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Conceiving and having epilepsy.

(9 Posts)
Writerwannabe83 Mon 23-Nov-15 12:58:46

Is there anyone out there who has epilepsy and is TTC?

Especially a woman who takes Lamotrigine smile

littleredfish Wed 25-Nov-15 20:26:37

Hi writer - I am! I take just Lamotrigine and have been on it for about 15 years. My epilepsy's well managed so after discussion with my consultant I made a couple of small changes but have stayed on the same dose etc. Happy to chat on this thread, or PM me if you'd rather? smile

Whoami24601 Wed 25-Nov-15 21:03:16

I'm not TTC, but have 2dc so have in the past. I have well controlled epilepsy, and am on carbamazepine. What is it you want to know?

Writerwannabe83 Thu 26-Nov-15 18:11:44

I have one DS already and prior to TTC I was told to take 5mg Folic Acid for three months before having unprotected sex, so I did.

I'm just curious as to whether the 3 month rule is essential or whether it's just desirable? I've been back on Folic Acid for two weeks and I'm desperate to just start TTC, I don't think I can wait another 10 weeks....

Writerwannabe83 Thu 26-Nov-15 18:14:22

littlered - what dose are you on? I was on 350mg when TTC my first but it had to be increased to 400mg when I hit 20 weeks gestation.

After DS was born my epilepsy nurse decided to just leave me at the 400mg. I feel a bit anxious about TTC this time round on a slightly higher dose....

littleredfish Thu 26-Nov-15 19:11:58

I'm on 150mg. Could you reduce down again before starting, if you're concerned? I haven't looked at the risk curves at a higher dosage so I don't know what difference that would make. I know that from 150mg to 100 the reduction in risk is negligible, but it might be more significant at higher doses. One thing my consultant recommended was to split my dose and take it twice a day rather than once, to even out the amount in my bloodstream. You might already be doing that?

Writerwannabe83 Thu 26-Nov-15 19:53:25

I take 200mg in the morning and 200mg in the evening.

Whilst TTC number 1 I took 175mg in the morning and another 175mg in the evening.

I had regular blood tests whilst pregnant to check my levels weren't dropping but as expected, at 20 weeks they dropped below the therapeutic range and so my dose had to be increased.

I have thought about reducing back down but logically I will probably have to increase back up to 400mg at some point anyway during pregnancy so I would rather not rock the boat in terms of messing with my current dosage...

littleredfish Fri 27-Nov-15 08:01:31

I am completely with you on not rocking the boat which has shaped my approach to epilepsy ever since I was diagnosed!
But given that the first three months are most important in terms of fetal development and the conditions that anti-epileptics are linked to, it might be worth discussing with your nurse reducing for that time even though you'd expect to go back up to 400 again? But that would have to be balanced against risk of rocking the boat - and would also delay TTC...

Writerwannabe83 Fri 27-Nov-15 21:37:12

I suppose I question whether reducing by only 50mg would even be that significant as it's hardly a huge amount.

I guess I will just have to play by the rules and wait for an appointment with my Epilepsy Nurse before TTC'ing even if it does take a few months.

The problem is that It's taken me sooooooo long to convince DH to have a second baby that I want to just crack on before he changes his mind!

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