Catamenial Epilepsy & PMDD

When I was a young girl, my mom and I often talked about what I could expect growing up and becoming more mature. How my body would change and develop. How I would eventually grow out of that favorite shirt of mine ha ha! One of the topics she did her best to prepare me for is the time in which I would become a woman. Meaning, when I officially were to begin menstruation. I asked if there were pain and she said that pain is different for everyone. Some people experience little pain and some experience quite a bit of pain. She informed me that I might cry and not know why. I might be angry over the littlest of things. I might feel nauseous in my belly and maybe even a little sleepy. I didn’t give it a whole lot of thought at the time of course. I was more excited at the thought that I was growing up! So many fun and exciting things to experience. Driving and dates, the typical young girl thought process.  It was when I was 12 years old in the middle of the night, stirring me awake from sleep that I discovered that my time had arrived and I was officially a woman. However, it arrived like a flaming arrow to the gut. Pain I had never experienced in my entire little young life. Pain that frightened the tears right out of my eyes. I awoke my mother and told her of the pain. All of the methods she attempted to ease my pain fell on pains deaf ears and it only got worse. I wanted to pass out but I clung on to consciousness by a thread. Surviving that first night, the rest of the way was a breeze. Not taking any chances, I was taken to the pediatrician whom quickly discovered that not only was I experiencing PMS symptoms (Premenstrual Syndrome typical for a woman but I was diagnosed with PMDD (Premenstrual Dysphoric Disorder). The most severe form of PMS a woman can have. PMDD  is a condition in which a woman has severe depression symptoms, irritability, and tension before menstruation. The symptoms of PMDD are more severe than those seen with premenstrual syndrome (PMS). I’ve been living with this severity for 15 years. Developing and modifying strategies to prepare for the severe pain and plethora of symptoms accompanying. Regardless, its just something you can never be prepared for entirely. I suffered one and only seizure 4 years after beginning my menstrual cycle. Diagnosed as having a Cavernous Malformation within the left side of my brain. Life went on! PMDD went on. In 2008, the seizures came back and I was officially diagnosed with Epilepsy. It wasn’t long before I began noticing that my Epilepsy and PMDD were not getting along. The severe cramps, the hormone changes, sadness, irritability etc. began triggering seizures. The pattern continued and still continues to this day. Typical seizures and seizure activity occurring before during and after my time of the month. I wasn’t sure whether or not there was a name for this sort of activity. In speaking with my doctor, it was soon discovered that I was experiencing what is called Catamenial Epilepsy. Catamenial Epilepsy describes a tendency for increased seizures related to the menstrual cycle. In some women, seizures occur most frequently just before menstruation, during the first few days of menstruation and at mid-cycle, during ovulation. The causes of Catamenial epilepsy are not understood very well. The balance between the two female hormones, estrogen and progesterone, may be disturbed, or women may not be producing enough progesterone during the second half of the menstrual cycle. Its also possible that the amount of antiepileptic drug (AED) circulating in the bloodstream may decrease before menstruation.

Needless to say, I felt completely outnumbered and frustrated. Wondering to myself, “How much does life expect me to take?” But I was relieved to know that there was a name for this activity I was experiencing. This gave me a pathway to prepare even more-so for these times of the month. I can’t help but to wonder how many women this sort of thing affects. A good friend of mine who also has epilepsy I discovered experiences these sort of events. She is the only one that I know of. Innocently, I have to say that made me feel a little better to know I wasn’t the only one. Life is hard and has definitely given me quite the uphill battle. But I go on with a smile on my face constantly reminding myself that I am alive and life has so many reasons to be happy no matter the storms I face. No matter the motions, the pain and the Epilepsy, it can’t keep me down. God, first, my will to live, my will to smile and my will to be happy keep me going strong.

I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!


  • Rhonda

    I know this post was written 3 years ago, but I came across it today while looking up information on Catamenial Epilepsy. I go see my neurologist tomorrow and am hoping he’ll give me some more information on it, as so far I can find so little information. I just wanted to tell you that I also have PMDD. I don’t have severe pain with my periods, but I do have severe pre-menstrual symptoms. For me, I’m always baffled as to how people dread their periods, as for me, the two weeks BEFORE my period is by far the worst time of my life every month. As for seizure activity, I’m always at the highest risk during menstruation. During ovulation I never feel quite right, either, but have not had as many seizures then as during menstruation. May I ask if you’re on any other medications besides AED’s?

  • (Ms.) Lee Belknap

    Dear Tiffany,
    Thank you for your post. After reading your message, I think my daughter (age 16) may have Catamenial Epilepsy. She was first diagnosed with epilepsy 3 years ago, however, about 9 months ago she started to develop a pattern of having seizures one week after the end of her menstrual cycles. Her neurologist increased her medication (Lamictol), which seemed to take care of the problem for a couple of months but last week she experienced one of her worst seizures so far and then the next day she got her period. At her last doctor’s appointment in February her doctor mentioned the possibility of adding birth control with her AED. She has another appointment in August and I am definitely going to ask the doctor about “Catamenial Epilepsy”. Thank you again for this information! May I ask what medications you are taking and how successful they are?
    Lee Belknap

    • Vicarious LI

      I am so glad that you were able to read this article before a new medicine regiment was performed. I know some things in healthcare is trial and error, but it is more comforting to know that what is being prescribed is a solution to the exact cause.

      For example, I could have saved myself from a whole lot of the professionally recommended Pepto Bismal if I knew the issue was not food related. I had taken antibiotics that killed the helpful bacteria that promoted healthy digestion. Although the same person knew about the antibiotics, they themselves just did knee jerk reaction of treating symptom and not the cause.

      Back to you, I think the birth control should be given after they consider and treat as much as possible your daughter’s potential Catamenial Epilepsy.

      Please let us know how it all works out.

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