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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 rachelr917 on Sat, 2012-05-05 - 18:39
Thank you so much for your post! For years I've taken lamictal and it has controlled my seizures EXCEPT when I was ovulating. My neuro kept jacking up the dose of lamictal which just made me tired and spacey all day long. But when I came across your post I decided to check into going on Birth Control. I've been on NuvaRing for about 1 1/2 months now and no seizures yet. Thanks for your post!
Thank you so much for your post! For years I've taken lamictal and it has controlled my seizures EXCEPT when I was ovulating. My neuro kept jacking up the dose of lamictal which just made me tired and spacey all day long. But when I came across your post I decided to check into going on Birth Control. I've been on NuvaRing for about 1 1/2 months now and no seizures yet. Thanks for your post!
Re: Catamenial Epilepsy: Finally a solution!
Submitted by cag122 on Sun, 2012-05-20 - 22:51
I apologize in advance for the long post. The feedback here speaks greatly to my seizure disorder so felt the need to share. I am a 35-year-old woman, diagnosed with a right frontal focal partial onset seizure d/o at age 8. Having tried myriad AED's, I still experience partial seizures daily (zoning out/blank stares, jumbled speech, involuntary hair twirling, residual headaches) but never loose consciousness. They are brief but annoying and uncomfortable.
A lifetime of EEGs, CT scans, MRIs have all proven unremarkable. I've been told repeatedly by neurologists that this is good news. My current neurologist (great doctor double-boarded in neurology and psychiatry) recently told me he can't technically diagnose me with Epilepsy since things have been relatively normal for the past year. I thought, what's wrong with me then!?! I thought I might be losing my mind.
About one year ago I was taking an oral contraceptive (Lybrel) for my other "diagnosis" of Endometriosis. For the first time in a long, long time I was seizure-free. After 6 months on Lybrel my OB/GYN and neurologist decided to start weening me off everything including my AED's. Bad idea! This made for the perfect storm. I was done with my 6-month regimine of Lybrel, completely off the Lamictal and almost off the Clonazepam. On a very low dose of just Clonazepam, within a month I had my first tonic clonic seizure, next month another one, and then a third the following month. I was scared out of my mind and am now back on my 2 AED's but off Lybrel. I have been pretty stable since. No large seizures but still these smaller, nagging episodes.
I've been researching Catamenial Epilepsy. My grand mal seizures must have been hormone-triggered and the frequency, severity and duration of my partial seizures spike during ovulation and menstruation. I'm presently unemployed and don't have health insurance or would probably jump back on Lybrel. It's becoming clearer that the hormone progesterone was inhibiting my seizures BUT that I also need my AED's. Lamictal has been a life changer for me but even with Clonazepam it's not enough.
It's a huge relief to know there are others out there with a knowledge of Catamenial Epilepsy. I'm interested to hear more of your stories and about other alternative therapies. I'm curious about the progesterone cream mentioned - what brand, how to apply, etc. Any additional insight or advice would be greatly, greatly appreciated.
I wish anyone and everyone dealing with this the very best.
Thanks!!!
I apologize in advance for the long post. The feedback here speaks greatly to my seizure disorder so felt the need to share. I am a 35-year-old woman, diagnosed with a right frontal focal partial onset seizure d/o at age 8. Having tried myriad AED's, I still experience partial seizures daily (zoning out/blank stares, jumbled speech, involuntary hair twirling, residual headaches) but never loose consciousness. They are brief but annoying and uncomfortable.
A lifetime of EEGs, CT scans, MRIs have all proven unremarkable. I've been told repeatedly by neurologists that this is good news. My current neurologist (great doctor double-boarded in neurology and psychiatry) recently told me he can't technically diagnose me with Epilepsy since things have been relatively normal for the past year. I thought, what's wrong with me then!?! I thought I might be losing my mind.
About one year ago I was taking an oral contraceptive (Lybrel) for my other "diagnosis" of Endometriosis. For the first time in a long, long time I was seizure-free. After 6 months on Lybrel my OB/GYN and neurologist decided to start weening me off everything including my AED's. Bad idea! This made for the perfect storm. I was done with my 6-month regimine of Lybrel, completely off the Lamictal and almost off the Clonazepam. On a very low dose of just Clonazepam, within a month I had my first tonic clonic seizure, next month another one, and then a third the following month. I was scared out of my mind and am now back on my 2 AED's but off Lybrel. I have been pretty stable since. No large seizures but still these smaller, nagging episodes.
I've been researching Catamenial Epilepsy. My grand mal seizures must have been hormone-triggered and the frequency, severity and duration of my partial seizures spike during ovulation and menstruation. I'm presently unemployed and don't have health insurance or would probably jump back on Lybrel. It's becoming clearer that the hormone progesterone was inhibiting my seizures BUT that I also need my AED's. Lamictal has been a life changer for me but even with Clonazepam it's not enough.
It's a huge relief to know there are others out there with a knowledge of Catamenial Epilepsy. I'm interested to hear more of your stories and about other alternative therapies. I'm curious about the progesterone cream mentioned - what brand, how to apply, etc. Any additional insight or advice would be greatly, greatly appreciated.
I wish anyone and everyone dealing with this the very best.
Thanks!!!
Re: Catamenial Epilepsy: Finally a solution!
Submitted by rachelr917 on Sat, 2012-05-05 - 18:39
Thank you so much for your post! For years I've taken lamictal and it has controlled my seizures EXCEPT when I was ovulating. My neuro kept jacking up the dose of lamictal which just made me tired and spacey all day long. But when I came across your post I decided to check into going on Birth Control. I've been on NuvaRing for about 1 1/2 months now and no seizures yet. Thanks for your post!
Thank you so much for your post! For years I've taken lamictal and it has controlled my seizures EXCEPT when I was ovulating. My neuro kept jacking up the dose of lamictal which just made me tired and spacey all day long. But when I came across your post I decided to check into going on Birth Control. I've been on NuvaRing for about 1 1/2 months now and no seizures yet. Thanks for your post!