Mom's with Epilepsy — The Bump
High-Risk Pregnancy

Mom's with Epilepsy

What are you taking for medications?
What kind of seizures do you have?
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Re: Mom's with Epilepsy

  • I take zonegran and have grand mal seizures. Haven't had one in 10+ years. I take a lot of extra folic acid.
  • I have complex partial seizures. I went off my medication when we started ttc.
  • I don't have epilepsy but am taking a med commonly prescribed for it, Lamictal. Both my high risk doc and my extremely well versed Psychiatrist said that it is pretty much completely safe. It's been studied for so long, due to need for epileptic women. The only potential side effect was a slightly raised incidence of cleft palate in the baby, but very recent studies show that it is only like 0.01% above average population, which is 2-3%. Doc said he does not prescribe extra folic acid with it, although I did ask. Other meds may call for it.
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  • sarafroggy26sarafroggy26
    First Comment Photogenic
    member
    edited December 2015
    I mostly have grand Mal seizures, but sometimes only partial complex seizures. I was diagnosed with epilepsy at age 2, due to a scar on my right temporal loeb. I am currently on Keppra and it is keeping my seizures under control, I can't be off of medication while TTC or while pregnant. We were given the green light to TTC, by our high risk pregnancy consult, this year. I've also been prescribed PregVit and have been taking it for almost 4 months.
  • I have JME. My last grand mal was 20 years ago. I'm on lamictal 100mg 2x daily. I started prenatals and 3mg folic acid 6 months prior Ttc. Still my baby was born with a cleft palate (palate only, not lip). She is 13mo now and has not had corrective surgery yet. She's too small still.

    For this second pregnancy, I have continued to take folic acid but I stopped taking my lamictal when I found out I was pregnant. I wanted to stay off it for 12 weeks while the baby was developing. By that point the palate should be formed. My new neurologist was ok with that. Although my old one, who I hated, would have shit a brick. So a little after 12 weeks I re-started the lamictal. I'm 21 weeks now. I've gone in for 2 full anatomy scans to look at the palate and I have another one scheduled for next week. Although you can't really see a cleft palate on an us, only a cleft lip. O well
  • Hi ladies @mariaalene and @sarafroggy26 how are your pregnancies going? Any signs of clefts?
    I am epileptic, taking Topamax 100mg daily. Ultrasounds show no signs of a cleft lip, no info on the palate yet... I guess I'll know when he is born.
    Right now I'm kind of worried about having a seizure after or during birth, even on my meds. I've never had a grand mal while medicated, but I have always been stress-triggered on EEGs... And my seizures have always come when I am sleep deprived, or incredibly anxious. I'm not sure what can be done about that though.
    redselig
  • I'm not pregnant but want to get pregnant next year. I've been debating whether to wean off meds or Stay on meds. 

    There seems to be (relatively) a lot of research in regards to rates of birth defects as a result of each type of medicine, but I'm struggling to find research about rates of defects as a result of seizures- what are the chances of my baby being harmed because of my uncontrolled seizures AND in which cases does that happen (pregnant women who have 10 grand mal seizures lasting 4 minutes each every day throughout their pregnancy are bound to be a higher risk than pregnant women having 1, partial seizure lasting 10 seconds each a month). At specifically what point do seizure type, rate, and duration affect a baby? And how? 

    I am am in contact with my neurologist but still want to hear from other people. I'm on carbamazepine xr, clonazepam, (I'm not convinced that they do much) and have about 2 nocturnal complex partial seizures a month, plus sometimes an additional  1-3 complex partial seizures per month during waking hours. Usually last about 1 minute. Once in a blue moon I have a tonic clonic. It's been a couple years. 
    Missingchampagne
  • @Knottie1441464685 Good to hear from you. There's a girl in the May '16 board with uncontrolled seizures who went into preterm labor at 23 weeks, and they were able to stop the labor and get her back under control with bed rest.

    As for myself, I am still on my medications and am currently at 27 weeks. All ultrasounds have shown a normal pregnancy with no defects (knock on wood) so far. I've also been taking a prescription dosage of folic acid since before conception, to lower the cleft palate/lip risk. 

    My current labor plan includes plans for oxygen and restraint in case I do have a grand mal during labor (my seizures are stress triggered, so during hyperventilation and exhaustion I'm considered at high risk). That will assure the baby doesn't lose oxygen or get tossed around or hurt. Then I would probably have to have a c-section afterward, since I would be in no condition to push post-seizure. My neurologist and OB are in touch, and they can deliver IV magnesium to reduce seizure risk as well... Though I've heard that isn't much fun.

    Hoping more epileptic ladies pop up with their own stories.
    maryellenmchill
  • Hi all, 


    I was diagnosed with epilepsy from scar tissue after an injury a few months before I got pregnant. I take Lamictal, and was on 200 mg before pregnancy, and have increased to 600 mg over the course of my pregnancy (8 months pregnant now). I have partial complex seizures, almost always in my sleep. I've been having one every 3 weeks, but this week I had one on Monday and one today. I think the hard time sleeping is causing more
    Missingchampagne
  • kells621kells621
    10 Comments Second Anniversary Name Dropper Photogenic
    member
    edited February 2016
    @Missingchampagne ;, (I'm not sure how to tag you), thanks for your reply! It was really informative to hear your labor plan. Do you (or your doctors) feel anxious about it? You mentioned the meds you take-- do they completely control your seizures? Have you had *any* seizures during pregnancy? (How many, how intense, and what kind?) I've tried practically every medicine (feels like) and have never completely gained 100% control, which is why I'm weighing whether to go off meds (with help of neurologist) for a pregnancy... Why risk birth defects if the meds don't *necessarily* help anyways? (Not sure whether they do..maybe they are helping, just not 100%). 

    Also, does anyone know how/if I can set it up so I get some kind of alert to notify me when people have either replied to me or contributed to this thread in general? 
  • @ejsweatt123  hi.. Sorry to hear your seizure frequency has gone up..Sending positive vibes your way! Up until seizures got a little crazy very recently for me, your typical rate describes my typical schedule (about 2 nocturnal complex partial seizures a month). How do your doctors feel about the rate of your seizures during pregnancy? Are they calm and confident? Do they any specific concerns? 
  • They seem pretty calm. Honestly, my neurologist has made me feel guilty for being pregnant. I had only been diagnosed for about 3 months before I became pregnant, so I guess that is why. Anyway, I call them when I have an unusual seizure or more frequent ones, but they know I've been having them every 3 weeks. I had bloodwork a week or so to test my medication levels and they were normal but on the lower side, which they said is fine. So far I've gone 11 days without one, I'll take it! :)
    Missingchampagne
  • @ejsweatt123 That's pretty terrible that your Neuro gave you crap about getting pregnant. Women with epilepsy have babies all the time!
  • Update on my pregnancy - 30 weeks currently. So far no grand mal seizures, still on my Topamax. The baby still looks good and I have no signs of pre-term labor, thank God (that's listed as a possible side effect on my medication). 
    JennyS86whatsbumpinpumpkin
  • edited February 2016

    I went off of topamax and oxycarbenzapine back in August prior to TTC, and I had an episode last Friday (first one since August..booo!).

    I have a specialist appointment to discuss going back on meds on March 7th. My doctor is hopeful we  might be able to avoid meds, but wants to discuss going back on just the Topamax. I'm super nervous about it, I was on 200mg, but might try going back on half. The doctor said that's reasonable since my tolerance to it is gone. I originally started at 100 mg 10 years ago, and gradually built up.

    I went so long without them I was secretly hoping I didn't need them anymore.

    My issues are also stress triggered, and I feel like my OB isn't taking my fear of having an attack during birth seriously. She just said "Oh you won't be stressed..." I love my doctor, but I really do want to talk about the what ifs on this issue.

    FTM, so I gave her some serious side eye on the whole "you won't be stressed." My neurologist promised to remain on-call surrounding my due date, and said to call her if I start having issues. (She's a new mom, so I think she is maybe a bit more sympathetic than most)

    @missingchampange I knew cleft palate was a possible side effect, I didn't know about pre-term labor. Is there anything else you know about side effect wise I should ask my doctor about? Thank you in advance!




    Missingchampagne
  • DiFazetteDiFazette
    2500 Comments 500 Love Its Fourth Anniversary First Answer
    member
    edited February 2016
    @Missingchampagne - I wanted to respond not because I have a history of seizures, but because I was on IV Magnesium for 3 days due to HELLP with my previous pregnancy.  I hope for your sake, you don't need it.  It's a pretty nasty drug, but if it keeps you and baby safe and its deemed necessary, it's necessary.  They don't administer it lightly.  I was bedridden for 36 hours after my emergency c-section (catheterized) and not cleared to stand up due to high stroke risk post cesarian.  It may be different without the HELLP diagnosis, but if your baby needs to be in the NICU you won't get to see them for a bit. I was also not legally permitted to sign any documents (birth records, surgery releases, blood transfusion releases).  My H had to sign everything on my behalf since Mag slows brain activity, which is why it may be needed with a history of seizure.  FX for all of you ladies that you have healthy pregnancies and deliveries.  
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  • @DiFazette Thanks for letting me know about the magnesium! I had an IV of it on Friday last week when I ended up in the ER and thought it was totally crazy, but I guess that does make sense.

    I'm doing supplements now (above and beyond the prenatal) but now I get the rational behind it, so thanks!




  • Allisun85 said:

    @DiFazette Thanks for letting me know about the magnesium! I had an IV of it on Friday last week when I ended up in the ER and thought it was totally crazy, but I guess that does make sense.

    I'm doing supplements now (above and beyond the prenatal) but now I get the rational behind it, so thanks!

    @Allisun85 - I'm sorry to hear that.  Glad you're out and FX you remain well controlled by the supplements.  I believe Magnesium is a soft tissue relaxant - so brain, heart... most organs will be slowed due to it.  How did you do on the mag?  It was dreadful for me but maybe because I was on it for 36 hours straight?
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  • Hi ladies!
    I'm a first time epileptic mom, 17 weeks pregnant. 
    Prior to getting pregnant, I was taking 300mg of lamictal in the morning and 400mg in the evening. Hadn't had a seizure for 9 years. I had petit mals when I was in grade school that converted to full blown grand mals when I hit puberty. Luckily, after a difficult switch from Depakote to Lamictal, it has been pretty smooth sailing. My seizures have happened in the morning, shortly after waking, when I've missed my meds or have been sleep deprived. 
    I'm terrified of having a seizure, to the point where I have significant anxiety over it. So far, my neurologist has been very understanding. I feel that the risks of having a seizure far outweigh the risks of potential birth defects, so I've been very open to increasing my dosage as time goes on. My healthcare team feels pretty confident that we shouldn't have any problems, though my neurologist has warned that she does not want me in labor for an extended period of time and has suggested a voluntary c-section if things don't progress quickly. 
    I'm very thankful for this board! Being able to connect with women who are going through the same thing is very reassuring! 
    Missingchampagne
  • I was only on it for an hour or so, until the episode broke. I felt like crap, and out of it, but it had been a very long, dramatic, scary day so I can't tell if that was the drip or ... everything else.

    I have an appointment with the neurologist next week, so FX!




  • Allisun85 said:

    I went off of topamax and oxycarbenzapine back in August prior to TTC, and I had an episode last Friday (first one since August..booo!).

    I have a specialist appointment to discuss going back on meds on March 7th. My doctor is hopeful we  might be able to avoid meds, but wants to discuss going back on just the Topamax. I'm super nervous about it, I was on 200mg, but might try going back on half. The doctor said that's reasonable since my tolerance to it is gone. I originally started at 100 mg 10 years ago, and gradually built up.

    I went so long without them I was secretly hoping I didn't need them anymore.

    My issues are also stress triggered, and I feel like my OB isn't taking my fear of having an attack during birth seriously. She just said "Oh you won't be stressed..." I love my doctor, but I really do want to talk about the what ifs on this issue.

    FTM, so I gave her some serious side eye on the whole "you won't be stressed." My neurologist promised to remain on-call surrounding my due date, and said to call her if I start having issues. (She's a new mom, so I think she is maybe a bit more sympathetic than most)

    @missingchampange I knew cleft palate was a possible side effect, I didn't know about pre-term labor. Is there anything else you know about side effect wise I should ask my doctor about? Thank you in advance!

    Those are the "big ones". There have been claims of Topamax being correlated to heart and lung malformations, but I haven't found any studies consistently validating them.
    whatsbumpinpumpkin
  • edited March 2016

    Has anyone taken Gabapentin? That is what my neurologist recommended, and my OB okay-ed. It seems to preliminarily indicate for low birth weight, and pre term labor, but no major malformations. It's a class C since there aren't enough studies.

    I also changed OB's and this new one is taking a much more active approach towards making sure they are prepared to handle anything my body may decide to do during labor, so I feel MUCH more comfortable. It may be completely unneeded, but I would rather address it now and not need it, than not and have it be an issue my husband and I have to make a split second decision on. Or... more likely my husband.




  • I am currently 6w1d and this is my first. I was diagnosed with JME at 19 and have been over 10 yrs seizure free. I was on 600 mg of Kepra 2x a day which I slowly reduced to 1x daily a whole year before ttc. I have been on a high dose folic acid since I can remember. In Nov I stopped taking it completely and feel just fine. I know my triggers in the past have been high stress and lack of sleep. I know I will most likely need to go back on meds after I give birth and I am okay with that, I just want to make sure that all is safe during the developing stages of the pregnancy. I know we are all different and that our bodies react differently to medication and I am hoping for the best for all of us who have epilepsy. 

    Me: 28 <3 DH: 29

    #1 DS: 11/24/2016

    #2 EDD: 11/15/2017


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  • Hi ladies!
    I'm a first time epileptic mom, 17 weeks pregnant. 
    Prior to getting pregnant, I was taking 300mg of lamictal in the morning and 400mg in the evening. Hadn't had a seizure for 9 years. I had petit mals when I was in grade school that converted to full blown grand mals when I hit puberty. Luckily, after a difficult switch from Depakote to Lamictal, it has been pretty smooth sailing. My seizures have happened in the morning, shortly after waking, when I've missed my meds or have been sleep deprived. 
    I'm terrified of having a seizure, to the point where I have significant anxiety over it. So far, my neurologist has been very understanding. I feel that the risks of having a seizure far outweigh the risks of potential birth defects, so I've been very open to increasing my dosage as time goes on. My healthcare team feels pretty confident that we shouldn't have any problems, though my neurologist has warned that she does not want me in labor for an extended period of time and has suggested a voluntary c-section if things don't progress quickly. 
    I'm very thankful for this board! Being able to connect with women who are going through the same thing is very reassuring! 
    Your triggers sound very similar to mine, I have only been on Keppra. I have yet to talk to by OB about the plan regarding extended labor, I am glad you have a plan with your neuro/ob team. This brings up something I had not considered and will make sure to ask questions and plan accordingly. I hope you find something to help reduce your anxiety.

    Me: 28 <3 DH: 29

    #1 DS: 11/24/2016

    #2 EDD: 11/15/2017


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  • @ladybugme101 My triggers are definitely stress, and a change in sleep patterns. So less of a problem if I just sleep less, but on roughly the same schedule, more of a problem if I take a nap because I am tired. I haven't yet thought through how this will jive with a newborn, take it as it comes right?

    Congrats on your pregnancy!



  • Thank you! 
    Just as a quick update:
    I am now 23 weeks and on a "truckload" of Lamictal (my neurologist's words, not mine!) - 600mg in the morning and 600mg in the evening. Our anatomy scan was perfect and I have had no seizures *knock on wood*. 
    Interestingly enough, my neurologist had me screened for pre-natal depression. The anxiety I was having was apparently not normal, and she said it could either have been due to depression or a side effect of the major drop in my Lamictal levels. Since the last increase and after having a good anatomy scan, I've felt much better, so we think it might be related to that. 
    I've only put on about 11 pounds so far, but we have increased my med level several times since I'm  metabolizing it so quickly. I'm glad to report that baby hasn't suffered as a result of this. 
    Hope you all are doing well! 
  • Just an update - I had my baby! I was on 100 mg of Topamax the entire pregnancy and Mason was born 100% perfect!

    As a preventive measure, I was given an IV of magnesium sulfate during labor induction (for 32 hours) which continued during my c-section when the induction failed and for 24 hours after. It is HORRIBLE stuff despite being known to decrease seizure risk, if you can decline it please do. My BP dropped on it, I felt like I was on fire from within, and the worse part was my baby had to be taken in to the NICU because he got high levels of the mag in his own blood ... Causing lethargy and a disinterest in eating. It took four days of being apart from him for his blood levels to drop and for him to be alert enough to consider release. 
  •  @missingchampagne Thank you for the update. The magnesium is something they have offered to me, so I appreciate the heads up. In fact I believe the description was "There is basically no risk..." :o





  • Allisun85 said:

     @missingchampagne Thank you for the update. The magnesium is something they have offered to me, so I appreciate the heads up. In fact I believe the description was "There is basically no risk..." :o


    My poor little boy did not want to wake up even to eat, it was like he was in a coma for the first few days of his life... So he had to be monitored for apnea and hooked up to an IV to be fed in the NICU bc he wasn't eating on his own, all because of the magnesium sulfate. If I had to do it again, I would definitely risk laboring without it knowing that if I did have a seizure, my nurses/doctors would be equipped to assist. Plus I was stable on my medication anyway, so the mag was an abundance of precaution that really just made my son's first week of life unpleasant for no reason.
  • I've had grand mal and partials. I was diagnosed when I was 17 but I know I had partials before that and doctors just don't listen to 7 year olds. According to my MRIs, there is a slight issue on my left temporal lobe that causes them although my doctor still isn't exactly sure why and I admit it makes me nervous that a neurologist doesn't understand that any difference can cause issues and if he doesn't believe me, he can ask my husband who had to catch me mid air before during a grand mal.  My mother is also epileptic and had my sister as is one of my cousins who is the same age and just delivered in May. I take 200 mg of Lamictal in the morning/200 at night but I was on Tegretol before and it just wasn't controlling them. My neurologist prescribed me extra folic acid just to provide more during pregnancy. So far, everything is controlled and I haven't had any seizures in 2 years. Just getting the blood work regularly to check my levels.
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  • Hi,
    I have partial seizures (simple and complex) and have had tonic clonic seizures as well.  I was not controlled pre-pregnancy and seizures have intensified during pregnancy, despite being on meds.  I'm 29+ weeks and leaning towards a planned c-section, as the risk of having a seizure during labor, to me, is much greater than the drawbacks of a c/s.  I'm curious if anyone else has elected to have a c/s b/c of their epilepsy?
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  • benicode said:
    Hi,
    I have partial seizures (simple and complex) and have had tonic clonic seizures as well.  I was not controlled pre-pregnancy and seizures have intensified during pregnancy, despite being on meds.  I'm 29+ weeks and leaning towards a planned c-section, as the risk of having a seizure during labor, to me, is much greater than the drawbacks of a c/s.  I'm curious if anyone else has elected to have a c/s b/c of their epilepsy?
    Due to the risk of seizures during labor, they will likely insist on magnesium sulfate if you go natural. This counteracts the effects of contractions, since it's a relaxant, and makes pitocin and other inducing drugs less effective, too. After 72 hours on that terrible stuff, feeling horrible, trying to induce me... I ended up insisting on a c-section (which was a walk in the park compared to the magnesium sulfate and long induction efforts). If I had to do it again, I would have a c/s in a heartbeat and would be skipping down the hallway with glee on my way to do it, knowing I never had to be on magnesium sulfate again.
  • @benicode I ended up having a emergency C-section because I had a seizure during labour because of the pain. I hadn't had a seizure for over 3 years. I was able to continue with the natural labour with an epidural, however the epidural failed twice so C-section it was. I had a fairly useless obstetric team so wasn't informed about the magnesium sulphate. If/when I get pregnant again I will be having a planned C-section and I will be changing obstetric teams so I'm better cared for. 

    Little boy due July 31st 2016

  • Back to update : I ended up with an emergency C section, and a truly terrible recovery because of the urgent nature of it. (Hospitalized for three weeks, two infections and a blood transfusion) I wish I had listened to my neurologist and gone with a planned C section from the start... I did not get an epidural until I started having issues while pushing. Honestly, laboring was great. While it hurt, yes, it was empowering. I didn't start having issues until I was pushing - the straining triggered an episode. I don't think my OB team was fully equipped to handle it actually, despite having brought it up to them several times. I had a doctor I had never met, and prior to the emergency C section the doctor was asking my husband "How can we help? What do we do?"  Um. You're the doctor?
    The good news - Little guy is totally and completely fine despite the gabapentin. 



  • Hi ladies!
    I have been meaning to come in and give an update for a while now. 
    Made it through the pregnancy, labor, and delivery seizure free! I developed preeclampsia at 38 weeks so they induced me. I was on magnesium and it really wasn't bad at all. Everyone is different I guess! Pushed for 5.5 hours and they finally decided to vacuum her out. 
    I had some horrific vertigo a couple weeks pp because my medication levels were so high. Once we tapered down it was all good. 
    Baby is great!
    Hope you all are doing well! 
    Missingchampagne
  • I have JME and am on 2000 mg Keppra XR and 400 mg Lamictal XR daily. I just had my second child, who's just as healthy as my first was; however, I did have a grand mal seizure 4 days after having my second. Sleep deprivation got the best of me. With my first I almost had a grand mal seizure 4 days after I had him. Were it not for my 2 mg of Ativan that I take when I sense a seizure, I probably would've had one then too. I was told by a lactation consultant, my high risk gynecologist, and my son's pediatrician that both Keppra XR up to 3500 mg daily is safe to take while breast feeding, as is Lamictal XR at my dosage. I don't know what the max safe dosage is for Lamictal XR. Both drugs are Level 2's out of a scale of 5 (5 being the most detrimental to the baby). I think epileptic mothers tend to just think about how their drugs will affect the baby rather than how lack of sleep can affect them, as epileptics. I just caution mothers who really want to breast feed but are susceptible to seizures to take care of themselves when it comes to losing sleep. I just pump now and my husband has been taking the brunt of the night feedings. That's just my case, though. Fortunately for me, I'm not heart broken that my son can't latch on or that I probably shouldn't breast feed at all due to my erratic seizure pattern but I know some women really want that. Just exercise caution. Hope this was helpful. Good luck!
    Missingchampagne
  • *FW

    JME: lamictal 200mg in am, 100 in afternoon, 200 at pm. Clonazepam 0.5mg 2x/day, more if I need it during the day. Depakote 250mg/pm. I also take levothyroxine (hypothyroidism), coumafin (blood thinner for the PE I had), folic acid 4mg, pre-natals and D3 2000ug. Last myoclonic tonic clonic was last Feb, so we're really happy. But, I do have outbreaks of 'twiches' so I take an extra clonazepam. They're mostly 1 week prior to af. 

    I used to be on zonegran but came off it last month, very quickly bc of our happy news. After our mc, we thought maybe I should go back on it but since I was doing well, I stayed off. Only con is my migraines are back. 
    I'm extremely nervous being on depakote since I've heard it's one of, if not the worst med to be on while preggers. But 1 of my neurologists, who's also kind of an OB said she isn't worried bc I'm on such a low dose. 
    The other thing that makes me super nervous is the coumadin. I had to come off it immediately. The docs then put me on lovenox, 2 shots/day and they sting! But again, with the mc I'm going back on Coumadin until we feel ready ttc... more like when I'm ready. I'm seeing a high-risk OB this week. She's supposed to go thru my entire medical record so we can have a plan in place when we start ttc again. Good thing about all of my docs, they're all part of the same teaching hospital... they can just look at my record without me having to sign release forms.
    I swear this next part is epilepsy related. Hubby and I made plans last summer to move to Florida. Sold our condo but we didn't wanna go down right away. 1 of us needed a ft job with benefits. Both of our parents think our plan to move is dead wrong. They're worried I'll drop the little one via epilepsy, so they both wanna be close ICSH. Idk. So that's me, probably went on too much.
    *TW
    Me: 33 DH: 34
    Married 6.5 years
    mc: 12.23.2016 (8 wks)
    ttc: in a few months

  • I have gran mal and have been on lamictal 200mg 2 times a day with my last 3 pregnancy. Doctor told me it was the safest during pregnancy.
  • I had grand mals, last one was almost 10 years ago, controlled with keppra.  I also have a partial seizure occasionally in my left hand (I've had those my entire life but never thought it meant anything til I had my first grand mal at 22). At the beginning of my pregnancy I was on 2000mg keppra but recently had to go up to 2500 bc of the decrease in my levels and increase in left hand activity.  I am worried about possible preeclampsia as I am also on meds for high BP but that's been well controlled as well.
  • It sounds like people on here who took seizure meds during pregnancy didn't have problems with their babies. Now I'm interested to hear from people who did have seizures during pregnancy- did the seizures affect your baby? 
    777lawrence777
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