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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 jncolebeer on Fri, 2012-04-27 - 18:46
I'll be short and sweet :)  I started having seizures when I was twenty three the week before my period every month like clockwork.  It just so happened that this began right after I quit taking Ortho-Tricyclne Lo.  Doctor after doctor just ignored me.  For seven years I have been on Lamictal and no doctor will change it!!!  In addition the secondary med has been changed about 10 times.  After all of these meds didn't control the seizures the doctors decided BRAIN SURGERY was my next best option.  Note that the entire time I'm telling them Hormones, Hormones, Hormones!!!  Now that surgery didn't work I've been seeing a new neurologist who has diagnosed me with catemenial epilipsy and has put me on the depo shot.  Things have gotten a little better but I'm still not cured.  He wants to wait to make any changes, he says "lets give it time to kick in".  My advice to any woman dealing with this is to get second and third opinions before commiting to one doctor!!! I can never get the big portion of my temporal lobe replaced...

Re: Catamenial Epilepsy: Finally a solution!

Submitted by bamajen on Thu, 2009-08-20 - 13:30
Oh, I am so hopeful at this moment!  Just joined today....identified mine as catamenial epilepsy in the spring of '09 after a year of 4-5 seizures a month during my cycle.  We started the Depo shot in May and have had no change YET, but apparently my hormones were more out of whack than we realized.  They feel it will take 2-3 shots before I see a change; I had 3 TC's last Tuesday after my 2nd shot the Sunday before.  I was losing hope for this "treatment" until I saw your post!!  Thanks for sharing!!!!  Maybe I just have some really strong hormones.  lol!!  :) 

Re: Catamenial Epilepsy: Finally a solution!

Submitted by uberzwitter on Mon, 2009-08-31 - 14:30

I'm glad to finally see a responce like yours because I wanted to find others like me and hopefully we could all learn something from each other.

I suppose all bodies are different. Your hormones might be really strong! But as I have been told, we have epilepsy that is worsented by hormones- not hormones that cause epilepsy. You might not find an 100% solution depending on your sz. I beleve 60% of women with E have catamenial siezures. For me though these seems to be the main trigger.

And for you it might be as well but- are you on any anti-convulsants as well? I take Topamax concurrently 250 mg a day. I believe it is the combination of both that helps. 250 mg a day without the hormones was NOT effective. Likewise, hormones alone might not be eitheir. I urge you to consider hormones as perhaps a concurrent treatment. I know Depo can be done alone, but perhaps in our cases where breakthroughs still are frequent, it should be viewed as a powerful add-on therapy to conventional anti-convulsants as opposed to monotherapy alone. 

If Depo is not working...and you are on an anti-convulsant you trust, maybe something of Depo doesn't agree with you. As odd as that would be...you could explore other progesterone, (*very* low estrogen birth control options, since Depo is the only progesterone only option) to see if there is a difference. I opted out because of weight gain with it)

Good luck. Let me know what happens. 

 

 

I'm glad to finally see a responce like yours because I wanted to find others like me and hopefully we could all learn something from each other.

I suppose all bodies are different. Your hormones might be really strong! But as I have been told, we have epilepsy that is worsented by hormones- not hormones that cause epilepsy. You might not find an 100% solution depending on your sz. I beleve 60% of women with E have catamenial siezures. For me though these seems to be the main trigger.

And for you it might be as well but- are you on any anti-convulsants as well? I take Topamax concurrently 250 mg a day. I believe it is the combination of both that helps. 250 mg a day without the hormones was NOT effective. Likewise, hormones alone might not be eitheir. I urge you to consider hormones as perhaps a concurrent treatment. I know Depo can be done alone, but perhaps in our cases where breakthroughs still are frequent, it should be viewed as a powerful add-on therapy to conventional anti-convulsants as opposed to monotherapy alone. 

If Depo is not working...and you are on an anti-convulsant you trust, maybe something of Depo doesn't agree with you. As odd as that would be...you could explore other progesterone, (*very* low estrogen birth control options, since Depo is the only progesterone only option) to see if there is a difference. I opted out because of weight gain with it)

Good luck. Let me know what happens. 

 

 

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