1. < Epilepsy & Seizures

Menopause and Changes In Seizures

Posted by Julie @juliehart4, Jul 26, 2017

Prior to menopause I had been seizure free for 20 years. I have been on seizure medication since the age of six when I was diagnosed with epilepsy. At the age of 48 and premenopausal I started having seizures. Now ten years later post menopause I continue to have the seizures. Medication has not worked and hormone therapy has not worked. My seizures come almost every month and last for about 7-8 days and then they stop. I have tried different medications and even hormone replacement therapy and so far nothing has worked. I am wondering if there is anyone who has had or is having a similar experience dealing with a change in their seizure activity relating to premenopausal or menopausal. If so what have you tried, articles you may have read? My doctor is at a loss and has somewhat given up. I have read articles on Catamenial seizures however these do not apply to me. It's difficult to find any literature about this subject or possible solutions.

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Julie | @juliehart4 | Jan 10 8:56am

Thank you for sharing your story. Sometimes we feel alone with our individual life journey with epilepsy. It helps to be reminded that we are not alone. I am so happy your wife has you by her side and that she is doing better. I will keep you both in my thoughts and prayers.

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msabbygail | @msabbygail | Apr 16 11:57am
In reply to @hopefullibrarian "Hi Chris, I got a referral to a level 4 epilepsy center a couple of weeks..." + (show)
@hopefullibrarian

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!

Jump to this post

I would contact them, don't wait for them to contact you. I am a nurse and work in Internal Medicine and always tell patients to contact scheduling.

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1 reply
Chris Gautier OR Santosha | @santosha | Apr 17 9:20am
In reply to @lynette1975 "I don't have any experience with it. I'm going through premenopause so I'm interested in more..." + (show)
@lynette1975

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

Jump to this post

Hi Everybody,
There is a nice webinar about health in women with epilepsy. At the end of the webinar (48 minutes), it talks about menopause.
Here is the link:
https://www.youtube.com/watch?v=rozCV919P1Q&t=1s
Chris (@santosha)

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1 reply
Julie | @juliehart4 | Apr 18 8:53am
In reply to @santosha "Hi Everybody, There is a nice webinar about health in women with epilepsy. At the end..." + (show)
@santosha

Hi Everybody,
There is a nice webinar about health in women with epilepsy. At the end of the webinar (48 minutes), it talks about menopause.
Here is the link:
https://www.youtube.com/watch?v=rozCV919P1Q&t=1s
Chris (@santosha)

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Thank you for letting us know about this. I listened and it is not really helpful for women in menopause. The very end addresses how anti seizure medication affects bone density. It does not address changes in seizures after menopause. Information in this area does not seem to be adequately discussed anywhere. Most resources focus on seizures during menstrual cycles and pregnancy. This is my frustration.

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2 replies
hopefullibrarian | @hopefullibrarian | Apr 18 3:01pm
In reply to @juliehart4 "Thank you for letting us know about this. I listened and it is not really helpful..." + (show)
@juliehart4

Thank you for letting us know about this. I listened and it is not really helpful for women in menopause. The very end addresses how anti seizure medication affects bone density. It does not address changes in seizures after menopause. Information in this area does not seem to be adequately discussed anywhere. Most resources focus on seizures during menstrual cycles and pregnancy. This is my frustration.

Jump to this post

As a post-menopausal female on an AED (Lamotrigine), who also has osteoporosis, I share your frustration. My seizures are rare, and seem to be stress induced. There is also what I believe to be a link to hormones. My first seizure was when I was in the early stages of puberty, my second at the being of perimenopause, and my third near the end of perimenopause.

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hopefullibrarian | @hopefullibrarian | Apr 18 3:29pm
In reply to @msabbygail "I would contact them, don't wait for them to contact you. I am a nurse and..." + (show)
@msabbygail

I would contact them, don't wait for them to contact you. I am a nurse and work in Internal Medicine and always tell patients to contact scheduling.

Jump to this post

Sadly, I have reached out to them a few times, and they keep telling me that they'll contact me.

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Chris Gautier OR Santosha | @santosha | Apr 18 3:42pm
In reply to @juliehart4 "Thank you for letting us know about this. I listened and it is not really helpful..." + (show)
@juliehart4

Thank you for letting us know about this. I listened and it is not really helpful for women in menopause. The very end addresses how anti seizure medication affects bone density. It does not address changes in seizures after menopause. Information in this area does not seem to be adequately discussed anywhere. Most resources focus on seizures during menstrual cycles and pregnancy. This is my frustration.

Jump to this post

Hi @juliehart4
Perhaps the 24/7 helpline of the Epilepsy Foundation could give you more information. Here is the link: https://www.epilepsy.com/247-helpline
I always got an answer from them when I reached the Epilepsy Foundation through e-mail (I am not in the US).
All my best to you!
Chris (@santosha)

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1 reply
Julie | @juliehart4 | Apr 18 4:00pm
In reply to @santosha "Hi @juliehart4 Perhaps the 24/7 helpline of the Epilepsy Foundation could give you more information. Here..." + (show)
@santosha

Hi @juliehart4
Perhaps the 24/7 helpline of the Epilepsy Foundation could give you more information. Here is the link: https://www.epilepsy.com/247-helpline
I always got an answer from them when I reached the Epilepsy Foundation through e-mail (I am not in the US).
All my best to you!
Chris (@santosha)

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Thanks Chris, I have done that and have not been given any helpful information on my particular situation. I have been battling this since perimenopause, over 15 years now. Four Neurologists , two specialists, I have also been to a level 4 epilepsy hospital and still no solutions. Additionally health insurance only allows you to do so much and then it’s out of pocket.

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Chris Gautier OR Santosha | @santosha | Apr 18 4:41pm

I am sorry to hear that @juliehart4. Have you tried to go to an epileptologist? Before finding my epileptologist, I went to many neurologists who could not provide me with some answers to my questions and treated me as a standard patient. And then I found this epileptologist, who has developed a customized treatment, considering all my issues, like being very sensible to medication, reversing medication action, my kind of epilepsy, etc. My epileptologist speaks directly to my gynecologist regarding all gynecological issues, working together with him.
I hope you find your way and answer to your questions. All the best!
Chris (@santosha)

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