Epilepsy - did seizures stop after pregnancy?

[ldgso]

If you have epilepsy and had any form of seizures throughout your pregnancy, did you find these stopped after giving birth or not?

I was diagnosed with epilepsy when I was 20 and my seizures had been relatively well controlled the years leading up to my daughter being born - then had 3 seizures the day before she was born at 37 weeks (they got her out the next day just to be safe!) and I haven’t had a single one since - that was 4 years ago. My epilepsy nurse said it’s due to the increased blood volume diluting medication, then naturally that decreases again once you’ve had the baby. I’m currently 16 weeks pregnant again and having fortnightly blood tests to check my medication levels. Assuming you’ve got epilepsy too? Hope you’re doing ok!

Thank you!

I developed epilepsy with my 2nd. One Grand Mal seizure and then lots of awareness seizures for a year after.

I’ve had no seizures for 4 years and then awareness seizures started again as soon as I got pregnant. I’m on top dose of medication and they won’t increase it further & said I may have to accept that these will continue throughout the pregnancy.

I’m so petrified of having a full seizure again, and especially now they’re not controlled.

Pleased to hear that yours stopped as soon as you had the baby. I’m really hoping for the same!

Totally understand you being worried - I’d be terrified too! I must be really lucky as my epilepsy nurse is pretty determined to not let me have any seizures and has said they’ll triple my dose while I’m pregnant if they need to, as long as I drop it back down the moment I give birth. Hopefully you get a bit of a warning when you’re about to get one and can get yourself into a safe position?!

I wonder why my mine isn’t keen to increase my meds further!

Could I ask what dose you take atm? I take 250mg Lamotrigine 2 x daily.

Do you tend to have Grand Mal seizures (or whatever the correct term is for them now. I can’t keep up 🤣). They have been quite dismissive of mine because they’re awareness seizures. Granted they’re nowhere near as dangerous as proper seizures, but they massively affect me and I’m useless for the whole day once I have one. They don’t seem worried that I’ve had a big seizure previously. I just know it’s not going to end well though. No way will I get through 20 more weeks without one.

Fortunately I do have plenty of warning and I can get to the floor etc.

Thanks so much for responding.

I’m on Lamotrigine too - 150mg but they said up to 600 is absolutely fine in pregnancy! Maybe you should push for a review of yours, even a quick google search shows that the nhs guidelines say up to 700mg for a ‘normal dose’.

I usually get ‘focal impaired awareness seizures’ (the constant name changes are ridiculous!) but I have had a couple of tonic clonic ones where I completely lost consciousness, luckily none of those while I was pregnant though. They really shouldn’t be dismissive of any sort of seizure though as any of them can develop into a tonic clonic which can be really dangerous. By sheer luck I happened to be at the hospital at a regular antenatal appointment when I had mine last time and they treated it like a proper emergency, even though they were ‘only’ awareness seizures and rushed me round to the day unit for monitoring. You should push for more support!!