My (long) way to the ketogenic diet
In this report, Susanne tells us how she found the ketogenic diet in adulthood.
How it all began
I was diagnosed with epilepsy at the relatively advanced age of 48. Initially, I was admitted to the hospital with a suspected stroke because I kept experiencing moments where I became unresponsive and drifted away. Afterward, I felt confused and completely exhausted. During this hospital stay, I had my first grand mal seizure, which quickly clarified the diagnosis. I was prescribed medication and discharged the next day.
The time that followed was far from pleasant
I suffered from side effects. I slept for twenty hours a day, and the remaining four hours were spent in tears. Nausea prevented me from eating, resulting in significant weight loss. The medication didn't help either. After six weeks, I was switched to the next drug, again without success and with plenty of side effects. This trial and error process continued for about two years, with one medication following another. My seizures turned into series, and their frequency rapidly increased, leading to a point where I was put on two medications simultaneously, but without success.
During my darkest times, I was taking four different medications at once. Unfortunately, this provided no relief and was accompanied by so many side effects that a normal life seemed impossible. Besides physical pain, I had no motivation left. I completely missed my daughter's graduation and my son's school achievements. These are memories that I completely lack. I kept losing weight, and at one point, my weight dropped to 47 kg at a height of 1.75 m.
How I became aware of the ketogenic diet
I eventually broke my shoulder during one of my seizures. For post-treatment, I visited an orthopedist who also had a good understanding of nutrition. He recommended that I learn about a carbohydrate-free diet.
I took his advice and read everything I could find on the topic. When I searched for "epilepsy" and "carbohydrates" on Google, the ketogenic diet was immediately suggested to me. The reports looked promising, so I discussed it with my treating physician. Unfortunately, he wasn't enthusiastic about it, so I decided to try it on my own. I researched how to calculate my macros, obtained urine test strips, and then I started. Finally, from the very first day, I remained seizure-free for four months.
Unfortunately, over time, other problems arose. I experienced frequent blood sugar crashes, sweating, and astronomically high blood lipids. I knew that the path was the right one, but it seemed I was doing something wrong in implementation. So, I needed help, which, as an adult in Germany, unfortunately proved not to be so straightforward.
In the first clinic, I was admitted for the ketogenic diet adjustment as an inpatient. Unfortunately, the staff there had no idea, so I was discharged after two days.
I learned from this experience and went to the second clinic for a discussion first. Since everything sounded good, I was admitted for the ketogenic diet adjustment several weeks later. However, this stay turned out to be even less pleasant than the first clinic. Originally, I was supposed to be discharged after three days once I was adjusted. However, on the second day, I was no longer in ketosis, and the seizures returned, this time with a severity I had not experienced before. After three weeks, I was allowed to discharge myself at my own responsibility. Back home, I resumed my previous routine and soon regained stability in ketosis, but unfortunately, the same problems as before returned. After I had recovered, I made a third attempt. This time, I traveled all the way to Vogtareuth in deepest Bavaria, 800 km away, which proved to be truly worthwhile. I was warmly welcomed there, and the training I went through helped me immensely. I learned about many dietary aids, including products from Kanso, and gained a wealth of knowledge about the ketogenic diet and fat selection. We cooked together, and when I was discharged, I received all the necessary documents to have the ketogenic therapy approved by my health insurance. Additionally, during the inpatient stay, one of my medications was discontinued, and I received a plan for further reduction.
"Hold on, even if the path is a bit bumpy at the beginning, it's worth it."
Cooking tips with MCT fats
The most important information summarized briefly:
- Half a teaspoon of MCT oil is approximately 1 g/ml.
- One teaspoon of MCT oil is approximately 3 g/ml.
- One tablespoon of MCT oil is approximately 6 g/ml.
- MCT margarine is ideal for spreading on bread as well as for sautéing and baking.
- MCT oil can be used for salad preparation and for gentle frying at low temperatures (approximately 150°C).
- Do not keep MCT fats warm for too long, heat them too hot, or reheat them (in the microwave) as this could result in a bitter taste.