Hello @hopefullibrarian
First, thank you so much for sharing with us such relevant data! I will share it with my gynecologist.
My seizures also started in puberty, when I was 13 or 14 years old.
Since my diagnosis of epilepsy (temporal lobe epilepsy with sclerosis in my hippocampus, left side) in 2019 (I was 48 years old at that time, and I am 53 today), I have observed a clear relation between my seizures (partial complex seizures) and periods.
So, my epileptologist who has been treating me since 2021, talked to my gynecologist at that time. I belong to this 1/3 of epilepsy patients with refractory epilepsy. What I have been told is that progesterone should be dominant in all my cycle to reduce those seizures caused by hormonal changes. My gynecologist prescribed me a progestogen-only pill (Cerazette), but I did not adapt well to that. My gynecologist together with my epileptologist decided then to go back to my previous pill (this pill does contain estrogen) pausing every 4 to 5 months, when bleeding starts. This has helped me to reduce my seizures from my periods and I am satisfied with it.
I am pre-menopausal as my gynecologist has said. I understood that once my periods stop, my seizures from my hormonal changes will also stop.
Have you discussed with your epileptologist if you could reduce perhaps your AEDs as you are post-menopausal? It is known the impact of some AEDs on bone health. Perhaps your epileptologist could explore alternative treatments to AEDs? I do control my seizures with medical cannabis (CBD), a birth control pill, a diet (taking the gluten out of my diet has reduced my seizures by 60%, and I am now trying an anti-inflammatory diet), and a lifestyle change. I still have seizures (an average of 2 partial complex seizures per month) and in 2024 I have plans to see a medical cannabis specialist (full-spectrum medical cannabis with low THC has controlled my seizures better than just pure CBD), as I see that my epileptologist still knows little about medical cannabis treatment. You said you are having difficulty having an endocrinologist and epileptologist willing to work together. Perhaps a comprehensive epilepsy center (level 4) could help you with that?
Wishing you all the best!
Chris (Santosha)