Catamenial epilepsy means that it’s connected to my hormonal cycle. There are three types (I think); type 1 when you have seizures around the time of your period, type 2 when you have seizures when you release lh hormone, the hormone that makes you ovulate, and type 3 (the one I’m not so sure about) when you have seizures at both these times in your cycle.

It was pretty clear with me. I had a progesterin contraceptive implant when I was around 20, when my seizures stopped. It was thought at the time I’d just grown out of my epilepsy. The implant also stopped my periods. 15 years later, thinking of maybe starting a family but knowing it can take a while for my periods to restart I sought advice about whether there could have been a connection between my seizures stopping and the implant (I always had a sneaky suspicion) but I was reassured by an obstetric neurologist that this wasn’t the case. I had the implant removed and two weeks later had a tonic clonic seizure, no period, but then 14 days before every single one of my completely erratic periods I’d have a tonic clonic seizure, and none at any other time.

I use an app designed for women wanting to get pregnant to track my periods, seizure and side effects. It works amazingly well. My neurologist didn’t believe in such a diagnosis, but I was able to get rereferred to another nhs neurologist in London who says it was clearly catamenial epilepsy, put me on Keppra and clobazam and now I’m a year seizure free.

Hope that helps. Happy to answer any other questions you have. In a make dominated world there’s actually very little research into the connection between hormones and seizures.

Lots of people I think are on far too high doses. I’m glad someone else is on less than 1000mg and have their seizures controlled. I think because the research was originally done at 2000mg+ neurologist prescribe vastly over inflated prescriptions.

Back when they tried me on it in the 90’s I think it was the wonderful new miracle drug! Forever a guinea pig I guess... maybe I should stop being such a pain! lol 😜

I'm not sure which type I have but thanks @A MyEpilepsyTeam Member for the information!

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A MyEpile...

Thanks i did have a birthday. Wish I didn't I don't like them because I don't want to get any older 😩 That comment is precious. I would love to try and memories all that but I would probably have seizures cos my memory is stuffed🤣🤣