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Catamenial Epilepsy: Finally a solution!

Fri, 07/10/2009 - 00:08

I just wanted to share this with other women on the forum as a possibility for them to entertain if they are one of those cases where their epilepsy is both idopathic and refractory. It took me a long time and several drugs/dosages/siezures to figure this out on my own. I have catamenial epilepsy, meaning that my menstration triggers my seizures. And for many women with epilepsy this is a trigger, but for me this was possibly the biggest one I could pinpoint. I suggested to my nuero that we approach the problem hormonally ontop of my Topamax, and he agreed. I have started taking the Nuvaring, which being localized doesn't interact with the Topamax very much and hasn't given me very many side effects as of yet, which is basically progesterone and a little estrogen.

 I am siezure free now for four months. I have had a few small auras, but that is nothing compared to the number of large seizures I would have every month over the last five years.

I would encourage women who are in similar circumstances to read up on catamenial epilepsy, track their period, and see if maybe there is an alternative present to all the drugs we have been taking. I would be glad to finally lower my Topamax if this works! Everytime I upped it I saw more side effects and minimal results, and thats considering it's been my best drug so far. 

  EDIT: I decided to edit this with an update since I got so many replies. I was on the Nuvaring (and 250 topamax succesfully) for a year and now moved on to the Mirena IUD which has progesterone in it. I am sz-free since that post, well over a year. For me at least, Mirena has proven a good option so far, although some research around the net makes me think it wont last the 5 years because Topamax metabolizes it faster. Still, it's the best option I have right now. A thing about catamenial E. I've come to understand from reading some of the literature...almost all women with E. will have more sz during certain cycles of her menstruation. Catamenial E. is a type of refractory epilepsy. It describes seizures that are uncontrolled by medication and are triggered by hormonal cycles, even when all other sz a patient can have are being controlled. So, I think making that assessment is a crucial one in whether birth control will be a good option for you. Secondly, most doctors are not aware of this, it involves fighting for it, educating yourself, and being self aware. Know what drugs you can and cannot take, know your birth control plans...its a challenge but very feasible to become sz free! I never thought i would have it with the number of sz and the duration I was having, but the same month I got on bc it just stopped.

Comments

Re: Catamenial Epilepsy: Finally a solution!

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Re: Catamenial Epilepsy: Finally a solution!

Submitted by cgarcia4039 on Tue, 2012-12-18 - 04:14
I am fairly certain that I have begun to suffer from catamenial epilepsy. I have had epilepsy since I was 4, but when I was about 15, I began suffering from severe migranes triggered by my monthly period. My neurologist decided that the best way to treat this would be to put me on a three month cycle of birth control. This worked for about 3 1/3 years, until six months ago when I suffered from my first catamenial seizure and the first seizure I had had in 5 years. Originally I didn't think anything of the seizure relating to my period, but when I had a second catamenial seizure this past september, during my next cycle, it dawned on me that the seizure could be triggered by my period. I found this article and a few others like it, which is where I learned about catamenial seizures. Because I am in college and go to school out of town, when I had the second episode, I went to a hospital close to my school. The neurologist I met and spoke with at that hospital said for sure that my siezure was related to my cycle, but when I spoke with my local neurologist via email about it and asked her to verify this she said no way. I am not sure if she just doesn't know about catamenial epilepsy, or doesn't believe in it. Both of which seems strange. Both my mom and i believe that it is catamenial epilepsy, and I am trying to figure out a way to convince my local neurologist of this as well.

Re: Catamenial Epilepsy: Finally a solution!

Submitted by cgarcia4039 on Tue, 2012-12-18 - 04:19
Also, because I haven't had a menstural migraine in 5 years, is it possible that bringing my period back to a monthly cycle would reduce the chance of another catamenial seizure? I have a hunch that it is the hormonal build up of 3 continuos months that is what is triggering the seizures.

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