“Catamenial epilepsy is a menstrual cycle-related seizure disorder that affects up to 70% of women with epilepsy.”1
-Advanced Biomedical Research Journal
As part of that 70% of epileptic women with Catamenial Epilepsy, I prefer not to sugar coat the truth about my condition. Living with Catamenial Epilepsy can be quite the grueling task! Uncontrollable seizures are no walk in the park and I think all epileptics will agree with me when I say that they’re a very inconvenient interruption in daily life.
So, ladies, when your hormones start playing a role in your epilepsy and the obstacles connected with these circumstances are immediately amplified…what do you do? You have been extended an exclusive invitation into that 70% category of women, an invitation no woman wants, but, unfortunately is one that does not give one the option to decline (so unfair, I know)…how do you accept this unexpected life change, but continue living a somewhat normal lifestyle?
Due to the fact that no woman is the same, there are obviously many different answers to this question. Living with Catamenial Epilepsy for close to 6+ years has allowed me to develop my own answer to these questions based upon my own personal experience. Over the years, I have learned what lifestyle choices work well if you happen to be living with this condition. Therefore, I would like to share with you the tried and true methods used by yours truly, with the hopes that it will help every woman to adjust to, and improve upon this crazy lifestyle.
I do not know the extent of your experience with the disease, but if you’re anything like me, then building a solid foundation of understanding of your body is the best place to start. So, how does one go about building this type of foundation? By getting organized, of course! Dealing with any type of health issue can be incredibly overwhelming. For me, it was like trying to navigate the unknown with little to no help from my neurologists. In order to successfully achieve this task without having a panic attack (or more seizures), I adopted a system of organization through keeping a journal. I found it to be the simplest way to keep all of my health related details, both big and small, together in one easily accessible location.
It still amazes me how something as simple as a journal has made such a tremendous difference in the quality of my condition. Hands down, it is by far the best decision I made for my health because it allowed me to finally make progress with Catamenial Epilepsy, which felt like quite the impossible task at the time.
Due to my inexperience with the disease in the beginning, I kept things broad and analyzed everything I suspected could be contributing to the frequency of my seizures. So, I kept my main focus on four potential contributing factors: diet/nutrition, sleep, stress levels and my menstrual cycles.
In addition to the journal, I also recommend purchasing a wall or desk calendar to use for recording information. I have found it very helpful to be able to look back on an entire year of seizures and menstrual cycles in a monthly format. The journal works best for recording your diet/nutrition and sleep information because you have plenty of space for every detail (big or small) you feel is absolutely essential to include. The calendar provides a much more convenient layout for recording information on menstrual cycles, seizures occurrences and stressful behavior. I’ll further explain my reasoning behind this when I go into detail about what information you should be recording in each resource.
Let’s start with the journal, all you really need is a simple notebook, but I’m a huge Rifle Paper Company fan so I like any excuse to buy a super cute journal. If you’re like me in this way, I have provided examples of a few absolutely adorable journals and calendars throughout this article to give you some ideas. If you find that you absolutely cannot live without one (or more!), I have provided links to the seller websites where you can purchase them!
***Note: I am not affiliated with any of the companies that sell the calendars/journals I am recommending nor do I receive any kickback for advertising, I simply wanted to share with my readers some of my favorite products!
In my own journal, I record a detailed breakdown of each of my meals for the day. Food allergies can significantly contribute to the number of seizures your body has, so it is extremely important to determine if you have any food sensitivities that may be seizure triggers (external factors that can provoke seizures). The sooner you find them, the sooner you can eliminate them, so be sure to keep an eye out for patterns in your diet and seizure activity. Soon after I began doing this for myself, I discovered a sensitivity of my own to Monosodium Glutamate (MSG). Once I eliminated this food ingredient completely from my diet, my seizure activity immediately decreased. It has been my experience that, by putting good into your body, you are actually healing yourself from the inside out.
In addition to sensitivities, monitoring your diet also allows you to see whether or not you’re getting the correct nutrition necessary for your body to be healthy. Your brain needs brain food, feed it properly so that it can function properly. Altering my diet allowed me to stabilize and improve my Catamenial Epilepsy, which is why I highly recommend every woman with the same circumstance to consider doing the same.
***Here’s a quick tip I learned while keeping my journal: Having a protein rich diet improves brain health. When I say “protein” I mean naturally occurring protein found in fish, chicken and red meats. These foods act as major energy sources for your brain, promoting optimal brain function.
Secondly, keeping track of your sleep patterns can be helpful because lack of sleep is a notorious trigger for seizures. Instead of giving a detailed description of each night’s sleeping pattern (let’s be honest, that would get monotonous), simply record the number of hours you slept the night before. It’s always good to be aware of all the factors (even the potential ones!) whenever you have a seizure. Being tired makes your body susceptible to more seizures, so be sure to maintain a healthy sleep schedule! Hopefully keeping track of your sleep patterns in the journal will help you to determine whether or not your current sleep schedule could be improved upon.
Here’s what one of my typical journal entries looks like:
Monday, October 5th 2015
Breakfast: 1 egg, whole-wheat toast, watermelon, OJ
Lunch: Yogurt (Plain, Greek), granola, strawberries, water
Dinner: Chili, cornbread, water
Sleep: 8 hours
Moving onto the calendar, I like using this to keep track of the other information because it is convenient for looking at recorded data over a large span of time. If I put it in the journal I would need to refer to a calendar at some point anyway, so for the sake of efficiency I combined the two.
***Side note: It was the very first calendar I used to keep track of my seizures and menstrual cycles that inspired the name of this blog! It happened to be brand new and just lying around the house so I figured, “hey perfect!” After using it for a few months, I realized the humor in the title of the calendar in comparison to my circumstance. And it’s still serving a purpose six years later! What better calendar to record seizures in than one named “SEIZE THE DAY”?
Because I’m recording 3 different types of information in the calendar, I like to color coat everything so that I don’t get confused and mix things up, thereby defeating the purpose of the calendar. So, for a seizure, I mark a blue star in the box of the day it occurred. For my menstrual cycle, I write my initial in the upper right hand corner of each date with a pink sharpie.
***Side note #2: Have you ever heard about the possibility of women’s menstrual cycles becoming synced if they spend a lot of time around each other? This is not a myth! Your own hormones can substantially impact the hormones of other women around you and vice versa, which is why I like to keep track of the menstrual cycles of the other women living in my house, as well. By doing this, I have discovered that my mom’s and sister’s menstrual cycles have occasionally contributed to a few of my seizures. Marking menstrual cycles with an initial instead of a star, for example, also makes it very easy to distinguish between cycles (i.e. “K” for me, “E” for my mom and “L” for my sister).
As for emotional details (stress, PMS, etc.), I like to use a yellow highlighter and highlight the date number in the upper left hand corner of each individual box. So far, this method of color coating has worked exceedingly well at keeping everything clear and concise. Because Catamenial Epilepsy is caused by the menstrual cycle, it is so helpful to continually record even the smallest of details in a calendar, which is why I recommend for every Catamenial epileptic to adopt this method.
Thanks to every calendar and journal I have kept for the past 6+ years, I can look back over the extent of my condition and actually see every bit of progress I have made. This is why making the time to keep track of my Catamenial Epilepsy has been worth every bit of effort made on my end. The truth is, possessing extensive records such as these has been nothing but helpful over the years. Most importantly, both the calendar and the journal have allowed me to see the improvement I have made up to this point while dealing with my condition. When dealing with something like epilepsy, it can be so easy to become discouraged and throw in the towel. For those of us with Catamenial Epilepsy, we’re probably PMS-ing anyway, so giving up will seem like the most convenient choice regardless of the long-term effects.
Keeping a journal and calendar is also a great decision to make because it helps you to kick both discouragement and hormones to the curb. How can you get discouraged when you have every detail record that will, no doubt, display more improvement than you actually realize? Thanks to my calendar, I know the exact number of seizures I’ve had annually since 2009 (when I was first diagnosed). Therefore, I also know that each year my total number of seizures decreases. Even when I don’t feel like things are improving, my calendar and journal provide me with concrete proof of the exact opposite. So, for all you ladies out there striving to keep a positive perspective while living with Catamenial Epilepsy, simply Seize the Day and buy yourselves a calendar//journal!
1Najafi, Mohammadreza et al. “Progesterone Therapy in Women with Intractable Catamenial Epilepsy.” Advanced Biomedical Research 2(2013): 8. PMC. Web. 4 Oct. 2015.
***I do not own any of the images above advertising Paper Source or Rifle Paper Co. notebook & calendar products. According to the order in which the images appear in this blog post, I have provided the image source and owner information below.
“Vintage Blossoms Notebook Set” image: Rifle Paper Co. (www.riflepaperco.com)
“Tapestry Everyday Memoir Notebook” image: Rifle Paper Co. (www.riflepaperco.com)
“2016 Appointment Everyday Wall Calendar” image: Rifle Paper Co. (www.riflepaperco.com)
“New York-Paris Everyday Memoir Notebook image: Rifle Paper Co. (www.riflepaperco.com)
“2015-2016 Chalkboard Calendar” image: Paper Source (www.papersource.com)
“2016 Paper Source Art Grid Calendar” image: Paper Source (www.papersource.com)