Anyone here with epilepsy?

[Helpm3]

I have somewhat uncontrolled epilepsy, recently under control with a combination of topiramate and lamotrigine but with the odd tonic clonic/grand mal seizure. I've tried levetiracetam. I've tried lamotrigine on its own. Neither worked, although I was taking levetiracetam a few years ago when I was a teenager and more careless with my medication, so I'm thinking I could maybe try it again? I've been to a specialist hospital, where they told me not to be sexually active while on topiramate as it creates babies with physical deformities and learning disabilities; however, when I told my regular neurologist that I wanted to change my medication so I could think about getting pregnant safely, he told me that women have safe pregnancies on topiramate, and he doesnt seem willing to discuss this topic any further, so I'm quite confused.

I'd really love to experience getting pregnant and have life grow inside of me. It's something I was always thankful to be a woman for, so to be in this position where it feels like I can't have a child unless I want it to be disabled makes me cry. I've never actually spoken to other people with epilepsy, definitely not those who have already begun the journey of pregnancy or who have successfully had healthy children, so that's why I've come to this website.

Is there anyone here with epilepsy who is pregnant or who has had a child? Were you on topiramate? Or on some other medication? Was the child healthy? Did anything go wrong? Do you think I have the chance to get pregnant with epilepsy?

I was diagnosed with epilepsy after the birth of my first baby. Was prescribed lamotrigine. Minimal dosage.
Got pregnant three years later and Dr told me it was ok to take the medication throughout the pregnancy. Had a normal pregnancy and DD was absolutely fine. That was 18years ago and she's healthy and thriving.
Wishing you the best x

I think sodium valporate is the worst for birth defects. 10% of pregnancies if I recall correctly. Maybe ask a pharmacist. You might have to have your pregnancy jointly managed by an obstetrician and neurologist. I'm not sure how that works.

I took lamotrigine during my pregnancy with DS, and he is very healthy. Lamotrigine is regarded as a safer drug for women of childbearing age. However, the body absorbs it differently during pregnancy, so the dose has to be monitored.

I changed neurologist at the start of my pregnancy, because the one I had gave me bad advice about medication - and tried to move me to a drug associated with birth defects. The GP and I both knew it wasn’t safe, and I changed to the Walton Centre (a specialist neurology hospital in Liverpool) where I had fantastic care. You say that you have been to a specialist hospital, and they gave you advice which your current neurologist is contradicting. Have you got the option of going back to the specialist hospital? I would assume that their advice would be most accurate? Perhaps they could do a medication review with you now you know you’d like to explore this? I know you’d love to be pregnant, but it’s so important that you are safe if your epilepsy isn’t fully controlled.

Do you get on well with your GP? Could you ask their advice?

Best of luck OP.