Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

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 LadyAbby on Tue, 2011-02-15 - 11:00
Hello, you're  me all over again.!! I also started at 13 I am now 36 yrs old, Yes over 20 yrs of meds and no cure...except not sure if anyone has experienced this, all episodes, spacing out, GranMals,Petitmals,migranes stopped only when I was pregnant! I take Lamictal and Depakote (I tried Birth Control years ago didnt really work well.) I feel I ran into certain doctors not taking my life and illness serious enough so in turn I feel I have suffered all these years. Never had a driverslicense tried working cant hold one down, tried school never could finish, memory is bad. I honestly have lost alot of memory Sux but what can I do. I was diagnoses with various types. Dunno if some of you out there have relatives with epilepsy but I do, my grandmother, and uncle have them. Mine are similiar to what my grandmother had. Her doctor gave her a hysterectomy and she became siezure free. I am hoping on going that route soon. I hate feeling like im living in a bubble. I had a siezure on my 21st. Bday and broke both my front teeth. and have had numerous falls last one was down a flight of stairs hurt myself bad! Last resort is hysterectomy I asked for it years ago at age 21 and they told me no! I was to young. If they had did what I wanted all this pain and fear that I have suffered all these years would have been prevented. Ladys Never stop trying and never get hushed by any doctors always get that secound, third etc opinion.new doctor tomorrow for me, and I am insisting on a hysterectomy! wish me luck

Re: Catamenial Epilepsy: Finally a solution!

Submitted by Diane Parente on Tue, 2011-11-01 - 22:25

Hi Danyel, You sound like my daughter who also has seizures. She has started on bioidentical progesterone cream and her lamotrogine (she has had more seizures since going on lamotrogine than ever) She did not have a seizures last month and none so far this cycle. I am hoping that the progesterone will help, it is not synthetic but bioidentical progesterone cream that she uses twice a day. How are you doing? Have you tried anything that is working for you?

Diane

Hi Danyel, You sound like my daughter who also has seizures. She has started on bioidentical progesterone cream and her lamotrogine (she has had more seizures since going on lamotrogine than ever) She did not have a seizures last month and none so far this cycle. I am hoping that the progesterone will help, it is not synthetic but bioidentical progesterone cream that she uses twice a day. How are you doing? Have you tried anything that is working for you?

Diane

Re: Catamenial Epilepsy: Finally a solution!

Submitted by ShakinWillow on Tue, 2010-09-14 - 23:50

Hello Everyone,

 

So glad people are talking about this. I truly beleive that this is the ty pe of E that I have.  I am not taking any meds and do not see a Dr. because I do not have insurance so I just kind of suck it up. *smile* I have a grand mal once per month in my sleep when I am ovulating. This began a little over a year and a half ago. No warning. I am a 45 year old woman. My whole life has been turned upside down! I would love to find a solution.

My query is....what would happen if I were to get a complete hysterectomy ? I know that some are trying birth control methods like neuvo ring and things. But, what is there were no hormones to fluctuate? 

Any ideas? Thanks so much for this discussion. 

 

ShakinWillow

Hello Everyone,

 

So glad people are talking about this. I truly beleive that this is the ty pe of E that I have.  I am not taking any meds and do not see a Dr. because I do not have insurance so I just kind of suck it up. *smile* I have a grand mal once per month in my sleep when I am ovulating. This began a little over a year and a half ago. No warning. I am a 45 year old woman. My whole life has been turned upside down! I would love to find a solution.

My query is....what would happen if I were to get a complete hysterectomy ? I know that some are trying birth control methods like neuvo ring and things. But, what is there were no hormones to fluctuate? 

Any ideas? Thanks so much for this discussion. 

 

ShakinWillow

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.