Catamenial Epilepsy is one of those diseases that is rarely discussed and hardly researched, but I believe it really needs to be for the sake of those suffering from it. Google can offer you information on the basics of this disease, and when I say “basics” I really do mean the very tip of the iceberg. But, where is the non-sugar coated information that will actually help you combat this disease? It has been my experience that this type of knowledge on Catamenial Epilepsy cannot be found in just one place. Finding information on Catamenial Epilepsy is like trying to piece a puzzle together where each piece comes from a different source, but ultimately results in some clarity.
I was diagnosed with Catamenial Epilepsy on March 25, 2009 when I was 16 years old. Believe it or not there was even less available information on this subject at that time. Here I am now, six years later, with a completed puzzle and a world where accomplishing this task can still seem impossible at times. It was a roller coaster ride trying to figure this condition out in order to contain my seizures and return to normal life as best possible. So, I am writing this article for every woman out there struggling to live with Catamenial Epilepsy without ripping her hair out over the frustration that comes from the lack of knowledge doctors seem to have on this condition. I’m hoping my experience will shed a little more light on the subject.
From the start of my diagnosis I have learned one very important thing: listening to your neurologist with absolute faith is the worst possible thing you can do. The doctor’s lack of knowledge on the subject of Catamenial Epilepsy also extends into their ability to counteract it. Two solutions are typically offered: medication and birth control. Although I’m not at all stoked about taking medication (due to all the extra health problems it is notoriously known to cause), it is candy compared to birth control. I will never understand why doctors seem to think birth control is the logical solution to any type of hormone problem whether it is complicated like Catamenial Epilepsy or simple like menstrual cramps. Birth control is already detrimental to a healthy woman’s body because it is filled with synthetic hormones. So, for any woman with a hormone imbalance it’s basically the food grade version of poison. I say this because, from my experience, it not only worsens the problems you are experiencing and it creates completely new problems, as well. (Here’s a tip: avoid anything synthetic; it is usually very, very bad for your body!)
Unfortunately, I learned the dangers of synthetic hormones the hard way. My biggest hormone struggle is with estrogen. I have too much of it in my body and not enough progesterone. Without a balanced amount of progesterone, estrogen (the excitable hormone) goes crazy in my body because there is nothing to counteract it. As a result, the estrogen builds up in my brain forcing my body to find an alternative way to disperse of it. This alternative dispersion is through sequences of accelerated brain waves, which is a seizure.
After discussing this dilemma in great detail with the neurologist at the Mayo Clinic, she put me on a birth control with a synthetic estrogen as its base. At the time, my main frustration was with her decision to prescribe an estrogen-based birth control instead of one with a progesterone base. Now, my main frustration is with the decision I made to take the birth control at all. After taking the birth control for only 21 days, I had 15 grand mal seizures in one week. This “side effect” of the birth control put me in the hospital. My advice: if don’t want to throw a monkey wrench into the state of your Catamenial Epilepsy, avoid birth control at all cost.
Not long after the birth control catastrophe, I realized another important factor that happens to have a huge impact on my epilepsy…Diet. Growing up, I ate whatever I wanted without thinking about the impact it might have on my body. Everyone else around me ate the same stuff without showing any serious health problems, so I figured “if it’s not broke, why fix it?” Well, I have come to learn that (as usual) it’s not good to follow the crowd. Just because no one was growing an extra limb (yet) didn’t mean I shouldn’t be concerned about the quality of ingredients I feed my body and the potential negative effects it could have on my health. I learned this the hard way by having a seizure in the middle of a very crowded P.F. Chang’s restaurant, but, nonetheless, it caused me to research diet and learn more about the impact it can have on me as an epileptic.
It turns out that I have an extreme sensitivity to Monosodium Glutamate (MSG), also known as the ingredient found in basically every staple food product known to man. I’m only going to give a brief description of MSG here, but I will soon write an entire post dedicated to the subject. Whenever I eat MSG I will have a seizure within 30-60 minutes later and a second one shortly after. Why does this ingredient affect me so much? I think HowStuffWorks.com provides an excellent answer: “MSG has been labeled an excitotoxin because it is thought to have the ability to over-stimulate cells to death.”1 When it comes to Catamenial Epilepsy, a hormone imbalance is already present so, if you’re estrogen (excitable hormone) dominant like me, of course a synthetic ingredient acting as an excitotoxin is going to cause problems! My brain is already excited enough, I don’t need food contributing to my likelihood of having a seizure.
The truth is, MSG is only one of many ingredients that can act as a seizure triggers. Once I became aware of the serious impact diet has on the stability of my seizures, I changed everything. I avoided MSG at all cost and I made the effort to become aware of other common ingredients with harmful impacts, as well. This may sound like a huge task to take on, but there is a lot of junk in our food so it’s actually very easy to find this information. The good news is there are also a lot of good foods out there, free of these harmful ingredients.
Changing my diet improved my overall health. I went in with the single objective of reducing my seizures through this lifestyle change. But, as it turns out, I was doing more than improving my brain activity; I was healing my digestive system as well. The toxins in my original diet had seriously affected my digestive system, which resulted in my inability to absorb nutrients correctly. Completely cutting synthetic ingredients from my diet allowed me to better absorb the nutrients that my whole body (especially my brain) had been deprived of. My poor diet impacted a gradual decline in my health with the end result being Catamenial Epilepsy. I so highly recommend making this change because it has played a monumental role in my improvement. I went from having a total amount of 54 grand mal seizures in 2010 to having 13 seizures in 2014. For the year of 2015, I have had 4 seizures so far and the year is already half over!
It took a diagnosis of Epilepsy to make me actually check the ingredient label on a food before buying it. Sad, I know. But, I consider this to be one of the many blessings that have come from my journey with this condition. I am no longer pumping my body full of toxins that will worsen my seizures and cause other health problems in the future. Catamenial Epilepsy aside, the right diet can help heal any health condition. It is amazing what the human body can do when you supply it with the right nutrients to keep it balanced and avoid deficiencies. It is important to understand this detox process will take years to fully rid your body of the toxins found in foods because they become stored up in areas like the fatty tissues. To help my body reach a balanced state while also dealing with Catamenial Epilepsy, I try to buy everything organic if possible (avoids pesticides), I only buy foods with real ingredients (specifically avoiding the synthetic MSG), and I’m extra careful with foods that could be injected with hormones (mostly dairy) or might contain synthetic hormonal ingredients. I have found that Trader Joe’s, Sprout’s Market, and Whole Foods Market are the best places to find good quality foods. However, even at these stores, I still find products with harmful ingredients so always be sure to check the label!
Here’s a quick tip: Trader Joe’s brand milk, butter, sour cream, heavy whipping cream and eggs are all excellent quality and hormone free! Many of their cheeses are good too!
In addition to my own personal experience with Catamenial Epilepsy, I would also like to share a few “scientific” insights that I have discovered through my own personal research. If there is anything I have come to learn since taking an independent approach to my health it’s that modern medicine only gives people a tiny bit of information on most health conditions. I have heard of people using cannabis to treat Catamenial Epilepsy from places similar to orange county dispesnary, we will have to see how this is supported with official research. By breaking through the tip of the ice burg and actually pursuing a deeper understanding of Catamenial Epilepsy, I have come to discover two factors that contribute greatly to this condition: Blood Brain Barrier and phytoestrogens.
According to the journal of Epilepsia, the Blood Brain Barrier (BBB) is a “physical and metabolic barrier, which serves to regulate and protect the microenvironment of the brain.”2 Basically, it is a barrier that prevents toxins, bacteria, and other harmful material from filtering into the brain. How does this apply to epilepsy? The BBB is vulnerable in that its permeability may be compromised by head trauma, stroke, or neuroinflammation.2 BBB disruption has a tendency to increase and intensify seizure activity.
At a time when my seizure activity was at an all time high, learning about this network of vessels helped to clear up my state of confusion. Here’s why: My blood brain barrier is permeable due to Neuroinflammation, “an early, non-specific immune reaction to tissue damage or pathogen invasion.”3 In my case, the pathogens invading my brain came in the form of Monosodium Glutamate (MSG) and artificial food ingredients. Due to my Blood Brain Barrier’s sensitivity to these chemical compounds, the toxins would filter into my brain and cause more seizures. Once I cut the foods containing these ingredients from my diet, my seizure activity returned to a stable level.
For those with blood brain barrier permeability, the pathogens capable of crossing the barrier and into the brain will vary from person to person. If you are experiencing an increased amount of seizure activity, I recommend looking for a pattern in your seizures. Keeping track of your activities, meals, and other daily occurrences in relation to the timing of each seizure is the best way to figure out if a pattern is present. It was only through close observation that I had been able to pin point MSG as the main cause of my increased seizure activity.
The second insight I would like to discuss is Phytoestrogen, a compound derived from an environmental source. Also known as “estrogen mimics,” phytoestrogens are naturally occurring estrogens found in a multitude of plants, many of which are part of the human diet. Although these phytoestrogens are naturally occurring, they are still an unhealthy form of estrogen that can have harmful effects on the body. Living with Catamenial Epilepsy for the past 6+ years has helped me to understand that the key to seizure stability is through hormonal stability. It can be very difficult to achieve this stability when “estrogen mimics” are found in a multitude of common foods including soybeans and caffeine.4 Though phytoestrogens are naturally occurring, they do not interact with the human body in a natural, healthy way. As these estrogenic compounds4 strive to resemble the natural estrogen hormone, they only threaten to compromise the balance of hormones when digested. In the same way toxic pathogens cross the Blood Brain Barrier and filter into the brain, phytoestrogens filter their way into the core hormone system by posing as natural estrogen.4 Therefore, they have the potential to significantly influence a woman’s hormone levels, commonly causing a tendency toward estrogen dominance. Since estrogen dominance is the largest cause of Catamenial Epilepsy, this should raise concern for all women.
As an epileptic, I have come to find that my diet plays a pivotal role in my battle against seizures. Becoming aware of ingredients like phytoestrogens have helped me to alter my diet in a way that is healthy and beneficial for my epilepsy. This article gives a great overview of the topic and provides a guide on foods to avoid if you are interested in cutting phytoestrogens out of your diet.
1The editors of PureHealth M.D. “The Dangers of Monosodium Glutamate.” Howstuffworks.com. InfoSpace, LLC, 2010. Web. 3 April 2015.
2“The Blood-Brain Barrier and Epilepsy.” Researchgate.net. Epilepsia, 2006. Web. 30 June 2015.
3“Neuroinflammation.” Rndsystems.com. R&D Systems, 2015. Web. 30 June 2015.
4“Environmental Estrogens.” Energeticnutrition.com. Energetic Nutrition, Inc., n.d. Web. 1 July 2015.
Kaitlin Dennis is a student at the University of San Diego and a personal blogger living with Catamenial Epilepsy, a type of epilepsy caused by a hormone imbalance. Following her diagnosis in 2009 at sixteen years old, she made many significant lifestyle changes necessary to improve her health. These changes sparked her passion for Holistic living and clean nutrition. They also served as the inspiration for her lifestyle blog, Seize the Day Blog, which was created earlier this summer.
Her ultimate hope in sharing this knowledge with the general public is that it reaches a variety of people struggling with many different health issues and helps them as much as it did her. Overcoming any struggle is a step by step process, but having the proper education can help accelerate this process drastically.
Kaitlin is currently earning her bachelor’s degree in Communication with a minor in Marketing. Once she graduates, she plans on pursuing a career in Public Relations.