If you have seizures..did they get worse throughout pregnancy?

[hoohaal]

If you have epilepsy, did you find your seizures got worse throughout pregnancy?

I’ve had seizures since 4 weeks pregnant. I would say they were most frequent around 20 weeks. Had absolutely loads of them.

I’m 28 weeks now and have had maybe 1 a month. They’ve started again this morning and I’m worried they’re going to kick off in the third trimester.

Hoping that’s not the case.

My daughter has epilepsy and is currently 20 weeks pregnant. She has been doing good so far but it’s definitely a worry. Her epilepsy is quite well controlled now after finding the right medication. How well controlled was yours before becoming pregnant? She is having regular blood tests incase her medication needs adjusting. Are you having regular blood tests?

Mine was completely controlled for 4 years before this. As soon as I got pregnant, they started again.

They are hesitant to increase my medication further as I’m having awareness seizures rather than tonic clonic. If I have a tonic seizure, then they will add in a new medication. I have had tonic clonic seizures in a previous pregnancy, so that’s a big worry for me but so far none of those.

I’m hoping that I’m somehow over the worst of it.

This is my daughters first pregnancy so we were uncertain on what to expect. I really hope your through the worst of it but absolutely understand it’s scary feeling on edge and the worry of wondering if it’s gonna happen again. I hope your feeling looked after with your medical team/consultant.

I haven’t had a lot to do with my neurologist but my epilepsy nurse rings often.

She is good, but after I rant to her about everything she says ‘it sounds like you’re doing really well’ 🤣🤣🤣. Then she writes to the Dr telling them I’m doing well. So confused hahah.

I hope your Daughter’s pregnancy goes smoothly x

OP is your neurologist fully aware of your seizure frequency changing drastically in pregnancy? Normally this would be cause for medication adjustment. Lots of changes in the body during pregnancy lead to changes in drug levels, but also can lower seizure thresholds. That’s likely to continue - labour and early postpartum can often be the worst time. Do you have an obstetrician involved?
wishing you all the best and I hope everything does settle for you.

@TenThousandSpoons00sorry, I didn’t explain very well!! But yes, neurologist is aware of all of the awareness seizures. He has increased my Lamotrigine quite a few times and then told me he couldn’t go higher than 250mg 2 x a day because while the medication is ‘low risk, it’s not no risk’. So it is what it is, but I wasn’t chuffed about it. Seizures have improved slightly since increasing to 250, but I feel like they could probably stop if he upped it a bit more.

I’m dreading the potential seizures after having the baby. I’m opting for a C section as I don’t want to risk a seizure during labour etc. I had awful seizures for about a year after my last pregnancy, so that should be fun. They have said they will increase meds further and introduce new ones if I continue having them after the baby is here.

I would just rather have the increased meds now to prevent it happening rather than having seizures and then taking action. I’ve read online that people had their Lamotrigine increased way more than that, but for whatever reason he doesn’t feel I need it?

I see. You’re definitely quite far from the maximum dose. Is he worried about risk of the medication for baby, or for you? If it’s about baby then he should perhaps reconsider (really low/no increased risks from this med, more so from the seizures themselves). Perhaps your obstetrician can talk directly with him if that’s the case.
if it’s about side effects for you then that’s a little different, I wouldn’t presume to be a neurologist myself so would have to defer on that one!! But I’ve known lots of people on higher doses in pregnancy, with then a taper down again after birth.