Tegretol XR and Pregnancy

[KelVarQ]

Hello All, Is there anybody out there whose gotten pregnant taking Tegretol XR? My husband and I are now trying to get pregnant and my neurologist originally put me on Keppra and told me both Keppra and Tegretol are safe for pregnancy. I went off the Keppra almost 3 months ago and have yet to start the Tegretol XR. Everything I seem to read about Tegretol and pregnancy doesn't give me peace of mind at all. My neurologist claims it's safe, but yet all the information I read about it says it's not all that safe. Currently I'm taking nothing and dealing with the nocturnal small seizures, but I know if I get pregnant there's a good chance the seizures can get worse and I would be forced to take the med. Obviously my neurologist will prescribe what I ask him too and I'm just wondering how people did with Tegretol XR and pregnancy or if there's a better one out there that I should consider taking. Thanks

[Nakamova]

The newer drugs (like Lamictal, Keppra, and Tegretol) have a lesser risk of birth defects than the older ones, but the risk is still there. All anti-epileptic drugs present some risks to the fetus, which get weighed against the dangers of having a seizure while pregnant. Usually it's an individual call in consult with the doctor, since each case is different. It's ideal to be on only one anti-epileptic drug if you have to be on one, and usually blood levels are checked frequently since med levels can be affected by pregnancy.

Its sounds like your seizures are "relatively mild". In light of that you might want to consider continuing off-meds, but with very close monitoring of your condition. Keep a detailed journal of how you're feeling, particularly if your seizures seem to be increasing in intensity or frequency. Avoid as many stresses as possible, and alert your doctor right away if you're feeling anxious.

[Nakamova]

This might help with your decision: According to recent analyses of data from European and Australian Pregnancy Registries:

"There seems to be a high probability that having seizures during pregnancy does not affect the offspring, except in rare cases, probably in connection to prolonged seizures."

[Loudmouth]

Nakamova, in my situation, I will agree to disagree, as it only took one of my normal seizures to cause the situation I went through at the end of last year. As for side effects from anti-epileptic drug's during pregnancy, From all the information I and my neurologist and my OB-Gyn consultant collected last year, although there isn't that much information available as it's a fairly new drug, they decided that the lowest risk to the fetus comes from the Gabapentin (neurontin) that I am on. There has only been one recorded instance in the UK of a birth defect whilst the mother was taking Gabapentin, and that was Spina Bifida. But the mother did not take the recommended 5 MG/day dose of folic acid, she only took the usual dose of 5microgrammes. If you are attempting to get pregnant, no matter what anti-epileptic drug you are on, you should be put on a dose of 5MG/day of folic acid to prevent this.

[Nakamova]

I hear you. And I realize the statistics are hard to make a decision from, since you can always end up in the percentage of those for whom something goes wrong. I've also heard that Neurontin is one of the best anti-epileptic drugs if you're pregnant. My neurologist (who specializes in women and epilepsy) is a big fan of Lamictal for its track record in pregnancy as well.

[KelVarQ]

Hi Nakamova and Loudmouth Thank You for responding. I now have another question since I'm a bit confused in regards to seizures and pregnancy. My seizures are quite mild (lasting a few seconds only in my sleep and my husband stops them by pressing the dent below my nose above my lip - it's known as the "rescue" spot pressure point). So my question is now (Loudmouth) is it worse for pregnancy to have these seizures? Meaning: Is it better for me to take the drugs? Nakamova, I was under the impression that Tegretol is actually an older drug since that is one of the drugs that the liver has to be monitored. I've tried Lamictal in the past and there's no way I can take that. Never tried Neurontin(simple partial?) but I would imagine most of the drugs are the same in regards to pregnancy side effects and I know about the whole folic acid rule, which I can't imagine anyone wouldn't do in this case. THANKS SO MUCH YOU 2.

[Nakamova]

Yup, you're quite right, Tegretol is not the newest of drugs, but it does have a better track record with pregnancies compared to the real oldies like dilantin or phenobarbitol.

Given that your seizures are relatively mild, I still think the odds are much better if you stay anti-epileptic drug-free while pregnant.

[KelVarQ]

Yes, Nakamova I think you're right that I'm better off with no drugs while pregnant. Obviously if my seizures increase than I'll have to reconsider. The driving part is annoying though, but it's worth the wait. Thanks for getting back to me so quickly.

[Loudmouth]

If your seizures are few and far between or quite mild, then probably the risks of the anti-epileptic drug's probably outweigh the benefits. But if your seizures increase in frquency or severity, GET BACK ON THEM ASAP. A pregnancy with epilepsy will always be classed as a high-risk pregnancy. Most women with E will have no real problems during pregnancy. I was just unlucky. But I didn't have good control before my pregnancy, it was unplanned and although I would like another child, I want to get better control of my seizures first because I don't want to go through the same thing again. If your control is good with medication, don't stop taking it to have a baby, you would be safer to change to something like gabapentin or lamotrigine before falling pregnant. If you don't currently take meds, then just carry on as 'normal' but watch for signs of seizures, and if you do have a seizure whilst pregnant (however mild/short) GO SEE THE DOCTOR STRAIGHT AWAY. Better to be safe than sorry. Good Luck.

[KellyD]

Hello!
I was on Tegretol until I mentioned pregnancy to my neurologist who changed me over to Lamictal. I asked about going off the meds because my seizures are only rather mild as well, only partial seizures with no loss of conciousness but he believed it is safer for me to be on the meds. I would talk to your dr because obviously no meds is better but you don't want to risk you seizures getting worse and passing out/not breathing or falling and hurting yourself or the baby. As you get further along in the pregnancy an awkward fall could cause the placenta to detach or tear. Our paediatrician gave me an article and he wrote a little summary that basically said the risks of problems for the baby on lamictal were 2% and on tegretol were 5%. My neurologist put it in terms of in women without anti-epileptic drug's 1 in 100 will have a baby with abnormalities, in women on anti-epileptic drug's the risks are increased to 2 in 100. If you can't take lamictal then tegretol is probably your next choice, going by the article and the notes our dr gave me. I spoke to every dr I could think of about getting pregnant because I was so worried about what I was reading about risk factors and it was the 2 in 100 that made me feel most comfortable. In the end nature made the decision for me, we weren't even trying! I am currently 20 weeks pregnant on lamictal and so far all is well. We have a scan next week to check for abnormalites but I'm feeling confident that everything will be ok.

[skillefer]

OOhhhh the seizures vs. meds debate. And if you do medicate, which one to use. I just had a baby in July. Now...I had to stay on medication. I have tonic clonics and my seizure activity had gone up. that doesn't happen to all women though. For some, pregnancy means a reduction in seizures. also, when I got pregnant I was on Depakote. 5 years ago when my hubby and I talked to the neurologist about getting pregnant, he was very clear...start taking folic acid NOW ( it helps to lower your chances of birth defects) and understand that NO medicine is 100% safe. It's all a matter of what you're willing to deal with, and understanding what the risks are. For example...
I was switched to Dilantin during the pregnancy. Now, Dilantin is Class C and 10% of women on it while pregnant have had children with some level of birth defect. For me, I wanted to stay on Dilantin. 90% of kids of moms who took Dilantin had NO birth defects. and the ones that showed up the most were asian looking eyes and cleft palate. I'm asian so the eye thing didn't worry me....and my hubby and i have good insurance and the cleft palate is fixable. So honestly, its up to you and your spouse. Just remember that stressing out is going to do more harm and lower your chances for getting pregnant then the meds.