Does anyone take carbamazepine/Tegretol or Lamotrigine?

Re: Does anyone take carbamazepine/Tegretol or Lamotrigine?

• emmylou78 member

  January 2021

  I take lamotrigine. Our facility uses the lact med database for drugs in pregnancy and lactation. Do you take it for epilepsy? Definitely consult your neurologist. When you say it “wasn’t strong enough” do you mean you were having break through issues? 
  

  
  

  They wanted me to switch to Keppra my last pregnancy, but I refused because I’ve had seizures on Keppra and I felt the risk of a seizure was worse than chance of birth defects. Later, I had many people tell me not to breastfeed on lamotrigine (later this was debunked and I breastfed for 8 months). This time, I consulted my neurologist before getting pregnant. He said that risk of switching the medications was worse than the risk of birth defects. If momma isn’t breathing, baby isn’t breathing! Lact Med now outlines several studies on efficacy of therapy during pregnancy. 

  
  

  I’ve never taken tegretol. I do find it interesting they recommended lamotrigine though. Maybe more science has come around since my last pregnancy. I grabbed some info from the NCBI database. It looks like there is an increased chance of neural tube defects, like spina bifida, which would call for closer monitoring. 
  

  
  

  Hugs mama. I know it wasn’t easy for me when I didn’t want to switch meds. I supplemented formula for a while until I finally got an answer about breastfeeding. It’s definitely important to be aware of medication side effects! But also make the most informed decision. Call the prescribing doctor and see what their opinion is. Your OB sees it from a maternal-fetal perspective, while a neurologist or psychologist (whichever you use it for) sees it from a different perspective.  

  
  

  My baby is a perfectly fine first grader with no cleft palate (most common side effect of lamotrigine— now also somewhat debunked). I knew that as a mom, I was ok with taking a risk for the bigger benefit, but I made sure I was informed and got lots of opinions. 

  

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• oatvllc member

  January 2021

  Thanks for the reply and congrats on your pregnancy + healthy boy
  
  I do take meds for my epilepsy. With my first child, I switched from carbamazepine to lamotrigine 2-3 months before I got pregnant as it's a much "cleaner" drug to take during pregnancy. I started with 200mg, gradually increased to 600mg, and after he was born I felt like I needed even more. I've always been so hesitant about increasing my dosage. My neurologist and I decided it was best to go back to carbamazepine since I'd only need 200mg. 
  
  I then got pregnant with my 2nd while taking 200mg of carbamazepine. I am terrified I've harmed the baby somehow and it has sucked all of the joy out of being pregnant again and seeing the strong heartbeat. My doctor was very matter of fact, not reassuring, and told me I need to do more genetic screening beyond those for +35yo. I'm just... sad and terrified. 
  
  Keppra didn't work for me either, I had several breakthroughs, one so big I ended up sleeping for HOURS after. But it gave me these very cool lucid thoughts/I felt like I was always high on some sort of high that in a way I was sad it didn't work. I was also 24 at the time. I took Lemotragine for 7-10 years until one day I realized I had become completely numb and was always in a fog so I switched to carbamazepine. Overall, I just don't feel my best on lamotrigine, it sucks the life out of me while making me so much more anxious. 
  
  Similarly to you, I can't take the risk of having an episode while pregnant, or ever.
  
  (ok, this was really nice to write out and talk about, i haven't chatter with many about this topic in general!)

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• emmylou78 member

  January 2021

  Was it your OB or neurologist that said to you that you needed switched immediately? 

  
  

  https://pubmed.ncbi.nlm.nih.gov/11934528/
  
  https://pubmed.ncbi.nlm.nih.gov/21127116/
  
  Here’s a couple resources. It looks like the main complication is neural tube defects, hence the recommendations at the end of the first article for additional fetal testing. Since neural tube defects are the major complication, would it even be beneficial changing medications now, since (depending on how far along you are) the neural tube is already closed? I see your OP says 9+1. 

  

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• emmylou78 member

  January 2021

  Tbh, the generic lamotrigine didn’t work for me at all. I switched neurologists and he started me on name brand lamictal ONLY and holy hell.. the difference! He said he’s went before the board of medicine and said that the generic is terrible. I do 200 twice a day. 

  

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• oatvllc member

  January 2021

  It was my OB that recommended I switch ASAP. She said that if Carb doesn't work out for me and I want to switch back to Lam, I can do so in my 2nd or 3rd tri. So switching around to different pills, when I'm 9.3 now is just.. not ideal in my head. Now my baby has the composition of 2 different pills in its system.
  
  What does your Lamictal pill look like? I used to take a round pearl-colored one with a pink dot in the center. They tried to give me generic as well at one point and it definitely didn't work for me either.
  
  What I have is just labeled as a seizure disorder although it's more a muscle disorder: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002546/ but either way, I can't live wo my meds.
  

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