Seizures (fits) in pregnancy

[Bb14]

Hi. Not sure if anyone can help or has been through the same thing but... I'm 19 weeks pregnant and have epilepsy. I've been having small seizures throughout my pregnancy which is fairly normal for me. Last night I had a huge seizure (the kind where you thrash around unconscious) I was unconscious for 15 mins. I haven't had one of these for 3 years. I've been checked and baby seems ok. Had this happened to anyone else? Did it get worse as pregnancy go on? What about birth and labour. If anyone has anything to share I'd really appreciate it. X

im in the same boat so will be inerested to hear, but mine have stopped.. hopefully..

I had it with my last two badly. I am a controlled epileptic and ended up with status with both (where you seize uncontrollably) in fact I ended up on a mattress of intensive care with my last one.
But.... They are both healthy. One was born at 39 weeks by c-section and the last one six weeks early (planned) and by c section. I reassumed being controlled fairly quickly.
My consultant assured me it was because of my weight gain I had problems. If I can help then inbox me.

Thanks everyone. I had no problems with my first pregnancy. I have been taking my dugs and have increased the dose twice now. I just hope it all settled down. My dream if using the birthing centre is over!

Hello everyone

I have got epilepsy (tonic clinic seizures) but have thankfully been fully seizure free for 7 years and 9 months. I take the drug, Lamotrigine, and have been on 350mg a day for just over 7 years.

I had a pre-conception advice appointment with a Specialist Epilepsy Nurse prior to TTC so I knew the risks but I'm still very apprehensive about it all.

I have been having my Lamotrigine levels checked prior to and during pregnancy and last week got the news that they have halved from what they were before I got pregnant. They explained this was because of all the extra circulating blood volume but it has panicked me slightly. My obstetrician has increased my dose and as of today I'm now on 400mg a day. We are all just keeping our fingers crossed that I don't have a seizure and my drug levels will be checked again in 6 weeks.

I've been told that women with epilepsy are more at risk of seizures after the birth due to changes in hormones and lack of sleep but I'm just taking it say by day for now. I'm dependent on my car for my job so I'm screwed if my seizures come back

Forgot to say, I'm currently just over 22 weeks pregnant

Hi, I don't get tonic clonics thankfully however my seizures did get slightly worse during the third trimester, I was given some emergency clonazepam for bad days to take alongside my usual drug (Zonisamide) and induced at 39 weeks. DD was absolutely fine, if a bit drousy from the drugs! For me the problem was after birth. My consultant (ob and neuro) insisted on a 72hr postnatal stay, the midwives were (wanted to discharge after 6) - we put our feet down. Glad I did, I ended up having the worst seizures in years 24 hours post birth, I was having repeated myoclonic jerks - not good with a newborn! Thankfully in hospital they were able to get hold of the specialist nurse quickly and it was sorted within a couple of days.

I'm having a planned c-section because of my health, I also have a minor heart issue alongside my epilepsy, so I'm anticipating being in the hospital for a long time.

Can I ask how long it took for your seizures to settle back down again after the birth? And did any of you have to lose your driving licence? I was kind of hoping that if a trigger is known for the seizure (pregnancy and labour etc) then the DVLA might have different rules??

Hi Bb14
I'm pregnant with 3rd, 15 weeks, badly controlled though mainly small seizures. 1 pregnancy was okish (rough till 4 months then settled a bit), one easy, and this one hard. Saying that, I just needed to start another medicine for something else which seems to have mostly settled it. Before that, I was despairing, so big hugs.

You probably know this but there are a couple of things that can be causing it:

1. oestrogen is a convulsant, and your body makes (much) more during pregnancy. (Progesterone is an anti convulsant) 2)progesterone, oestrogen both get metabolised using certain mechanisms in your liver - if you are on an enzyme inducing drug like Tegretol, you can get interactions which alter your blood levels 3)you have way more blood circulating 4)blood sugar level fluctuations can give some people fits - I can't fast for 24 hours or they kick in. I wonder if the extra demands of pregnancy are a problem?

If you haven't, I would go to the GP to get a drug level taken asap. It's also worth getting referred into the hospital system for the epilepsy, though I guess that's happening?

Yes, my labours were in the delivery unit and I didn't have any seizures during labour, but I kept the bars on the bed up all the time just in case. I was terrified I might fit though. I was stuck on a monitor non stop. I took a little bit of extra medicine which I shouldnt have, but was basically OK. I believe there are drugs given to stop status seizures - it might be worth discussing with the specialists if it would be worth having them available in labour?

This time I'll take clobazam into the delivery unit and take it for the first week or so to help me through the rough patch after delivery. This is a '10 days only' type of drug - it might be worth considering if your consultant/specialist nurse thinks it would help.

Keep smiling - only 21 weeks to go, and it'll seem worthwhile :)

Thanks again ladies. I am having my drug levels checked. On Lamotrigine so there is the whole hormone interaction going on. Trouble is it takes 4 weeks to get the results back so it's almost pointless bothering! Seeing the obstetrician on Monday so will discuss postnatal issues then. It's strange how your body can react so differently to different pregnancies. Maybe it's a boy this time! It was very reassuring to hear that your babies seemed to suffer no ill effects from the seizures. Good luck everyone! X

I can't comment on the driving licence I'm afraid, my seizure have never been fully controlled so no driving licence for me
The rules have recently changed about losing your licence, but only insomuch as what types of seizures you have - you'll have to look it up but I think if you have ones affecting consciousness then you're still banned for a year even if it's a known cause.
Bb14 I'd speak to neurology if I were you - they gave me clonazepam to take during delivery and that was what I had to take when my major seizures started afterwards. I only had to take it for 3 days but then I was back to my level of "normal".

Losing my driving licence is probably the biggest hing I'm worried about!

What dose of Lamotrigine do you take Bb14* and how are your levels doing?? I was told therapeutic levels range between 1.6 and 4. My levels prior to pregnancy were 3.3 but my latest results show they are only 1.6 hence why they've increased my dose now. They have only increased it by a further 50mg but I'm hoping it is enough to do the trick.

I should add one more 'cause' you might not have considered...

If I don't eat much but drink lots, I find it flushes the medicine right through me, and it doesn't get absorbed properly. If I eat stodgy food at the same time as my pills they get absorbed much better.

PS - both babies healthy, happy and very naughty.

I take my morning dose with my breakfast but my evening dose just gets washed down with a cup of tea

Can I ask if any of you breast fed? It is something that is really important to me but my Epilepsy Nurse has said the reality of it (feeding every 2 hours) might not be compatible with my epilepsy as the lack of sleep will further trigger my seizures. She suggested expressing so my husband can do some night time feeds but I know that expressing isn't an ideal option until the baby is at least 8 weeks old. She also mentioned mixed feeding but I just really, really want to establish full breast feeds. I'm genuinely upset at the thought I might not be able to do it. Is this something anyone else found to be a problem?

I gave it a go, however your epilepsy nurse is right, the feeding every 2 hours is brutal plus I wasn't recommended to co-sleep due to taking medication. As it happened, DD wouldn't latch (or might but wouldn't suck) so I expressed and topped up with formula for 4 weeks before going fully to formula as I couldn't keep up with the expressing schedule. If DD had been able to latch things may have been different and I might have been able to mix feed for longer, however I think we would have always mix fed as I found the every 2-3 hours exhausting and didn't feel safe seizure-wise, but I could just manage it because DH was doing one of the night feeds and it meant that I had a gap of 4-6 hours which made it ok.
Even if you can't fully breast feed, I felt just giving them colostrum is a really good start - I'm going to do this again if there's a next time, before moving to mix feeding (baby latch permitting! ).

Sorry realised some of my post didn't make sense - I'm vaguely lucky in that I can sometimes tell if I'm going to have a seizure, hence the not feeling "safe" - I knew it was going to happen. Also my epilepsy is not properly controlled even with medication, if it is normally fully controlled it may not be so bad. I think I'm a bit of an outlier at the "extreme end" as far as epilepsy goes, hopefully someone else will be along who's a bit more normal so to speak!

I breast fed my daughter exclusively. She didn't wean till she was 21 months! She would never take a bottle at all. Night feeds are tricky but for me it seemed so much less faff than bottles would have been anyway. I managed all of that with no seizures last time but just being pregnant has destroyed me this time. My lamotrigine levels were 0.5 (eek) so increased drugs and had them re tested but it seems to take 4-6 weeks to get the results so no idea what they are now. This has been a really useful thread. X

Bloody hell Bb - 0.5!!! That is madness!!! Where I am having all my care (in Coventry) the blood results take 2-3 weeks to come back as they need to be sent to Birmingham apparently. Although I was 21 weeks when the results showed my levels have dropped and my dose has been increased, they actually don't want to check my levels again for another 6 weeks?! By the time the results come back it will be almost 3 months that have passed since they increased the dose.....it seems a bit odd to me! I would rather be tested every week so I know things are going in the right direction. I spoke to my Obstetrician about it last week who has had a lot of experience working with pregnant women with epilepsy and she said that research shows regular blood testing isn't advised anyway and that they should increase our drug doses if we start becoming symptomatic I don't have a Neurologist because of how controlled I am but my obstetrician has urgently referred me to one who specialises in pregnancy and epilepsy so I will discuss it further with them. It is all such a nightmare. I was so, so happy to read that you breast fed exclusively, that has really, really cheered me up!!!

This thread is brilliant - it is so nice being able to talk to other women going through the same thing

Agree - this thread is fab. it's so nice to see other people walking the same tightrope and making the same tricky choices. I'd rather you all weren't obviously :) but it's nice to talk to others in the same boat.

I couldn't breastfeed - I developed a different condition shortly after my first was born and the drugs for that meant I couldn't (and won't be able to). I did express colustrum for both of them. It means your milk comes in more - you get rock hard boobs for days and days. You could feed in the day for as long as you have some supply - or express when it's possible. Given free choice, I'd go with that. The advantage of formula is that other people can do the early morning feed when you are fast asleep, and the baby goes longer between feeds.

I did grieve breastfeeding with my first - I had this absolute need to feed them myself. If it helps, people now think that much of the benefit of breastfeeding is because of the bonding - you can duplicate that by always looking in their eyes, stroking them etc. So you are not poisoning your baby by formula feeding.

I'm going to share this in case it's useful to anyone.

If you have to formula feed, the low faff way is - you make up 24h worth with boiling water, then allow to cool a bit and keep them all in the fridge, then warm one as needed. The bottles are sterile, and so is the milk when you make them up so this is OK. I experimented to find the microwave setting to warm it a little bit, and after a good shake and settle (vital) it would be fine really quickly. Both of mine would actually drink unwarmed milk quite quickly which helped.

PleaseBonk that's not a safe way to make up milk. It's not bacteria in the water that's the concern, it's the milk powder. It must be added to water hotter than 70 deg c.
so if you can't make them one at a time the ideal way then the next safest way is to make a few together with very hot water, quickly cool them and store at the back of the fridge til you need them.

It was my understanding that once hot milk can not be re-heated??