Pregnancy and epilim/keppra

[Mango401]

Hello, I wondered if anyone could give me some advice.. I'm loosing myself just now through stress and other people's opinions.

My partner and I found out we were pregnant a few months ago. It wasn't planned and we were trying to be as careful as we could. I am epileptic, I was on sodium valporate at the time and quite a high dose.

When I found out and told the doctors etc, everyone was very negative towards me and immediately told me have an abortion, but it's just not in my nature to do so and would destroy me as a person. They scanned me and I was only reading just 5 weeks so they did a quick 24 day changeover to keppra. I'm now on 500mg keppra and 200mg sodium valporate am/pm. To further decrease epilim this week. I've been made to feel like such a monster since finding out, my own mother is not supportive, some health professionals have been so cruel and harsh to me and I feel like I've had no support.

I am absoloutley terrified and feel so alone. My partners amazing and tries to reassure me all the time but I can just feel myself falling into a dark hole. I had a horrific birth with my first son due to having eclampsia and almost died, and I am now terrified of this pregnancy and find myself not being able to enjoy it due to family and health professionals opinions. Some have been incredible and others have just been horrific. I don't know what to do or where to go and who to turn too. I am currently 10 weeks.

I just wondered if anyone had any advice.. I feel completely alone.

[Mumtoabravelady]

Hi Mango401

Contact the hospital where you are receiving maternity care and ask for a referral to the fetal medicine department. They would be the best team to counsel and advise on what happens next and can point you in the direction of good support networks to help you through this pregnancy. It also sounds as though your previous birth was traumatic so its worth asking your gp for support with that. For the future it may be a good idea to seek Neuro input as the current guidance is that women of child bearing age should not be taking valproate so they should be working towards changing your medication anyway. Wishing you all the best for this pregnancy and I hope you can start to enjoy it more.

[Mango401 in reply to Mumtoabravelady]

They are all currently involved anyway. The reason I was put on sodium valporate in the first place was due to the fact it was the only medication thay controlled my tonic clinic seizures. Thanks.

[EpilepsyAction1 Partner Epilepsy Action in reply to Mango401]

Hi mango401

That sounds like a tough set of experiences for you. What you do about your pregnancy is of course, your choice. It’s great that the doctors were able to change your medicines so quickly. I do hope the Keppra works for you.

It’s not surprising you are thinking about your previous pregnancy. And that that is causing you extra worry. I agree that it might be a good idea to talk to you GP about this. There is also an organisation called Tommy which may be of help: tommys.org/pregnancy-inform... They have a helpline which could ring to get some support with what has happened fro you in the past and what is happening for you now.

And here is the range of support we offer at Epilepsy Action: epilepsy.org.uk/info/suppor...

If there isn’t a coffee and chat group in your area, then you might find our online community forum4e helpful as a place to chat with other people in a similar situation.

And here is all our information about epilepsy and having a baby. Hopefully that will offer you some reassurance.: epilepsy.org.uk/info/daily-...

If we can be of any more help, please feel free to contact us again, on here, by our helpline email account or the Epilepsy Action Helpline freephone 0808 800 5050.

Regards

Cherry

Epilepsy Action Helpline Team

[AmyBadd]

Hi Mango,

I’m currently pregnant with my second child and have been on sodium valproate for both pregnancies. Unfortunately, it’s also the only thing that controls my seizures. Luckily in my case, the pregnancies were planned so I was able to reduce my dose down from my usual 1600mg per day to 800mg per day before I got pregnant. This has been a balance between the risk of the Epilim to the baby and the risk of seizures to both myself and the baby. I had two tonic clonic seizures during my first pregnancy (none so far this time but I’m only 19 weeks) whereas I wouldn’t have had any if I was still on the higher dose.

I also have a wonderful supportive husband and also wonderful supportive consultants. If you are not already going to one, find out where your nearest joint Epilepsy and Obstetrics clinic is. I didn’t go to a joint clinic first time round as we lived somewhere different, but now I’m lucky that my local hospital has one. You can travel to a further away hospital to go to one though, and I’d recommend it. My consultant there specialises in treating pregnant women with epilepsy. He has lots of experience. He understands that despite the press around it, for some of us, being on sodium valproate during pregnancy is necessary. He fully laid out my options about trying other drugs, the risks of each option, etc, several times but didn’t pressure me into my decision, just made sure I knew what I was doing.

If it’s any help to you, my 2.5 year old son who was also conceived and carried on Epilim is hitting all his developmental targets. The chances of anything major being wrong are still quite low (although of course higher than if you weren’t taking sodium valproate) and you are doing what you believe to be best for your family: you, your new baby and also your partner and other child.

Good luck with everything and feel free to contact me if you want to chat about anything.

Amy

PS. I hate the new packaging for Epilim with the “no pregnant women” symbol on it. It makes me feel guilty every time I see it 😢

[Wish1 in reply to AmyBadd]

Hi Amy. I just joined the group yesterday. I'm currently in the process of trying to decide whether to attempt to conceive on epilim. My husband and I were undergoing Ivf approximately 3 years ago at which point my neurologist was very supportive and happy for me to attempt. Unfortunately the Ivf had to be put on hold as I was diagnosed with cancer. I'm now 2 years cancer free and my oncology team are happy for me to attempt again. I have 2 frozen embryos ready to transfer. My neurologist remains supportive however my epilepsy nurse keeps telling me that no one should get pregnant on epilim and has referred me to another consultant to see if they have advice about switching medication. I have tried to come off epilim before and only one other drug controlled my seizures but I had to be taken off of it due to severe side effects. I'm on a low dose of epilim (200mg a.m 100mg p.m) but I'm also on lamotrigine. Apparently adding another anti epileptic increases the risk further even on a low dose. Where you on epilim only during pregnancy or any other drugs?

Thanks

[Mango401 in reply to Wish1]

Bless you, what a hard time you have been through! I am on Keppra fully now but at the very start was on Epilim and keppra. Epilim is the only medication that gives me a "normal" life, and I will be asking to switch back when baby is here. Keppra makes me feel like I'm stoned a lot, it's not a nice feeling! It's a hard decision and I can understand fully. I bullied myself a lot at the start with taking epilim, but u did so much research and talked to so many people about the effects of epilim and pregnancy.. most people I spoke to had absoloutley no physical problems with the baby or developmental.. others I spoke to their babies were only 1 or 2 so could not comment on developmental but again physically were fine. It's a good idea to take folic acid at 5mg three months before trying to conceive.. or so my original consultants told me. At the end of the day, we make the decision and although I am having a terrible time with my consultants I really don't care about their opinions any longer, I will love him/ her regardless when they come along. It was my choice to continue with the pregnancy when I found out and I couldn't love them anymore than I already do! I honestly wish you the very best of luck, If you need anyone to talk to you know where we are x

[AmyBadd in reply to Wish1]

Hi Wish,

During both pregnancies I have been on 800mg of Epilim (400mg twice a day). My normal dose is twice this. I am also prescribed Clobazam, which is a fast-acting AED, which I am able to take if I think I am at risk of having a seizure. I only take it about once a month, usually if I’m feeling run down, if I’m unable to sleep or have slept very badly. I don’t think it adds much risk to the baby, but it’s not great to take regularly the baby could have withdrawal symptoms after birth.

I’m now 26 weeks and still no seizures this time! Hooray!

Amy xx

[Wish1]

Hi Mango401. I just wanted to message to say I hope things are ok. I have only just seen your post having just joined the group. Struggling to make a decision about whether to get pregnant on epilim myself at the moment. Everyone seems to have a different opinion including health professionals. Really hoping that you're not feeling so alone now x

[Mango401 in reply to Wish1]

Hello! It's so lovely of you to message. I'm now 18 weeks pregnant. Everything has been fine so far health wise with myself and baby. We have 20 week scan next Friday. I'm now fully on Keppra as they took me off epilim by the time I was 12 weeks. My midwives have been incredible and been my rocks fighting my corner every way. However, the pregnancy itself has been the most awful experience I've ever had due to the consultants. Every time I go to an appointment with them, they go over how I should of never have gotten pregnant in the first place, that I didn't follow the 'epilepsy rules and that if their is a problem with my baby it's my fault. My recent appointment she upset me so much I had to be taken out the room by the midwife who was incredibly angry at how the consultant had acted. She took me back in and due to being so upset and the fact my mother was in the room she let me listen to the heartbeat for the first time. I remember when I listened to my son's heart beat the first time and I cried I was so happy, but this time I hated every minute of hearing it due to the horrible things she had said to me. I'm very nervous going ahead, only due to how they are treating me in appointments. I have another consultant appointment in two weeks and I'm very nervous.. however I've discussed with my partner that if they treat me like this again (this is the fourth time it's happened), then I will walk out and not return. They have caused me so much stress and upset, I am not enjoying my pregnancy at all. I have been in touch with my previous consultants who are going to attend the meeting in the next few weeks who are fantastic people and understand why I am so upset, so hopefully it will get better xx

[Wish1 in reply to Mango401]

I'm so sorry you're having such an awful experience. There are some people who really shouldn't be Doctors. I can tell from your post though that you are going to be an amazing caring mum. I really hope that things get better. Sending hugs xx

[Wish1]

Keeping my fingers crossed for you xx