Epilepsy and Birth Control Pills - Epilepsy Message Board

lacie543 · 04-10-2008, 05:16 PM

This is a strange phenomena and can't find other person in this situation. For thirty years I had epilepsy, every type imaginable. Than when I was about 48, I had an ovarian cyst. My doctor knew that sometimes birth control pills can break these things up. It did. But the pills had a wonderful side effect, I've been seizure free for eight years now. I know it's the pill, because I was told to go off of them (because of my age) and had the worst set of seizures ever. Did this ever happen to anyone else? Now that I am 52, they are saying I'm too old for the pill and must come off it, I know what will happen if I do.

SentenceDoing · 04-11-2008, 08:27 AM

Hello!
You must have Catamenial Epilepsy- seizures that are caused by your fluctuations in hormones. I have the same type, and over the past couple of years have been working with my gyn to find a birth control pill that will stop or lessen my seizures. I came close once where one pill I tried made my seizures a lot less frequent and a lot less intense, but it messed up my cycle. We tried another one which isn't helping at all, and I'm going back to the gyn next week to try another one.
sometimes there's the opposite affect, where the birth control pill can actually make seizures worse.

vickie45 · 04-12-2008, 10:38 AM

hi i too think i have Catamenial Epilepsy- only not EP i really dont know see i had a ovary removed in jan 06 and in sept 06 i staarted having seizures but the drs kept saying panic well i dont hyper ventalate i just drop and the worse the got and the closer i got to meno the more i had them i have eeg,veeg,mri and catscan all normal ,it took me 3 different neuro drs to find one who wenjt by my symtons and he put me depakote xr 1000mgs which i hate they dont seem to be working cause i went 6 mos without one seizure and they are back so im thinking mine are seizures that are caused by your fluctuations in hormones.since iam in meno now so i have appt with gyn and im asking her about this i been on prempro is it the same as the birthcontrol pills im 45 i have everything except the one ovary and tube i had a 9 cm tumor solid but wasnt cancer thank goodness i didnt want the surgery but was scared to have it but was also scared not too .so i think its very possible isnt it i dont have my monthly's anymore i use to have seizures back when i was 4 till i was about to hit teenage yrs then they stopped i went all these yrs without one then after my surgery they came back and i hate living with them.
vickie

lacie543 · 04-12-2008, 10:44 AM

Hello sentencedoing:

Thank you for your reply. Although no doctor has ever said it, it's obvious, yes, I have catamenial epilepsy. My periods were irregular, they got worse around my time..etc. I have never heard of a doctor actually TRYING to find a birth control for epilepsy. Mine was done by accident, and no one believed it worked. But to cut to the chase. I take low egestrol birth controls, lamictal and klonopin. The lamictal was working better than anything else, but I still had seizures. After having less and less seizures, I could almost tell to the day and hour when my period was going to start. This is what made me feel the pills were controlling it. I'm sure your doctor knows that the pills must be low dose because they contain less estrogen. Many people have seizures on regular birth control because of the estrogen, nasty stuff for a person with seizure disorders. However, the low does contain more progesterone, which has proven to actually help control seizures. This is what confuses me. It seems obvious. Oh, I take Low Ogestrol. Good luck.

lacie543

SentenceDoing · 04-14-2008, 07:39 AM

Hi Lacie,
Yeah, I'm trying the birth control pill in addition to my seizure meds (Tegretol and Keppra), because my seizures are only controlled about 80%. I still get them twice a month- with my period and with ovulation. I was actually the one who suggested to my neuro that I try The Pill, and he was like, "Oh yeah, you can work with your Gyn on that." I think he probably assumed I was on some kind of birth control pill already because of my age, even though I tell him like every time he asks that I haven't been sexually active yet! And then he gives me that lecture that when I do, that the birth control pill isn't effective when combined with Tegretol. Doctors shouldn't assume, and shouldn't think people wouldn't follow their instructions.
Anyway, so I asked my gyno about it, and he was like, "Oh yeah!! We can try that! That might work!" So he put me on a lower-dose one at first, and that one did help my seizures, but my cycle became really irregular on that because of the Tegretol interfering with it. So he put me on a higher dose one, but that one is not working for my seizures at all. But he had told me that there are so many different kinds, we can keep trying one until we find one that works.