How can we help you?
 
 
Ketogenic diet

My (long) way to the ketogenic diet

In this report, Susanne tells us how she found the ketogenic diet in adulthood.

 

29.06.2023
4 min

Susanne' profile

Name: Susanne

Country: Germany

Diagnosis: Epilepsy

Ketogenic diet since: 2016

Favourite food: Keto ice cream

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."

Susannes Tipp

How I Feel After Switching to the Ketogenic Diet and How I Became a Keto Ambassador

Unlike children who continue to receive support from the respective metabolic centers after starting the ketogenic diet, adults are left to fend for themselves after their training. Although the family doctor and neurologist are available for questions, they are not always a significant help, as they often have little or no knowledge of the ketogenic diet.

For this reason, despite my illness and advanced age, I decided to go back to school. Today, I am a nutrition consultant. It's a decision I don't regret to this day, even though... Thanks to my acquired expertise, everything went smoothly, I no longer had difficulties implementing the ketogenic diet, and both my physical and mental health improved.

I maintained a friendly relationship with the nutrition specialist from Vogtareuth throughout. Eventually, she approached me and asked if I would like to become a Kanso Keto Ambassador. Given my own history with the many negative experiences and mistakes I had made, I looked forward to helping other people. Especially at the beginning of my keto journey, I would have given anything for a resource like Kanso's website. That's why I'm still involved to this day.

Today, I am once again a positive and cheerful person, thanks to the diet. My gratitude also extends to Kanso. When I started the ketogenic diet, there weren't many helpful products available. Today, it's a different story, and with the selection of items Kanso offers, managing my diet has become significantly easier. Of course, I have limitations, and I must maintain a certain level of discipline, but I do it willingly for the quality of life I have regained.

I hope I could inspire you and spark your interest in the keto adventure.

Until next time,

Yours, Susanne

More Community posts on this topic
Ketogenic diet

Interview with an alien

In this article, you will learn how the rare genetic disease GLUT1 works from the unique perspective of an alien researcher. Through an insightful interview with Greta Caravita, one of the few people on Earth affected by GLUT1, it is explained how this disease affects daily life and what adaptations are necessary. The viewpoint of an alien offers a special and fascinating opportunity to understand what living with this condition conveys.

10.07.2024
10 Min
Ketogenic diet

Starting the Keto Diet: One Step at a Time

When you receive a diagnosis of a rare disease for which there is no medicine to make it disappear, you feel like you're locked in a dark room. But when you're told that there's a therapy that can mitigate the effects of the disease, that's when the light returns...

31.05.2023
3 min
Ketogenic diet

Nothing is impossible

 

There are so many things we would like to share about the ketogenic diet. Monica has been on this diet since 2015, and much has changed - both in terms of meal preparation with new products on the market and in managing everyday life or special occasions. Monica has always been a cheerful and positive person.

16.07.2020
3 min