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Menopause and Changes In Seizures
Epilepsy & Seizures | Last Active: Apr 18 4:41pm | Replies (19)Comment receiving replies
This is an old conversation, but on a topic that's been on my mind.
I've had two or three tonic clonic seizures in my lifetime.
I say "two or three" because, what I think was the first one was only witnessed by friends when I was 13 (starting puberty). The second one was at the beginning of perimenopause, and the third at the end of perimenopause.
I've wondered more than a few times, if it's just a coincidence that they happened during times of dramatic hormonal changes.
This is an interesting article in ScienceDirect on the subject: https://www.sciencedirect.com/science/article/abs/pii/S0018506X12001079?via%3Dihub
I started AEDs after the third seizure, and haven't had any since. Now that I'm post-menopausal, it would be nice to know if I would still have seizures, or worse, have more without AEDs. It's so hard to know.
I have advanced osteoporosis--a bad thing to combine with tonic-clonic seizures. I would consider HRTs as treatment for my bone health if I could find an Endocrinologist and Epileptologist who were both on board and willing to work together on a cautious approach.
Of course, there's also the possibility that starting HRTs could bring on a seizure, so it's all a bit of a crapshoot in the end, isn't it?
Neurologists, in my experience, aren't the sort to recommend, or even consider experimentation when you're seizure-free on your current treatment.
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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)