u/0____0_0

It just hit me that next week marks 25 years since I was formally diagnosed with and started taking medication for epilepsy at 11 years old.

What a long strange journey it’s been, but I realize that when I look back on the last 25 years it’s far from the thing that’s defined me or my life. No doubt it’s influenced who I’ve become and the life I’ve created, but it’s not me.

So keep on pushing forward folks. No matter how it seems in the moment, remember your life is far more than Epilepsy.

Does anyone have ones they'd recommend? I know who is big in research from articles but am not sure who else is out there.

Thinking about thinking about a second opinion.

I'm less active here than I was a few years back when I got my RNS (different user name). Back then, though, being able to connect with other people going through the same stuff was so valuable.

Recently I've been going through some stuff, so I came back. Now I see tons of accounts leaving vague or unhelpful comments on posts. Accounts with no post/comment history or a hidden one.

It's not just this sub. It's all of Reddit that's become filled with karma-farming bots. But it makes me particularly sad to think this sub will go the way of the rest of Reddit, because it was really valuable at a time in my life that would have been even more isolating. And I wish others still had access to that.

(want to make sure to give kudos to the mods who are doing their best I'm sure to filter this out)

I have epilepsy and while it’s serious it’s not prevented me from objectively having a very good life. Personally and professionally.

Now my wife and I are considering having kids. And in the process of exploring that I’ve discovered my epilepsy is genetic (rare GATOR1-related gene).

There’s a 50% chance I’d pass the gene on and even if I do it’s uncertain they’d have seizures.

Given the fairly low probability they’d have epilepsy (something like a 30% chance) I don’t think this stops me from wanting to have kids. But I do wonder how I’d handle it if they did have epilepsy and it was even harder to control or more debilitating than mine.

Has anyone experienced this? What’s it been like?

Has anyone gotten euphoria on Xcopri? What was that like?

Does anyone here take Xcopri with stimulants to counteract the drowsiness?

A few years ago, when I expressed concern about one day needing to to try my psyc said not to worry, he’d just counteract the drowsiness by upping my stimulants a whole lot (I guess increasing my vyvanse or adding Modafinil)

Now the day I need to try Xcopri is coming close. Wondering if that’s seriously an option abd how it’s went for others.

DOI:  10.1055/a-2731-4858

https://www.thieme-connect.com/products/ejournals/abstract/10.1055/a-2731-4858#publication-history-container

My marriage is in an unhappy place. For years my wife has been depressed and struggled to meaningfully communicate her feelings or talk about things, yet expected me to emotionally support her in a way I’m just not sure I can any more. (Yes, I’ve suggested couples therapy, but she refuses to go).

My seizures are nocturnal and not fully controlled, but the clinical ones aren’t frequent and even when they occur my RNS stops them before she can administer a rescue me or anything.

I’m starting to question if it’s worth staying in the relationship even though it’s well established that one of greatest risks for SUDEP is living and sleeping alone.

Anyone else been in a similar situation? How’d you balance the risk of death against life in an unhappy relationship?

Has anyone here actually gotten through the titration and adjustment period on Xcopri only to find life better on the other side?

Not just seizure control, but memory and ability to get work done and engage socially