Anyone have experience of seizures or epilepsy in pregnancy?

[holytoast]

Hi there - I am currently 16 weeks pregnant, with a history of seizures which began when I was 18/19, then continued for a year or so, since then I have had maybe one or two. I was never medicated for them, as I only had a few, although they were very severe grand mal seizures. The few I have had, and the ones I had as a teen were usually accompanied by all or some of the following - drink or drugs (but usually only a little of each, and never anything stronger than a joint and or one or two drinks) menstrual cycle being at the stage when feeling run down just before my period, and tiredness/not looking after myself very well.
recently the last two were related to intense pain - very bad sunburn, and a fall. I had an aura two years ago when I fell hard on my back, but no fit.
so, very long story, but now pregnant, and worried that they may reappear, what with all the hormonal changes and general run down-ness which seems to be creeping up on me. Of couse not drinking or doing any drugs, but am worried about them either starting in pregnancy, or worse, during labour. The midwife has put me down as a consultant led, hospital delivery - against my wishes, (and knowledge - just found it on my notes)as I have told her I would like to consider a homebirth, with hypnotherapy, as I think being at home will help me to stay relaxed and lessen the chances of me having a seizure. along with other reasons for not wanting to go into hospital unless necessary - spending unnecessary hours there after ever seizure I had doesn't help my feelings about it)even if I do have one, I don't think the chances are that it will cause any problems as seizures in themselves aren't harmful- but obviously wouldn't be very nice! I also really don't know how my body is going to react to the labour.
anyway, sorry for very long winded post, but does anyone have any advice, or experience of dealing with seizures in pregnancy or labour? will be seeing the consultant soon, and want to go in prepared for a fight to get what I want! Cant find anything on the net anywhere that answers my questions.

I don't have any experience with epileppsy but I do know that as rewarding as homebirths can be, they are not recommended for first time mothers. If one googles the statistics, about 17% of women having a homebirth are transferred to a hospital, with that figure rising to about 40% for first time mums.

Not sure you would want to risk this added stress. To be honest, with the uncertainty of how your body will react during labour, I can't imagine that a consultant would agree to have you deliver outside of a hospital. A seizure may not in itself be harmful, but in the middle of labour it could be...

sorry -- I know this is not the answer you will have wanted to hear.

Best of luck

hi my son is epileptic and is on medication he had various sezuires but the most severest is grand mal where he is usually hospitalized. And they can be dangerous especially if you become status e like my son. You should def be on medication, especially if you have had more than 1. Not sure why they havent done this before? And although im no expert you I think you are entitled to a caesarian....but dont quote me. Hormones usually effect sezuires but Epilepsy action uk are very helpful and there is a forum you can join or freephone for advice.
Good luck

VERBOSITY APOLOGY IN ADVANCE!

Hello
Yes, I do have experience - have had epilepsy since age of about 12 and it's been almost fully controlled with medication since then.
This probably is not going to be what you want to hear, but I think you're being a little naive - IMO they are recommending you for a consultant-led delivery in your own, and the baby's, best interest. I may be wrong about this, but you may also find that you are not a risk a midwife is willing to take on at home.
I know your experience of hospital has been horrid to date, but do bear in mind the labour ward is very different from a neurological ward or general ward. I also have found it horrendous coming round from seizures in A&E - it's terrifying when your brain is in a fuzz and you can't work out where you are, who everyone is, what year it is etc...
IME the labout ward is less scary because you arrive fully conscious, aware of (broadly) what (should) happen, you're shown round before at the antenatal classes, so you know where you're going... I don't know. It's just a totally different experience, even though it's in the same building.

I'm not sure going on other people's experience is helpful because everyone's experience is different - but here's how it was for me: I was extremely well throughout pregnancy (the hormones plus extra sleep that I needed and therefore for once allowed myself) worked wonders. I took everything as easy as humanly possible - got loads of sleep, stopped working at 34 weeks, got loads of exercise etc.
I had one seizure (grand mal) at about 32 weeks, due to a stomach bug - vomited my medication (sorry if TMI) - and therefore was not controlled that night. Fell over and got a bruised stomach which was, frankly, terrifying. Lots of worry about what damage I'd done to the baby.
The birth was consultant-led, and with hindsight, this really was the very best thing for both me and the baby. At the time I had a LOT of attention - I read a lot of complaints about midwife-led hospital births being relatively unsupported and scary, but I had quite the opposite experience. Perhaps because of my experience during labour (see below) they let my DP stay in my room for the 4 nights I was in hospital after the baby arrived (though they told him not to leave the room outside visiting hours in case anyone else found out!). I was a priority for a room of my own because (I suppose) risk of freaking other people out?!

During labour I became exhausted and stressed (baby was v small, and heart beat dropped every time I had a contraction) and therefore had a grand mal/tonic clonic fit. These are normal triggers for me. I ended up having an emergency c-section and spent several weeks afterwards feeling rather depressed about it (felt as though I'd somehow failed the baby by failing to give birth to him properly). It wasn't until my grandfather pointed out to me that unless we'd had proper medical intervention either one or both of us would most likely not have survived the birth that I realised that actually it probably had been a rather good thing.

And ultimately, the baby is the very best thing that has ever happened in my life, I would hate to think I would have done something that would have endangered his life. (Incidentally, he is now a very fit, healthy, lively 2.8 year old).

I think it's relatively unlikely you'll have drugs introduced during pregnancy because there are always risks to the foetus, especially if you're not taking folic acid supplements. But I think it would be a good idea to take things as easy as you can. This is a time to be totally honest about your limitations. Your hospital may have an epilepsy nurse and liaison team who will be able to talk to you about the pregnancy and life after the birth (there are practical things you need to think about then. Eg always change the baby's nappy on the floor, not a changing table; feed the baby whilst sitting on the floor; get a pushchair with a little lead attached to your wrist; get some help in the first few weeks so that you can get some solid chunks of sleep - eg my mum stayed once a week and took the baby from 9pm to 9am while I had serious sleep). Some of what they said I found deeply patronising, and therefore ignored, some of it made total sense.
I think the most important thing is to be totally realistic - we're not talking about nice dream scenario here, but really getting the best (healthiest) outcome for everyone.

I'd second the recommendation to go on the Epilepsy Action website, they also have a forum (forumfore.co.uk) that is useful. But most of all, please take what the consultant says to you seriously - (s)he is not the enemy, but is genuinely trying to ensure that your baby arrives safely.

God. Have wittered on loads. Apologies, but I hope some of it helps.
Good luck and take care.

Thanks all for the advice - and no worries about wittering on! I do need to hear lots of different experiences that people have had - and will look into talking to someone at epilepsy Action. However, regarding medication, no, I don't really think I need to be even considering that - I never was on any for any length of time, even when the seizures were happening more often ( and even then, I'm talking 5 or 6 seizures in total) and I havent had any in 7 years. The Grand mal seizures are scary and dramatic, but I have a very long aura beforehand, and am very aware when I am about to have one. I am aware there are risks with homebirth, but I do want to keep my options open too - Rooble your experience in hospital sounds great - I only hope that I would get that kind of treatment - however I also know that others haven't had such good experiences. I guess if that were the senario I could bank on then I wouldn't have a problem going to hospital - but I also don'tsee my situation as the same as someone who needs to be medicated due to epilepsy, as mine just aren't that common. I am really just keeping my options open as I think homebirth could be a less stressful experience, and one that might, then, reduce the likelyhood of me having a seizure. I am also not really intersted in electing for a c section - but maybe I will look into that as an option. I guess I will just have to keep looking after myself and keep an eye on how I am feeling. Thank you all for your comments.

No experience but just wanted to say two things.

Holytoast - congrats on your pregnancy and good luck in finding all the info that you need. I'm sure you will make the right decision for yourself and your baby.

Rooble - awesome post. What Mumsnet is all about - informative, non-judgemental, brilliant.

Zippy - oh thank you, that was really nice of you to say.

Holytoast - yes, I totally agree - seven years seizure-free is absolutely not the same as me. Just thinking of things you can say when you meet the consultant, so you can put your case calmly and rationally and demonstrate that you've given the whole business a lot of thought (which you very clearly are doing):

• Do you live within sensible travelling distance of hospital? So that if you were to need extra help during labour would an ambulance be able to get to you/get you there quickly?
• You might ask them if any of the midwifery team has experience of dealing with mothers with epilepsy and might therefore be okay with delivering your baby at home. It's a bit unfair (I think) to put the midwife in position where she feels (or actually IS) out of her depth - whether because of lack of experience, lack of knowledge or whatever.

One other thing - (controversial one I'm afraid) I would be wary of what people with no medical qualification (eg the NCT) have to say to you. We went to NCT antenatal classes, and I got very caught up (full of hormones, became completely irrational) with the whole "natural birth - good, medical intervention - bad" notion, which I think is why I felt such a massive sense of failure after the birth. They always seemed to forget to mention that what may be best for young (I'm a bit elderly), healthy, fit women with no underlying health conditions, may not be ideal for everyone.

Anyway. Very good luck with it. You have a fair while left to gather your information and come to a decision. I'm extremely envious, thinking of your little spring baby! Enjoy it!

Hello holytoast
I was so pleased to read your post because I think you are in a similar position to me and I was also checking out Mumsnet to see if I could learn anything from other peoples experiences with epilepsy and childbirth.
I started having seizures when I was 16 and took medication (epilim, carbomazepine) for 12 years (I'm 37 now) but it didn't really work for me - it eased the grand mal seizures a bit but almost every morning I would experience shaking and jerking and would never know if I was going to go into a grand mal. So anyway, came off the drugs did yoga and stuff and for a few years all was a bit hit and miss probably having a seizure once every year or two but realised I could avoid even these by taking valium at the times when theres a risk, i.e. tired, menstruating, and even though this isn't ideal it works and I don't take more than maybe 2 pills a month. But now that I'm pregnant and can't take valium anymore I've just been doing without it and have been fine and now I'm 24 wks gone.

Like you though I've started worrying about the hospital thing. I live in Portugal where the system requires that all new mothers must stay in hospital for 3 days after the birth on a ward with other new mums and their babies so basically no sleep for 3 days! And I'm loathe to ask for special treatment, like a private room because then I might open a whole new can of worms with consultants getting involved and demanding I take anti-convulsants etc. I appreciate that this might have to happen but I just want to give myself the best chance of a stressfree natural birth, just like anybody else really, I just can't bear the thought of doctors flapping around because I'm sure that in the right environment I will be absolutely fine.

Fortunately, I have a fab midwife but unfortunately she can't attend the birth due to the system in Portugal. I am also considering a home birth if I can find the right midwife, but because its my first I would actually prefer to be in a hospital. It all seems so complicated and I'm just aiming for minimum fuss. Anyway, I will keep an eye on your thread and keep you updated. Good luck!

Hi

I have had three sons by c/s and have epilepsy. The last one I was very ill as I developed status due to my size. I would say pay attention to your consultant. They may not medicate. I don't think they like to start or rock the boat unless they have to. BUT I nearly died and I thought I was superhuman. A nurse transferring me said ' wannabe10 do you realise when your brain rattles round your head when you seize eventually something will give'. It scared me and tbh I happily had my section and did as I was told............

Thank you again Rooble - lovely things to say - sometimes I forget there is actually going to be a baby at the end of this!
Thanks for your experiences too wannabe - although to be honest, if they even try and get medication anywhere near me they will get told to get lost! absolutely no way that is happening - even for the brief time Iwas on tegretol, I felt awful and swore never again.
Kisathecat - your situation does sound similar - its a very strange one to be in, because no-one could ever tell me why I had the seizures, or even why they stopped. I also think I have managed to find a wayto manage for myself, like you, and would be loathe to start giving up control and having people 'flapping' around me too - I hate fuss, and know that I can easily pick up strees from those around me. I hope you get the support you need - sometimes just being able to talk it through with people who are neutral to get all the pros and cons sorted in your head helps. It isn't just black and white for lots of people I guess. I had the seizures from 19/20 until 21, and then nothing for years, and then one about 7 years ago, then two occasions of auras coming to nothing after a bad fall, both times. Now 32, and so have really been seizure free for 7 years, with the worst period 12 years ago - so hopefully the worst is behind me. I am going to look into natal hypnotherapy and hypnobirthing to help me stay calm during labour - wherever I am - would that work for you? you can get the CDs for natal hypnotherapy, to use at home I think.
let me know how you get on too!

Oh, Rooble - meant to say - I live 5 mins fromthe hospital, I don't think I would be so keen on a home birth if I didn't - and thanks for suggesting the midwife thing - I will ask about that, because like you say, they need to feel comfortable too - otherwise at the first sign of any worry then they might just cart me off to hospital anyway - makes sense to have someone who feels comfortable with doing it. I'm not paying for NCT classes - going to NHS ones, and if I am really persuaded by that, and suddenly want to have the hospital birth, then great! But if I still have worries, I think I will see some people in my local home birth group - get some feeling about how they have gone for people in my area - I am naturally quite sceptical anyway, and generally take people with a pinch of salt, so hopefully won't get swept up in it all! Know exactly what you mean though..not going to start wearing sandals and boiling lentils just yet... (not that there is anything at all wrong with sandals, of course..)

Holytoast, my circumstances are very similar to yours. When I got pregnant, I was not taking any medication either, but was worried about how my body would cope as my triggers are stress and tiredness.

By sleeping as much as possible (so often most of a weekend as I was working full time), I was lucky enough to get through pregnancy without seizure or need for meds.

I would however very strongly advise against a home birth - five minutes to hospital might not sound far, but as you know, a seizure doesn't always work like that - you will slowly get more tired and tired (natural during labour), so you might just think it's part of the process, and next moment you might have a seizure.

Obviously my previous paragraph is personal opinion and not medical - but most doctors would agree, especially for a first time. You have no idea how your body will react, but it's very likely that you might need medical intervention. I was told that, should you start fitting in hospital, they can inject you with something immediately to make it stop during labour. Obviously your seizure will be over already by the time you reach hospital if you home birth. Quite a risk to take with a tiny newborn.

Hi again Holytoast
I just wanted to let you know that I got through the pregnancy and the birth with no problems at all even though I ended up staying in hospital for 2 nights afterwards and hardly got any sleep at all. I'm sure the hormones kick in and help the relaxation of your body afterwards, just keep calm and confident, don't worry and envisage that baby just popping out!