Hi, I'm new here :)

[frankiesmom]

Hey everyone,

I've just discovered this forum and what a wealth of knowledge.. I wish I had found it 10 months ago after my first seizure.

I had my first seizure in June'17, at about 20 weeks pregnant with my son (first child) - looking back I think it was a partial seizure or two to begin with over a period of 24hrs, and then a tonic-clonic to finish things off. I had my second seizure five days after my son was born (as I was sitting down to breastfeed him nonetheless). Both times I have been emotionally drained for so long afterwards and unable to stop crying -I guess the thought that I might hurt my baby was really terrifying.

I am currently on sodium valproate, but I will be talking to my neurologist/Dr next time I see one of them about changing my meds as I would like to look into having more children in the next few years. TBH I'm completely at a loss as to why I was put on it in the first case - everything that i have read says that it should be the last choice for women of childbearing age. anyhoo..

I would love to hear whether other people have had experiences with first time seizures in pregnancy and whether it was related to anything/just a once-off/happily ever afters...that kinda thing.

Much love to everyone, this is such a confusing and scary journey to be on and it's so lovely to know there is a community of people to help me through this

 

[Nakamova]

Hey frankiesmom, welcome to CWE!

I agree that you should never have been out on Valproate, and that you should switch onto a different med if possible. Is the Valproate fully controlling your seizures? If so, that indicates that you are "medication-responsive" and bodes well for switching to a different medication. Next time around, your OB-GYN and neurologist should make sure they are on the same page in terms of medication and monitoring during pregnancy.

Is there a possibility that your seizures are catamenial? (That is, related to hormonal spikes?) If so you may want to ask your neuro about any appropriate treatments. Though since they often include birth control, I suppose you would hold off for now.

Best,
Nakamova

 

[frankiesmom]

Hey Nakamova, thanks for the warm welcome

I have been on the valproate for nearly 6 months, and thus far I haven't had another one so it appears to be controlling the seizures! I plan on being much better informed when I go into my next neurologist appointment re:medicaton etc. as I was initially told that i could have a pregnancy whilst taking valproate - which isn't correct - so I have lost a little faith in my Dr and Neuro for the time being.

I completely believe that my seizures are related to pregnancy hormones, but I'm not sure how much investigation was done into that at the time of my seizure. I haven't been able to find much information on the relationship between hormones and epilepsy - I know there's a name for it now so thats a good place to start!

Thanks,
Chelsea

 

[Nakamova]

That's great that you have been seizure-free! You have enough on your plate with your kiddo.

Here are a few CWE threads that might be of interest:
http://www.coping-with-epilepsy.com/forums/f20/catamenial-6834/
http://www.coping-with-epilepsy.com/forums/f22/hormones-catamenial-epilepsy-2755/
http://www.coping-with-epilepsy.com/forums/f23/seizures-menstrual-cycle-9959/
http://www.coping-with-epilepsy.com/forums/f23/catamenial-epilespy-6701/

And if you don't mind the medical jargon, here's a good pubmed article on the topic:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3469236/