Just before my senior year in high school, I was diagnosed with epilepsy. Over the past 16 years we have tried every seizure medication that is appropriate for me to try. I have had a few EEG’s and two surgery consults at Harborview. We learned from those that I am not a surgical candidate. This was very disappointing. We then tried a Vagus Nerve Stimulator (VNS) which is helping some, but I am still uncontrolled. I have 10-16 seizures a day. Sometimes for no apparent reason my daily seizures increase to 20-30 a day. This happens once or twice a year for 6-10 weeks.
Daily seizures changed my life. I had to give up many things. My college plans changed and I had to give up driving. I had always wanted to go to school and live on campus. Instead I lived at home and went to the community college. I learned to live with the cards I’d been dealt, but it wasn’t easy. It became hard to make plans because I might have a bad day and have to cancel. Eventually people moved on. I’ve always had supportive friends and family. I hoped and prayed that we would find something to help me be seizure free or, if anything, have less frequent seizures.
Two years ago, I had a big flare up and ended up in the hospital in a medically induced coma to try to calm my brain. After that I spent about 6 months as an outpatient at St. Luke’s Rehabilitation working with therapists to recover from the coma. My brain did calm down but I still continued to have daily seizures (my doctor did not anticipate the seizures going away altogether and we knew this going in). We had tried everything to calm my brain, but after several weeks a medically induced coma, unfortunately, was our best option. I did better for the next year or so.
In April 2019 I had another flare up. We adjusted my meds a bit, but it was still a huge struggle. For the past year or more I have not slept through the night without being awakened by seizures. I had a fatigue work up and discovered that I have mild sleep apnea. I now wear a CPAP when I sleep. Now that I am sleeping more deeply, when I would wake from seizures I would be more confused and frantic. Every day was a new day. I could never figure out why I was hurting or what was happening. We decided this is because I was further into my seizure and too confused to realize what was going on. I have focal impaired awareness seizures. I do not lose consciousness and only my left side is affected.
After much communication with my neurologist and PA, they suggested two other options. One was to try another medication or the ketogenic diet. I chose to start with the diet, as I was not thrilled about the potential side effects of the medication option.
Neurology sent me to a nutritionist to begin the process of starting the diet. It took some time to get in with someone, but it has been worth it. I began by meeting with the nutritionist and she gave me some good information and resources about the ketogenic diet and epilepsy. She also went over some good nutritional scales, side effects of the diet and other information. We decided I should try the Modified Atkins Diet (MAD). This is much like the Ketogenic Diet, however, it includes less fat, no limit on protein and 15-20 carbs a day as opposed to 10-15 carbs a day. The MAD is more tolerated in adults.
Before beginning the diet, I took a week or so to gather what I needed. I started some meal plans and looked up foods and recipes I could eat on the diet. I’ve always been a picky eater, but I was determined to give this diet a try. I read the book, Ketogenic and Modified Atkins Diets: Treatments for Epilepsy and Other Disorders. I did a lot of Googling and found some good information on epilepsy.com as well as a webinar on the diets.
At the beginning of July, I began the MAD. The first day was hard because overnight I changed my eating habits. I started with simple eggs, sausage and tea with heavy whipping cream (extra fat) for breakfast. We went shopping several times and read labels to find the low carb foods. It’s amazing how many carbs we eat a day. I continued to look up recipes on Pinterest.
During the first week, I didn’t feel very well. I had been warned that I may feel bad. I got to the point where I really wasn’t hungry or the smallest bit of food was satisfying. I drank lots of water and within 24 hours of the diet I began losing weight. By day 2 I was officially in ketosis. We slowly started seeing more positive effects when it came to my seizures. I began sleeping through the night and in the first week we noticed that I was having about half as many seizures a day as I was having before beginning the diet. By week two I was having some days in which I didn’t have a seizure at all. At times I noticed my VNS was firing more frequently, but there was no sign of an actual seizure. My VNS must be helping more than we realized.
One morning I woke up feeling terrible like I’d had a lot of seizures. I was sweaty and felt sick. I looked back in my notes and realized I had not eaten very balanced the day before. When I tested my ketones the strip was lighter. I was still in ketosis, but not as much as I had been previous to this bad morning. I reached out to the nutritionist and she advised me to lower my carb intake to about 10-15g, lower my protein to 50g, and eat only 800 calories for the next three days. That should get me back into a higher level of ketosis faster. Sure enough, it worked and I stopped having trouble. I was back to my new baseline.
I was thankful that I did have a bad day, because I learned about what to adjust and what my body needed to stay in the “right” level of ketosis. After the first week I started testing my ketones once a day and now by month 2 I am testing twice a week.
This has been incredible! I can’t believe that after all these years we finally found a therapy that is working for me. Our prayers have been answered. I am so thankful that the epilepsy doctors are revisiting dietary therapies as a treatment.
It has officially been a month and I have gone 14 days without a seizure. I know that is not very many but the MAD is working. I am excited and nervous about what this new normal might mean for my life. I feel as though I have been given a second chance to make a better life for myself. The possibilities seem endless. I am not focused on just trying to survive a day and hope I wouldn’t have too many seizures. I’ve noticed that my thought processing is better and, overall I feel better. I don’t feel like I’m trying to shake the cobwebs from my head all the time. Losing weight has been an extra bonus.
I have decided to blog my personal journey and will be posting about how things are going about once a month. My hope is that these blog posts will be encouraging to those with epilepsy and their loved ones. Please do not begin this diet on your own as a therapy, but rather talk to your doctor and get the help of a nutritionist.
Ketogenic and Modified Atkins Diets: Treatments for Epilepsy and Other Disorders (6th Edition) by Eric H. Kossoff, MD et al