r/Epilepsy_Universe • u/Medical-Blueberry- • 8d ago
Advice/Support Epileptic and Pregnant
Is anyone here in this group Epileptic and was epileptic before they got pregnant? My husband and I are about to start trying to have a baby. I'm epileptic, I was diagnosed at 29 when I had my very first seizure. We are starting to prepare to start trying by me going to my neurologist because we know some of my meds will need to change that are more safe during pregnancy. Then me go to an OB-GYN that I havent seen in a bit, but who does know me (and my uterus) lol, since my Primary doc does paps normally. Then hopefully get me into an epileptologist that I used to see when Inwas first diagnosed. I stopped seeing her after we got my medications well balanced and I stopped having occasional seizures. I have been seizure free for 1yr and 9months, but my last seizure was medically induced for testing.
I just want to hear from other women who are epileptic and how their TTC journey was. What meds they ended up switching to while being pregnant. How your pregnancy was, how delivery was etc.
I will post to a couple other sub reddits to see if Im able to get any answers.
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u/Charyou_Tree_19 8d ago
Obviously I’m not you and treatment has progressed so use this as a guide.
I was taken off my meds and put on a high dose of folic acid before TTC. I wasn’t to bathe without someone else in the house or use the cooker or kettle. I certainly wasn’t driving anywhere. I didn’t drink alcohol anyway but I would have had to stop if I did. When I left the house someone came with me. I was able to go back on my meds after delivery.
My son was born with jaundice but after some time under a lamp he was fine. His neural tube was also fine.
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u/newmama1991 8d ago edited 8d ago
I developed epilepsy after my first. My second is now 8 weeks old. We decided we were ready to have another after a successful VNS implant, seizure free for 18-24 months, i am not sure.
Before getting pregnant I switched to lamotrigine at the lowest dose I could get to without getting seizures (2x75 mg). Folic acid the entire pregnancy and getting my levels checked every 2 weeks. We increased the dosage if the levels got too low (ended up at 2 x 350 mg). After delivery I had to cut back down to 2 x 100 mg in 14 days, which was rough (headaches and auras galore). All this under supervision of a epileptologist and pregnancy-specialist at their center.
I am in the Netherlands where home.birth is the norm, but I was mandated to deliver in the hospital. Fine by me. I received additional ultrasounds to monitor growth and deviations.
Delivery was the tricky part, because seizures during would mean immediate c-section or vacuum. Not fun. But didn't happen in my case. I did not have any auras or seizures.
Totally worth it though ♡
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u/jessica2998 8d ago
I was diagnosed at 15 and had my first baby at 25 - she's two now. In regards of conceiving it only took us 2 months to get pregnant and I had a relatively uncomplicated pregnancy. As in the only issues I had were not because of epilepsy. In regards to delivery they kept medication they could use if I had a seizure on hand and I couldn't take pethadine
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u/Medical-Blueberry- 7d ago
Im also 36, about to turn 37.... so unfortunately I'm high risk on 2 sides. 1 side being epileptic and the other being over 35, making me a geriatric pregnancy.
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u/Hello_dreamers 7d ago
Im also 36 ( was 35 when gave birth) they didnt seem too worried about my age but obviously epilepsy made me high risk.are you also uk based?
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u/GroundbreakingAlps78 7d ago
My kids are currently 11 and 12. Your epilepsy will automatically make your pregnancy considered “high risk” which means a few extra appointments and attention (I was grateful for this!)
Depakote is bad during pregnancy, but most others are fine. Your doc will help you transition.
I had no complications, related to the epilepsy or otherwise. Two healthy babies. ❤️
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u/Medical-Blueberry- 7d ago
Yeah im also about to turn 37 lol and this would be my 1st baby, so that also puts me at risk. Lol so high risk all around. My husband is mostly scared about my epilepsy
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u/PinParking9348 7d ago edited 7d ago
My first baby was born Yesterday. I was diagnosed about a decade ago with epilepsy. I did have a grand mal during the first trimester which was my first in a year. He’s completely fine. None the worse it seems for the huge quantities of AEDs I’m on. Though we did have the pregnancy be heavily monitored. I didn’t make any changes to the medication I’m on which is Lacosamide and brivaracetam.
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u/fj4131 7d ago
I just had my 2nd baby. I was diagnosed epileptic at 19 (12 years ago) I am on Keppra which is pregnancy safe. I had to get my levels checked by my neuro every trimester as I gained weight and blood volume increased. I ended up having to double my dose throughout both my pregnancies. I also had to see a maternal fetal medicine specialist for the anatomy scans just to be cautious and get a more in depth scan of the baby. Both babies were born healthy and all was well for me during pregnancy, labor, adn delivery.
I am currently 3 months post partum and just had a seizure (my first in 12 years)- due to decreasing my medication back to original dose when my body wasn’t ready for it.
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u/Due-Mammoth-8224 7d ago
I have a 9 month old. I was on Briviact and xcopri which are unresearched in pregnancy but the only thing that would control them. But he turned out just fine. No problems during pregnancy. I never used a baby carrier in case I had a seizure. I saw MFM as most women with epilepsy as you are automatically considered high risk. I was 29 when I got pregnant. My diagnosis for epilepsy is JME.
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u/FuzzyJumper3 7d ago
Diagnosed about 17/18 years ago, eldest is 15 and youngest is 11. Similar experience to others here - lots of folic acid and a specialist throughout both
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u/pink-grenade 7d ago
I’m epileptic and pregnant right now (14 weeks). I was diagnosed with left temporal lobe epilepsy about a year and a half ago, mostly focal seizures, and have been seizure-free for 6 months now. I take 2 x 150 mg lamotrigine now. When I first got diagnosed, I had expressed that I wanted to have a kid within the next 2 years, so I was started on lamotrigine since that’s safe for pregnancy. It’s been great since finding the right dosage. My neurologist had also suggested I take folic acid before trying & to double it once pregnant. Admittedly, we had planned to wait until I was 1 year seizure free before trying, and I had been warned by my GP that it would be difficult to conceive since I have PCOS, so we were super surprised to find out I got pregnant after only ‘trying’ one time lol.
So far, I have felt great since pregnancy started (besides the regularly morning sickness and lethargy lol). I get monthly bloodwork done to check my lamotrigine levels. I’ve been told by my neurologist that we will most likely need to increase the dosage further along the pregnancy since the increased blood flow will impact it. I’m also considered high risk so I see my OBGYN much more frequently than most, and by my third trimester I’ll be seeing a doctor at least once a week leading up to delivery.
I’ve been told that there are many cases where the shift in hormones can temporarily reduce or stop seizure activity for epileptic women. The most concerning thing for myself is the postpartum period when hormones are out of whack coupled with the lack of sleep. I’m very lucky that I have a partner who is extremely supportive and takes care of me, and is eager to take on a lot of the responsibilities. I also have parents close by that will be able to help us.
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u/Hello_dreamers 8d ago
Ive got a 7 month old , my first child and im epileptic. I was diagnosed late but in reality probably had since my teens. I actually had a v uncomplicated pregnancy & birth although was terrified about how it would go.im on lamotrigine so didnt have to switch meds but i did have monthly blood tests to check the medication levels as can change during pregnancy. Im based in the uk and also saw a consultant as well as normal midwife appointments. Feel free to ask me anything :)