A “New Normal”I was diagnosed with Epilepsy at 8 years old. My whole life has been a roller coaster with doctors’ visits, hospital stays and surgeries. I had times where I was seizure free and felt like my Epilepsy didn’t exist. Then there were times when I was having them daily. I’ve made multiple medication changes throughout my life and it felt like playing Russian Rolette with my brain. I wasn’t able to drive and was stuck walking or taking the bus off and on in my life. The only thing I knew was that my Epilepsy was controlling my life and the idea of “normal” never seemed possible.
During 2015 I was at my lowest point. I was transitioning off Keppra and onto Zonisamide. The medication caused me to lose drastic amounts of weight and I developed a gastritis. Depression set in and I could barely eat and had no energy, it was a struggle to get through the day. I didn’t want to try anymore, I felt like I was dying. I dreamed of a different way of life one without medication, one without thinking about my seizures and one that was “normal”. It felt so out of reach.
In the late Fall of 2015 my sister called and said “Have you looked in to the ketogenic diet”. I knew about it but didn’t know if it was right for me but at this point I felt I had nothing to lose.
I called my Doctor and told him that I didn’t want to be on Zonisamide anymore and that I wanted to try the ketogenic diet. He supported it and I began the ketogenic diet right away. Within three weeks I was off Zonisamide. I was still on some medication but I was on the least amount I had ever been on.
The first 3 months eating keto was the learning phase and I cried a lot. Beyond the minimal support of my doctor telling me to not eat more than 50 grams of carbohydrates daily, I was flying solo. I spent the next year learning about the ketogenic diet and finding out it was more than just a diet. It was a lifestyle and getting to my goal of minimal medication was going to take much more than just limiting my carbohydrates.
Each morning I spent a few hours researching online. I found apps to help me, I ordered books, found websites, listened to podcasts and created a social media account to look for others who were using keto. The issue I came up against was there were not that many adults using keto to control their seizures like I was. I found a community that was trying to lose weight and find a healthier way of living. Eventually I came across a woman using it to control her seizures. We started talking weekly on the phone and texting. Her support helped me get through the early days. She helped quell my fears of having high enough ketones to control seizure activity. She constantly reminded me that I still had a life to live and didn’t need to worry all the time. When I hit my year mark on keto I finally found a dietician who added additional guidance. Having my family and a community to support me made surviving this journey possible but it wouldn’t have happened if I wasn’t willing to do the work.
Committing to this lifestyle did more than just control my seizures, it set me free. I’ve created a new relationship with food, I have become a fantastic cook , I started my own business that focuses on whole body care, I work with companies that encourage a healthy lifestyle, I am driving and I found a peace within myself. I have no brain fog anymore, my moods are even, I smile more, and my world truly opened up. My view of the world no matter what it throws at me is manageable. This is not the end it’s the beginning of a “new normal”.
Jade- I have long since been a huge advocate of the ketogenic diet. I have seen it work miracles not only for seizures but for almost every disease, disorder, or other ailment that gets us. It’s amazing to me what the traditional medical and dietary guidelines are and what they have preached for so long and how wrong they have been. I think if we all were living the ketogenic lifestyle, we’d put big pharma out of business. I’m so glad you have found something that has helped so much and I encourage you to stay the course and teach as many people as you can about the ketogenic lifestyle. Thank you for sharing your story and keep us updated. Much love- Kate