The challenge of refusing a drug that could control your seizures but endanger a child
#SafeMumSafeBaby
Lauren Sutton talks about her struggle not to become reliant on a medication that could control her seizures but that would pose real risks for any future unborn children.
Being a woman and having epilepsy controlled by anti-epileptic drugs (AEDs) is a balancing act long before planning pregnancy.
I have had generalised idiopathic epilepsy since I was 14 years old and luckily I have always asked a lot of questions around every medication suggested and every decision made by my consultants. It is your decision, and you should have an informed choice.
I have always known sodium valproate to have teratogenic properties and as such refused to take it. Refusal to take a medicine on behalf of a child that is yet to even be planned is a huge action when the medication might control your seizures.
I have been offered sodium valproate for at least a decade and only in my thirties have I reached a stage where planning a family might be a realistic possibility. But I did not want to be reliant on a medication that had known negative effects on unborn children.
Balancing seizure control for yourself, whilst taking AEDs that will not cause abnormalities in your unborn child, is not as easy as we would all hope. Everyone responds differently to each medication. What works for some does not provide any control for others and levels needed also vary.
Medication changes and work
When it came to family planning, I needed to make quite radical changes to my AEDs. Although workplaces often want to help, their processes are not all geared up for medication changes.
Even though I was given time off, I still had the anxiety of attending catch-up meetings that were not appropriate when all you want to do is lay down and avoid any triggers. Unfortunately, this lead to my resignation as you become all too aware of just how many battles you can fight.
The combination of the withdrawal symptoms from lamotrigine and the side effects of increased levels of oxcarbazepine were terrible. I felt like the ‘new me’ was a dangerous version of myself.
I could not judge the speed of cars, the world seemed to spin, my words would not come out properly and I was extremely depressed. There was no possibility that I could stay off lamotrigine even if I had not yet had a seizure and it might be good for my pregnancy.
I went back onto lamotrigine and came gradually off clobazam and have remained on lamotrigine, oxcarbazepine and zonisamide.
Looking at the evidence
I am aware that lamotrigine is more widely documented and seen as safer in pregnancy but for me I was not sure if it was controlling my seizures. I have been on it roughly 20 years and had countless tonic clonic seizures, so it seemed sensible to check if I needed to be on lamotrigine.
The other AEDs I am on are less well documented and this causes a level of anxiety, but you can only negotiate with your condition as far as you feel safe. Currently I feel as stable as I can be and have been seizure free for a year, this is a huge milestone for me and changing medications further is not something I am prepared to risk.
Safe hands
I am under the care of a neurologist who specialises in epilepsy and pregnancy and pre the pandemic I met with the prenatal team at the hospital. Once I am pregnant, I feel that I will be in safe hands.
However, I have now had at least two miscarriages in the first couple of months of the pregnancies and in the back of my mind I question, “is it anything to do with my medication?” There is no support at this stage, and I think it is a valid possibility that one of the three medications I am on might just be causing a problem.
Planning our family has involved 10 months of changing multiple AEDs under strict medical guidance, three months of building levels of folic acid and so far, a minimum of two miscarriages. If a couple is not consulting specialists and looking at their options, then the culture needs to change, everyone deserves the best possible information.
So, I support the Safe Mum, Safe Baby campaign because I believe families should be planned with full knowledge. More information needs to be known about every medication and I believe that everyone needs to take responsibility as soon as they start taking their AEDs.
Thank you for taking the time to read my reasons for supporting the #SafeMumSafeBaby campaign.
More information
Find out more about our Safe Mum, Safe Baby campaign.
A report from the Commission on Human Medicines has shown that some of the most commonly prescribed epilepsy medications including carbamazepine, topiramate, zonisamide and phenytoin, pose an increased risk of harm to any baby exposed to them during pregnancy.
It is well established that valproate carries a high risk during pregnancy and should never be prescribed to girls and women of child bearing age unless they are part of a birth control programme.
4-5 babies exposed to carbamazepine during pregnancy are born with a physical birth abnormality. This compares with 2-3 babies in the general population.
Zonisamide increases the risk of a baby being born small than expected, compared with the general population. More research is needed to understand whether taking this drug during pregnancy increases the risk of a baby being born with a birth abnormality or a learning disability.
Lamotrigine and levetiracetam are the safest drugs to take during pregnancy.
Do not stop taking your medication
It is important that no woman should stop taking her medication without consulting her doctor.
All girls and women of childbearing age should be called in for a review with their doctor so they can discuss their treatment options and ensure that they are on the safest possible medication for them.
Any woman who is planning a baby, should be referred to her neurologist.
Letter of support for a review with your GP
Our Medical Director, Professor Ley Sander, has written the following letter to support all women in requesting a review with their doctor.
Download a pdf of the letter here.
More stories
Read about the challenges other women with epilepsy face when thinking about starting a family.