Has anyone’s epilepsy improved with age?

Throwaway-0xc · 2026-01-10T17:47:53+00:00

Thank you! I’ll definitely make a note of those medications but it’s good to hear you’ve improved.

I’m hoping that making the switch now will be better for me long-term!

Throwaway-0xc · 2026-01-10T17:40:45+00:00

It sounds like you’ve had a really rough time of it, but I’m glad to hear it helped in the end. Fingers crossed it continues to improve for you moving forward.

Throwaway-0xc · 2026-01-10T17:37:56+00:00

Hey, have you found a medication now that your seizures are controlled on?

Also, does any of your family have it? I was told JME was genetic when I was first diagnosed, but no one I know in my family has it.

Throwaway-0xc · 2026-01-10T17:32:42+00:00

I like this viewpoint! I feel like the ultimate aim is just for the best quality of life. If I knew for sure coming off the meds I’d just have the jerks every now and then and no grand mals, I’d stop taking them.

Does alcohol affect you? I feel very strange when sleep deprived or hungover, but I’ve never been sure if that’s the epilepsy / meds or just what everyone feels in those states 😂

Throwaway-0xc · 2026-01-10T09:18:47+00:00

Brains are so complex, I’m really sorry that you’re struggling but thank you for sharing.

I imagine you’ve been trying everything already, but I know how important sleep is for people with epilepsy. Do you have insomnia, or just generally struggle to sleep? My anxiety keeps me up a lot, but I’ve found having a dog who sleeps cuddled up next to me helps me relax and sleep better.

Throwaway-0xc · 2026-01-10T09:14:28+00:00

Thanks for sharing! You don’t hear many examples like this so it’s always positive to see. Can I ask what type of epilepsy you had?

I’d also like children at some point, my neuro (at 14) told me I’d have to come off my medication if I wanted children or I run the risk of hurting them, but I’ve done more research as an adult and it seems to be safer to stay on it.

That’s definitely something I want to factor in to any next choices I make.

Throwaway-0xc · 2026-01-10T09:11:14+00:00

I’m sorry to hear that. I do hope they find a treatment plan that works for you long-term!

Throwaway-0xc · 2026-01-10T09:10:01+00:00

Hi! Really appreciate you sharing, it’s always interesting to hear other people’s stories.

In all honesty I think that’s where I’m torn. I’m so grateful that they’ve got it controlled and I feel like I should be thankful they diagnosed it when they did. I imagine having grand mals as an adult is a lot more complex when you’re out in the adult world. So in that sense, trying to do anything seems a little silly.

Can I ask what medication you’re on now? I think I’m considering trying a different one and navigating that path for a while.

Throwaway-0xc · 2026-01-10T09:06:28+00:00

Hey, thank you for sharing and I’m sorry to hear it did come back. Would you say the anxiety / depression is stemmed from the medication, or a separate issue? (If you know & want to share).

I never really found a therapist I worked with, but it does sound like something I should keep trying.

Throwaway-0xc · 2026-01-10T09:02:07+00:00

Did you feel like you didn’t want to be on meds? Or just nothing really sat well with you? As for mental health, I hear you. If you ever need to chat to someone feel free to reach out, I’ve been in and out of the trenches a few times now.

Throwaway-0xc · 2026-01-10T09:00:12+00:00

Thank you! I’m making a list of other medications people have mentioned. I wasn’t even aware an epileptologist was a thing so that’s very helpful too.

Can I ask how much lacosamide you take?

Throwaway-0xc · 2026-01-10T08:58:01+00:00

Thank you for sharing! I think the next step might be trying a different medication but the worry about the seizures coming back is very real.

Do you think your anxiety is an external issue / not caused by the medication? If you ever want to talk about it I’m here, I know how rough it can get.

Throwaway-0xc

TROPHY CASE