Catamenial epilepsy is a condition in which seizures are more likely to occur around the time of menstruation. There are three types of catamenial epilepsy, (C1), that occurs before a period begins, during ovulation (C2), and during the luteal phase, (C3), the time between the ovulation and the next period. Treatment for catamenial epilepsy depends upon if the woman has regular periods, and when the women’s seizures occur during her cycle. Catamenial epilepsy has mostly been attributed to the reduction of progesterone levels and the “reduced sensitivity” in GABA, increasing seizure potential. Therefore, treatments revolve around increasing the progesterone levels through hormonal and nonhormonal treatments for women with regular periods.
In women with “irregular flow”, doctors focus on stopping menstruation altogether through different hormones and birth control options- such as the Depo-Provero, or gonadotropin-releasing hormone (GnHR), which stems from the hypothalamus. Clonazepam has also been shown to help decrease those with catamenial epilepsy, however, as with all benzodiazepines, there is always the sustained risk of dependence.
Despite the prevalence of catamenial epilepsy, with half of women of childbearing age displaying signs of it, it is understudied with no real, tried and true treatment. The Frequency of Catamenial Epilepsy in Female Epileptic Patients of Reproductive Age Group Represented in the Tertiary Hospital makes the point that changing the perspective for single women on hormonal birth control therapies, to another drug to prevent seizures would be an incredibly hard thing to do, especially for women who are younger and yet to become sexually active. The average age for a girl with epilepsy to start her period is relatively similar to women without, around 12 and a half to 12 and three quarters. The average age for women(without epilepsy) to lose their virginity is 17.2 years, while for women with epilepsy it is earlier ( remember that adolescents with epilepsy are statistically more likely to make rash decisions than those without). Despite this fact, there is a time between the menarche (the first period) and the “sexual debut” that some women experience catamenial epilepsy. Is putting a 13 year on birth control a good, ethical choice if it stops her seizures?
The real question here is, why is catamenial epilepsy not studied at the rate it should be? If half of women are displaying signs of having seizures around their period, why is this not a bigger deal? 32% of people who have epilepsy are also on the spectrum, and as a community, we see comorbidities between ASD and epilepsy far more than we see the prevalence of catamenial epilepsy, because people talk about it and scientists study it.
From a review published in October of 2019, “Treatments for seizures in catamenial (menstrual‐related) epilepsy”, it seems that there is little difference between hormonal therapies and the placebo sugar pill. The review ended with the conclusion of low level “evidence of treatment” between hormonal and placebo, a “moderate to low evidence” of no treatment difference between “progesterone and placebo for catamenial epilepsy”. I am unsure whether these disappointing findings are a result of not enough awareness of this issue, leading to a lack of enhanced funding, or because of the complexity of the issue.
I am not a medical professional, but I believe that if you believe you are suffering from catamenial epilepsy you should talk to your OBGYN and your neurologist about the best treatment options, whether that be going on birth control and altering seizure medications. I would also suggest starting a diary, and tracking the times you are having seizures with your periods. That way, it will make it easier when talking to your doctor. As a community, we should be educated on all the comorbidities that epilepsy entail, and in order to be educated, we must promote awareness.
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