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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone Found A Successful Treatment For Catamenial Epilepsy?

A MyEpilepsyTeam Member asked a question πŸ’­
New Port Richey, FL

I was prescribed Depokote 20 years ago but discontinued shortly after due to side effects and it did not control the hormone triggers. I have had auras for the past 20 years but I have now had 2 grand mal seizures in the last 8 months.

November 2, 2022
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A MyEpilepsyTeam Member

I have been trying the birth control for help regulating the hormonal timing (had my tubes tied) I have also been keeping a diary for many years. Unfortunately, I just had another seizure 2 days ago...
Thank you for the kind thoughts

November 3, 2022
A MyEpilepsyTeam Member

Seizures start in your brain.
Catamenial seizures are triggered by your hormones.

The longest I've ever gone without a seizure (in almost 30years), is 121 days.πŸ€—
On top of my regular meds, they put me on "the pill"(24/7).

I probably would have lasted longer without a seizure, but I was only a teenager then. I was still growing so everyone was worried the hormones could hurt me in the long run... so I went off it.

Since then I've had a trigger removed... a VNS implant... name the med I've tried it... tried the Ketogenic diet(twice)... and I still have seizures.

I do know people who have their meds and/or surgery, and never had another seizure again.

Everyone's seizures are different because everyone is different.

I hope you find the treatment for you to free you of your seizures.πŸ˜‡

Write down when your seizures and cycle happen. The good thing about this type of seizure, is that you can have an idea of when you'll have them.☺️

Take Care.

November 2, 2022
A MyEpilepsyTeam Member

Sorry no. I may have always had that kind and just never noticed how bad because Ive had epilepsy since 8 weeks old. I did have a ton during my pregnancies which makes me question it. I did notice that when I hit 40 they came w/ every cylce start and that is every 3 weeks or so. I wish you the best.

November 2, 2022

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