Catamenial Epilepsy Explained: What Every Woman with Epilepsy Should Know
This month’s Epilepsy Explained focuses on catamenial epilepsy with Dr. Alexa King, Epileptologist and Assistant Professor of Neurology at Northwestern University’s Feinberg School of Medicine. In Catamenial Epilepsy Explained, Dr. King answers the following questions.
0:00 Intro
0:15 What is catamenial epilepsy?
1:22 How is catamenial epilepsy diagnosed?
2:14 Who gets catamenial epilepsy?
3:09 How can catamenial epilepsy impact treatment and management of seizures?
6:22 What effect does catamenial epilepsy have on seizure frequency in pregnancy?
6:46 What effect do perimenopause and menopause have on seizures in women with catamenial epilepsy?
7:27 When should a woman consider finding a specialist in catamenial epilepsy and how can she locate one?
8:19 What research needs to be done on catamenial epilepsy?
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Episode Transcript
What is catamenial epilepsy?
Dr. Alexa King:
Catamenial epilepsy is a type of pattern of seizure exacerbation during certain time periods in the menstrual cycle. So there’s a few different types of seizure patterns that we tend to see. One is called C1, which is premenstrual, and that’s where patients tend to have a twofold increase in their seizure frequency around the time of menses. Another is periovulatory, and that’s where patients have an increase in seizure frequency right around the time of ovulation in the middle of their cycle. So in general, it’s at least two or more times increase in their baseline seizure frequency during these specific time periods of menses compared to the patient’s own baseline. What’s really important to consider though is that this is a sensitivity. So it’s kind of in line with certain patients being prone to having a seizure breakthroughs and seizure exacerbations. If they’re sleep deprived or drink alcohol, it’s the same kind of idea. So first and foremost, the patient still has the type of epilepsy that they have, and this is just kind of an add-on to help describe their hormonal sensitivity.
How is catamenial epilepsy diagnosed?
Dr. Alexa King:
Catamenial epilepsy is diagnosed by monitoring your seizure frequency and your cycles over at least three months’ time period and seeing if certain patterns emerge with your seizure frequency during your menstrual cycle. So what’s really helpful is if you monitor your cycle as well as your seizures in either written on a calendar or a seizure tracker app so that you can review these at your upcoming appointment. And what we would ask you to do is monitor your ovulation if you know that and/or the time of your menses and then write down when all of your seizures are happening. And in order to meet diagnostic criteria, you would have to have at least two times increase in seizure frequency at certain points in your menstrual cycle.
Who gets catamenial epilepsy?
Dr. Alexa King:
Catamenial epilepsy can be seen in women of all ages who are of childbearing age. So we can see it as soon as menstrual cycles begin in adolescence all the way through perimenopause. And it’s relatively common. Up to about a third of women with epilepsy may have this type of seizure exacerbation pattern. And it can be seen in patients with all types of epilepsy. We see it both in patients with focal seizures as well as generalized. In patients with a focal epilepsy, it tends to be more common in patients who have temporal epilepsy, particularly left temporal epilepsy, but that’s not exclusive. It can happen with any type of focal epilepsy. In our patients who have generalized epilepsy or generalized seizures, often they tend to have more refractory epilepsy if they tend to have a catamenial pattern, meaning they often don’t respond as well to multiple medications.
How can catamenial epilepsy impact treatment and management of seizures?
Dr. Alexa King:
First and foremost, it’s most important to remember that catamenial epilepsy is a sensitivity to hormones at different times in the cycle. So it is still kind of under the umbrella of epilepsy in general. And so our primary treatments remain, treating the seizures with what we can do best, which is anti-seizure medications and/or using more advanced therapies like surgeries if that’s appropriate in patients who are refractory. So really need to optimize basic medical treatment for epilepsy first and foremost before getting into more specific treatments for catamenial epilepsy. If we’re talking about more specific treatments once we have the baseline seizures optimally treated, then there’s a few different things that have been studied.
One is hormonal therapies and the other is non-hormonal therapies. We think of catamenial epilepsy as being a predisposition to hormonal changes. And so oftentimes people say if it’s a hormone issue, treat it with hormones. And unfortunately that hasn’t shown to be as effective as we had hoped. There’s a few different hormonal changes that can be tried. One is progesterone. In general, we think of progesterone as being a hormone that is kind of anti-convulsant. And so studies have looked at whether progesterone can help with catamenial epilepsy. In general, the evidence is lacking and a lot of the studies are of small numbers, but there does seem to be a small group of people with that C1 or perimenstrual type of catamenial epilepsy. Again, reminder, meaning that their seizures worsen right around the time of menses. That may respond to progesterone. There’s a few different types of ways that people can use progesterone. One is with oral progesterone pills, and another is with medroxyprogesterone acetate, which is an injection that’s given in the arm every three months. So even though the studies are small, there seems to be some data that certain people might respond well to that, and it’s worth a try.
We also will sometimes try to use hormonal contraceptives, like the pill that has estrogen and progesterone it to balance hormones, and their evidence might be lacking, but for some people it does seem to help and make a difference. So it’s definitely important to collaborate with a OBGYN and partner with them in trying some of these hormonal strategies.
Other ways that we can try to treat hormonal seizures are to use extra medications right around the time that seizures might be increased. Particularly, we will use benzodiazepines for this, so things like clonazepam or clobazam. And so what we might try to do is give extra medications right around the time the seizures tend to be worse during that time of month. For example, we might look at a patient’s seizure calendar leading up to their cycle and say, okay, if their menses start and that’s when their seizures ramp up, we might take a look and try to guess about two days prior, give extra medications for one to two times per day for a few days right around that time of high risk to control seizures that way.
Another medication that’s been tried and evidenced is somewhat lacking is acetazolamide, which is kind of a dehydrating medication, and sometimes that will be given in pulses right around the time that seizures worsen as well.
What effect does catamenial epilepsy have on seizure frequency in pregnancy?
Dr. Alexa King:
So far, we have relatively small studies answering this question, but the good news is that that seizure frequency tends to either improve in our patients with catamenial epilepsy or remain pretty similar to their baseline prior to pregnancy. So in most of our patients, seizures aren’t worsening in pregnancy if they have catamenial epilepsy.
What effect do perimenopause and menopause have on seizures in women with catamenial epilepsy?
Dr. Alexa King:
So in the majority of women during perimenopause, we’ll see that the kind of baseline levels of estrogen and progesterone are changing. And so oftentimes this time period can lead to a worsening of baseline seizure frequency. Keep in mind, perimenopause is usually when periods are irregular and spreading out and may last up to a year or two. And so oftentimes during that time period, patients may need a little bit of extra medication, et cetera, because their seizures might worsen. The good news is on the flip side, once menopause hits, most patients’ seizures tend to decrease in frequency and calm down a little bit.
When should a woman consider finding a specialist in catamenial epilepsy and how can she locate one?
Dr. Alexa King:
Keep in mind that first and foremost, we need to treat the underlying seizures with conventional therapies like anti-seizure medications and/or considering epilepsy surgery if that’s appropriate. So it’s reasonable to stick with your neurologist or epileptologist throughout that time period and try to optimize those. If you continue to have seizures during specific time period of your menses, despite adequate treatment with underlying medications, then it may be worthwhile to seek out a provider who specializes in women’s epilepsy. Most academic centers and many private practices will have a provider or two who are interested in women’s health and epilepsy. And so I would recommend you go onto the website and take a look at different providers’ interests and look for someone who specializes in treating women’s epilepsy.
What research needs to be done on catamenial epilepsy?
Dr. Alexa King:
Yeah, there’s a lot of work that needs to be done, unfortunately, because despite this being relatively common, we have really small sample sizes in our current research that’s available. Some of the research is actually quite old, so there’s a lot that needs to be done. It would be helpful to study various different types of hormonal therapies. In particular, there’s a medication called ganaxolone, which is an analog of progesterone, which has shown some promise in different types of treatments and might be a worthwhile treatment to look into the treatment of epilepsy. And really, we just need more prospective studies looking at both treatments and also better understanding the long-term consequences of epilepsy and catamenial patterns.
