Jade Nelson was diagnosed with epilepsy when she was 9 years old. Since then, she has gone through a variety of ups and downs—times when her illness was controlled and times when she has struggled. During the more difficult periods, she relied on a regimen of medications to keep her brain function normal, and dealt with the side effects as best as she could. It was not until she reached her 30s that she learned she could use a ketogenic diet to control her epilepsy. She thought the ketogenic diet would be the end of her journey, but in reality, it opened the doors of a new beginning. Today she is a wellness educator, an epilepsy advocate and a licensed massage therapist. Here’s her story and how using the keto diet to control her epilepsy completely changed her life.
I had my first seizure in the summer of 1987, about a month before my eighth birthday. A year and a half later, in spring 1988, it was determined that I had a scar on the left side of my temporal lobe. I was officially diagnosed with epilepsy.
At the time, my diagnosis never felt like the end of normal life; it was the way my life was unfolding. Luckily, my family helped me take my most difficult epilepsy experiences and learn to become stronger and more determined. My mother, who was a nurse, made sure I was well-educated about my epilepsy and my medications. She gave me the gift of self-empowerment through knowledge, which continues to be a cornerstone of how I live. With my family’s support, I have strived to prove that epilepsy does not define me. Instead, it fuels my desire to change myself and the world. I have faced judgement, other’s fears, personal embarrassment and a variety of other challenges. My parents helped stand up for me and fight those judgements until I was able to do it for myself.
Over the years, as I got older, I changed medications fairly often, typically because they stopped controlling my seizures or the side effects became too difficult to deal with. I have been on Phenobarbital, Tegretol, Gabitril, Lamictal, Carbatrol, Keppra, Vimpat, Zonisamide, Ativan and Kolonipin, and I’ve been told by my doctors that I would always have to be on medication. And although they controlled my seizures, the side effects were terrible. They included sleeping for 10 hours at night, learning challenges and constant headaches. My emotions were also hard to control and I was on a constant roller coaster, feeling sad one minute and depressed or angry the next. The sad truth is that because I was diagnosed with epilepsy at such a young age, these side effects seemed “normal” to me.
As I continued to age and began to take on more of the burden of managing my own health, my biggest worry shifted from the side effects to the cost of the medications. Then over time I began to think more about what the medications were doing to me and started to envision my life without medication. I wondered if my personality would be different, would my stomach would feel better and would I sleep better… the list went on and on.
In 2014, after being seizure free for three years, I had a seizure at swim practice, I had been struggling with auras and my medication was becoming really expensive, even with insurance. I decided to change medications and I went with a generic one, knowing full well that generics had a 20 percent variance and had caused issues of breakthrough seizures for me when I was younger.
Unfortunately, as I went through the process of changing medications, I battled side effects like I had never experienced. Within a year, I had developed gastritis, lost 25 pounds and was forced to cut back on work. I lost my joy: I struggled to get out of bed in the morning and I cried every day. I was ready to give up and give in to my epilepsy. It felt like I was spending my life fighting a diagnosis with medications that felt like they were killing me.
Discovering the Keto Diet
It was during this period of struggle that my younger sister called me one day and suggested I look into the ketogenic diet. This phone call changed my life. I began to feel that my dream of being medication-free could become a reality, and living a “normal life” was within my grasp.
Although my neurologist was on board with eliminating one of my medications and giving a ketogenic diet a try, I spent a significant amount of time researching the diet myself. Each morning I spent hours researching online, my husband found apps to help me, I ordered books, looked at websites, listened to podcasts and created a social media account to look for others who were using a ketogenic diet to control epilepsy.
Using Keto To Treat Epilepsy
In my research, I learned how the keto diet has been used for years to treat seizures and epilepsy. Through following the keto diet, that is, eating mostly high fat and low carbohydrate foods, the body changes its energy source from glucose to fat through a process called ketosis. Ketosis occurs when your body goes into “survival mode,” because your typical energy source (carbs, a.k.a glucose) is low, and instead, the liver produces ketones by breaking down fats.
The ketogenic diet and the resulting higher ketone levels have been shown to lead to better seizure control and treat epilepsy. Additionally, the ketogenic diet helps to reduce the amount of glutamate in the brain, enhancing the synthesis of some neurotransmitters, making it less likely for a seizure to occur. You can learn more about the keto diet and what foods to eat here.
As I started my journey using the keto diet to treat my epilepsy, I connected with another woman who was using a ketogenic diet to control her seizures. Her support helped me get through the early days, and she eased my fears of having high enough ketones to control seizure activity.
And of course, having my family and a community to support me made surviving this journey possible! However, the change wouldn’t have happened if I hadn’t been willing to do the work to revolutionize my lifestyle.
The Keto Diet Changed My Life
Committing to this lifestyle did more than just control my seizures—it set me free. I’ve forged a new relationship with food, become a fantastic cook (check out my Golden Pumpkin Fat Bombs recipe here) started my own whole body care and personal empowerment business and I work with companies that encourage a healthy lifestyle for their employees. I’m able to drive, I take much fewer medications, and I have found peace within myself. The keto diet has changed me physically as well. I no longer suffer from brain fog, my moods are even, I smile often, and I feel like I am living in a new world. I feel like I can conquer anything the world throws my way!
Once a barrier, epilepsy doesn’t hold me back anymore. Using the ketogenic diet to control my epilepsy has transformed my life and helped my dream of sharing my story and empowering others into a reality.
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