Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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 nancee23 on Tue, 2009-12-29 - 11:36
Glad someone is finally discussing this.  I had my first grand mal seizure back in Oct. 2001, the day before my husband and I were moving into our new house.  Yeah!!  I went through all the usual test and was totally fine after.  I then had another one in March of this year.  I started having one each month after.  Unfortunately my husband had just changed jobs and we didn't have insurance yet.  The thing we kind of figured out though was that I was having them right around the time that my menstrual cycle started.  My trigger was that I felt like I was having a hot flash.  I've always had irregular periods, I would skip months and sometimes even have 2 in one month.  I used to be on birth control to regulate me, but I was taken off them when I started to get regular on my own.  When we finally got insurance I went to my neurologist and he slowly got me started on Keppra, 1500 mg a day.  I had another seizure after being on it for a month.  We upped it to 2000 mg a day, but I was still having auras(sp), those hot flashes.  He then put me on 300 mg of Vimpat also.  Things are working out well with that.  There are days when I'm a little cranky, but I have been taking a multi-vitamin and extra B vitamins to help with that.  I have to get to my gynecologist to talk about this though and see if he might want to put me back on the birth control.  Want to see if he has heard about this.  If not I think I'm changing doctors to someone that has heard about it.  Going to discuss it with my neurologist and see if he can reccomend someone who does.  Have to see him next month.  Wish me luck!!

Re: Catamenial Epilepsy: Finally a solution!

Submitted by uberzwitter on Thu, 2010-03-11 - 12:58
I also always had very long, irregular cycles. I think birth control evens those out and that helps alot. I think that if your having sz every month, thats a good sign of catamenial E. Mine started at midcycle as small, quick sz and progressively got worst, more intense, longer (almost status-like) until my period started -and suddenly they would stop. I really would recommend working with a nuero thats willing to work with you. However, neither my nuero nor my ob/gyn had much of an idea of how this worked. I did the research online and pretty much advocated for myself. You need to find doctors that will listen and trust you. At this point, I am sz-free for close to a year! I recently switched to a hormonal IUD to see if that would be a better option. I hope this works out for you! I know more women could benefit from this if they knew it was an option.

Re: Catamenial Epilepsy: Finally a solution!

Submitted by Patient01 on Thu, 2010-03-11 - 02:23

I've been seizure-free since I've combined a hormone balancing weight-loss pill (myslimquick.com-under weight loss caplets in light blue) and Keppra xr and zyprexa.

I've been seizure-free since I've combined a hormone balancing weight-loss pill (myslimquick.com-under weight loss caplets in light blue) and Keppra xr and zyprexa.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.