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Epileptic Mums/Mums to be

(6 Posts)
MamaMort Sun 03-Jan-16 15:16:03

Hi all, I'm just looking for a little advice/company. I've been epileptic since I was 9, so the condition is most certainly nothing new for me, however being pregnant is. I'm well medicated and despite some glitches during my late teens and early 20's, (I'm now 35) I'm very responsible with my medication.
I saw my neurologist a few months ago and discussed the plans my partner and I had to start a family. Lucky me, I don't have to change my meds and have already been taking folic acid for a couple of years. I was reassured off everything and I wasn't stressed about and epilepsy affecting my future pregnancy. I was really positive.

Yesterday afternoon I had a seizure out of the blue; my first in over a year. It has left me feeling more vulnerable than usual. I'm only 5 weeks pregnant and although I know they are pretty hardy little things, I'm terrified that all that jerking could harm my baby. More to the point, I'm even more terrified about what could happen if this happens again in say 7 months time.

Maybe I was living in a relaxed bubble before, I've never let my epilepsy get the better of me, but now it's not just me anymore. I feel like I can't trust my brain to be careful with my baby; does that make sense? I'm just a little shaken (no pun intended!) and would love to hear from some women in the same boat.

Jellybean100 Sun 03-Jan-16 15:21:08

Hi, it's not unusual to suddenly have a seizure when pregnant- your body is going through a lot of changes and you react differently to your medication. You need to be seen asap to review your meds. It may mean a lot of swapping and changing in pregnancy to get you on the right meds and the right amount. X

Mayahan Sun 03-Jan-16 17:39:40

Hi MamaMort,
I'm in pretty much exactly the same situation! smile I've had epilepsy since I was 14 or so and, whilst it's never been completely under control, I wasn't having seizures more than every six months or so - that's pretty good, for me. I was taking Lamotrigine and Zonegran before we were ttc and came off Zonegran a few months ago, so I've never expected to get through pregnancy without having some fits. I've just been hoping that they wouldn't be disastrous ones.
So, I'm 9 weeks now and had my first seizure-whilst-pregnant a week-and-a-half ago. It was mad really, because it's definitely the shortest recovery time I've ever had - I have no idea if pregnancy had any effect on it. My new consultant, a very marvellous lady, said that in terms of medication, the first trimester is all about protecting the baby, and the second two are about protecting the mother i.e. if it does seem necessary I can start taking Zonegran again later. Still not sure about that though.
It really does bring it home to you though, doesn't it? I'm like you, I was always pretty relaxed about my epilepsy, have always ridden my bike everywhere, I work at height for my job - and now all of that is seeming a bit more irresponsible...
I think my biggest worries are for when I've actually had the baby though. Mainly, about squashing it. Is it entirely wrong to wear a sling, for example? I found a web page by www.sheffieldslingsurgery.co.uk that talks a lot about this, but everyone's situation is different, isn't it? The main thing I'm looking forward to is that my consultant told DP that he will be doing all night-time feeds. As I say, a marvellous lady.
Good luck with everything! Thanks for posting this aswell, all the other threads I've found have been years old. You are definitely not alone. : )

TattieHowkerz Sun 03-Jan-16 19:09:13

Congratulations on your pregnancy!

I have epilepsy and diabetes. I have a 4.5yo, and am pregnant again (6weeks). I'm on tegretol so haven't changed medication for pregnancy, and my epilepsy is well controlled (though wasn't for the first 10 years).

I had a seizure at about 16 weeks in my first pregnancy. Apparently some AEDs are affected by increasing blood volume (dilutes their effect), so it is quite common to have a seizure/go up in dosage during pregnancy. The good news is that the baby is well protected and a fall or typical seizure is unlikely to cause harm (don't know about status epilepticus). Although it wasn't a seizure, I had a bad fall straight onto my bump at about 7 months and DD was absolutely fine.

My DD is a very happy, bright, active and healthy child, despite my having increased risk factors from both epilepsy and diabetes.

If you are on tegretol or other meds that affect bone density you might want to check if you need to be on a calcium/vitamin d supplement as well as the 5mg folic acid. I can't remember if you were asking something in your post(sorry!), but I hope that's helpful.

WelliesTheyAreWonderful Mon 04-Jan-16 01:31:38

Hello, many congratulations!

I've had epilepsy since late teens and I've switched meds so many times to try and get it controlled. When I got married we started planning meds to suit both a baby and me. It took about 3 years to get to a level we were happy to try for a baby (about 1 tonic clonic a year but loads of very short absences). During pregnancy I had 5 tonic clonics and luckily they didn't seem to affect baby. I had to increase my meds twice during the pregnancy. I was really worried about having a seizure during labour or shortly after the birth when I was in the hospital without DH, but thankfully everything went well and DS is healthy! 7 months post birth I'm happy to say I've still not had any tonic clonics, but obviously the absences are a bit worrying and I'm sure the day will come when I have a t/c. I just hope it doesn't happen when I'm holding DS. Saying that, today I fell backwards whilst holding DS, completed unrelated to epilepsy, just plain lost my balance. We are both absolutely fine! Good luck to all of you with your pregnancies!

Mayahan Tue 10-May-16 10:42:13

Hi there,
Just wondered how things were all going for you? I'm finding everything increasingly stressful. My seizures started to increase round about the 21 week mark and am now on 2 different sorts of medication - one of which shouldn't be prescribed for breastfeeding mothers. I've not had a seizure for 2 weeks but I'm now just feeling weirdly anxious about everything! Genuinely hope things are going well for you though.

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