Epilepsy and pregnancy

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littlemisshopeful Posts: 6101
Hi. I was wondering if anyone has had an experience of being epileptic and trying to conceive, be pregnant and have given birth. I am interested f people could share those experiences and about the medication they were taking at the time. Thanks.
Ava* Posts: 28
Hi gramurray, I have epilepsy and choose to come off my medication (lamictal) a few months before ttc. Also, I started taking a high dose of folic acid prior to coming off my medication and continued to do so. I dropped to 4mg on the advice of my GP, but am back on the 5mg now. We fell pregnant pretty much straight away, and I've been seizure free since coming off meds. My Irish neuro recommended that I remain on all meds but I feel they tend to over medicate in this country rather than focus on diet, exercise, triggers etc and I really believe you have to be pro active and make your own informed decision. I had a fantastic neuro in Sydney where I lived for a few years, and he always recommended that I try & come off meds if I ever planned to have a baby. I am just over the 3 month mark and will have a scan for spina bifida in 2 weeks - I am beyond worried about this. I'm not recommending that everyone come off their med's prior to ttc, but I had been seizure free for 2 years, so it was the right choice for me - of course there is a lot more to epilepsy than just seizures, and I do intend to go back on my meds asap. Hope this helps!! My Mum has a friend who has had epilepsy all her life and produced 5 beautiful (perfectly healthy) kids whilst on a cocktail of drugs, so everyone is different! Hope that helps *)
redwifey Posts: 2932
Hi there I have epiliepsy, have been seizure free for a year now. Am on Tegretol Retard 200mg twice daily. Luckily I have had no problems TTC (though I had a missed m/c before this pregnancy back in July). Have sailed through the pregnancy and obviously can't answer you on the labour part yet :o0 . I think there is a risk of some defects because of the medication (spinal and sometimes cleft palate) but my scans have been perfect thank god. There was a thread on here some time ago as regards epilepsy and pregnancy - you should find it if you do a search - I am too lazy at the moment :o0 Any questions feel free to ask. The most important thing is that if you are planning TTC and are on epilepsy medication to be on the stronger dose of folic acid - 5mg which is prescription only though if your doctor is like mine you might be on this already. Best of luck.
littlemisshopeful Posts: 6101
Thank you girls. I kept my question quite vague, as I didn't want to bore people with my story. I have been epilim since the age of 13. Only had the occasional really bad fit. I got the neuro team to start reducing my dose with TTC in mind down the line. I then started the flic acid 5mg and I started on lamictal, increasing doses as the epilim was decreased. This started over a year ago. I was on 1600mg of epilim and now I am on 800mg. Not feeling too bad. I have to be careful to always take them though or I will get a bit jerky and as I drive that ould affect me. Before this I would have to be a few weeks before epilim before it affected me. The neuro isn't bothered by the jerking. I think he would only get concerned by something more dramatic. I am on 200mg a day of lamictal and won't be going any higher than that. My neuro is very anxious for me to come off the epilim altogether for TTC, because it is the drug that has the highest rick of neural tube defects and other minor defects. I am getting married in mid August and I will be 37 in October, so I can't afford to wait longer than that before TTC. I hope that I will be down to 500mg by my wedding, if I can stay seizure free on that dose. Obviously I am worried about my ability to conceive because of the drugs{I know my fertility levels are fine} but moreso about the baby to be's health. Does anyone have an opinion, regarding to my particular situation, now that I have explained it here. Thanks.
littlemisshopeful Posts: 6101
Hi girls I contacted an epilepsy specialist, as opposed to a general neuroligist, like I usually see and asked for advice re. my epilepsy and possible pregnancy. I was a bit disheartened at the email he sent back to me as he said that my lamictal would need to be increased in the year, as the epilim is reduced, because the blood levels of lamictal drop and he said that they also drop during pregnancy. The thing is that my neurologist said I couldn't have it increased anymore, yet I am not on the highest dose. Have to see my own neuroligist in July and try to convince him to increase the lamictal. The specialist told me I could make an apt with him though as well, so I might try to see him privately, as want to TTC after wedding in August and God knows how long I would be waiting for an OPD apt.
msdutchie Posts: 35
Hi girls I am not ttc at the moment as am getting married next year but i have discused it with my neurologist. I am on Lamicatal (was on 200 mg a day but when i went on the pill it made the Lamictal less effective and i had to have a seizure). Seems this is now quite common with Lamictal and the pill. Am now on 450 mg a day. Not really happy about being on this much medication so am considering coming off the pill but doc seems to be not too worried as they counteract each other so means there shouldn't be any extra actually in the body. Doc advised that once i come off the pill and ttc i have to reduce my lamictal but then as soon as i become pregnant i have to increase it again as being pregnant has the same effect on Lamictal as taking the pill. It's all a bit confusing but i guess you just have to trust your neurologist and follow his advise
mamabelle Posts: 1101
My goodness - there really seems to be conflicting advice being given. I'm on Lamictal - 100mg twice daily and Keppra 500mg twice daily aswell as the all important Folic Acid 5mg. I would suggest that you all contact the epilepsy pregnancy register. The nurse I dealt with was fantastically helpful. They also have a neurologist that specialises in epilepsy. They deal with pregnant women with epilepsy all day every day so they really are the experts. Also you'll be able to fill in a questionnaire after your babies are born thereby helping others at a later date. http://www.epilepsypregnancyregister.ie/ A word of caution to the poster who reduced meds. I reduced one of my meds as there was an issue regarding breastfeeding - I was fine until about 7 months and then took a partial seizure. So had to go back onto original dose. At 3 months the volume of blood in your system hasn't increased significantly - whereas the bigger you get - the more blood you have in your system and the more diluted medications become etc. Not a criticism - just something to bear in mind. Other than the incident above - my pregnancy and labour were not complicated by the epilepsy at all - my LO is now 6 months old and just found out we're expecting No 2 - so doesn't seem to affect conception either thank god! Best of luck to you all!
littlemisshopeful Posts: 6101
mamabelle, delighted for you. Hopefully the rest of us will be as blessed. Best of luck with the 2nd pregnancy.
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littlemisshopeful Posts: 6101
Hi gubby. Great you're here...yeah, we need more and more contributors here I think. It sounds like you are on a fairly low dose of medication. I don't know keppra very well. Did you look it up to see what effect it can have on a pregnancy and an unborn child? I haven't heard anything about it on that subject, so it might be completely safe. You could try to contact the Dr I have just contacted and get an appointment to discuss it all. He is an expert in epilepsy and does pre pregnancy counselling I think. You can PM me for details if you are interested. :wv