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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!

Submitted by randres on Thu, 2013-02-21 - 15:25

Hi there,

In short, no, an "increase" in hormones would not trigger seizures as hormones do not build up.  They merely fluctuate.  If your body wants to have a menstrual cycle, it will, even if you are on the 3 month pill.  What may be happening is your progesterone is off (too low).  If this is the case, the only way to fix it is to take a low dose Estrogen pill so that your progesterone levels can try to protect you from the seizures.

I should have said this earlier. The reason the doctors don't believe in Catamenial epilepsy or hormones effecting your seizure threshold is because all the research has been with the pill.  The pill has been "proven" not to impact seizures - only the efficacy of your drugs and to shut down ovaries that are causing great fluctuations in hormonal release.  However, research on natural or bio-identical hormones (the kind they use for challenging pregnancies for example) proves that if you have low or greatly fluctuating hormones, natural progesterone will prevent seizures and in many cases facilitate the reduction in your medication.

 

Hi there,

In short, no, an "increase" in hormones would not trigger seizures as hormones do not build up.  They merely fluctuate.  If your body wants to have a menstrual cycle, it will, even if you are on the 3 month pill.  What may be happening is your progesterone is off (too low).  If this is the case, the only way to fix it is to take a low dose Estrogen pill so that your progesterone levels can try to protect you from the seizures.

I should have said this earlier. The reason the doctors don't believe in Catamenial epilepsy or hormones effecting your seizure threshold is because all the research has been with the pill.  The pill has been "proven" not to impact seizures - only the efficacy of your drugs and to shut down ovaries that are causing great fluctuations in hormonal release.  However, research on natural or bio-identical hormones (the kind they use for challenging pregnancies for example) proves that if you have low or greatly fluctuating hormones, natural progesterone will prevent seizures and in many cases facilitate the reduction in your medication.

 

Re: Catamenial Epilepsy: Finally a solution!

Submitted by debbiefabian10@yahoo.com on Wed, 2013-06-19 - 17:14
I am having so many seizures around and during my period! If prescribed estrogen pills do you take them all month or just before your cycle? I am also on birth control and seizure medicine. I cant take this!

Re: Catamenial Epilepsy: Finally a solution!

Submitted by debbiefabian10@yahoo.com on Wed, 2013-06-19 - 17:14
I am having so many seizures around and during my period! If prescribed estrogen pills do you take them all month or just before your cycle? I am also on birth control and seizure medicine. I cant take this!

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