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Catamenial, anyone?

Fri, 04/07/2017 - 18:06
25 years old. Szrs since 4th grade. On Onfi, Oxtellar XR, & Lamictal XR and vitamins to help the effects of those. Simple Partial. So I normally have my seizures when I am asleep, they wake me up. Last night, I had my first awake one in over a year. (It was also my first one since adding the Onfi). THANKFULLY I was able to feel an aura (not really knowing what my aura felt like, being that they are normally sleep seizures, put my razor down, turn off the shower, get out of the tub, grab a towel, lay on the ground and throw it over me, and then call out for my mom. The thing is, for the past few months, my seizures have been sleep ones and the weekend (I know, weird) before I would start my period. This time, I was 4 days into my period. Optimistically, I thought I was in the clear and the Onfi was my miracle drug, being that I didn't have a pre-period seizure. Not the case :( This one definitely felt different, like I had more control over myself, or more control over my thoughts, rather, and no period of confusion afterwards. So in my opinion, the Onfi at least helped, being that it held off the szr before my period, and this szr was not nearly as intense or as long as others have been. Only downer is that I was awake and doing something. Onto my question. Has anyone found a good way to deal with catamenital epilepsy? I saw a specialist for the first time in February, after my neurologist recommended it, and he said he (a man, so surprise surprise there) didn't see a correlation. I had brought a highlighted calendar of the 2016 AND the start of 2017. There had been a correlation in April, for some reason my body decided to be f***ed up through summer and had no period (YAY for shorts and swimming though!) so nothing through summer, then back in September they started correlating with a wonky month in November when I had 2 periods and no seizure. So it seemed to me like there was at least *mostly* a correlation. I've looked into certain birth controls (Depo shot and the implant/IUDs, as I can't to the pill and Nuva ring creeps me out) that release progestin/progesterone and lower estrogen. Anyone found anything that's helped them out? I have an appt May 1st and want to bring up possible treatments for it, as something he suggested at my last appt was surgery, and just the testing for that freaks me out! tl;dr:Got anything that helps CE?

Comments

I myself have not found

Submitted by tsm4583 on Tue, 2018-08-28 - 14:05
I myself have not found anyone to help with the menstrual cycle correlation of my epilepsy. I was just wondering if you had found anyone?

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