Jane’s story

Published: September 17 2022
Last updated: September 28 2022

Jane talks about her epilepsy and taking sodium valproate

I was diagnosed with Juvenile Myoclonic Epilepsy when I was 12. I remember feeling underwhelmed; I didn’t really fully grasp how it might impact my future life. When I was transferred to adult services, they talked to me about having children. I felt like saying ‘I’m 18! Speak to me in at LEAST a decade’. The biggest challenge for me was working my epilepsy out.

Valproate was the first and most effective medication for me. But the side effects were awful. I gained weight, making me look pregnant, and my hair fell out in large clumps. I had just started high school and felt horrendously insecure.

When I was 15, I had a tonic clonic seizure and was fully awake. It was one of the most terrifying experiences I’ve ever had. I went blind and could hear myself scream. I felt myself clamp down on my tongue. I was diagnosed with PTSD afterwards and had counselling because I was terrified to go to sleep for a long while after (because my seizures happen on waking). But sleep deprivation is also a big trigger for my seizures.

I’m 32 and recently got married, so pregnancy is much less hypothetical now. I take 400mg of valproate daily, along with Keppra. My neurologist says the plan would be to take me off valproate gradually, increase the Keppra and see if that works. So far, nothing has ever worked for me except valproate.

Seizures are terrifying. I’m more worried about my mental health than the seizures. The fear is huge and I don’t know how to manage my anxious thoughts. Hearing about valproate and the risks in pregnancy makes me very anxious too. There’s lot to think about. I’ve just started a new job. I don’t have family near me. It’s very real and it’s very scary.

Whenever it happens, parenting is a huge unknown. Sleep deprivation triggers my seizures and my husband would have to help at night. But like many men, Tom is massively overlooked in this process. It might be me physically having seizures, but it’s him dealing with them.

I am also very anxious for other women. I am very, very lucky. I have a terrific neurologist who looks after me, who I can contact anytime if I’m worried about anything. They have laid out a big plan if I were to become pregnant. They always check I’m still taking my medication. The specialist nurses are also unbelievably supportive. I’m fairly educated about my own condition and about valproate. But I know other women aren’t so lucky.

Read about our sodium valproate campaign

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