A Guide To Catamenial Epilepsy
Catamenial epilepsy is a very unique condition, as it’s the only type of epilepsy that is fully gender-specific. And it affects more people than you might think. So I thought it was about time that I covered it here.
What is catamenial epilepsy?
Catamenial epilepsy is a type of epilepsy that causes women to have seizures during certain points of their menstrual cycle. But it’s important to note that, while catamenial epilepsy is its own “type” of epilepsy, it can occur alongside other types.
Furthermore, catamenial epilepsy is a type of refractory epilepsy. Which means that it can’t be fully controlled by medication, and in some cases, may not respond to medication at all.
It’s also quite common, affecting an estimated 10-70% of women with epilepsy. And if you’re wondering why that range is so large, it’s because the lines of what counts as catamenial epilepsy are somewhat blurred. With some people suggesting that the criteria for it needs to be more detailed, and some categorizing it more widely as anyone who has an increase in their seizures due to hormone changes has catamenial epilepsy.
What are the symptoms of catamenial epilepsy?
The symptoms of catamenial epilepsy vary depending on what types of seizures the person has. Since catamenial epilepsy simply exacerbates the seizures that people already suffer from.
So if you have focal seizures, you can expect more focal seizures during certain times of the month. And likewise, if you have myoclonic jerks, you’ll have more during certain points of your cycle.
When can people with catamenial epilepsy expect seizures?
Another unique aspect of catamenial epilepsy is that it’s cyclical. So, to an extent, people with it can learn which times of the month their seizures are worse. And then plan around that knowledge.
However, it’s not quite as simple as only having seizures on your period. As many people assume. In fact, seizure patterns associated with catamenial epilepsy can follow one of three patterns…
Type 1 - Seizures increase right before and/or during periods.
Type 2 - Seizures increase around ovulation.
Type 3 - Seizures increase during the time between ovulation and the next period. (This is known as the luteal phase.)
What causes catamenial epilepsy?
The cause of catamenial epilepsy is predictably straightforward, it all comes down to hormones. And in general, it can be summed up as too much estrogen causing seizures and/or too little progesterone increasing the likelihood of a seizure.
This is because estrogen, and most specifically… estradiol (a type of estrogen released by the ovaries), is known to excite neurons. And as many of you know, seizures are ultimately caused by overexcited (and abnormally firing) neurons.
Progesterone, on the other hand, is somewhat of an anticonvulsant. Since it decreases the excitability of neurons, at least to some extent.
So this means that experts have been able to create some theories as to the causes of all three types of catamenial epilepsy.
Type 1 - If someone is having more seizures right before and/or during their period, it could be because of the rapidly decreasing progesterone levels that are associated with this phase of the menstrual cycle.
Type 2 - If someone is experiencing more seizures around or during ovulation, it could be due to the rise in estrogen!
Type 3 - Finally, those that have an increase in seizures between ovulation and their periods have actually been found to be more likely to have irregular cycles than those that struggle with the other two types of catamenial epilepsy. And the irregular cycles could actually be the cause of their problem! Because in many cases, when you don’t have a period it’s because you didn’t ovulate. And when you don’t ovulate, you never experience the drop of estrogen that you’re supposed to! Meaning that estrogen levels stay high throughout the body until the period arrives, thus increasing seizures throughout this phase.
How is catamenial epilepsy diagnosed?
In order to diagnose someone with catamenial epilepsy, a doctor will need to first diagnose someone with epilepsy (if that hasn’t been done previously) and then take a look at the correlation between the patient’s hormones and their seizures.
To diagnose seizures and epilepsy, the following tests might be used…
An MRI
Or a CT scan
And to diagnose catamenial epilepsy, the doctor might require…
A seizure journal that goes back at least three months.
A corresponding tracker of the person’s menstrual cycle over the past three months.
And perhaps even a blood test to check progesterone levels during the middle of the luteal phase, if they suspect low progesterone is specifically to blame.
How is catamenial epilepsy treated?
Catamenial epilepsy can be rough to treat, hence why it’s labeled as a type of refractory epilepsy. But some potential options for treatment include…
Increasing the anti-seizure medications that the person is already using during the times of the month where they have more seizures.
Adding on an additional medication to the treatment plan that is only taken during those times of the month.
Trying progesterone therapy (more research still needs to be done on this treatment, but it has helped some people)
Taking medications to stop hormone production entirely, such as triptorelin.
Taking something called the Depo-Provera shot, which halts both ovulation and menstruation.
Or even undergoing an ovary-removal surgery, if the seizures are severe enough.
A lot of what determines which treatment plan is necessary depends on how severe the seizures are, as well as whether or not the person’s menstrual cycle is regular.
Catamenial Epilepsy And Pregnancy
One common concern amongst many women with epilepsy is how the condition will affect their pregnancy. And one would assume that catamenial epilepsy in particular… would make family planning even more complex!
But actually, a very thorough study (which I’ll link in my sources) has actually shown that women with catamenial epilepsy might have less seizures and more positive outcomes during pregnancy than women with non-catamenial epilepsy. With some of them becoming temporarily seizure free.
Experts believe this might be due to increased progesterone, as well as the fact that hormonal fluctuations during pregnancy aren’t cyclical.
Of course, pregnancy could look different for every woman with catamenial epilepsy. So some women’s seizures may worsen. And, there’s always the postpartum hormone fluctuations to deal with as well. But more research needs to be done in that area.
Catamenial Epilepsy And Menopause
In terms of female hormones, aside from starting your period and becoming pregnant, there is only one more stage of life that’s more disruptive. And that is menopause! So that’s another major consideration for many women with catamenial epilepsy.
During perimenopause, many women with catamenial epilepsy may actually have an increase in seizure activity. Because during this stage of life, estrogen levels are higher than ever.
But after menopause occurs, the outcome can go one of two ways. Some women with catamenial epilepsy may stop having seizures altogether, or may notice a decrease at the very least. While others will actually respond negatively to the lack of both estrogen and progesterone in the body after menopause is complete, which would result in more seizures.
However, there is some hope for the latter group of women! Because hormone replacement therapy during menopause has actually been met with positive results, much more positive than trying to control hormones while menstrual cycles are still happening (such as through birth control pills).
The Outlook For Catamenial Epilepsy
Anytime you’re dealing with a type of refractory epilepsy, the outlook is never that the condition will be cured altogether. But with the proper treatment, many women with catamenial epilepsy might be able to find some form of seizure control even if it isn’t complete. And there’s always the possibility that seizures will subside after menopause!
The most important thing you can do to give yourself the best chance for a positive outlook is to get diagnosed, and test out the various treatments that are available.
And hopefully more research will be done on catamenial epilepsy in the future, so that even more information will be readily available.
Sources
As always, here’s a list of all my sources. So that you can read more about this topic if you wish, and rest assured that all the information shared in this article is factual.
https://www.epilepsy.com/stories/basics-about-catamenial-epilepsy
https://www.cedars-sinai.org/health-library/diseases-and-conditions/c/catamenial-epilepsy.html
https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/menstruation
https://www.medicalnewstoday.com/articles/catamenial-epilepsy-cause-diagnosis-and-treatment
https://pmc.ncbi.nlm.nih.gov/articles/PMC7849269/
https://pmc.ncbi.nlm.nih.gov/articles/PMC4527138/
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