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Catamenial Epilepsy: Finally a solution!
Fri, 07/10/2009 - 00:08I 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 mickey23 on Mon, 2009-08-31 - 17:25
Re: Catamenial Epilepsy: Finally a solution!
Submitted by stewart1 on Thu, 2009-10-08 - 18:59
Hello! I was diagnosed with epilepsy approximately 7 years ago. It took my doctors about 3 years to diagnose it. Why? Because at first, I was not falling out on the floor, having convulsions, and had no known head injuries. My epilepsy started with paralisis of my arm. For about 3-4 months at a time, my right arm would become paralyzed, and then it would start working again. This happened several times over 3 years. Finally we talked to someone else who had the exact same symptoms, and he let us know that it was because of epilepsy. Shortly there after, I started going into convulsions.
Anywayz, my seizures episodes ALWAYS occur at the offset of my mensturation cycle. I have indescribable cramps, and then begin to vomit. Over the last several months, I have been taken pain reliver, along with my Trileptal for about a week leading up to my cycle. This has controlled the cramps, and kept me from getting so sick and beginning to convulse. Hope that helps somebody!
Hello! I was diagnosed with epilepsy approximately 7 years ago. It took my doctors about 3 years to diagnose it. Why? Because at first, I was not falling out on the floor, having convulsions, and had no known head injuries. My epilepsy started with paralisis of my arm. For about 3-4 months at a time, my right arm would become paralyzed, and then it would start working again. This happened several times over 3 years. Finally we talked to someone else who had the exact same symptoms, and he let us know that it was because of epilepsy. Shortly there after, I started going into convulsions.
Anywayz, my seizures episodes ALWAYS occur at the offset of my mensturation cycle. I have indescribable cramps, and then begin to vomit. Over the last several months, I have been taken pain reliver, along with my Trileptal for about a week leading up to my cycle. This has controlled the cramps, and kept me from getting so sick and beginning to convulse. Hope that helps somebody!
Re: Catamenial Epilepsy: Finally a solution!
Submitted by mattshelley on Mon, 2009-08-31 - 16:48
Holy cra*! Three in one day? The best I have ever done is one grand mal in one day and the aftereffects were a whopping headache and muscle soreness that felt like I had run two marathons in a row. I can't even imagine what three would feel like.
Thank god that the only hormonal thing we men have to suffer with is stupidity.
Matt
Holy cra*! Three in one day? The best I have ever done is one grand mal in one day and the aftereffects were a whopping headache and muscle soreness that felt like I had run two marathons in a row. I can't even imagine what three would feel like.
Thank god that the only hormonal thing we men have to suffer with is stupidity.
Matt