Any Epilim Success Stories out there???

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Helzbelz

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Hello,

I'm new to the forum - I was diagnosed with Epilepsy when I was 16 (I am now 30) and had 2 seizures in my sleep that year- since then I have been on Epilim and everything seems to have been going pretty well.
Now I am looking to start a family and have been hearing some terrible stories about the effects Epilim has on the baby. I am told by my specialist though that as I am on such a low dose (600mg day) the risks are less severe - she has however, given me the option of changing to Keppra. I know it makes sense to change to a safer medication (if in fact it is) but I am simply terrified of something happening to me if I do. On the flip side I dont think i could cope if i was lucky enough to have a baby and something was wrong with it and I could've prevented it.
To cut a long story short, I have read hundreds of forums about this and all I keep reading are the horror stories. I would just like to know if there are many success stories out there that could help me to make a balanced decision?
I dont know if the horror stories I read are related to high doseages or if that's irrelevant.
Thanks for reading!!
x
 
Helzbelz, I don't have epilepsy but can still appreciate what a tough decision you have to make. Here's Epilepsy Action's take on it - notice they say the majority of women who take epilim during pregnancy have healthy babies http://www.epilepsy.org.uk/news/news/epilim-and-pregnancy

However, I did watch the TV programme "The truth about pills and pregnancy" about it last week and it would make me very wary. Have you seen it? I don't remember them saying at any stage that dosage made a difference but perhaps they just didn't go that deeply into it. I'm not trying to scare you, just want you to have as much information as possible. Good luck!
 
JaneC - thanks so much for your quick reply and for the link- interesting to read in the link that doseage does affect things... Just doesn't say what dose :-(
Yeah I did see panorama- to be honest before I watched it I was quite happy to take the risk based on what I'd been told but that completely changed things for me seeing it in real life!
I just wish there was a bit more info - or that I had a crystal ball! Wishful thinking ey!
Thank you though
X
 
The Panorama programme would make anyone think very carefully, I think, especially as it seems things are only now really emerging about the effects sodium valproate can have during pregnancy. My daughter is on lamotrigine, which seems better - here's hoping that's still working for her when the time comes for her to think about children.

It's a different thing but my husband was diagnosed with multiple sclerosis when our kids were little. Thank God we'd already had them by them or I don't know what decision we'd have made. We don't have a crystal ball either though so who knows what is in store for them in the future. I just hope everything goes well for you whatever you decide.
 
Are you in the UK? If so you could ask to be refereed to someone who specialises in in pre pregnancy health / genetic counsellor or be refereed to the epilepsy nurse. As they tend to have a bit more time to talk things over with you than your neuro.

I fell pregnant accidentally at 18 (19 years) ago and were on some of the Oder epilepsy drugs and I think possibly epilim (but not 100% sure as I did so many). I know my seizures were uncontrolled so switching meds or lowering dosages weren't an option, but was advised to take lots of folic acid and at the time the birth defects they were most concerned with we're hair lip and cleft pallet and I had to go to kings college for some super dooper scans.

I had very happy healthy baby boy. My best advice would be not to get as muchadvice before hand and bug your gp for referrals.

Best of luck TTC and working out the right meds for you.

Q
 
Hello! Was just googling about epilim and found your story and I am in a very simular position. I had 2 seizures aged 14 (then one in an EEG with the flashing lights) and was put on 1000mg epilim. No seizures since....Im now 31, and A few years ago I reduced to 800mg and now would like to think about the future so was looking into my medication and started to see the horror stories. It really upset me and I've made an appointment to see the doctor to change to lamotrigone/keppra. I'm really anxious of having a seizure, i dont know if other srugs will work for me (I currently commute 40 miles to worrk so if I lost my licence it would be difficult to keep my job) but I keep trying to think of the bigger picture.
I don't have much advice, but wanted you to know there is someone in your boat!!
 
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I was on epilim from age 18 to about when i was 40 although i thought there were no bad problems i was living on my own i thought it was great seizures down to approx 1 every 12 months but once married i found out that my outlook on things was weird if 100 people said something was black id swear blind it was white now ive been put on lamotragene an its drivingme nuts im spending more time kissing thefloor an i hate it completely
 
lureswinger said:
now ive been put on lamotragene an its drivingme nuts im spending more time kissing thefloor an i hate it completely
Click to expand...

I find that interesting as I was on Epilim as a child and even at 2000mg it didn't control my photic-induced seizures. I went onto Lamotrigine and have been on it for for 18 years with only 3 sleep seizures, all in the past 8 years and 4 months. I went 10 years without a seizure on Lamictal and I pushed it very hard during that time.

I don't register anything photic on my EEG nowadays, however my neurologist might put me onto a small dose of Epilim along with Lamictal and Topamax (nasty) to stop my nighttime myoclonus.
K
 
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