Menopause and Changes In Seizures

Hi Julie, I've been taking seizure medications since I was 10. The Doctors have never been able to control the seizures but they've cut cut them from about 20 to 8 a month. I'm in the Postmenopausal stages now. Most of my seizures come within a weeks time. At times I have a lot more auras and Fast heartbeats during those auras, they last 30 seconds and It takes up to 2 minutes to slow my heart down. The Drs. Told me not to follow the hormone replacement therapy due to developing cancer from it. I have some information from WebMd. I hope this helps.
http://www.webmd.com/epilepsy/guide/your-changing-hormones#2

Thank you for your sharing your story and the article. I wish you the best.

Hi, @carnation and @juliehart4 - just checking in to see how you are doing lately? Are you still noting the same changes in your seizure activity you mentioned previously in this discussion now that you are postmenopausal?

@lynette1975 @techi - have you heard about premenopause, menopause or postmenopause affecting seizure activity?

I don't have any experience with it. I'm going through premenopause so I'm interested in more information too. I have heard that menopause can effect seizure activity. From what I've read seizures can increase during premenopause and menopause and typically decrease again post menopause. Here is a good article about it. Hope it helps. Best wishes to you! 💜
https://www.epilepsy.com/living-epilepsy/women/menopause-and-epilepsy

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.

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)

Hi Chris,
I got a referral to a level 4 epilepsy center a couple of weeks ago, and now have to wait for them to call me to schedule an appointent. They are booked out so far that it could easily be 6 months before I get in to see anyone. Seeing the specific Epileptologist of my choice could take even longer. Such is the U.S. medical system. 🙁
Clearly, you have a great medical team looking after you. What you've acheived gives me hope. The knowledge and experiences you share with us are invaluable.
Thank you!

Hi @hopefullibrarian
6 months, this is amazingly long! I do not know well the health system in the US, but wouldn't it be helpful to try other 4 epilepsy centers? The Epilepsy Foundation has a 24/7 helpline that can perhaps provide you with relevant information in this regard. Here is the link: https://www.epilepsy.com/247-helpline
In another post of our group, I have shared a quote from a Brazilian writer that I share here with you again:
“I didn't win every time I fought, but I lost every time when I stopped fighting” – Cecília Meireles
Let's keep fighting and together. Self-knowledge of epilepsy is empowering!!!
That faith and new hopes continue in ourselves throughout this year that is about to start!
With kindness!
Chris (Santosha)

Good Evening @hopefullibrarian
I have just sent you a private message. Just to let you know.
Chris

Hi Julie,my wife is being treated for Scleoderma with ILD alongwith Epilepsy (Epilepsy being treated since 1982).we have one daughter ,She is not effected with Epilepsy/Seizures.Early Menopausal at the age of 42 ,now she is 57 .She was on Carbamazepine 400mg twice a day till her age 49years-during this period she used have seizures once in fortnight mostly whenever she missed medicine. Accordingly treatng Doctors introduced Clobazam 5mg during 2015 . She used to have seizures once in a month for few seconds with irrelevant talking.She was in ICU during June 2022 for 15days due to drop in spo2 which turned into sepsis .She had seizures during ICU treating Doc introduced Levipil 500mg. By grace of God she survived from sepsis.Now She is free from seizures with medication carbamazepine 400mg twice a day ,Clobazam5mg in morning/10mg in night alongwith Levipil 500mg twice for last 18months .Every day dose is being monitored by me personally post superannuation from Government service.
Hope this information may be helpful to you.Take care , we pray God for early recovery.💐💐