Can you cure your epilepsy without medication? Yes, this seems possible for many. At least you can keep the disease in remission long term with a change in lifestyle – without the need for strong drugs or their side effects.
Here’s Michel Lundell’s story:
Here is my story on how I went from living on Red Bull and Snickers to having butter in my coffee, bacon for lunch and how I manage epilepsy with a ketogenic diet instead of medicine.
The story begins when the IT market hit the bottom. In order to make a living I started Sweden’s first kitesurfing center with certified instructors. My days as a certified kitesurfing instructor began when most other people were asleep and ended at sunset. There was a lot of running in yard-deep water, dragging students and kites. Luckily the kitesurfing center was sponsored by Red Bull and Snickers…!
At the beginning of season two that started off in the same spirit – with Red Bull and Snickers – my wife and I took a trip to an island off the west coast of Sweden, where I spent a lot of time as a child. After we had our evening coffee, I guided my wife around the island. Suddenly… a coast guard ship? A sting in my head from a needle, which was held by a doctor… I was in a room at the hospital? How did I get here? Why did the doctor keep asking me about my name and birth date? … Then two years of tests and MRIs followed. At one point I was told that I had a brain tumor, which was quite a blow and I spent six months in agony. On the positive side, this was an eye opener, which really made us think about what’s important in life.
After some more tests and a number of MRIs an expert team concluded that I didn’t have a tumor. However, they did not know what caused the incident. “Nothing is growing in there, so don’t you worry!” This was probably my first epilepsy seizure.
In May 2012, on a sunny Sunday afternoon, I suffered my next seizure. And just twenty minutes earlier we had been driving on the highway – this could have ended in disaster!
When I woke up, and saw where I was, knew where I was, knew my date of birth and which season it was it hit me… it had happened again!
“You have epilepsy and will need to be on medication for the rest of your life”.
That was it. A new assessment with many more tests. Below a picture of me having an electroencephalogram.
Standard procedure is to be put on medication. When drugs that reduce the risk of seizures hit the market, the old way of treating seizures with a ketogenic diet more or less disappeared. It’s simply easier to write a prescription than putting the patient on a ketogenic diet. It was the “a-pill-for-everything era”.
The list of possible side effects was a nightmare to read, and yes, nightmares were one of the more common side effects. The drug did not guarantee that I would remain seizure free. The starting dose was 25 mg, and a year later it was up to 250 mg daily. The only parameter my neurologist used to decide wether to increase or reduce the dose was the concentration of medicine in my blood. In late 2012, it was time for a follow-up visit to adjust the dose once again.
The dose was still low, according to the blood test, and my doctor started to build up his case for raising the dose when I stopped him and proposed to drop the medication and go with a ketogenic diet instead, as I by that time I had begun an LCHF/ketogenic diet, that could have a positive impact. Much to my surprise, my doctor accepted the idea and wanted a week to check with colleagues. A week went by and the doctor called me back and said: “Let’s go, but before starting we’ll do a bunch of tests to see if you’re OK to start tapering off and how you’re managing ketosis”.
To find out if I was in ketosis and how deep, I used a lot of urine strips. I also got a blood ketone meter. The urine strips only indicated wether I had excess ketone bodies (acetoacetate) a few hours ago. The blood ketone device displayed another ketone body (beta-hydroxybutyrate). Not the same, and not very correlated, even when I was eating a very low-carb diet (<20 g carbs). The urine strips were messy and not so straight forward to interpret. The blood measurements where expensive and messy as well. There had to be a better way to know!
I had read a lot of studies on epilepsy and somewhere at the back of my head I remembered “breath” and “indicate ketosis”. Being an engineer with no constraints regarding what’s doable or not, I set out to make my own device that I could easily use over and over again. The instrument that evolved worked very well and the idea of making it available to others needing an easy way to measure ketones was born. I called it Ketonix. I use it as a compass to navigate me towards a good ketone production.
Being able to measure my ketone production and seeing how much and how fast my body reacts to diet composition, activity and fasting eating, fasting is very interesting. I sometimes measure using the blood ketone meter, but 99% of the time I use my own ketone-measuring device, Ketonix.
I got in touch with Matthews Friends, which is an organization for families with kids suffering from epilepsy and treatment with the ketogenic diet. They are currently using my Ketonix in a study. This fall I’ll present it at a conference about kids, epilepsy and the ketogenic diet. I can only imagine how it is being a parent to a child with epilepsy, and helping families would be fantastic.
I’ve now gone four months without medication and no seizures. My diet is a 80/15/5 (fat/protein/carbs) ratio diet, and it works very well for me. My ketones are showing “green” in the mornings and “yellow” in the afternoon, using the Ketonix. When it shows “blue” it’s time to fast, exercise or have more fat! Now it is really easy to adjust the ketone level by just a simple exhale into the device. No disposable strips, no extra cost!
The ketogenic diet hasn’t had any negative effects on blood pressure or markers. My lipid profile is excellent, as even Jimmy Moore, the author of the book “Cholesterol Clarity” has commented.
The most noticeable change from the ketogenic adaptation has been physical. My muscles run on fat, so I can keep exercising without getting muscle fatigue. It’s really inspiring to be able to keep running for hours without getting tired. I fully understand the trend that more and more endurance athletes, like marathon or ultra runners, are going with a ketogenic diet.
I have my first marathon and triathlon planned for this summer! I wonder if I had ever gotten these ideas if I hadn’t been struck by epilepsy and changed my diet!
Congratulations on finding a way to go off the antiepileptic drugs! And good luck with your triathlon and further marketing of the ketone meter Ketonix. It’s already helping many people.
Regarding epilepsy and low-carbohydrate diets: A ketogenic diet is a well-known and is a treatment that works well against severe epilepsy in children. More and more people realize that this diet may work just as well in less severe cases of epilepsy, in adults as well.
Sure, it’s easier to take a few tablets each day in order to avoid epileptic seizures, but drugs against epilepsy have side effects, such as reduced mental clarity. If you want to function optimally a diet change may be a better choice.
At least people with epilepsy should have the knowledge of this possibility – so that they can make a choice for themselves.
LCHF for Beginners – a ketogenic diet
Do you have a success story you want to share on this blog? Send it (photos appreciated) to firstname.lastname@example.org, and please let me know if it’s OK to publish your photo and name or if you’d rather remain anonymous.