Guidance at the beginning of my diagnosis with Catamenial Epilepsy was practically impossible to find. It was 2009 and the very name “Catamenial Epilepsy” had not yet graduated from medical theory to medical fact. If you typed “catamenial epilepsy” into Google 11 years ago you only received medical journal articles that barely referenced seizures influenced by hormones. My family and I could only find ONE article that actually used the name “Catamenial” when describing such a mysterious type of epilepsy. I’m putting it delicately when I say that the research process was abysmal in those days.
I wasn’t even seeking a cure for my condition, I simply wanted to know how to live with catamenial epilepsy. What do I do to work toward healing? How do I return to my normal, everyday routine in a way that doesn’t put my safety at risk? What shouldn’t I do that might cause my condition to worsen?
At 15 years old, I had a lot of faith in modern medicine and their ability to help me so these seemed like simple, even expected questions from where I stood in my state of confusion. There was a pattern with the many neurologists I visited and it was a tendency to downplay my condition. Maybe it was because of the fact that each doctor saw many people dealing with seizures so it was just the “norm” for them. But it wasn’t the norm for me, not even close. I went from fretting over whether or not I was going to be able to make it to my school’s football game on Friday night to how I could still be a normal teenager while living with a potentially harmful disease. The worst part is that is was this downplaying behavior from my doctors that prevented me from realizing how truly careful I needed to be in every area of my life.
Ignorance is not always bliss and doctors can’t always be trusted. Truthfully, they can never be trusted and everything they recommend needs to be thoroughly researched before you make a decision. My own research along with my personal experience with epilepsy has taught me so much more than any doctor ever has.
I can look back now over the decisions I made early on and the majority of them I would do differently if given the chance. That being said, I cannot say that I am not grateful for all that those poor decisions have taught me. I would not be who I am today without those mistakes therefore I cannot regret them.
However, I would regret not sharing a few pieces of advice that I hope will serve as guidance for those who are dealing with similar circumstances. I may be grateful for my own growth during my journey, but I also wish to prevent others from making the same mistakes. So, for the sake of sparing another from a few gruesome trial and error processes, here are the top three actions I wish I had taken at the start of my journey with Catamenial Epilepsy.
#1 Diet – Go Organic, eliminate processed foods completely, and pay closer attention to ingredient labels.
The food you put into your body has a monumental effect on every area, most especially your brain. Understanding the dangers of synthetic foods is imperative to improving your seizures because synthetic ingredients will prevent the human body from functioning correctly. These influential factors will also make correcting problems an impossible task. Ingredients like Xanthan Gum (a cheap emulsifier) and Carrageenan (thickening agent most commonly found in dairy products) are formulated in a lab with chemicals and who knows what else (most of the time we don’t want to know…yes, it is that gross!). The greatest problem aside from the synthetic nature of these ingredients is a little fact that the human body cannot digest them. The body does not know how to correctly process these synthetic components found in way too many of the foods available in every grocery store. The types of foods you most likely eat on a daily basis.
Feed your body natural foods (such as a strawberry or an egg) and it knows exactly how to digest each as well as which naturally occurring nutrients to store in order to maintain your good health. But, give it a sulfated polysaccharide (carrageenan) and the body has absolutely no idea what to do with it or where to send it because, in all honesty, it is not meant to be consumed. This causes problems in digestion and the body is forced to take guesses on what to do with these alien ingredients. Sounds concerning, doesn’t it? Well, that’s only the beginning! Here’s the really concerning part about these guesses: the body won’t absorb the alien ingredient because it does not recognize it nor will it excrete the synthetic substance just in case it might be necessary for the future. So what happens to this mystery food? Well, in all of this confusion the body decides to store it. By storing it, these synthetic ingredients (which are essentially toxins) begin to accumulate in various areas, usually in the cells or the bloodstream. One toxin might not create any issues for your total body health, but synthetic ingredients are found in pretty much all processed foods these days and daily consumption will result in quite the collection of toxins. You may not realize this in the moment you’re eating those potato chips or drinking that soda, but you are slowly creating an army of toxins with each bite and every sip that can easily wreak havoc on your body.
Making food from scratch is the only way you can truly guarantee you are eating toxin-free meals. I know home cooking is a lot of work, trust me, I KNOW. But, reducing my seizure activity makes it all worth it! Not to mention, the food tastes way better! When I was eating processed foods constantly I never noticed how fake and flavorless they were, sometimes certain products can even taste like plastic…hmmm, I wonder why that is? Maybe it is because these foods contain many of the same ingredients you find in plastic products. You wouldn’t willingly eat a plastic straw or a plastic water bottle, right? So why would you willingly eat plastic disguised as food?
The truth is, “home cooking” isn’t just a term to help market Southern-Style breakfast restaurants. It is a lifestyle choice that will have a positive impact on your entire household. Luckily, we’re living in an age of technology where things like recipe blogs are easily accessible and filled with lots of fantastic recipes to get you started on this new path. Plus, you have access to thousands of healthy recipes without it costing you a dime. The question here isn’t about IF you can do this. It’s all about WHEN. When are you going to make the necessary change for better health?
Personally, I kept up with my usual processed foods diet that I had before my diagnosis with epilepsy for at least two years post-diagnosis. I hate to think of the damage I was creating by continuing to accumulate synthetic toxins from my food AND my newly added anti-epileptic drugs (AEDs). Alone, each component has the ability to trigger seizures so I can only imagine what was happening to me with the two of them combined.
It took a crisis situation to wake me up enough to actually consider the idea that maybe, just maybe, my diet could be contributing to the overall state of my brain health. I was lying on the floor of a P.F. Chang’s Restaurant having a full-blown grand mal or tonic-clonic seizure. Hormonally, the time of the month did not make sense for such an occurrence. My parents were out of ideas as to why the seizure happened until my grandma suggested that maybe something in the food caused an issue. What was meant to be a simple and helpful theory actually turned out to be the revelation my parents needed in order to take that first step on the path toward long-term healing. Soy was the culprit that day and I have avoided it ever since.
#2 Bloodwork – Go deeper, explore the problem inside, and then work to correct deficiencies/abnormalities.
Some of you may be thinking, “Seriously?! More bloodwork? I just had every test known to man performed on me when I was in the hospital and received my diagnosis!” If someone told me to get more bloodwork done back when I was fifteen I probably would have disowned them. There is no doubt in my mind that I would not have taken the advice because I had just left a hospital and also because it takes effort to go to the lab. I was a teenager, I had much more important things to be doing with my time like texting or painting my nails.
However, when I say the words “bloodwork” I’m not talking about your average test. I’m talking about a bloodwork panel that will thoroughly analyze your primary vitamin and mineral levels. The test I have in mind is called the Organic Acids Test (OAT) and it will analyze all of these and more.
When I was first diagnosed, I trusted that my doctors had thoroughly reviewed every piece of information that could be pertinent to understanding the cause of my seizures. Nope. It turns out the doctors barely scratched the surface by doing the bare minimum. So, once again I was let down by my doctors and it was left up to me to figure out this epilepsy puzzle.
Just a little FYI for my fellow epileptics, this will happen often so I recommend keeping your expectations very low when it comes to modern medicine personnel if you wish to be satisfied with their advice.
That being said, let’s get back to the Organic Acids Test (OAT). I am such a big fan of doing this test because each human body is unique. Therefore, each is going to possess it own unique deficiencies. The sooner you find these deficiencies, the sooner you’ll be able to take yet another step on the path toward healing. And not just any healing, but healing that is customized to fit your specific needs. Once again, ignorance is not bliss where your health is concerned. Although modern medicine offers a wide variety of convincing medication for every epileptic, the reality is that a medicinal regimen needs to be tailored to the individual.
Bloodwork will help you understand how to create your own regimen. Personally, I discovered that I am deficient in the majority of my primary vitamin and mineral levels. Specifically, I found my concerning Vitamin D deficiency. If you didn’t know before, let me share that a deficiency in Vitamin D alone is enough to trigger seizures in some individuals. The healthy level should fall between 30 and 100. My level was 1 at the time of my first test. One! It might as well have said “Nada.” What good is a level of 1 Vitamin D going to do in my body? It’s barely holding on to its existence in my body, I really don’t think there will be any leftover Vitamin D to perform the duties it is supposed to according to nature.
I am happy to report that I have been able to correct this severe deficiency in a matter of months thanks to Seeking Health’s Vitamin D complex liquid drops. My levels are now at a healthy 67 and I continue to use Seeking Health’s supplement on a daily basis.
It is because of bloodwork that I also discovered my hormone deficiencies and my estrogen dominance. Obviously, there was some hormone imbalance present (hence my special diagnosis of Catamenial Epilepsy instead of simply Epilepsy), but I never understood just how seriously low my levels are. This insight has guided me throughout my entire journey with epilepsy and it has allowed me to take the necessary steps that will result in my healing. Knowledge is power when it comes to living with epilepsy. The more you know, the better equipped you will be able to handle the task at hand…Finding the source of your problem. Band-aids are for amateurs, you deserve answers! In my experience, this begins with blood work.
#3 Eliminate Hormones – Find and remove the common hormone-ridden products from your lifestyle.
This particular action is crucial for those with Catamenial Epilepsy because your seizures are hormone-related. Furthermore, there is a problem with your hormones; they are imbalanced and you will not find balance if you are constantly exposing your body to synthetic hormones.
Why is it so important to avoid synthetic hormones whether you have Catamenial Epilepsy or not??
Well, synthetic hormones are a bit like synthetic food ingredients (as I discussed above) they confuse the body. Your body is already hard at work making progesterone, estrogen, testosterone, cortisol, and so on. When you feed synthetic hormones to your body they disrupt this production by posing as the naturally produced hormones that are meant to be in your body. These imposter hormones cause your overall hormone levels to increase drastically.
So drastically, in fact, that your body reads the data and backs off on its natural production so as to maintain healthy levels and not create an abundance. This may not sound so bad, but in many cases, the body will stop production altogether because the hormones to maintain healthy levels are mysteriously being supplied from an outside source so why should they continue production?
The human body is logical in its decision-making process and, on paper, this may seem like the correct decision. However, synthetic hormones are not an adequate replacement for the real thing. Here’s a football analogy for all of my fellow fans out there: synthetic hormones are second-string to the starting hormones, our REAL hormones. They may appear to be good enough to handle keeping the body healthy, but they are nowhere close to the job performed by real hormones. Our natural hormones kick booty out there on the playing field by actively reading levels, making changes if necessary, and adapting to the body’s hormonal needs accurately and consistently. Can synthetic hormones do this? Not a chance! You get exactly the same hormone every single time because you are using a pre-made type of hormone. It doesn’t change or adapt to your body’s needs. When synthetic hormones begin functioning like the first-string hormones you are at risk for both an abundance or a deficiency. In short, synthetic hormones do nothing but present a lot of potential problems for your body.
Also, if you suddenly decide to stop feeding your body those synthetic hormones your body is not aware of your decision until a deficiency begins to form and it is needed to produce natural hormones again. The thing about hormone deficiencies is they can be a bit of a challenge to correct because we are constantly exposed to synthetic hormones on a daily basis. Our air, food, and cosmetics are all guilty of containing such elements.
So, although we can’t do much about avoiding synthetic hormones in our air there are other areas where we can begin to reduce and hopefully eliminate them altogether.
The first product containing boatloads of synthetic hormones is perfume. I had a hard time eliminating this product because I have so many favorite scents from various brands and, let’s be honest, it is really nice to smell nice! However, all perfumes are filled with synthetic ingredients (hormones are just one of the many). The liquid form as well as the application areas make it an easily absorbable product. Spraying the perfume on the skin gives it direct access to your bloodstream through the pores of your skin. Wearing perfume means exposing your body to a multitude of toxins that will only hurt your body and worsen your hormone imbalance. It is impossible to restore balance if you are actively contributing to the imbalance. Perfume smells good, but what is more important…Smelling nice temporarily or being healthy???
Organic essential oils are a fantastic replacement for perfumes and you can find them at a variety of stores. I highly recommend Mountain Rose Herbs for essential oils. Their products are both good quality and very affordable.
Other products to avoid are scented deodorants and pads or tampons. Once again, we have the scent issue, but when it comes to these easily absorbed products unscented is always the way to go. It can be so easy to overlook everyday products and not even realize just how toxic they are or how influential they can be upon your hormones. But sadly they both possess the ability to easily do so with consistent use. Sensitive Unscented Freedom deodorant is an excellent aluminum-free option if your current deodorant brand does not offer unscented. As for pads or tampons, you can find an unscented product from the majority of products available. If you would like to take the good health of your current pads to the next level, try organic feminine products. Rael is my favorite product because they are so silky smooth and their extensive selection is truly wonderful. Honest is another company with a good selection of organic products.
Makeup is another product to be wary of when it comes to hormones. Unfortunately, pretty much everything in makeup products is synthetic already, but you can make an extra effort to avoid scented products. Unfortunately, this is one product I have not been able to eliminate from my cosmetic regimen despite my strong desire to do so. Those baggies under my eyes won’t cover themselves and I’m still shell-shocked from that one time in high school when I decided not to wear makeup and a classmate asked me if I had a black eye. Yeah, that wasn’t a very fun experience so I do still use makeup, but I actively avoid all scented products. Liquid foundations are frequently guilty of adding a fragrance compound to their products so be wary of this and try to avoid it whenever possible. You may not be able to eliminate makeup completely but at least you can try to make the best of a not so great situation.
As far as food is concerned, there are a few products in particular that have a strong effect on your hormones and should be avoided in order to promote hormonal balance. The first is Rosehip. This herb is most commonly found in herbal teas or dessert type foods, anything with a synthetic rose flavor. It will increase estrogen production within your body, which is why it is known as an estrogen inhibitor. When you’re suffering from seizures caused by estrogen dominance, this is the last thing you want to feed your body.
Red Raspberry Leaf is similar to Rosehip. It is most commonly found in herbal tea form. I have learned the hard way that this herbal tea will greatly increase seizure activity and it will cause an increase in estrogen production. Basically, Red Raspberry Leaf will scramble your hormones even more so than they already are. Completely avoid both whenever possible.
Soy is another food to avoid. Look for codenames for soy in other products such as soy lecithin, soy protein, hydrolyzed vegetable protein (HVP), mono-diglyceride, glycine max, monosodium glutamate (MSG), etc. as well because you will want to avoid every ingredient sourced from soy.
Soybeans are an estrogen inhibitor and they encourage increased estrogen production when consumed. They may seem like a healthy thing to consume because they are a natural food product, but their effect on the human body is negative in more ways than one. Not to mention soy is a common seizure trigger for many epileptics, not just those with Catamenial Epilepsy.
Lastly, make sure to be extra careful with dairy products. For starters, always go organic no matter the extra cost because inorganic products are sourced from cows that have been injected with dozens of hormones. The poor cow is doing its job just fine, but the dairy big-wigs insist on thicker, thinner, sweeter, etc. products and they’re willing to practically poison the cow and therefore the consumer to get their way. It’s always about the bottom line, not the safety of the customer. Even organic dairy products have plenty of flaws that do nothing to help balance your hormones. Vitamins are constantly added even though they don’t belong because they are not naturally-occurring. But the organic companies are expected to compete with the big-wig inorganic companies so the consumer is often sacrificed for the bells and whistles. It’s really unfortunate, in general, but even more so when people aren’t aware that the amazing amount of “Vitamin D” in their product of choice is actually synthetic and will not benefit their bodies at all. Avoiding hormones in your average dairy products can be quite the challenge, which is why I recommend consuming raw dairy as often as possible. Raw means straight from the cow to you. When you go with raw products you can guarantee that your product is just as it is supposed to be…in its natural state and without additives. No synthetic vitamins, no preservatives, and definitely no hormones. Unfortunately, the Food and Drug Administration (FDA) has made it impossible to sell these products in grocery stores, therefore you will need to purchase such products from an individual farm. The good news is there are many of these types of farms in existence. You will want to utilize the internet in order to find one that suits your needs.
Well, there you go, these are the three actions I wish I had taken when I was fifteen and newly diagnosed with epilepsy. I know that these changes may seem overwhelming because they will alter your lifestyle, but each will benefit you greatly.
Plus, epilepsy has most likely already flipped your life upside down so what’s a few more changes in the overall scheme of things? Especially when it is a positive change that will promote healing.
The choice is yours.
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