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After being treated for ovarian cancer and tumors removed. Have had grand maul seizures during the week of my period. Also have pituitary

A MyEpilepsyTeam Member asked a question 💭
Jacksonville Beach, FL
March 28
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A MyEpilepsyTeam Member

I have caramial epilepsy and like the AI said, about 50% of women have it and it differs as far as when they feel best or worst - it’s not a streamlined time. Some feel worse the week after their period, some the week before, some during. I felt best during my period when I had no hormones and worst the week before. I was treated at John’s Hopkins for it and we decided to just put me on Norethindrone Acetate (progestin) to stop my period altogether and we recently added an estrogen patch, basically menopause hormone therapy. I definitely tell I have more energy, higher metabolism, sleep way better…. It’s not like being in my 20’s, but I’m way better seizure-wise. Oh and I started Vagi-fem 😉. Your doctor should treat your specific seizure timing, so keep a calendar, even if it’s just to show that the seizures are escalating during that time.

March 29
A MyEpilepsyTeam Member

When my Period began when I was a Teen, it was irregular. When I had my Period, the seizures were worse. I was told my meds would make the Birth Control Pill not effective, so used other measures.

March 29
MyEpilepsyTeam

Are grand mal seizures during your period related to hormonal changes?

It sounds like you may be experiencing catamenial epilepsy, which affects about 42 percent of women with epilepsy. This type of epilepsy is linked to hormonal fluctuations during the menstrual cycle.

Grand mal seizures (now called tonic-clonic seizures) Show Full Answer

Are grand mal seizures during your period related to hormonal changes?

It sounds like you may be experiencing catamenial epilepsy, which affects about 42 percent of women with epilepsy. This type of epilepsy is linked to hormonal fluctuations during the menstrual cycle.

Grand mal seizures (now called tonic-clonic seizures) happening during your period week could be triggered by hormonal changes. Here's what happens:

- Estrogen can excite neurons in the brain, increasing seizure likelihood
- Progesterone has anti-seizure effects and helps protect against seizures
- Right before and during your period, progesterone levels drop to their lowest point

This drop in progesterone combined with estrogen's effects may lower your seizure threshold during this time.

What you should do:

Keep a detailed seizure diary tracking when seizures occur in relation to your menstrual cycle. This information is critical for your neurologist and gynecologist to confirm if you have catamenial epilepsy and determine the best treatment approach.

Your pituitary condition may also play a role in hormonal regulation, so make sure both your neurologist and endocrinologist are aware of all your conditions to coordinate your care effectively.

March 28

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