Epilepsy Foundation

Catamenial Epilepsy

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Catamenial Epilepsy

Thought this would be a good place to express our feelings and experience with catamenial epilepsy.

I have catamenial epilepsy and my seizures come from my left temporal lobe.

Location: Los Angeles, California
Members: 15
Latest Activity: May 6

Discussion Forum

Birth Control to Control Seizures

Started by Sharon. Last reply by Sharon Dec 2, 2013. 2 Replies

This past Sunday I started taking Seasonique.  It's a three month pack of pill form of birth control.  There is a placebo pill, which I won't be taking since my dr. prescribe the medicine to level my…Continue

Tags: control, #birth, epilepsy, #catamenial, #seasonique

My Experience

Started by Sharon. Last reply by Sharon Oct 5, 2013. 9 Replies

When I was first diagnosed with epilepsy I had never heard of catamenial epilepsy.  It wasn't until within the last few years that I started to notice a correlation between my seizures and my period.…Continue

Tags: period, catamenial

Getting Diagnosed with Catamenial Epilepsy

Started by Jeanette Cefre. Last reply by Monica Bernstein Sep 2, 2013. 2 Replies

I first came across this type of epilepsy in doing a bit of research for my daughter.  My daughter was diagnosed with epilepsy at 5 years old and at that time it was petit mal.  We were hoping she…Continue

New To Catamenial Seizures and seizures period!!!

Started by Melissa Compton. Last reply by Monica Bernstein Aug 23, 2013. 6 Replies

Hi everyone!!!  I am Melissa and had my first seizure on wednesday of last week.  They did all the EKG, MRI, CT's and they were clear!!!  They did an EEG and there was seizure activity in my right…Continue

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Comment by Sharon on January 29, 2014 at 4:27am

Comment by Sharon on September 26, 2013 at 12:11am

Thanks to everyone for joining the group.  I hope it is helpful to all of us.  Feel free to drop a line anytime : ).  Take care and stay strong

Comment by Sharon on September 7, 2013 at 9:59pm

Found a pretty cool article on Perimenstrual Symptoms and Syndromes.  http://www.jhasim.com/files/articlefiles/pdf/xasim_master_5_5_p228_...

Comment by Monica Bernstein on August 28, 2013 at 12:32pm

I don't know if catamenial epilepsy would affect getting pregnant. It may have nothing to do with it. Have you asked your neurologist and gynecologist? I have one child (21-year-old daughter) and I got pregnant by accident. I never dealt with trying to get pregnant.

Comment by Kelly on August 28, 2013 at 10:01am
My husband and i have been trying to get pregnant for the last 7 months. I've had catamenial epilepsy for almost 1 year. Has anybody with this type had trouble getting pregnant? I know it hasn't been too long, but i'd like to hear any thoughs if you have them! Thanks!
Comment by Monica Bernstein on August 13, 2013 at 11:58am

Marie,

My doctor is Dr. Suzette LaRoche. I don't know your age, but I can tell you, first of all, that our menstrual cycle changes with age. Cramps, heaviness of bleeding, how long our periods last, etc. can change as we get older. There can be increases or decreases.  Secondly,  perimenopause and menopause can affect seizure patterns, as well. Seizures can increase, decrease, or not change due to perimenopause or menopause. I'm 45 and have been in the perimenopause stage for the past 6 years. I'm hoping my seizures will decrease after menopause. I take both Lamictal and Keppra XR, along with Tegretol XR.

Comment by Marie on August 12, 2013 at 9:04pm

Monica - I got to the Emory Clinic as well.  My current doctor Dr. Meador is leaving for Stanford sometime in the near future.  I see PA Teagarden for now.  Who is your doctor?  I've been going to the Emory Clinic for years but only new Pennell and Meador.

I don't think I was aware of the term catamenial until Pennell became my dr. either.

My catamenial epilepsy has become worse as I get older.  The past months have been trying.  I need to take extra meds, etc.  I'm currently on Lamictal 650/day.  My PA is suggested taking me off 50 mg of Lamtical and putting me on Keppra.  Anyone out there who takes both?

Comment by Sharon on August 11, 2013 at 8:42pm

It's nice to here you like your new doctor and that you stand your ground about your treatment.  That's right it is our bodies and our lives we should be the ones being able to choose what we want. 

Glad to hear that Keppra has been working for you.  I have about 3 or 4 complex seizures a month.  Not sure of the simple partials cause the aura has changed so many times I don't know what's what.  It was the easiest when it was the weird high feeling.  Now it's just a weird feeling but not weird enough to notice it that well (if that makes any sense. Lol).

Thanks.  Wishing you the best with everything.

Comment by Monica Bernstein on August 11, 2013 at 11:36am

I only see my epileptologist once a year. I get along better with the one I have now. Dr. Pennell tried to pressure me into surgery. I don't want to have surgery b/c I don't feel it's worth the risk in my situation. I frustrate my doctors when I won't do what they want me to do. But, it's my body and my life. I'll make the decisions. My current epileptologist appears to be more understanding and doesn't pressure me, but she has discussed surgery with me. I have never been seizure-free, but I have a lot less seizures since I added Keppra about 7 years ago. I, currently, have about 5 complex partials a month. I have more simple partials, but can't keep track of how many.

Good luck with the hormones. 

Comment by Sharon on August 10, 2013 at 9:56pm

Hope you like your new epileptologist.  I just switched epileptologist.  With my last epileptologist, we were looking into surgery but decided not to since the fMRI and PET scan didn't show anything.

My new epileptologist works with hormones and I will be trying birth control along with my current meds in hopes of more control.

I have taken all three of those.  I think the Tegretol and Keppra were the regular dose not the extended release.  Hope they are working well for you.

Take care

 

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