Sodium Valproate (Epilim)

This post is dedicated to the memories of Daniel and Aimee.

I felt it was about time I did a post on sodium valproate (Epilim), as my brain is in two minds about it. Additionally, everyone needs to be aware of its risks.

Are you fully aware of the risks?

Are you fully aware of the risks?

What is sodium valproate?

Sodium valproate is more commonly known by its brand name, Epilim, and was pretty much the only drug used to treat epilepsy from the 1970s to the mid-1990s. During that time, many people didn’t see themselves as having an alternative, and so went about their lives as normal – doing their job, having a family, and so on.

So what’s the problem?

Well, it’s been known for a while that, should a woman on sodium valproate become pregnant, they faced risks.  However, it’s been recently reported by the BBC and the Guardian (amongst others) that pregnant women on Epilim actually face risks six times those of a woman on no anti-epileptic drugs. Additionally, many women were not told of the possible risks that they faced.  The risks vary from mental defects such as autism, to physical defects such as spina bifida – and smaller mental and physical defects as well. As a woman of child-bearing age, I would want to know if I was on such a drug that dramatically increased my chances of having a child with mental and/or physical defects, so that I could find an alternative (if possible).

My Experience

I was put on Epilim when it was pretty much the ‘only’ drug used in 1995, when I was 11 – and as I wasn’t sexually active then, the neurologist saw it as okay. I was on a relatively small dose and it controlled my epilepsy perfectly. I only had seizures when my teenage hormones got the better of me and I stopped taking the medication (stupid, I know) or the doctor thought I might’ve grown out of it and tried to take me off it himself (he was wrong). The rest of the time, I was fine. I didn’t even know what my ‘trigger’ was as I wasn’t having seizures regularly enough to know!

But when I was about 18, I visited my neurologist for a regular appointment and started discussing potentially having a family at some point in the future (this is all very vague – but is how the conversation went as I didn’t want children until I was around 30). The neurologist then explained that Epilim wasn’t really a good drug for “young ladies” because you cannot be on it if you get pregnant (he then went on to explain about the spina bifida risk), and one of the side effects of Epilim is weight gain (although this hadn’t really affected me, it still wasn’t good for young women). And so we waved goodbye to the Epilim, and hello to a life of turmoil (hence my mixed emotions).

I was put on 5mg of folic acid – to prepare my body and as a precaution – and I have tried pretty much every pregnancy-safe anti-epilepsy drug since. I have yet to find something ‘pregnancy-safe’ that controls my epilepsy, and I am almost 29. Eeek. I’m currently trying to head towards monotherapy on an unresearched drug. Again, eeek. Plus, it might not even work.

If you’re still not sure – read this

Having epilepsy has got me talking to people on forums and Facebook (I only have one friend in the ‘real world’ with epilepsy). One of these friends was on sodium valproate thinking it was safe when she got pregnant. Unlike me, she hadn’t been made aware of the risks. She was told she would never get pregnant and so she was overjoyed when she found out she was expecting. She wasn’t told of any problems but was induced when she was five months pregnant. Unfortunately the baby, Aimee, had Edwards Syndrome, and she lived just a few hours before passing away.

My friend got pregnant again, still on sodium valproate, and still unaware of any problems it may cause. After the loss of her baby, she was over the moon to find out she was expecting again. Scans revealed that the baby had a heart problem but that an operation in the first 24 hours after he was born, but other than that she was having a healthy baby boy. She had to be induced after six months of pregnancy this time. The baby, Daniel, was born with Fetal Valproate Syndrome and just like Aimee, lived for just a few hours before peacefully passing away.

My friend was expecting, on both occasions, to go home with a beautiful little baby. She has said it was especially hard being on the labour ward. I can’t even imagine what it was like to go home with an empty cot and to have a pram which was never used. This is a heartbreaking story but one that needs to be told.

After hearing such a personal and tragic story, I understand why I was taken off Epilim, why I have been on folic acid from such a young age and now I know that I will never go back onto Epilim unless I am 100% certain I will never have any more children.

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About katesds

I was diagnosed with juvenile myoclonic epilepsy when I was 11 (though I was having what the doctors thought were febrile convulsions up until the age of 5). I'm now 28 and have absence and tonic-clonic seizures, triggered by tiredness. I've been on every AED going but it's still not fully controlled. I'm waiting for the magic cure. Epilepsy affects my life in every way but I try not to let it control me. I am not an epileptic, I am me with epilepsy!
This entry was posted in Epilepsy Awareness, General Epilepsy Information, Ladies' Stuff!, Living with Epilepsy and tagged , , , , , , , , , . Bookmark the permalink.

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