As many of you who read my blog know, I have epilepsy and I am trying my best to treat it naturally without the use of medication. Currently, I still take medication but a much smaller dose than I used to thanks in part by a healthy diet and lifestyle. If you want the extended version of my story you can check it out here, otherwise here is a brief rundown.
My form of epilepsy is not the well known form of epilepsy, that honor goes to the grand mal or tonic clonic seizure. Grand mals are characterized by loss of consciousness, falling to the ground and convulsing. They can be terrifying to witness and even more terrifying to experience. Should you witness one of these seizures, it’s important to know the first aid measures so you are prepared.
My form of seizures however are known as continuous petit mal or absence seizures. The symptoms of my seizures are quite different than that of a grand mal. I’m conscious, and my motor skills are not impaired. However, I do lose focus or train of thought when a seizure happens. It’s very brief but the most common thing is I will have a conversation with someone and I will stop midsentence and not even realized it. When my seizures occur, they happen continuously throughout the day and if not counteracted by a powerful sedative like valium or Ativan; can build into a full blown grand mal. Luckily for me, I haven’t had a grand mal in over 5 years.
I started having these ‘episodes’ when I was 8 years old. It was in the middle of the school day and my teacher knew there was something off but wasn’t’ familiar with petit mal seizures to know what the problem was. She even asked my mom if I had gotten into the medicine cabinet by accident.
My 3rd grade teacher wasn’t the only one who was clueless as to what was happening. My parents were at a loss as well. After my second seizure in 3rd grade, my mom took me to the doctor for an EEG and nothing showed up. I was then diagnosed as having aphasic migraines. After we moved to Boulder, I had both an EEG and an MRI. The HMO refused to give me an EEG while I was having a seizure because they would not have enough notice. The only way we were able to get an accurate diagnosis was when we went to Denver Children’s Hospital and my neurologist ordered an EEG while I were experiencing a seizure. The diagnosis finally, after a little more than two years, was epilepsy.
I spent the next 4 years trying different medication combinations and enduring the side effects that went with each and every one until we found Depakote. I still take Depakote to this day (after trying different meds years later) but I also have to live with the side effects it causes.
Some of these side effects can be quite debilitating and are almost worse than the seizures. Side effects I suffered from over the years are: weight gain, weight loss, mood swings, depression, anxiety, skin rash, vertigo, double vision, kidney stones (4 times), difficulty speaking, concentration problems and extreme nausea.
Until recently (the last 3 years or so), I’ve always kept my epilepsy under wraps. It’s not that I was ashamed of my condition, which is common for people with epilepsy. I just chose not to inform people about it unless it was absolutely necessary. While potential employers can’t legally discriminate against someone with a legit condition, it can subconsciously happen and I didn’t want my epilepsy to throw yet another potential obstacle in front of me.
My parents have always been adamant about not letting epilepsy define me as a person. They even asked me a question regarding how I saw myself early on in my epilepsy career. The question was, “Do you see yourself as having epilepsy, or being an epileptic?” I didn’t really see a difference at the time so I said that I’m epileptic. But as the years have progressed and I’ve dealt with my condition, I see the question for what it really was, “Does your epilepsy define you as a person?” I can easily say that now, epilepsy is not who I am. I remain diligent in this way of thinking about that to this day, even going as far as to correct people that say I’m epileptic.
Like my friend Jenny LaBaw, an amazing inspiration to not only myself but countless others, I’ve lived with epilepsy since I was 8 (I’m 30 now) and I do my best not to let my epilepsy keep me from doing things other people do. Some things are a little more difficult like obtaining a driver’s license and such but I was able to do that, albeit a little later than other kids at the time but I still got mine in the end. I was able to play competitive sports and really didn’t have many limitations. I graduated from film school, work in feature films as a visual effects artist and help members at my CrossFit gym with coaching and nutrition tips. These may sound sort of ‘run of the mill’ or boring to the average person, but for others with epilepsy, my accomplishments might appear to be quite extraordinary if not unthinkable to achieve.
It was actually Jenny’s video about her experience with epilepsy that inspired me to make this blog more than just a place to track my progress in my journey, but to help inspire others in their journeys as well. As you may remember, I shot a video of my story as well with the help of my friend Bill from Primal Palate.
Epilepsy, also commonly referred to as a seizure disorder is just that. A neurological disorder that affects our nervous systems in which seizures can occur. A seizure can be brought on by a number of different things like: low blood sugar, chronic stress, lack of sleep, alcohol withdrawal, stroke, and brain trauma to name a few. A seizure is not necessarily indicative of epilepsy however. If a person has two or more seizures of unknown cause, epilepsy is likely determined.
So what happens when a seizure occurs. My neurologist explains here:
“In most cases (localization related epilepsy) when a seizure occurs, the neurons in the hyperritable cortex begin firing and recruit nearby neurons to do the same. This firing becomes synchronous and if the seizures generalize then this can involve the whole brain or a regionally large area.” ~ Dr Laura Strom
It is important to note that seizures themselves are NOT a disease but merely symptoms of neurological disorders. There are also a multitude of types of seizures. The most common being the grand mal, where the person loses consciousness and convulses uncontrollably. However there are others that can go unnoticed. These include the petit mal or absence seizure where loss of alertness happens.
Jenny, who beat me to the punch for an Epilepsy Awareness Month post on her blog, describes the stages of seizures and their symptoms really well below:
No one knows for certain what will trigger a seizure in everyone. So for now, unfortunately, the anticonvulsant drugs used are merely a band-aid, treating the symptom rather than the underlying and unknown cause. There are however, common factors that will affect the seizure threshold including adequate sleep, alcohol consumption, blood sugar stabilization, stress levels, and proper nutrition.
Lately, I’ve been reading a book called “Treating Epilepsy Naturally” by Patricia A. Murphy. It’s been around for about 10 years or so and there is some excellent information in there connecting seizure disorders to a number of lifestyle and environmental factors. Since November is in fact Epilepsy Awareness Month, I plan to put up a lot more informational posts rather than strictly recipes in the coming weeks. One of them will most definitely be a review of this book. There is just way too much great information in there to not write about it.
I’ve also decided, in honor of Epilepsy Awareness Month to donate money earned for the “Bacon For A Cure” t shirts this month to the Charlie Foundation, a great charity dedicated to dietary therapy for epilepsy. The Charlie Foundation is the reason why I first became aware of dietary therapy to begin with. To learn more about this great organization, visit them here.
I really look forward to this month and posting more information regarding epilepsy and other people’s fight with it. Not too mention, there are still some stigmas surrounding epilepsy that I’d like to do my part to dispel.