Perserverance: the key to overcoming epilepsy

Note: Adam has very specific types of seizures and the recommendations in this post have been shown to treat his case; for your own safety, speak with your doctor before implementing any new treatments.

When I met Adam in 2009, he was having seizures every week. His seizures were not the kind you see on TV- instead, they were repetitive jerking movements in the arms and legs, but he was fully awake and could speak to me. His body temperature rose, almost feverish, and the slightest touch was uncomfortable to him, such a shirt or socks grazing his skin.

Adam’s seizures come from a Traumatic Brain Injury (TBI) that he suffered in a car accident when he was 11 years old . Every neurologist and EMT we’ve seen has a different definition of Adam’s seizures; no one can quite pinpoint the exact root of the seizure, which has made them difficult to treat. Adam’s had hundreds of seizures- some, known as “drop” seizures, make his legs buckle and he goes crashing to the ground. These instances have resulted in broken noses and too many stitches to count.

Adam has had several grand mal seizures in his lifetime- these are the serious ones that result in unconsciousness. You can read about the first time I witnessed a grand mal here.

I felt helpless when I saw Adam have his first seizure. Helpless because I could tell he was in pain but I couldn’t do anything to help him. I started logging the seizures and analyzed the environment and food we ate that could have been a trigger, I did research on alternative medicine (rubbing Frankincense on his feet-yuck!). Since the doctors couldn’t agree on a cause or pinpoint the type of seizure, I began to think it was more than just a short circuit in the brain.

If Adam jolted in his sleep, he would immediately yelp- and a seizure would soon follow. What he had was anxiety- and I quickly figured out that if I could calm him down, it would not progress into a full seizure. Because of this, I started to research anxiety medication that he could take- and I discovered a wafer to place under the tongue. I asked his neurologist for a prescription and he happily obliged. Since then, Adam has used the wafers in a variety of situations. His triggers can include:

  •  Excess caffeine
  •  Extreme heat
  •  Acidic foods too close to bedtime
  • Digital movie screens (especially action movies with loud gunshots and racing cars)

Since we began the wafers, Adam has also stuck to a sleeping, eating and exercise routine in order to regulate his body and mind. Eating healthy meals, away from processed foods, has had a huge impact on his health.

I believe that a seizure is a physical manifestation of energy in the brain; it needs somewhere to go. When Adam exercises, reads or stays busy, he doesn’t have seizures. He is expending his energy into activities during the day, which allows him to sleep through the night without jolting or awaking.

If you or someone you love suffers from seizures, do not lose hope! It can take a while to get the correct dosage and medication that works for you. Be your own advocate; so many medical professionals (even an EMT!) told me that the seizures I was describing weren’t actually seizures. Document your seizures and what you did and ate that day. Look into anti-anxiety medication if you find that you get anxious right before a seizure.

I am incredibly proud to announce that Adam is 6 months seizure-free. While we know that he will always take medication, he will likely never drive, and he could have a seizure without a triggering event at any time. But we choose to be positive. To understand that this is a day-to-day process, that even if it’s not a perfect science, we can be role models for others that are suffering from TBI-related seizures and offer the knowledge we have learned over the last several years.

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