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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 winged on Thu, 2010-10-07 - 17:57

Your statement about the big box stores is ILLUMINATING...no pun intended. Years ago I was in a Wal-Mart in our college town getting pads etc (really the only reason I went there) and would always have terrible panic attack and feeling weird, and now when I think about the physical symptoms it's not unlike the way I feel pre- and post- seizure.

I work at a Best Buy and get a lot of migraines there too, but EVERYONE complains about the lights, so I'm not sure that's about symptoms...our lights just suck.

Does anyone have any tips for charting symptoms? I keep trying to keep a good log, but I'm terrible at remembering to do it. (I know the answer 's going to be "just make it a habit", but, y'know, anything helps.)

Your statement about the big box stores is ILLUMINATING...no pun intended. Years ago I was in a Wal-Mart in our college town getting pads etc (really the only reason I went there) and would always have terrible panic attack and feeling weird, and now when I think about the physical symptoms it's not unlike the way I feel pre- and post- seizure.

I work at a Best Buy and get a lot of migraines there too, but EVERYONE complains about the lights, so I'm not sure that's about symptoms...our lights just suck.

Does anyone have any tips for charting symptoms? I keep trying to keep a good log, but I'm terrible at remembering to do it. (I know the answer 's going to be "just make it a habit", but, y'know, anything helps.)

Re: Catamenial Epilepsy: Finally a solution!

Submitted by hippos58 on Thu, 2011-01-13 - 19:33

     Since 2004 I have been having terrible seizures, at first 3-4 times a year. Now it is almost monthly. It took my good hubby to point out , after a year or so, they always came near my menses or ovulation. 7 years and numerous useless trips to the hospital  later, I came upon these websites. Read your stories...wondered how you cope. Thank goodness I get the rare luxury of being a stay-at-home-mom ( my last one just turned 18 ) !! I have had to restart my life over and over, always being given painkillers and antidepressants. I am only in pain and depressed because of the seizures !! Now I think I've found something. My eye twitches "here and there"  ALOT. Now when I think back ( and that is hard cos I've lost soooo much ) it happened near the episodes. If I was alone I knew cos i bit my tongue. Short of finding help for myself, I search for a warning to help others. I am going to try some form of progesterone med. Not sure yet. Gave up on any docs 2 years ago, so I have not been at all. My poor family just toughs it out with me. I have broken all my teeth, lost most of my memory, have "not much at all" shortterm, and I have had to

 rtype cos I turn words around now......see, I was not noyning ,ugh,paying attention. It could be worse. I have read your story & tthat make me feel bad for you.....No one should feel alone.....you made me cry,cos I did feel all alone, now I know I am not ! thanks so much-Judy

 

     Since 2004 I have been having terrible seizures, at first 3-4 times a year. Now it is almost monthly. It took my good hubby to point out , after a year or so, they always came near my menses or ovulation. 7 years and numerous useless trips to the hospital  later, I came upon these websites. Read your stories...wondered how you cope. Thank goodness I get the rare luxury of being a stay-at-home-mom ( my last one just turned 18 ) !! I have had to restart my life over and over, always being given painkillers and antidepressants. I am only in pain and depressed because of the seizures !! Now I think I've found something. My eye twitches "here and there"  ALOT. Now when I think back ( and that is hard cos I've lost soooo much ) it happened near the episodes. If I was alone I knew cos i bit my tongue. Short of finding help for myself, I search for a warning to help others. I am going to try some form of progesterone med. Not sure yet. Gave up on any docs 2 years ago, so I have not been at all. My poor family just toughs it out with me. I have broken all my teeth, lost most of my memory, have "not much at all" shortterm, and I have had to

 rtype cos I turn words around now......see, I was not noyning ,ugh,paying attention. It could be worse. I have read your story & tthat make me feel bad for you.....No one should feel alone.....you made me cry,cos I did feel all alone, now I know I am not ! thanks so much-Judy

 

Re: Catamenial Epilepsy: Finally a solution!

Submitted by llora428j on Sat, 2011-04-30 - 10:59
After having E for 32 years, seizure free for about half of that, I started having seizures again. When I first started them again it turned outthat I had an ovarian cyst. After being given provera it went down and didn't have any for over a year. Then started having them again. Was tested for another cyst, didn't have one. I had the seizure during my ovulation cycle. Was also tested for premenopause since I was 45. My levels did not indicate that either. That was in Sept. I had another one in Jan. Again during ovulation. Then in March, during ovulation. My gyn says I have perimenopausal dysfunction uterine bleeding. Which means I am releasing an egg along with estrogen, but not putting out the Progestrone . He put me on a low dose of Provera once a day. But I read that it is better to be on natural hormones. So I too bought pro-gest. How did you take it? Did you go by the directions or take it every day. I have not had any seizures on the provera, but have had two auras. I hate having them though because I know a seizure is coming up. I'm just not sure how to take this cream please let me know how you did it. Thanks

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