Conceiving at 36 with Diagnosis of Nocturnal Epilepsy

Posted , 5 users are following.

Hi There,

I was diagnosed 5 years ago after a cluster of 40 Nocturnal Grandmal Seizures in a row and admitted for 5 days in hospital. After coming to I was also paralysed on my right side for 48 hours which was touch and go...

I have come through that now and had no seizures since (5 years) as I am medicated by Lamictal 300mg twice daily and Topomax 100mg twice daily. I do suffer from slight anxiety, panic attacks and mild depression and weight gain which is a battle in itself.

My husband and I are thinking of trying for a child but I am 36 and my Neuro has told me my risks of my age alone are higher and he doesn't really want to change my meds for us to even try.... I feel like we have been robbed of our chance to even try for a child and it has upset us so much. (I know that I need to look after myself too)

My question here is - Are they any other couples in a similar situation that have been given other options? We just feel like our chance has been taken from us without any other options been discussed and it's so frustrating...,

Thanks for reading - any feedback would be greatly appreciated - lots of love?

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5 Replies

  • Posted

    ..jodie - i'm so sorry to read of what you and your husband have been facing; you'd have hoped they'd be asking themselves what they can do to help you make it happen rather than figuring ways to block you!

    first, i'm a single guy so what do i know??

    thing is, your very same question has come up here several times that i've seen, so ploughing through a few discussion threads could prove useful.

    one thing i can tell you is that the concensus seems to be that lamictal (aka lamotrogine) is far and away the least worst of the bunch to see you through a pregnancy.  can't speak to that personally but they are the easier of the 2 types i'm on. ..i think.

    what you need is information and support, maybe ask for a second opinion; talk to one of the epilepsy support groups - pick one you like the look of.  google the google out of google on the matter - i'm guessing you're in the uk..

    talk to your local maternity unit perhaps and ask questions out of your consultant's office.. heck jodie - you and your husband sure can't be the first couple to face this!

    you say..

    'I do suffer from slight anxiety, panic attacks and mild depression and weight gain which is a battle in itself.'

    i ask..

    ..and the surprise in any of that is????

    in truth, considering what you've been facing (let alone the meds themselves) i'd suggest you're doing pretty well and i tip my hat to you both.

    i do wish you the best of luck getting to where you want to be on this - i can see it must be the all encompassing goal for you both.

    if it's of any cheer, my sister had her last one at 42.  the only problem was she named him after me!  wink

    don't lose heart and do keep us posted.


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    • Posted

      p.s. when i say 'you and your husband sure can't be the first couple to face this!' that means there'll already be answers.

      you've just got to follow the footsteps to find them.


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  • Posted

    Hey! So I am a 21 yr old female and am on lamictal also I recently swapped from epilim to lamictal due to some health issues although I chose that particular drug because my neurologist said that was the best one to be taking if you want to have children and apparently Epilim is one of the worst so in a way me swapping was a good thing! I have also read that the odds in having a child whilst having epilepsy are better than you think considering the situation. I think In your case you still have a good chance! I have read a lot about epilepsy and having children and from what I have read you have to plan it and you have to start taking pre natal tablets and other stuff atleast 3 months before trying for a baby. I hope you have some luck and are successful and have a healthy baby all the best ! 😊

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  • Posted

    I was on phenobarb/valium when I had my Daughter, she is now a woman but will always be my baby. This was many moons ago and when I went into labour I had a lot of fits, so it is entirely up to you.  No one can say yes or no.  You must decide yourself and as my Mum said "it is a  pain but at the end of it you have a little baby"  So whatever you decide  I wish you well xx


    Win  xx Also I swore at a nurse lol xxx added that for Levity xx

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  • Posted

    I have never felt like I needed the same discussion more in my life! I'm 36 and on Lamotrigine 275 mg twice daily and Tegretol 200mg twice daily plus Vimpat 100mg twice daily and... Topamax 100mg twice daily. So I basically keep my pharmacist in town in business.

    In the last year my seizures were quite severe. I have tonic clinic seizures and my husband and I would like to start a family. My neurologist has refused to reduce any medications because he's weighing the risk of the mother against the risk to the child. He has however told me the medications I'm on do pose a lower risk to the child with the exception of  topamax (4.5%).

    For the Mom's out there, have you had healthy pregnancies and healthy babies?

    My husband and I are feeling lost right now, Jodie1980 I understand the feeling that you are feeling. 

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