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Epilepsy Action
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Pregnancy and epilepsy

Looking for anyone with a similar experience!

I have a son who is turning 4 next week - I had pre eclampsia which turned to eclampsia in the end stages of my pregnancy and ended up taking a seizure mid labour. 7 weeks on from his birth I had a seizure (tonic clonic) and was put onto epilim. I was then taken off epilim as it is not good for child bearing women. I then got put onto Keppra, which I ended up having two major tonic clinic seizures in 2016. They then put my onto Levetiracetam, which I was on for about 8 months but kept getting "electric" moments. So I then put myself back onto epilim as I knew this had previously worked well in the past.

My partner and I would really love to have another child next year, starting to try in October 2018 (after holiday!!). I've been told I need to be changed to another medication before I can try, or possibly try and come off medication altogether. I would need to try this 6 months beforehand and then see what happens. Has anyone had a similar experience? I'm so nervous but we would just love to have another so badly!

Any advice is appreciated! Thankyou x

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I also have tried Keppra and leveritacetem (lamotrigine) and neither worked for me. I am 31 and have been taking Epilim since I was 21. Immediately I went from regular seizures every couple of weeks to none.

In my mid-twenties when my husband and I were engaged and I hadn’t had a seizure in several years I started reducing my medication in readiness to start trying for a baby whenever we wanted to. I didn’t have another seizure till I was 28. Unfortunately we were literally just about to start trying for a baby!!! I then had another not long after. After consulting with my neurologist we decided that I would stay at the dose of Epilim I was on (half the full dose I had reduced from) as by then I’d been on it a couple of years and only had 2 seizures. Unfortunately this was also bang on the time that the last big report on Epilim was published, showing it to be even more dangerous in pregnancy than previously thought. But again, after talking to the consultant we decided we didn’t have much other option.

Fast forward to now and I have a beautiful healthy 19 month old after only having 2 tonic clinics during pregnancy. We know we have been really lucky and have been through all the anxiety again now we are also going to try for a second. Where we now live (Sheffield) there is a joint neurology/obstetrics clinic which we went to a few weeks ago. It was brilliant and I’d recommend getting to one of you can (I know they run them in other major hospitals too). The neurologist talked things through with us and came to the conclusion that our only real options were reduced dose Epilim again or lamotrigine at a higher dose than I’d taken previously. Since I also had side effects on that, we’ve decided to go for the Epilim and literally today is the day I take the first step towards my next pregnancy by reducing my dosage from 1600mg to 1500mg! I want to get as low as 800mg again.

Good luck with everything,

Amy xx

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