Any ladies pregnant with epilepsy?

[Nuttypea]

Just wanted to know others experiences with their epilepsy during pregnancy? Did your seizures return if they were controlled? Is baby healthy etc... Anything is much appreciated. ❤️

I've got a ten month old and have epilepsy, although it's secondary due to other medical reasons. It didn't have any impact on my pregnancy or baby in terms of what you've asked (seizures etc), other than I had lots of extra checks (there's a fetal heart scan you have in the low 20s weeks) and they started out saying it was a default c section. My epilepsy nurse also specialises in pregnancy and came to a few of my appointments so it was quite well managed in terms of continuity of care.

You're also not allowed/reccommend to have opioids as pain relief (pethedine etc) so an epidural was my main pain relief option which I didn't want, and they wouldn't let me have a water birth, but as it was I was at the hospital for all of 2 hours in labour and had just gas and air so it wouldn't have been worth it anyway.

I have epilepsy. I was diagnosed with it when I was 2 months pregnant with my first child. I take medication twice a day for it and have been seizure free for 4 years. Im 7+5 weeks pregnant with my second. I have to have extra scams and appointments throughout pregnancy but last time was all fine so I don't see any problems with this one.

I have controlled epilepsy and an 11 year old. I had no problems at all. Like a pp I was told I couldn't have opioids during labour, but was able to have an epidural. I'm not sure how much has changed in the last 11 years. Apart from extra checks with the midwife everything went absolutely beautifully. The only thing that was highlighted was the raised possibility of a cleft palate due to the medication I take to keep the epilepsy controlled, but I had an extra scan that concentrated more specifically on this and was assured he was okay.

@Cardboard33 @EmilyG2020 @Sarahb1969 Thank you so much, I really appreciate the replies. Have just got my first BFP after a year of trying. All very exciting, but just in the back of my mind that my seizures might return. I take lamotrigine twice a day and my last seizure was 7 years ago!

By the sounds of it, hopefully I will be fine but it's just another thing to add to the pregnancy anxiety. The journey hasn't even begun yet 🙈

Feeling on top of the world at the moment though, I honestly thought it would never happen ♥️ congrats to you all, and thanks for your replies x

Congratulations Nuttypea - what an exciting time

I'm on the same drugs as you - 150mgs twice daily, no fit for 15+ years. If you are worried ask to speak to your epilepsy consultant/team. It took me a while to get there, but he was totally reassuring. In the end they where more worried as I was old - 39

Hope you have a wonderful pregnancy

Hi

I've had epilepsy since childhood, hormonal.. triggered by the time of the month!

They were controlled for up to 4 years on 300mg of lamotragine, when I fell pregnant I started with seizures again and eventually upped my dose to 425mg advised by nurse.

I was under a consultant & due to her not growing by the 37th week (completely unrelated) I had to be induced! I had to be continuously monitored throughout, labour went completely wrong (again, unrelated) but in regards to my seizures surprisingly I didn't have a seizure during labour, however I was told I HAD to have an epidural to stop me getting tired.

As soon as I had her I was advised to go straight back to 300mg & haven't had any since I think I had one while feeding her in the early weeks but my partner was there - overtired.

What stopped we're the migraines unfortunately they're back now... would much rather seizures than migraines any day

Hope you don't mind me gatecrashing but I just wanted to say thanks for starting this thread OP, I have epilepsy and planning to TTC in the next few years so it's really nice to hear success stories as I tend to focus on the scary bits. Lovely hearing all of your news

Congratulations @nuttypea! I take 500mg of Keppra twice daily. My nurse also gave me some clozobam for as and when I needed it and I took some shortly after giving birth as I was shaking but I think that was due to adrenaline rather than epilepsy. I was automatically classed as high risk so they might not let you give birth in a MLU but we weren't concerned about that, although do question them rather than just accepting things as like I said we started out being told it was a default C section and ended up with unassisted delivery very "natural" birth.

@YasssKween if you haven't already I'd talk to your epilepsy specialist about TTC as I had to drop medication gradually etc. Ten months on I've stayed on the lower level so maybe it was just too high, but there's some epilepsy meds that aren't compatible with pregnancy/breast feeding.

Sorry, just another thing.... Did/Are you all taking pregnacare or multivitamins alongside the 5mg Folic acid? I've now scared myself in to thinking I could cause harm by having too much folic acid 😂

I have epilepsy , I was diagnosed 13 years ago. Currently 25 years old and pregnant with our first baby . I’m 8+5 weeks pregnant , due August . I take keppra and Lamotrigine for my epilepsy and was told to take folic acid 5mg 12 weeks prior to us trying for our baby and continue to take . I also take vitamin D as the pregnecare vitamins made me feel really rough (more than I do already!) . They’re not giving me any extra scans or treatment but just said if I have any seizures let them know . I had very bad seizures daily but since being pregnant I’ve had nothing . Congrats on your pregnancy xxx

@itsemily Gosh, I send you lots of happiness and health during your pregnancy. Sorry to hear you have seizures daily, I can imagine the toll it takes on you. Fingers crossed this pregnancy co tinues to keep them at bay for you! And a massive congratulations on your pregnancy x

@nuttypea I didn't take Pregnacare/similar - like the other poster I started taking the higher dose folic acid when we were ttc which I was then told to continue throughout pregnancy. I also took vitamin D (higher dosage) as my epilepsy nurse ran some bloods, then later on in pregnancy I also took ferrous fumate as I was/am iron deficient. The hospital told me to continue with the iron and vit D whilst I was breast feeding too. Every medical professional I spoke to said that Pregnacare and similar were a waste of money and you're better off taking MVs as a general habit and/or taking specific tablets for specific vitamins if required. People seem to obsess about taking them on here, although I've never come across that in my actual life.

Incidentally, pretty much everyone I know in real life (and on our thread on here) who took Pregnacare had really bad morning sickness. I didn't have any sickness at all.

@itsemily congratulations! Having seizures every day must be really rough - are they focal or do they take over your whole body?

I'm surprised that there isn't a better care package in place for you though - have you had your booking appointment? where in the country are you located? We are in London. I haven't actually had a seizure since 2015 but as I said my epilepsy is secondary, but I still had a lot of extra monitoring on the "epilepsy pathway", was consultant led and considered high risk.

@Cardboard33 thank you ! I feel like my Epilepsy has never been as good as it has been since being pregnant !
I have Tonic Clonic Seizures and Absence Seizures so a little mixture really . I had Absence seizures from 2006-2012 then the Tonic Clonic seizures started . Tried 6 different meds and finally these two do the trick enough for me to enjoy life more !
I’ve had my booking appointment and they have said since I’ve not had a tonic Clonic since August 2019 (when I was last hospitalised), they are happy for me to just contact them if I have a seizure and they’ll do my bloods to test the levels of lamotrigine and keppra and see if they’ve gone down . I am seeing my epilepsy nurse on 11th Feb but again saw her briefly for a chat in the corridor at work and she said she’s not concerned so I’m kind of just riding the waves right now ! I’m consultant lead and meeting my consultant when I have my 12 week scan and have been told I’ll most likely need a c section which I’m ok with as they say labour for me might be a bit risky . Sorry for the long reply but it’s nice talking about it so freely ! I’m in the East Midlands so maybe they’re a little different to London ? I’m so glad you’ve been free since 2015! That’s amazing news xxx

Ah, so do you work in the same hospital where you're having your baby then? That might be why there isn't the same level of concern, if they can "see you" every day as it were. If you're ok with a c section and feel it'll help your situation then definitely go for it as they have to justify the cost/it isn't the easy option. I just didn't really feel it was necessary given how long it had been since I'd had a seizure (I've had less than 5 in total) and I also had backing from my neuro consultant saying that I'm basically fine until the underlying condition changes. Although that said my baby came completely "naturally"(ie: he just decided he was ready to come out) at 36+6 so even if you do have a planned C section be ready for baby to come early anyway!

@Cardboard33 yes I work in the same department so I think that helps a bit with their reassurance that I am fit and well .
Less than 5 seizures is really good , I’m glad you’re doing so well ! I had hundreds a week so they don’t want to risk the natural birth unless baby does come early ! X