Martha Cronin was diagnosed with epilepsy during lockdown. She was prescribed carbamazepine over the phone by her neurologist with no warning about the risk linked to the drug for any baby during pregnancy. Martha describes how overwhelming it was to learn from her GP about the potential harm her medication could pose if she decided to start a family.
Martha Cronin is 24 and was first diagnosed with epilepsy during lockdown. Her neurologist told her over the phone that she had right temporal lobe epilepsy and that he would be prescribing her carbamazepine.
“He was very blunt,” says Martha. “I did not have any knowledge or understanding of epilepsy so I didn’t know what questions to ask.
“It was only when my GP called me to go through the side effects of carbamazepine that she told me about the possible risks of birth defects during pregnancy and asked whether I was taking any birth control.
“A diagnosis of epilepsy is a lot to take in on its own but to also have to hear that there is this extra thing to get your head around as well is quite overwhelming. It has significant effects on your mental health and coming to terms with everything and what it means.
“I am not thinking of starting a family any time soon but would like to some day and I feel very much in the dark about how that will look.”
Challenges of starting a family
Martha’s seizures are not yet controlled and her dose of carbamazepine is being gradually increased. However, she worries about the challenges she will face if she does gain seizure control and then, in the future, decides she would like to start a family.
“I will have to come off the medication and start again with a safer drug and that could take another six months,” she continues. “And I might start having seizures again. It could be very stressful and would not create a very good environment for trying to conceive.
“I think this should be discussed with women and girls of child-bearing age from the start so that they have the knowledge to make an informed choice about their treatment and are on the safest possible option. If I had had more knowledge at the time, I would have chosen to go with a drug such as lamotrigine, if possible, as this seems to be a much safer drug during pregnancy.
Martha has now asked to be transferred to the National Hospital for Neurology and Neurosurgery and she says: “I will be going to my appointment armed with lots of questions.”
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.
Lamotrigine and levetiracetam are the safest drugs to take during pregnancy.
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.
Read about the challenges other women with epilepsy face when thinking about starting a family.
You can read more about Martha's experience of being diagnosed with temporal lobe epilepsy in her blog.