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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.
Re: Catamenial Epilepsy: Finally a solution!
Submitted by winged on Sun, 2009-12-13 - 16:34
Wow, I'm so glad to find a forum thread like this!
I've been diagnosed with epilepsy for a long time - I had absence seizures when I was a very small child but appeared to have "grown out of them" and then was re-diagnosed with JME when absence and myeclonic all started popping up around age 13.
I was initially put on Depakote, which helped some. However, my seizures were never satisfactorally controlled. When we moved, my new neurologist put me on Clonazepam, then switched me to Zonegran and Clonazepam. What was suspected (at first before the move and then after) - especially because my mother had had absence seizures in her early adolescent years and her sister had life-long TC seizures, both catamenial - was that the bursts of seizures I was having were during my cycle.
When we discussed this with my neurologist he seemed at first dubious (seemed to think this was relatively rare or unlikely -- seems more likely that he hadn't read much about it) but accepted that we should try changing my medication. He first upped my Zonegran -- which was a terrible idea, made me about 10 times more out of it -- and then switched to a higher Clonazepam dose around my period, which was fairly but not completely effective. However, he wasn't completely satisfied with this and wanted me to try birth control, a solution I never got around to because I had slightly high blood pressure at this time and my gynecologist refused to put me on birth control with high blood pressure [she also had never heard of it as a treatment for epilepsy].
I switched later to an adult neurologist, a woman, who had heard of this (again never gave me a name but was immediately confirming of the idea). We never figured out with her what she wanted to do, although she seemed content with the idea of upping my Clonazepam.
Right about the time that I moved to another state and graduated college, thus losing my medical insurance (...let me tell you, that has been a CARNIVAL of fun times), I had my first ever tonic-clonic seizure. I don't know if they can be brought on by stress or not - since everyone else in my family who's had seizures has had them brought on at a time of hormone change, and mine haven't.
Since then I've had two more - love those unexpected ER visits and freaking out the new coworkers. The first was not during my period although it may have been during an ovulation cycle and was definitely during a period of not enough sleep and dehydration. The second two were both on the last day of my period - that transition period. The second two times I've also experienced what must be partial and some kind of secondary generalized seizures - the third time repeatedly and requiring repeated doses of Ativan to control them - after the TC was over. When I came home I had a migraine bad enough to vomit and my cycle is often independently marked by migraines.
Whoa. Too much information. Can you tell I'm a newbie here on the boards? I don't have too many people to share my story with. In any case, I'm glad to know there's a name and a possible solution. I'll have to wait until I have medical insurance -- ER visits alone are some pretty bad debt for me -- but the thought that birth control could maybe put an end to the fear I have every time I have my period is enough for me.
Wow, I'm so glad to find a forum thread like this!
I've been diagnosed with epilepsy for a long time - I had absence seizures when I was a very small child but appeared to have "grown out of them" and then was re-diagnosed with JME when absence and myeclonic all started popping up around age 13.
I was initially put on Depakote, which helped some. However, my seizures were never satisfactorally controlled. When we moved, my new neurologist put me on Clonazepam, then switched me to Zonegran and Clonazepam. What was suspected (at first before the move and then after) - especially because my mother had had absence seizures in her early adolescent years and her sister had life-long TC seizures, both catamenial - was that the bursts of seizures I was having were during my cycle.
When we discussed this with my neurologist he seemed at first dubious (seemed to think this was relatively rare or unlikely -- seems more likely that he hadn't read much about it) but accepted that we should try changing my medication. He first upped my Zonegran -- which was a terrible idea, made me about 10 times more out of it -- and then switched to a higher Clonazepam dose around my period, which was fairly but not completely effective. However, he wasn't completely satisfied with this and wanted me to try birth control, a solution I never got around to because I had slightly high blood pressure at this time and my gynecologist refused to put me on birth control with high blood pressure [she also had never heard of it as a treatment for epilepsy].
I switched later to an adult neurologist, a woman, who had heard of this (again never gave me a name but was immediately confirming of the idea). We never figured out with her what she wanted to do, although she seemed content with the idea of upping my Clonazepam.
Right about the time that I moved to another state and graduated college, thus losing my medical insurance (...let me tell you, that has been a CARNIVAL of fun times), I had my first ever tonic-clonic seizure. I don't know if they can be brought on by stress or not - since everyone else in my family who's had seizures has had them brought on at a time of hormone change, and mine haven't.
Since then I've had two more - love those unexpected ER visits and freaking out the new coworkers. The first was not during my period although it may have been during an ovulation cycle and was definitely during a period of not enough sleep and dehydration. The second two were both on the last day of my period - that transition period. The second two times I've also experienced what must be partial and some kind of secondary generalized seizures - the third time repeatedly and requiring repeated doses of Ativan to control them - after the TC was over. When I came home I had a migraine bad enough to vomit and my cycle is often independently marked by migraines.
Whoa. Too much information. Can you tell I'm a newbie here on the boards? I don't have too many people to share my story with. In any case, I'm glad to know there's a name and a possible solution. I'll have to wait until I have medical insurance -- ER visits alone are some pretty bad debt for me -- but the thought that birth control could maybe put an end to the fear I have every time I have my period is enough for me.