I thought I’d have a family by now – but changing epilepsy medication changed everything

Lisa, 29, shares how sodium valproate helped her get seizure control and build her independence - and how having to move away from it has changed what she thought her future might look like. 

We’re sharing Lisa’s story so other young people can feel less alone when thinking about epilepsy and their future. 

I was diagnosed with epilepsy when I was around 12 or 13. 

Before that, I’d had seizures that no one had seen. I’d just wake up on the floor and not know what had happened. It wasn’t until I had a seizure a friend witnessed - and she called an ambulance - that I finally got answers and was diagnosed. 

Finding the right medication took time. Like a lot of people, I tried different options and doses. Eventually, sodium valproate (Epilim) was the one that worked best for me. 

At the time, I was told there were risks - especially for women - but as a teenager, I didn’t really understand how serious that was. Sodium valproate gave me seizure control and helped me build my life, so I didn’t think too much about what it might mean for my future until much later. 

Epilepsy affects more than people realise 

I’ve been lucky that my seizures have been controlled for much of my life. 

But epilepsy isn’t just about seizures. It affects your routine, your independence, your confidence, and the way you plan your future. 

The side effects of medication, the need to plan ahead, and the limits epilepsy can bring aren’t always visible to other people. Even close friends and family don’t always realise how much it can affect everyday life. 

I think a lot of us get very good at masking it - just getting on with things and trying to prove ourselves.  

How epilepsy can affect decisions about starting a family 

I’ve been with my husband for 12 years, and we’ve been married for two. 

Like many couples, we get asked about starting a family. I don’t mind the question, but what sits behind it is much more complicated for us. 

We haven’t made a decision yet - but for me, the hardest part hasn’t been deciding whether or not to have children. It’s been knowing that if we even want to think about having a family, I may have to come off the medication that has controlled my seizures for years. 

Sodium valproate helped me get seizure control, build a life, get a good job and keep my independence. Moving away from it now means risking all of that, because there’s no guarantee another medication will work as well. 

It’s forced me and my husband to rethink what we thought our future might look like, and to have difficult conversations about family planning that we never expected to face like this. 

Changing epilepsy medication and what it means for your future 

Right now, I’m in the middle of changing my medication. 

I’m moving away from Epilim onto a newer medication, because the drug that kept me stable for years isn’t considered a safe long-term option if we want to think about pregnancy. 

That’s the hardest part. This hasn’t felt like a choice - it’s felt like having to risk the stability I’ve worked incredibly hard to build, because the medication that works for me is no longer compatible with the future we might want. 

If my seizures came back, it could affect my independence, my ability to drive, my work, and the life I’ve built. That uncertainty is what makes all of this so difficult. 

There’s a lot of focus on the risks of sodium valproate during pregnancy, but less awareness of what women and families go through when the medication that works best for them is no longer a safe long-term option. 

Putting life plans on hold because of epilepsy 

If I’d been asked at 20 what my life would look like at 30, I would have said I hoped to have a family by now. 

But the reality is, I’ve had to put that part of my life on hold - not because we’ve made a clear decision, but because the path towards that future feels so uncertain. 

There’s never really been a “right time” to risk changing medication when work, independence and everyday life could all be affected. It isn’t just about delaying family plans - it’s about weighing up the future you imagined against the stability you have now. 

Epilepsy doesn’t just interrupt moments - it can shape the choices you make about your future. 

Why sharing my story matters 

One of the reasons I wanted to speak out is because I know how isolating this can feel. 

There are so many women and girls facing similar decisions, but it’s not always something people talk about openly. 

I want people to better understand the wider impact of epilepsy, and how decisions about medication, relationships and the future can be more complex than they might seem. 

If sharing my experience helps someone else feel less alone, then it’s worth it. 

I’m still figuring things out - but I’m learning to take it one step at a time.