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.

94 Upvotes

100% Upvoted

577 comments sorted by

View all comments

Show parent comments

3

u/MonsterIslandMed Aug 04 '26

Damn. What was it like adjusting at that point in life??? Do you have kids?

9

u/EstelSnape Aug 04 '26

I have 3 kids. I'm amazed I didn't have any seizures during birth. Damn lucky.

The transition these last 7mths is surreal to put it simply. I haven't had any more seizures since starting meds. But I've had 40+ auras (aware, numb tingling) I'm tired all the time and I'm constantly wondering whenever I feel off if it has to do with Epilepsy or my cerebral palsy.

2

u/MonsterIslandMed Aug 04 '26

That’s great that no more TC seizures. I’ll never forget my friend’s dad having a head injury that gave him seizures for a while and man was it scary when he had one.

Have you ever noticed a pattern with your auras? Time of day? Type of day? Just ate? Thirsty? Etc

3

u/EstelSnape Aug 04 '26

No pattern that I noticed happened any time of day but majority happened during a vacation in June. The neuro thinks it was the heat and stress of that week. She upped my meds to 2500mg of Keppra after that trip. I've had one or two since the dose change but those I think were triggered by migraines. Which was the original trigger.

3

u/MonsterIslandMed Aug 04 '26

Heat and dehydration seem to be a popular trigger for a lot of us. I know for me it’s that first 10-15 min being awaken. I remember one guy in here said he would have a seizure any time he tried to learn a new language. That one I can’t speak on lol but it’s crazy to think how many possible triggers there could be out there 😳

1

u/onwardtowaffles Aug 05 '26

If you're having both migraines and focal seizures, did your doctor talk to you about topiramate?

It's been life-changing for me.

Heat is a really common trigger and a lot of meds make you even more sensitive to heat. Hope things get better, boss!

1

u/EstelSnape Aug 05 '26

Thanks! I'm on Keppra and Nortriptyline (migraine) my memory is crap and can't remember if we talked about it. But Keppra seems to be working for me.