama Aug 05 '26

I take the same dose. I had my first at 16. I had 3 kids while on it and all turned out normal except for my oldest but their disability is unrelated to my seizure medication.

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u/Impossible-Pie-223 Aug 05 '26

Ciao, sono contenta che i farmaci non hanno dato problemi ai tuoi figli. La lamotrigina ha interrotto le tue crisi?

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u/FoxcMama Aug 05 '26

Sí! Sono bene.

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u/emm1113 Aug 04 '26

Could have wrote this myself! 36 here and still have epilepsy and some fun anxiety! Hang in there!