Terrified of pregnancy and epilepsy
Terrified about pregnancy and epilepsy (on Aptiom), could use some real experiences
I have focal epilepsy (complex partial seizures), diagnosed formally a few years ago after years of it going unrecognized. I’m currently on Aptiom (eslicarbazepine), 1000mg daily, and it’s the first medication that’s actually kept me stable , I went through Keppra, Zonegran, and Spritam first, and none of those worked for me. My last seizure was nocturnal, several months ago. I’m not planning a pregnancy imminently, but it’s something I think about constantly, and honestly it scares me more than almost anything else about my future.
A few specific fears I’m sitting with, and I don’t even know which one to prioritize:
Seizure control during pregnancy — Does pregnancy commonly destabilize seizure control even in people who’ve been doing well? I finally found a medication that works after failing three others, and the idea of losing that stability terrifies me.
Medication safety — Is Aptiom/eslicarbazepine considered safer or riskier than other options during pregnancy? Would I likely need to switch meds before or during pregnancy, and if so, how do you even manage the risk of switching away from something that’s finally working?
Risk to the baby — Beyond birth defect risk from the medication itself, how much does seizure activity during pregnancy actually endanger the baby directly?
Genetic risk — Is there a meaningful chance I’d pass epilepsy on, or is that more dependent on the specific cause/type?
I know a lot of this will eventually be a conversation with my neurologist, but right now I mostly want to hear from people who’ve actually been through it ,on Aptiom specifically if that’s you, but really anyone with epilepsy who’s navigated pregnancy or is thinking about it like I am. Did the reality end up better or worse than what you built up in your head beforehand?