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Catamenial Epilepsy and Progesterone Therapy

Epilepsy & Seizures | Last Active: Jul 3, 2022 | Replies (11)

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@lisalucier

Hi, @crstyday40 - welcome to Mayo Clinic Connect. I imagine it's helpful to read the stories from others of things like having seizures before their periods, since it helps to not feel like nobody else is going through this. That is challenging your seizures seem like they are progressively getting worse as time goes by, having up to 6 seizures per day and not feeling that medical cannabis is helping like you'd expected or the VNS on the highest settings, or the highest dose of brivaracetam (Briviact).

I'd like to tag a couple members of this discussion to return, like @ptntrusted2god @kbredimus, and also invite other members to join in like @jakedduck1 @dawn_giacabazi @12271997 @rachelanne @Kaia @user_ch7453696 @9882351045 @historygirl @boston2mayo. I believe many of them can relate to the "Have been on everything, and what's left?" sentiment you expressed.

@crstyday40, you mentioned you have just recently found out you have low progesterone and were prescribed progesterone cream you now use 2x a day. Have you experienced any side effects from the cream?

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Replies to "Hi, @crstyday40 - welcome to Mayo Clinic Connect. I imagine it's helpful to read the stories..."

I haven't actually kept track but it seems every medicine I take works for a couple of weeks maybe a month and then it doesn't. The fact they worked at all encourages my doctors to prescribe larger doses. The larger doses don't work either but that is where I stay. It is like my body takes a couple of weeks to adjust.

This applies to my epilepsy medicine as well as the steroid doses they put me on for ITP. I question whether the medicine does anything after the initial couple of weeks and certainly question the higher doses.