Epilepsy&pregnancy

Hi, I have been diagnosed with epilepsy when I was 14, after the head injury. I am 34 now, and me and my boyfriend want to start trying for a baby this year. I would like to hear/read your stories, opinion, what you planned or changed before, during and also after the pregnancy, how and if, you prepared yourself for pregnancy in terms of slowly changing the dose of tablets before you got pregnant or during the pregnancy, or anything else. If you were taken any Vitamins etc.. Almost forgot to mention, I am on Lamictal 200mg/day (100mg morning, 100mg evening), anybody who was on Lamictal during the pregnancy? Will be grateful for every comment. Lucia

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  • Hi,

    Good luck to you. I think you should be fine taking lamictal as it is not one of the AEDs known to cause problems in pregnancy. You should talk to your doctor in advance anyway and get a prescription for folic acid and start taking it before you get pregnant. This is recommended for all pregnant women, but with some AEDs they like to put you on a higher dose.

    Are your seizures well controlled? If they are, you are in a very good position. Just be aware that it is common for the change in hormones during pregnancy to either increase or decrease your risk of seizures (can't be predicted in advance!) plus if they are triggered by lack of sleep/tiredness/exhaustion, think about how you will deal with this as it is something you will have more of during pregnancy and motherhood.

    I am 29, currently pregnant with my first baby and taking epilim (sodium valproate). Unfortunately, this medicine is not good to take when pregnant, but I have tried other meds (including lamictal) and they just don't work but epilim does. After much discussion with my neurologist I made the decision that I would try for a baby while on a low dose of epilim which controlled my seizures fairly well, rather than coming off it completely and having regular seizures which would be bad for me and a baby. I was taking high dose folic acid for about a year before I became pregnant.

    I am 32 weeks pregnant and have had 1 seizure during my pregnancy (after an exhausting trip over Christmas). I am under the care of an obstetrician because my pregnancy is considered high risk because of the epilepsy. I have extra scans but they have not picked up anything wrong yet. The next one is today (hooray!). The last time I saw the obstetrician, he said how nice it was to talk to someone who had received pre-pregnancy counselling from Drs - he is so used to dealing with epileptic and diabetic teenagers who haven't thought about what they were doing before getting pregnant.

    Just make sure you talk to everyone you can (neurologist, epilepsy nurse, etc) before trying to get pregnant, and then good luck!! Everyone deserves a happy and healthy family and I hope you have one!

    Amy xx

  • Hi Amy,

    thank you very much for you reply, first of all, good luck to you today!

    I never talked to any other people with epilepsy, maybe because I never met any. I am so glad that I could join this forum.

    My seizures: when I was younger it all used to happened straight after I woke upwhrn I was still lying in my bed, and always after I was ill or very weak, I had around 5 of them, sometimes for 1-2 years nothing, then boom, again.. Once, after not having a seizure over two years, my neurologists decided to go on lower dose and slowly get to the point where I won't need any drugs anymore. Happy times. The 4 year process of decreasing Lamictal doses and I have started living life without Lamictal, well nothing changed pretty much, I think I just lost some weight,I was ok with that. Then after a year of no medication at all I had a seizure, it was in the afternoon, not in the bed anymore, I was trying to find my boyfriend so I started walking (uncontrolled) around the flat and then passed out, hit my head and because it was a first seizure since he was with me, and I hit my head he called the ambulance and they took me to the hospital. Well, back on Lamictal, next two years no seizure, after lots of stress at work = seizure, another 1,5 no seizure and then seizure again which was last summer and then last New Years Eve, lack of sleep, a bit of stress, travelling around = seizure (my last one). This got me to a higher dose of Lamictal (200mg/datmy). I am very strict with myself now (more than ever before), especially with stress and sleep, learning to let things go, not thinking about it too much, meditating and also joined the yoga classes, which I love and feel absolutely relaxed.

    My GP said I really have to plan my pregnancy and also talk to my neurologist, So I did. She told me pretty much the same thing you said Amy. She said that 200 mg of Lamictal should be fine to take, however there is always a risk, she said many women stop taking medicines while they are pregnant at least for first three-four months and then decide what they gonna do next. I don't know what I will do, don't really know what is worse/better (if I can say it this way), stop taking it and put myself on higher risk to have a seizure while I am pregnant or no seizure but keep taking Lamictal.

    And yes, she also gave me folic acid, and you mention that you have been taking it around 1 year before you get pregnant, as we are not trying yet, becaure we are looking for our own place and planning to move out. Once we move, we will start trying, it might sound like we migh wait forever, but I don't want to put myself on too much pressure or stress with moving while I am pregnant. Especially when I know what causes my seizures. But If I get it right, correct me please if not, I can start taking folic acid already, even it might be more than 3 months before we start trying?

    Oh, that was a long story, sorry, I am really happy that I can talk about it with people who are going through the same or at least know how I feel. I want to be responsible , especially when it is not only about me anymore, so thank you Amy about sharing your story with me (probably all of us who are planning to conceive).

    All the best Amy, I believe everything will be fine, stay positive!

    Lucia x

  • Hi! My baby is still looking very well, hooray! Lovely to see its face again!

    I think it's ok to start taking folic acid whenever, it is basically a vitamin supplement which reduces the risk of neural tube defects in babies. These are the most common physical defects that occur with some epilepsy meds but occur in other pregnancies, too. I think it is a B vitamin.

    I started taking it for a couple of months and then we started trying for a baby. Then the latest evidence about epilim in pregnancy was released which really scared us, so we stopped again, but I carried on taking it. Anyway, after a couple more appts with my neurologist and thinking very hard, we started trying again, and got pregnant pretty much straight away, but by that point I'd been taking it about a year! I've also been told to continue taking it up to the end of my pregnancy.

    The doctors want me to deliver naturally, but there are some pain relief options (pethidine maybe?) which I may not be able to take because they can trigger seizures. Seeing my neuro in a few weeks to discuss what he thinks about pain relief in labour (although I have been studying hypnobirthing, so hoping to mostly manage on my own!)

    Amy

  • Great news! :) Well, I have it at home so I will start taking it, what dose have you started on? I have to check what my neurologist prescribed me (when I get home). I am also taking vitamin Bkomplex.

    I can imagine how difficult it has been for you but it looks that all is going well, so good luck :) please keep inform me :)

  • I think there are only 2 standard doses of folic acid, either 400 micrograms, which is prescribed to all pregnant women, and 5mg which is the higher dose which is sometimes given to people taking AEDs. This is what I have taken from the beginning.

    I was also advised by a midwife to take a pregnancy multivitamin (although I am not really convinced of the need for vitamin supplements as I am fully aware that many of the formulations cannot be properly broken down by your body, unlike those in the food we eat, and I have a very good diet). The main reason for this was to make sure I got enough vitamin D because there is a huge issue at the moment with people in this country being D deficient (again though, I am a cynical scientist so I would point out that this is just because people with dark skin can't absorb enough vit D this far north and our population is becoming on average darker skinned, but it would be racist for a midwife not to give all patients the same advice). Anyway, I am taking a multivitamin, because better safe than sorry, and it has some folic acid in it, but I've been assured you can't overdose on something like that!!

  • I just checked my tablets, it is 5mg one tablet daily. I didn't have a clue about so many things, before I joined this forum, thank you all for your advices again :)

  • Lovely to hear the good news. Hope everything keeps going well. I wish all the information about getting pregnant had been available when I was younger! I was fortunate that I had a good pregnancy, easy birth and a healthy daughter. I went into hospital the day before my daughter was born to be induced but I started labour naturally. My husband was lucky to get there on time to see her being born!

  • I know, it's amazing how we can all connect and help each other :) great to hear that you had a good pregnancy and all is fine x

  • Hi,

    In sort of similar situation. I don't have epilepsy but due to brain tumour surgery I have developed seizures so on epilepsy medication. Also wanting to try for a baby...was originally told lamictal not great but have since been told/ read its the better one to be on(side effects but less) but take 5mg folic acid with it as helps by prescription only. I am on 100 mg a day as only just starting back on it after trying others. Seems to be ok at moment. I have read they reduce it down to 100 when pregnant if seizures controlled but varies for each person. Waiting to discuss again further with neurologist... epilepsy website really helpful. I also know I won't be able to have natural birth will have to be c-section not sure if that's an epilepsy thing or to do with tumour scar...have you been to see an epilepsy nurse ref this.....fingers crossed it all works out well for you. X

  • Hi,

    Thank you for your comment, sorry to hear that, hope everything is under control x

    Folic acid was something new for me, never heard of it before. I already have it at home, my neurologist prescribed it to me last week, but I haven't start taking it, she said I can start taking it 3 months before we start trying. But As I read now, you can take it even for longer period so I might start taking it from now. I haven't spoken with the nurse yet, should I talk to my GP and tell her that I would like to talk to nurse, or who can help with this? Or wait until we start trying? Thank you for your advice.

    Wish you good luck too, take care x

  • Thank you x

  • Hi Lucia I am on the same medication as you plus others, I didn't know I was pregnant with my little boy who now is 8, loud lovingly naughty funny and full of energy, when I found out I was pregnant I went straight to the doctors and they put me on folic acid and talked me through everything, but I would advise both you and your partner go and listen to everything your doctor tells you. Always get plenty of rest and when you feel tired sleep as a lot of AED cause sleep deprivation. I take B6 and magnizume plus vitamin d but ask doctors about these because of the baby . I was also on epilim which is not good but I was very lucky and my 22 year old daughter is now at uni and is doing well.

    Good luck x

  • Aww great to hear, that is a brilliant story, glad you all doing well, hope you feeling fine too. I will definitely discuss everything with my doctor. I have read already about B6 that many people with epilepsy taking it, I have started taking B-komplex which also includes B6. I am also a vegetarian so will need to be on more vitamins probably to give me and the baby everything he/she will need.

    Thank you for your advice x

  • Hi Lucia try and come off soya milk and drink oat milk , soya milk is not good for girls apparently I have a friend who has taken her girls off soya milk because of this read up on it anyway don't take my word for this xx

  • Oh thanks, funny thing is I never liked soya milk or any other milk, it made me feel sick since I was a kid :/ But lately I am using almond and coconut milk for my milkshakes or in other things like when im making raw cakes. So I will definitely try oat milk, never tried it before, but will have to mix it with some fruit or something else anyway :))) I am too picky when it comes to food :)

  • Girl after my own heart 😂😂 I'm a terrible picky eater I don't like meat but I still eat fish so not 100% vegetarian but i still prefer my homemade pesto and pasta to anything else 😀😀I'm so boring!!!

    X

  • I don't like fish :)) but I also like making own pesto, hummus and cooking generally :) (one of the best options with my picky tongue :) ). Happy eating!

  • My healthy son is now 27 and living life to the full. I was 30 when I had him and it seemed that was little information for pregnant epileptics. I was on a large dose of Lamictal and Tegretol at the time. My GP got me an appointment with the hospital who allowed me, after a long drawn out discussion, to have my baby in the GP unit where my regular doctor monitored me closely and where I got to know my midwife who was going to deliver the baby when the time came. It meant she was familiar with my epilepsy and had a quick contact with my consultant if required. Ironically my epilepsy was the most stable it has ever been whilst I was pregnant and I didn't have a single fit. I gave birth to a lively 9lb baby with no problems. I understand that GP unit care was unusual but I do feel that it worked because I saw the same people throughout my pregnancy and didn't have describe my epilepsy every time I saw a doctor. Follow what your body tells you and rest when you need to.

    Hope all goes well for you.

  • Thank you, another brilliant story, I really agree with you that I should listen to my body, for me it's definitely a good sleep and staying calm and relaxed and eating right food.

    Thank you again, take care x

  • Thank you all very much! Good luck to all of us who are trying to conceive, or are pregnant already or having their little/big angels already :))

  • I've not had the time to read all of the responses so apologies if somebody has already said this. I think what you are doing is fantastic, being v sensible to look after yourself & take folic acid then wait until you've moved house. When my husband & I decided to try for a baby I said I didn't want to be on any type of medication at all. After speaking to my neurologist though I soon changed my mind. I take 300 mg of pregabalin a day & she said that the risks of me being off my medication & having a seizure whilst pregnant are far greater than me not being on medication at all. Eg I could have a seizure & severely hurt myself or the baby.

    Anyway after a long journey which I won't go into we had a very healthy 9lb 10oz baby boy on 27th Feb 2015.

    Throughout pregnancy I was so lucky, I've never felt so healthy or relaxed in all of my life. I loved every single tiny second. I really do wish you well. Keep us posted xx

  • I love the energy coming from your message! Thank you for that, it is great news you are all doing good, congratulations! I just remember what my second neurologist said, that many of his women patients who were pregnant, felt much better during and after pregnancy and some of them never had a seizure again.

    Amazing to hear that your pregnancy was joyful. I believe that my will be the same, it should be the greatest time for every woman, wish all of us could experience it that way! Thank you again, take care xx

  • Hi Lucia. I am 25 and not currently trying to get pregnant.

    I was diagnosed with temporal lobe epilepsy last year and I am on AEDs.

    I am very worried about pregnancy and the risk my medication could pose.

    My neurologist recommended I start taking 5mg folic acid imeddiatly as there are unlikely to be any side effects and two thirds of pregnancies are not planned.

    I've been taking it now for over 6months. No noticeable effects, and taking it reduces some of my anxiety around pregnancy.

    It's been really helpful to read everyone's experiences xx

  • Hi Steph,

    that is good to hear :) I know what you mean, it is better to be ready and prepared yourself and do as much as we can and rest is written somewhere in the stars :)

    Only knowing that I did everything that was in my power is making everything easier. Things I can not control, can not stress me :) I won't let it bother me. 

    And like you said, to read everyone's experiences is also very helpful. I am happy that we can all communicate like this. Thank you all :)

    Take care x

  • Unfortunately I had a second tonic clonic seizure last week so now upped my dosage to 1000mg of epilim. I really don't want to take any more but I have been fine since. I am now nearly 35 weeks and finishing work tomorrow so will be able to get a lot more rest. Hopefully the last few weeks of pregnancy will pass event free :)

  • Awww Amy, I'm so sorry to hear that :( Hope everything is under the control now. You have to do what is best for you and your baby, plus stay positive and look after yourself (I'm sure you do anyway) x Now, when you stopped working, you will have more time to relax and I'm sure that next few weeks will go fast and completely smooth for you! I will be thinking of you, take care! Good luck! Please keep in touch x

  • Amy it is sad to hear you had another seizure but comfort to hear the epilm has it under control 😀 I have read through this thread of messages as my daughter is 15, on epilm and ethuxomide and has epilepsy and although she will not be getting pregnant any time soon, our consultant has advised as she has been seizure free for four years now they would like her to come off the epilm as it is not advisable to take if she was to think about getting pregnant in years to come.  We have thought long and hard and decided not to take her off them yet as she has exams.  Reading all your comments has been so useful to me as sometimes we don't know where to turn for advice, I would also like to say what a brave bunch of ladies you are and wish u all the best xxx ruby X 

  • Sounds good. Epilim is definitely not a good drug to be taking while pregnant but sadly I have tried other meds and they don't work :( 

    I think it would be a good idea if you could try to get her on another medication but you definitely need to wait till its a sensible time. It might be a good idea to think about also getting her on birth control. I know it's probably not something you want to think about while she is so young, but things do happen...

  • Sorry to hear you had another seizure and hope you won't get anymore. Trust the extra dosage of Epilim won't affect you and the remainder of your pregnancy goes well with plenty of rest. x

  • Hi Lucia, my bf and i had twin sons (yes we're gay) and my seizures kicked in about 5yrs after.  You'll be fine Hun if the Poofs can do it so can you.

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