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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 lss10 on Mon, 2011-11-28 - 14:58
This is so enlightening!!!
I am 20 and started taking birth control when I turned 19 because my hormones weren't "kicking in" due to doing elite gymnastics. So I was put on the pill. I've never been sick (not even chicken pox!) I had terrible problems for two months, which they described as "normal." Apparently around the same time I had come down with mono and did not know it at the time... In February, after about 4 months of taking it.. I was rushed to the hospital and diagnosed with viral meningitis. I had a seizure in my car and that's how they found out. When they took my spinal fluid they saw that I had that and the mono. 3 months later I had a granmal seizure after drinking 1 drink. It lasted hours upon hours and I vomited several times and couldn't be woken up. 3 months after that... I had a partial seizure and actually felt it coming. I was fully aware of everything during my seizure. Upon this I was put on keppra and stayed on the birth control. I was an A cup when I started and have only gained weight in my chest, and am now a double D.. which is a drastic change, especially for my body type. I also have become more irritable and sleepy!!! I know these are random facts but I'm so frustrated with the neurologist just restricting me from driving and not asking questions. I even brought up the menstrual cycle/seizure coincidence (since they've all been at the beginning of my cycle...) and he ignored it. It's frustrating and difficult, especially since I'm an athlete. These replies have helped so much. Just wanted to share my story... Not done with this... going to figure it out and take some of these hints and try them. If anyone has experience anything like this... please help. I'm on a high dosage of birth control, junel Fe 1.5 and I've also brought it up to my gynecologist but she doesn't think there's a correlation either.
This is so enlightening!!!
I am 20 and started taking birth control when I turned 19 because my hormones weren't "kicking in" due to doing elite gymnastics. So I was put on the pill. I've never been sick (not even chicken pox!) I had terrible problems for two months, which they described as "normal." Apparently around the same time I had come down with mono and did not know it at the time... In February, after about 4 months of taking it.. I was rushed to the hospital and diagnosed with viral meningitis. I had a seizure in my car and that's how they found out. When they took my spinal fluid they saw that I had that and the mono. 3 months later I had a granmal seizure after drinking 1 drink. It lasted hours upon hours and I vomited several times and couldn't be woken up. 3 months after that... I had a partial seizure and actually felt it coming. I was fully aware of everything during my seizure. Upon this I was put on keppra and stayed on the birth control. I was an A cup when I started and have only gained weight in my chest, and am now a double D.. which is a drastic change, especially for my body type. I also have become more irritable and sleepy!!! I know these are random facts but I'm so frustrated with the neurologist just restricting me from driving and not asking questions. I even brought up the menstrual cycle/seizure coincidence (since they've all been at the beginning of my cycle...) and he ignored it. It's frustrating and difficult, especially since I'm an athlete. These replies have helped so much. Just wanted to share my story... Not done with this... going to figure it out and take some of these hints and try them. If anyone has experience anything like this... please help. I'm on a high dosage of birth control, junel Fe 1.5 and I've also brought it up to my gynecologist but she doesn't think there's a correlation either.