Pregnancy and epilepsy, info?

[girlwithadog]

I went to the OB today. I'm 9 weeks pregnant and when I got diagnosed in April with epilepsy after discussing options with my neuro I decided against taking meds because of the possibility of getting pregnant.
I don't have tonic clonic or drops but a couple every few years, mostly it's simple partials nd I already had one healthy pregnancy so my neuro didn't try to talk me into taking meds, he didn't tell me anything really.
My OB chewed me out today though saying its riskier for unmedicated epilepsy during pregnancy than the risk of the medication, my neuro says differently. They are both specialists in their own field and I'm getting sent to a specialist for a high risk assessment but I wanted to get any ideas or opinions on here of medication vs non medicated during pregnancy and hear Nyone who has done it before.

 

[Zara-Newman]

I was put in a specialist epilepsy center once - there were lots of people there who had kids.
I don't really know a massive amount about their pregnancies but I do know that a few of them came off their meds for the 9 months.
So I am of the 'no meds opinion'

 

[Hand of Blood]

I am on tegretol and had a gorgous baby boy he turned out great!
I was told that tegretol was the more save drug to take durning pregnancy
I had to take folic acid the whole time and iron

I wouldn't have came off my meds for it! I think it would do more damage being off them and having a huge sezure!

 

[Zara-Newman]

Some medication can have an awful effect on your reproductive system. So it really depends on what drugs work for you, no point being on ones that don't work for you and could be awful if you are already on ones that are bad for your reproductive system side effectwise.

 

[QueenieKP]

Would a watch a see approach be an idea?

When I was pregnant (I had t/c seizures) I was told a 1/3 of woman see no change in their seizures, a 1/3 see an increase and a 1/3 see a decrease.

You can ask your OB why they think the risk / benefits of meds are v's the possibility of a simple partial seizure. Then ask yourself the same question?

Myself, I had uncontrolled t/c seizures I was on two meds (for the life of me can't remember which ones) and neuro and midwife discussed dropping one of the meds as they believed the more drugs you were on the higher the risk of birth defects. I was monitored very carefully and had some specialist ultrasounds to rule out cleft palate etc but this was 20 years ago and times have changed. I went for the least meds I could to have and seemed to fall into the 1/3 rd whose seizures improve in pregnancy (though did go status just after conceiving at the time we couldn't figure the cause - 9 months later we had a pretty good answer!).

 

[girlwithadog]

Thank you all for your responses, my main concern now is that I've never taken meds before and have no clue how my body will react either and would need to risk the pregnancy to start, I hear frequently when people are trying new meds it makes the seizures more frequent and when I already don't have tcs or drops but once or twice every few years I just need to weigh the pros and cons with my health care team. I see my neuro and on in four weeks, three until I have the assessment

 

[Zara-Newman]

All the meds come with pros and cons - trust me I have been on and off of enough of them.
But I don't see that they would put you on meds if you don't currently need them before seeing how the pregnacy is effecting your epilepsy.
Maybe an EEG to compare with before and during pregnacy to see if stress on the body is causing more spikes or if you are at more risk of seizure.
They would probably just want to keep a close eye on you.

 

[QueenieKP]

Yep usual disclaimers I'm no medical expert ...

But it seems crazy to put you on meds if your unmedicated and aren't having regular seizures.

Just a thought have you clarified with your OB the type and frequency of seizures your having maybe they've misunderstood? Heard epilesy and somehow assumed your having t/c's all over the place? Shot in the dark I know.

I only ask as when I found out I was preggers it was in A&E and a Dr told me to stop taking all my meds because I was pregnant. Being 18 I listened to my health professional than got a rollicking from my neuro about abrubtly stopping meds. A & E dr clearly did not know his A from his Elbow.

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[girlwithadog]

Thank you all for your replies, my concern is the same, starting meds when my seizures aren't that bad to begin with. I do get frequent simple partials and unknown to me at the time but had quite a bit while I was pregnant with my last child (didn't know I had them at all) but the doctors wrote them off as some strange panic attack but I was having 15-20 of them every day.
I told my OB this but told her as well that my seizures where I lose consciousness only happen every few years and I didn't have one during my last pregnancy (but did three months after I had my daughter)
I meet with my neurologist and the specialist at the beginning of next month, hopefully we can all come up with the safest plan for my situation

 

[Zara-Newman]

Let us know how it all goes.

 

[QueenieKP]

Yep keep us updated, hope you can get all your health specialists singing from the same song sheet. Wishing you also a simple uncomplicated pregnancy and labour x

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[C Ells]

When I was pregnant (20+ years ago!) I was worried about the meds I was taking (Dilantin and Phenobarbitol). Both my OB and Neuro said it was worse to be off meds and have a seizure, causing decreased oxygen to the baby, than to take meds. I can happily report that both of my babies are in college and normal as any young adult.