Epilepsy Talk

Catamenial Epilepsy – Do You Have It? | May 2, 2021

Do you notice that your seizures worsen just before your period…or during the first few days…or at mid-cycle?

You could have “catamenial epilepsy,” or hormone sensitive seizures, a tendency for increased seizures related to your menstrual cycle.

The causes of catamenial epilepsy are not totally understood.

It could be an imbalance between your two female sex hormones, estrogen and progesterone, or you may not be producing enough progesterone during the second half of your menstrual cycle.

It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.

Women with partial epilepsy, especially temporal lobe epilepsy, seem to be most likely to have catamenial epilepsy.

And before puberty, girls may have recurrent clusters of seizures each month until puberty, when the seizures become catamenial.

Some theories have been suggested to explain why the menstrual cycle should affect epilepsy, including cyclic changes in the immune system.

It has also been suggested that, rather than the epilepsy itself becoming worse, women’s perceptions of epilepsy frequency before a period may be due to dramatic mood change or premenstrual tension. (Sound familiar?)

One of the main theories, however, is that seizures around periods may be due to fluctuations in the two major reproductive hormones, estrogen and progesterone, which rise and fall in the menstrual cycle.

The effects of those hormones on brain excitability are at the root of this theory.

Estrogen seems to be the “bad guy,” lowering seizure threshold, while progesterone is the “good guy,” offering more protection against seizures and increasing seizure threshold.

And it has been shown that hormones directly change EEG activity.

For example, in one study, an IV injection of estrogen resulted in clinical seizures in 4 of 16 women with epilepsy and activated EEG epileptic-type activity in 11 of these women.

An IV infusion of progesterone decreased this type of activity temporarily in 4 of 7 women with partial epilepsy.

But the question remains, do you actually have catamenial epilepsy or is it stress, lack of sleep or even the effectiveness of your meds?

To start with, it’s a good idea to keep a menstrual diary, charting your seizures as relative to the stages of your period.

Do the seizures occur more often before your cycle begins…during the first few days…or at mid-cycle? 

Next, you might want to have your basal body temperature and your serum hormone levels checked.

And if you do have catamenial epilepsy, don’t despair. Just getting diagnosed is a positive.

Then you can actually do something about it. And there are several options available.

Extra medication the week before menstruation in the form of an “add-on” AED such as clobazam is the most common method of treating seizures around the time of menstruation.

Other methods include treating catamenial epilepsy with the contraceptive pill in efforts to achieve a better balance of hormones.

Another theory is that seizures around menstruation are linked to premenstrual water retention, which upsets the normal balance of the anti-epileptic drug in your body, thus making it less effective.

For this reason, doctors have commonly treated catamenial epilepsy with diuretics to reduce fluid.

Then there’s hormonal therapy — such as progesterone.

When taken in capsule form on a cyclic basis, it may successfully reduce catamenial seizure risk in some women.

Overall, natural progesterone is better tolerated than synthetic agents, but no evidence substantiates whether one is more effective than the other.

I think for many, it might be may be a case of individual preference.

But any way you look at it, having your period and all its accompanying aches and pains is bad enough.

When seizures become part of the mix, it’s like adding insult to injury.

That’s where a doctor comes in. My preference is a female endocrinologist. (Sometimes, men just don’t get it.)

The bottom line is: there’s no reason to live in fear or misery.

Get yourself diagnosed and you could well be on your way to a solution.

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Resources:

https://www.cochrane.org/CD013225/EPILEPSY_treatments-seizures-catamenial-menstrual-related-epilepsy

https://www.cedars-sinai.org/health-library/diseases-and-conditions/c/catamenial-epilepsy.html

https://www.news-medical.net/health/Catamenial-Epilepsy-Diagnosis-and-Treatment.aspx

https://www.epilepsy.com/living-epilepsy/epilepsy-and/professional-health-care-providers/refractory-seizures/potentially-remediable-causes/catamenial-epilepsy

http://emedicine.medscape.com/article/1186482-overview#aw2aab6b3

http://www.epilepsygroup.com/epilepsy-information-sub-detail5-59-18-79/epilepsy-seizure-women-catamenial-menstrual.htm


9 Comments »

  1. I used to have seizures the week before or during my period. My doctor neurologist never said if it was catamenial epilepsy or not. The older that I got,my seizures started happening whenever they felt like it.

    Liked by 1 person

    Comment by jerracy — May 2, 2021 @ 2:45 PM

  2. I hate to say this, but if your doc was male, many are clueless about catamenial epilepsy. Some don’t even believe it exists!

    As far as your seizures changing as you got older, it was probably also a matter of hormones.

    Like

    Comment by Phylis Feiner Johnson — May 2, 2021 @ 2:56 PM

    • Yes,my doctor is a male. My mom and I thought that the seizures were due to my hormones. I was referred to another doctor who gave me some options for hormone treatments. It’s been a few years since I had the treatment to help with my hormones. I thought that the treatment would stop my seizures but it didn’t. When I saw my neurologist in March, I asked about trying the keto diet. Tomorrow starts my second week.

      Liked by 1 person

      Comment by jerracy — May 2, 2021 @ 5:26 PM

  3. It could have also have been your thyroid or your metabolism.

    But never mind, I hope you prosper on the Keto Diet.

    https://www.verywellfit.com/best-keto-cookbooks-4160388

    https://ketosummit.com/keto-recipes/

    https://www.dietdoctor.com/low-carb/keto/recipes

    Like

    Comment by Phylis Feiner Johnson — May 2, 2021 @ 5:34 PM

  4. Thank you for the websites.

    Liked by 1 person

    Comment by jerracy — May 2, 2021 @ 6:54 PM

  5. I had no trouble with periods until my epilepsy started when I was 21, I suddenly started having very heavy periods, PMS, and my sizures happened in the week before along with PMS, had a crotchety old male neuro who yelled it’s female fantasies at me when I asked him about catamenial epilepsy. I think sodium valproate stopped menstruation, I was just 42, no menopausal symptoms, and after that my seizures just happen whenever they want. It’s been suggested I have FND, though no one will confirm it, might that have been the cause?

    Liked by 1 person

    Comment by Gail Barry — May 3, 2021 @ 4:02 AM

    • Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process, so I don’t know how that could be the culprit.

      It’s probably the sodium valporate that crotchety old man neuro gave you. In women, it can change your menstrual cycle, causing delayed or missed periods. https://www.nhs.uk/medicines/sodium-valproate/

      Like

      Comment by Phylis Feiner Johnson — May 3, 2021 @ 9:42 AM

  6. My daughter has catamenial epilepsy We are now using Epidiolex and it stops the seizures.

    Liked by 1 person

    Comment by Tor Harald Jensen — May 3, 2021 @ 5:50 AM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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