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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 jakey on Wed, 2010-11-17 - 11:58

hi, i've been reading all of your posts on here and i had to tell you my story. I had my first gm seizure when i was 25 im now 41, after the first one i didn't have another for 3 years so i just assumed it was a one off, then out of the blue i had another gm which was pretty bad, i was on my own but i knew what had happened because i had bitten my tongue and was very confused, so i went to the doctors the next day and i was sent for tests but nothing was found,

Over the years i had more gm seizures usually about 3 or 4 a year sometimes ending up in an ambulance, i opted not to go on medication because i always knew when i was going to be ill because when i woke in the morning i would have eye flickering so i would just stay at home and wait for the (biggy) .Anyway 3 years ago i had another gm seizure and ended up in hospital and was referred to my neurologist who i hadn't seen for 10 years, i told him that my seizures hadn't really changed but i had noticed over the years that they happened during menstruation, he immediately said that it was catamenial epilepsy and he prescribed frisium(clobazam) 2mg to be taken once a day during menstruation or more if i had the eye flickering and it has totally changed my life. Since taking clobazam a haven't had another gm seizure, i take 1 tablet before bed during menstruation, luckily i'm very regular and its done the trick.

I now drive and i dont live my life wondering when the next seizure is going to happen, so please if your neurologist wont acknowledge this type of epilepsy print this off and show it to them because you can get on with your life like i have. Good luck x

hi, i've been reading all of your posts on here and i had to tell you my story. I had my first gm seizure when i was 25 im now 41, after the first one i didn't have another for 3 years so i just assumed it was a one off, then out of the blue i had another gm which was pretty bad, i was on my own but i knew what had happened because i had bitten my tongue and was very confused, so i went to the doctors the next day and i was sent for tests but nothing was found,

Over the years i had more gm seizures usually about 3 or 4 a year sometimes ending up in an ambulance, i opted not to go on medication because i always knew when i was going to be ill because when i woke in the morning i would have eye flickering so i would just stay at home and wait for the (biggy) .Anyway 3 years ago i had another gm seizure and ended up in hospital and was referred to my neurologist who i hadn't seen for 10 years, i told him that my seizures hadn't really changed but i had noticed over the years that they happened during menstruation, he immediately said that it was catamenial epilepsy and he prescribed frisium(clobazam) 2mg to be taken once a day during menstruation or more if i had the eye flickering and it has totally changed my life. Since taking clobazam a haven't had another gm seizure, i take 1 tablet before bed during menstruation, luckily i'm very regular and its done the trick.

I now drive and i dont live my life wondering when the next seizure is going to happen, so please if your neurologist wont acknowledge this type of epilepsy print this off and show it to them because you can get on with your life like i have. Good luck x

Re: Catamenial Epilepsy: Finally a solution!

Submitted by anchap on Wed, 2010-11-17 - 10:21
I have JME & I've been told my epilepsy is "refractory". Mine is definitely worsened with menses. With an extensive, complicated history of endometriosis, NuvaRing & other hormonal-based treatments are not options for me. My neuro told me that acetazolamide (Diamox) was helpful with catamenial epilepsy when used as an adjunct to anticonvulsants. Since I've been on it (a few yrs), it's helped tremendously!

Re: Catamenial Epilepsy: Finally a solution!

Submitted by bellydance_goddess on Wed, 2011-11-02 - 14:26
Does anyone in here use hormones only, (without AEDs) to control their seizures? and have they been successful? I would LOVE to stop my medication cuz I HATE the side effects (I want my sex drive back DAMMIT!!!!!!)

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