Pregnancy experiences please! :)

Hi,

I am currently trying for a baby. I've had epilepsy for around 20yrs now. It is extremely well controlled with 1000mg Keppra 3x daily and 200mg Lamictal 2x daily and another 100mg Lamictal midday. I've had pre pregnancy counselling with an epilepsy specialist nurse and take prescription dosage of Folic acid daily (and have done for the last 3 months). The nurse said the 2 drugs I'm on are the safest and recommended to be on during pregnancy and breastfeeding which is great. I'm aware a combination of 2 drugs isn't ideal but cannot stop either of them (and was advised it wasn't necessary).

I was just interested to hear about the experiences of other pregnant women who also have epilepsy?

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  • Hi TabbyT

    What an exciting time!

    If you haven’t already you may wish to view our information on epilepsy and having a baby. epilepsy.org.uk/info/women/...

    We also have our “The Pregnancy Diaries” where several women with epilepsy share their pregnancy experiences. You can view this online or contact the helpline and I will post you a copy. epilepsy.org.uk/pregnancy-d...

    As well as HealthUnlocked you could try some of our other services to contact other mums-to-be:

    We have local groups including coffee and chats, forum4e online community, facebook and twitter.

    epilepsy.org.uk/near-me

    forum.epilepsy.org.uk/

    facebook.com/epilepsyaction

    @epilepsyadvice

    If we can be of any more help, please feel free to post a question on here. You can also email helpine@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050.

    Our helpline is open Monday to Friday, 8.30am until 5.30pm.

    Hope all goes well.

    Regards

    Diane

    Epilepsy

    Action Helpline Team

  • Excellent, thanks for the info. I have read a copy of 'The Pregnancy Diaries' and found it a very insightful read. All too often only the negatives and downside of being pregnant and having epilepsy are highlighted, and whilst I know that these are very important factors to think about, it was great to hear some success stories and they made me believe that I can have both epilepsy and a baby!!

    I have to say that my epilepsy specialist nurse is fantastic and I'm very aware of how lucky I am to have such an invaluable resource available to me in my area!

  • Hi Tabby,

    I hope all is going well and you are enjoying the whole process. Try not to get too stressed out if it takes a while to get pregnant. For me, because my periods were very irregular, we found it hard to pinpoint when I was fertile, but in the end used those ovulation tests and got it bang on straight away! But that's not about epilepsy...

    I agree you do very often hear the negatives and especially as I was on epilim chrono (sodium valproate), which is known to be dangerous in pregnancy. However, I was the same as you in that I couldn't come off it or my epilepsy would not be controlled. In my case lamotrigine and keppra had not worked for me, but I was able to control my seizures quite well with a very low dose of epilim. Some people seem to judge you like you've been irresponsible, but we were fully aware of the risks and it took us several years to decide definitely to have a baby and we'd spoken to our fantastic neurologist a lot about it.

    My little boy will be 1 next week and the last couple of years have been filled with happiness. That's not to say they haven't been difficult as well! First of all, don't become too down heartened if you do have seizures whilst pregnant. I had seizures at 22 and 33 weeks. My neurologist explained to me about how by the middle of your pregnancy our blood volume has massively increased (I think by 50%) so your drugs essentially become watered down. We increased my dosage very slightly each time.

    Also, no matter what you do, you will get less sleep than normal in those first few months. For me, that's the biggest trigger of seizures. I had another one just 3 days after giving birth while my body was still recovering from the labour and the last time I had any seizures was when my lb was 5 months old. Both times we increased my dosage again because now I'm not pregnant it doesn't matter so much and although I still breast feed, the amount that gets through to the baby is tiny and not known to be dangerous.

    I did pregnancy yoga and hypnobirthing classes during pregnancy which were great for me and I'd recommend this sort of thing to other people who are suffering with illnesses and still want to take some control of their body and keep their baby safe during pregnancy.

    In the end I did have to be induced at 39 weeks, because although I didn't have another seizure after 33 weeks, towards the end I was exhausted all the time, showed signed that regularly that I might be about to have a seizure and so on.

    My gorgeous baby was born safely by forceps on 3rd May last year and is thriving! He's just started to call me Mama and does something new every day. I've recently started thinking (well in advance!) about a second, and have arranged to be referred for pre-pregnancy epilepsy counselling in about a years time.

    Good luck, I'm sure you have many wonderful times to come.

    Amy xx

  • Thank You for you're reply - lots of good tips. Really pleased that things went relatively smoothly for you. I guess I'm lucky in that tiredness/lack of sleep isn't a trigger for me! It's more stress related.

  • Note you may also be under a lot of stress!! Certainly your body will be under a lot of physical stress in the last few weeks of pregnancy xx

  • 😆 Yeah I sort of figured that. Although my partner (and now myself!) are very laid back - maybe a little too much so according to some!

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