Catamenial Epilepsy: Finally a solution!

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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 cwmabrey on Tue, 2013-01-08 - 23:00

Thank you to the individual who started this post. Also to everyone else who has added their comments. It's good to see us all working together on this issue. I'm 32 yrs old & until now, felt alone with the lack of attention I was getting from my doctors on the subject of catamenial epilepsy. I am a wife & mother of two who has been unemployed for the past year & my license remains suspended due to my condition. The feeling of having to depend on people bothers me on top of living with the condition itself. But what's a girl supposed to do...? For a while I have felt going to the doctor was a waste of time...the cure is always medication. I stopped trusting doctors so much, then I too, discovered I have catamenial epilepsy, (although they don't want to explore/diagnose me yet.) I feel used with med after med. I finally had enough & said I wasn't taking any other meds unless I felt it was helping ME. That was the first step for me. My neurologist called me to further discuss solutions & WE decided to try another med. Although it decreased my migranes & I felt better, it couldn't stand up to my menstral period. I had 3 short seizures, opposed to my usual 1 drawn out seizure. I'm trying to be patient with this rule out procedure & I hoping my neurologist sees he's running out of med options. I am currently working towards getting my hormone balance tested AGAIN. I'm sure I surprised my neurologist this time with the research I did before talking to them. Thanks to this post, I can suggest a few birth control methods. I'm just so frustrated because I know myself better than anyone...I've been keeping a journal showing the relationship to my cycles...I've pinpointed the main cause, but I'm not getting the overdue results! One suggestion I have to anyone with this condition, is to DO YOUR RESEARCH before you bring it to your doctor. That's for anything, especially if it's not widely practiced. It's almost like you're trading places in the situation...like their scared to touch the subject. Approach them with strong intentions, avoid being side-tracked & dominate it until the end. Because in my opinion, although I should qualify for some type of disability/aid, my doctors don't. They are just there to their jobs & nothing more. You are your best doctor, so take control because it's your life...with HELP of a professional of course.

Re: Catamenial Epilepsy: Finally a solution!

Submitted by randres on Thu, 2013-02-21 - 15:09

Ladies, I have been researching this topic for the past two years. I was diagnosed with epilepsy when I hit puberty. At the time it was only Absence seizures. When I was in my second year of secondary school my mother decided she could cure me with herbs. She took me off of my AED cold turkey. It took about 5 days but eventually I had a severe tonic-clonic seizure. You could hear my doctor yelling at her all over the hospital!!

I tell you this because it was my first experience with that sort of seizure. I came to and didn't even know my name. It took me the ride in the ambulance to start remembering...about 15 minutes.

So, now I knew that an increase in Absence seizures led to a Tonic-clonic (it was my aura my neuro said).

I went 25 years completely seizure free. Then the absence sz started again when I turned 42. I badgered 2 neuros (my original neuro and one closer to me) for over a year to do something. Every month on one day I was having non-stop Absence seizures which I knew would escalate. So, they tried changing my medication which resulted in the elimination of my short term memory so they changed it back. Then they suggested I "up" my medication 3 days prior to my anticipated problem day and continue at the increased dose for 3 days after. Well, that may have worked if I knew EXACTLY what day that was going to be but it moved around within a 3 day window.

Finally, I had a tonic-clonic, fell down a flight of stairs, broke my nose and had a series of seizures which scared the doctors so much they mega-dosed me to keep me from going into Status (non-stop seizures).

I took matters in my own hands to educate myself. My OB-GYN and I hashed out a scheme to shut down my ovaries because it was obvious to me that they were the problem - Seasonale. Any pill seems to work but I don't like being on them given my age and risk of heart attack, stroke and breast cancer. When you are on the pill your ovaries believe you are getting the hormones you need and don't bother working to their full extent.

The REASON (while you are in peri-menopause) you want to shut them down is because the send out too much Estrongen and not enough Progesterone - they spike and trough (up and down) your hormones. Progesterone protects you from having seizures, Estrogen promotes seizures. So, I have found the answer is to get off the pill and take bio-identical progesterone. I am beginning my journey in the next month with a hormone specialist I have found.

Ideally, a Neuro-Endocrinologist would be best but it's impossible to find one. The Bio-identical hormone specialists are a challenge as well because Epilepsy is not exactly (in their minds) something they want to mess around with. It's tough even when you know the answer to your problem - no one will listen or take the risk. My most amazing neuro was Dr. Warren T. Blume - he always said to me, "it doesn't matter what anyone else says, you know your body, listen to it."

Cheers and best wishes!

Ladies, I have been researching this topic for the past two years.  I was diagnosed with epilepsy when I hit puberty.  At the time it was only Absence seizures.  When I was in my second year of secondary school my mother decided she could cure me with herbs.  She took me off of my AED cold turkey.  It took about 5 days but eventually I had a severe tonic-clonic seizure.  You could hear my doctor yelling at her all over the hospital!! I tell you this because it was my first experience with that sort of seizure.  I came to and didn't even know my name.  It took me the ride in the ambulance to start remembering...about 15 minutes. So, now I knew that an increase in Absence seizures led to a Tonic-clonic (it was my aura my neuro said). I went 25 years completely seizure free.  Then the absence sz started again when I turned 42.  I badgered 2 neuros (my original neuro and one closer to me) for over a year to do something.  Every month on one day I was having non-stop Absence seizures which I knew would escalate.  So, they tried changing my medication which resulted in the elimination of my short term memory so they changed it back.  Then they suggested I "up" my medication 3 days prior to my anticipated problem day and continue at the increased dose for 3 days after.  Well, that may have worked if I knew EXACTLY what day that was going to be but it moved around within a 3 day window. Finally, I had a tonic-clonic, fell down a flight of stairs, broke my nose and had a series of seizures which scared the doctors so much they mega-dosed me to keep me from going into Status (non-stop seizures). I took matters in my own hands to educate myself.  My OB-GYN and I hashed out a scheme to shut down my ovaries because it was obvious to me that they were the problem - Seasonale.  Any pill seems to work but I don't like being on them given my age and risk of heart attack, stroke and breast cancer.  When you are on the pill your ovaries believe you are getting the hormones you need and don't bother working to their full extent. The REASON (while you are in peri-menopause) you want to shut them down is because the send out too much Estrongen and not enough Progesterone - they spike and trough (up and down) your hormones.  Progesterone protects you from having seizures, Estrogen promotes seizures.  So, I have found the answer is to get off the pill and take bio-identical progesterone.  I am beginning my journey in the next month with a hormone specialist I have found. Ideally, a Neuro-Endocrinologist would be best but it's impossible to find one.  The Bio-identical hormone specialists are a challenge as well because Epilepsy is not exactly (in their minds) something they want to mess around with.  It's tough even when you know the answer to your problem - no one will listen or take the risk.  My most amazing neuro was Dr. Warren T. Blume - he always said to me, "it doesn't matter what anyone else says, you know your body, listen to it."   Cheers and best wishes!