GLOW

One of the most frustrating things for me about having seizures is the feeling that I am very limited in my holistic treatment options. For the first time in a long while, I have gladly surrendered to the medications prescribed to me by my neurologist, and though I haven't worked up to a dosage yet that can stop my seizures, I am already noticing a difference in my energy level, and feel optimistic. It is difficult, though, to deal with the fear of possibly losing health insurance in the future and losing my medication, or the possibility that eventually the effects of the medication will plateau, and I will have to begin the frightening process of accumulating more prescriptions to ensure a certain quality of life. It is not an option for me to continue to have seizures every day, multiple times a day, and to be so limited in my activities and mobility. But with all of the potential side-effects and concerns, I want to be sure that I do what I can to complement the treatments I receive from my doctors.

I find YouTube to be an excellent source for introductions into the various experiences of others with trying health problems, and introductions into the treatments that have worked for them. They are only this: introductions, and as with all information distributed on the internet, should be watched with a critical mind. But I find that they give me some sense of optimism. As far as natural treatments I have currently incorporated into my life, I try to drink a tea blend of skullcap and passionflower every day, and have begun energy work with a psychic medium per the recommendation from another person with epilepsy whose seizures stopped completely after energy work. I am planning on visiting a chiropractor as well, and hope that this will help.

Here are some of the videos that I've watched that I've found compelling and informative. Perhaps they will help you, as well.

This is an excellent overview of natural treatment options. I was pleasantly surprised to find that their knowledge of research into more rare forms of epilepsy is quite impressive, and even more thorough than many neurologists. I had to be referred to a highly specialized neurologist, in fact, to be able to work with someone who was actually aware of the hormonal-related forms.

The two other ladies that I know with epilepsy also do their best to avoid gluten. I have been on a gluten-free diet for at least two years now. I wonder how much worse the seizures would be if I was still eating it?

This is where I learned about skullcap and passionflower's beneficial impact on epilepsy, although this video is specifically about a form of epilepsy that I am not familiar with.

If you look up "epilepsy chiropractor" on YouTube, a ton of results come up with testimonials like this. I'm very curious to see if I have any results from it.

And the ever controversial issue of epilepsy and medical marijuana. There are so many stories out there like this young man's. I, unfortunately, do not respond well to smoking any sort of substance, as it really fires of my nervous system regardless of the substance, but if I am able to get my hands on a tincture, I will eagerly try it. From what I've read, it is important to have the Indica (sp?) strain rather than the Sativa when it comes to treating epilepsy.

As noted in the first video, neither these people, nor I, am advocating weening off of meds. Epilepsy is a serious disorder, and should be treated appropriately. What is important, though, is to find the highest quality of life possible, and if any of these options aid that, then they are worth a go in my mind. 

Have you had any experiences with these treatments, or any others?

Indulge me for a moment. I tend to want to remain optimistic on this site, partially out of a certain sense of professionalism and a distaste for being too candid with strangers, but mainly out of a desire to remain encouraging to anyone who is suffering from similar problems and would benefit from making significant changes to their diet. But let us be realistic for a moment; sometimes properly taking care of yourself sucks. (Flat understatement.) Over time, I have learned that feeling sorry for myself earns me little comfort (or sympathy), and for the most part if anyone offers me words along the lines of, "That must be so hard," I shrug it off. I typically return their condolences by explaining how lucky I am to live in an area of the world where I have access to a great deal of foods that I tolerate, access to the information that I needed to understand the changes I needed to make in my life, and the creativity and resourcefulness required to flourish. I punctuate those truths with the most important one of all: that it is absolutely worth it, because I feel better than I have in years, and the memory of how unbearably awful I felt every day is enough to make eating the right foods an incredibly easy choice. 

But when you have a list of food restrictions the length of a college admissions essay, and are still managing chronic health problems, life can be hard--especially around the holidays. Last year around this time, I felt quite depressed and deflated. I had gone through months of rigorous testing and doctors appointments, and received no definitive answers except for a blood test which gave me a lengthy report of my food triggers on top of the ones I had already discovered during my elimination diet. I was just beginning to experiment with new foods, and the dishes that I brought with me weren't hits with the family or with my body. This year, my circumstances have improved, but I've felt a wave of anger about it all. Despite my strict diet and lifestyle modifications, I still get flare-ups of Candida, and I'm still unable to work because of my nerve inflammation. I have to make all of my food from scratch, every day. This means that if I want to go on a trip, or even leave my home for a significant amount of time, I have to plan, cook and pack, which can exacerbate the aforementioned inflammation. If family or friends want to eat out, I often have to eat beforehand, as accommodations can't always be made for me. This makes me quite conspicuous, and often results in everyone talking about my health problems for the bulk of the night. (I'm still learning the art of redirecting conversation.) It ends up being quite difficult to not feel like my identity is completely shaped by what is missing in my life, rather than what enriches it, like my main loves, music, art and photography. 

Anger, however, can be a gift, and I hope to use that emotion to help energize my next wave of searching for answers. I'm determined to make the new year a positive one. In the meantime, let's ride this wave of catharsis. Here, in answer to that need, and in answer to my many friends and family members repeated requests, is my current list of foods, spices and ingredients that I have to avoid. (Take a deep breath...)

The following can be eaten in extreme moderation: Sweet potatoes/yams & other sugary root vegetables including squash,  peas, grains of any kind (including quinoa, amaranth, buckwheat, etc.), foods high in fructans & inulin like endive, artichokes, and many of the foods I've already listed.

This seems to be a complete list. No doubt, those friends and family members who have asked will now be able to see why I haven't indulged them thus far. It is an intimidating list, and one which doesn't acknowledge those foods that I try to avoid for ethical & environmental reasons, such as veal and many fish. I am, however, fully aware of the need to pick my battles, so I can't claim to never consume farmed Atlantic Salmon or questionably sourced chicken or turkey if I am eating at a restaurant or as a guest in someone else's home without other options. 

Much gratitude and respect to anyone who has made it this far. Hopefully those of you who can relate to this will at least find comfort in knowing that you are not alone.