I sat in the darkness of my bedroom and I knew that if my life ended right there, I was okay with that. I was tired of fighting, tired of living with epilepsy and just plain tired. At this point in my epilepsy journey I was too tired to go on.
In the previous twenty-eight years I had been on nearly ten medications, had way too many hospital visits, more seizures than I could contemplate and so many EEG and MRI’s I lost count before I was a teenager. I had always required ten hours of sleep; learning was a challenge; I had constant headaches, and emotionally I felt like I was on a roller coaster.
"The body I was living in felt like it was killing me... So I was okay if I didn’t wake-up the next day. I was sure my life was complete enough"
As I got older, my biggest worries were my medication costs, driving, whether I could work a normal job and what a burden I felt like to my family and partner. The body I was living in felt like it was killing me. I was so underweight, exhausted, fatigued, and some days felt like it was a choice between the gym and my job. People were tired of being around me; I was tired of hearing myself cry and complain. So I was okay if I didn’t wake-up the next day. I was sure my life was complete enough.
A week after sitting in that dark room feeling hopeless, I received a call from my sister that would change my whole life and start me on my greatest adventure.
“Have you thought about the ketogenic diet”?
The ketogenic diet is a low-carb, high-fat diet that goes back to the 1920’s, when it was created to help children with epilepsy. It was used quite successfully for years, but by the 1940’s, the diet for seizure control fell out of favour as the use of anticonvulsant medicines became the common treatment. Today, it is typically used as a last resort, when medication doesn’t work.
I had known about the ketogenic diet for decades, but I had dismissed it as something used only for children. I began doing a little research and realised that keto was on the rise. It has become quite popular to help people on their journey of healing, be it with a neurological condition, cancer, weight loss, diabetes and (the latest trend) increasing fitness performance, particularly amongst endurance athletes.
I had nothing to lose at this point, so in November of 2015 I began my own ketogenic journey. I went to my neurologist to tell him I wanted to be on the diet, and requested to be taken off one of my anticonvulsants, Zonisamide, staying on Carbatrol and Vimpat only. He sent me away with a schedule to stop Zonisamide, a link to the Charlie Foundation (a specialist website for ketogenic therapies) and told me not to eat more than 50g of carbohydrates a day, but as much protein as I wanted.
"I told my neurologist I wanted to be on the diet... told me not to eat more than 50g of carbohydrates a day, but as much protein as I wanted"
For the first time in a long time I felt hopeful and I was ready to “heal myself”. Little did I know it was going to take a lot more than the information he provided.
I spent the next year figuring it out. Each morning I spent hours researching online. My husband found apps to help me, I ordered books, we looked at websites, and listened to podcasts. The most important piece for me was starting a social media account to look for others who were using the ketogenic diet for epilepsy. It was a support system that helped me along on my journey. With no one-on-one help to get me going, I began the most restrictive Classic Ketogenic approach. I bought a gram weighing scale and some measuring spoons, and began measuring all my food. The information the doctor provided got me started, but one thing I realised quickly was that “as much protein as I want” wasn’t going to work, and that my carbohydrate intake had to be well below 50g a day to control my seizures. It was going to take a lot of tweaking and an openness to making constant changes.
Eventually I came across a woman who was using the ketogenic way of eating to control her seizures in the same way I wanted to. We started talking weekly on the phone and texting often. Her support helped me get through the early days. She helped quell my fears about having high enough ketones (molecules that replace the carbohydrates as fuel) to control seizure activity. She constantly reminded me that I still had a life to live and I didn’t need to worry and focus on my food all the time. When I hit my year mark on the diet 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 and commit fully to this lifestyle change.
"I wake up each morning and practise yoga, go to work... My view of the world, no matter what it throws at me, is manageable now"
Committing to the lifestyle did more than just control my seizures: it set me free. I’ve created a new relationship with food and have become a fantastic cook. Physically I feel amazing. Before the ketogenic diet I had to decide each day between work and enjoying physical activity. I never had the energy and lacked the needed recovery time to do both. Now, with the need for less sleep and better brain function has come more stamina. I wake up each morning and practise yoga, go to work and head to my karate or Zumba class and never feel like I am overdoing it. 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 now.
Today, the ketogenic diet I practise is slightly different to the Classic approach I started with. I eat no more than 60g of protein a day, my fat is around 130- 160g a day and my carbohydrates are no more than 30g. I ended up removing all sugar, gluten, beans, legumes and ate only low carb veggies during my first month. This all took the first year to truly dial in and I learned that each individual is different regarding their portions. As strict as it sounds, after a year I no longer needed to measure everything, and eventually living this lifestyle was like breathing ‒ and so worth it.
Epilepsy doesn’t hold me back anymore and making the decision to use the ketogenic diet to heal myself has become the driving force behind my larger goal of bettering the lives of those around me. I started my own business focusing on whole body care and personal empowerment. I work with companies that encourage a healthy lifestyle, drive a car and I have found a peace within myself. My dream of educating, sharing my story and empowering individuals to not let their diagnoses define them is a reality for me.
I thought the ketogenic diet was the end of my journey of healing. But it gave me the ability to seize a new beginning: a possible future without medication and a journey of helping others find healing and acceptance.
If you are interested in the ketogenic diet, speak to your neurologist about the suitability for you. The article ‘The Ketogenic Diet for Seizures and Endurance’ has more information on the diet and how it works.