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How a Diet Change Can Free People from Epilepsy

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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:

 The Email

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.

Screen Shot 2014-05-02 at 14.52.03Standard 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!

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Michel Lundell

Comments

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.

More

LCHF for Beginners – a ketogenic diet

All about Ketone Measuring

Read more about the Ketonix meter at Ketonix.com

Happy Ketones

More on epilepsy

PS

Do you have a success story you want to share on this blog? Send it (photos appreciated) to andreas@dietdoctor.com, and please let me know if it’s OK to publish your photo and name or if you’d rather remain anonymous.

Low Carb Made Easy How to Lose Weight Low-Carb Recipes Low-Carb Success Stories

9 Comments

  1. François
    Great story! I learned about the ketonix in a previous entry on this blog and acquired one myself. Quite happy to know how I am doing "in real time". This being said, though I feel a ketogenic diet should be the first step in treating epilepsy in anyone (once tumors have been ruled out), this should be done strictly under the supervision of a neurologist. The risks and consequences of doing this diet "on your own" are much too great.

    Fortunately, there is a wealth of neurological literature on the positive effects of a ketogenic diet for the treatment of epilepsy and it should be quite easy to find a neurologist open to the idea. The only negative article I read about the use of a ketogenic diet was a description of how a ketogenic diet caused "stiffening" of the carotids. A more detailed look into the article showed that their choice of fat was essentially omega-6 oils, the ideal choice to promote inflammation.

    And a word of caution: while neurologists understand perfectly the principles of a ketogenic diet, they have no clue on how to prepare a meal. The ketogenic diets used in hospitals do work, but they are horrible as far as taste is concerned. Fortunately, there are now tons of excellent websites with ketogenic recipes. I myself love "authoritynutrition.com". Tons of great advice and remarkable recipes and hyperlinks to more recipes. Kris, the author, even participates to this blog on occasion. A great complement to this blog.

    Reply: #7
  2. tony
    This article is right on the money.

    Five years ago, a co-worker told me he was concerned that his wife's epilepsy medicine was creating numerous physical side effects that necessitated other drugs, which in turn created additional side effects.

    I suggested he put his wife on a ketogenic diet based on numerous articles I had read showing the benefits on epileptics.

    His wife responded that there was no way she was giving up bread, rice and beans.

    Last month, she died of a heart attack brought on by her medicines' side effects, at the age of 40.

    I hope all epileptics pay attention to this article and adopt a ketogenic diet.

  3. Frances
    Michel, welcome to the "other side"... those of us who have survived... recovered, AND thrive! Thanks to your background as an engineer and your passion for progress, plus a few twists of fate that tested your mettle, we have further progress! I love every 180 degree turnaround success story! Yours is a beauty! Thank you for sharing with us today. Blessings to you.
  4. Risalu
    I can just confirm that it works; my son is eating a strict LCHF. Even though he´s not completely seizure free, he´s got severe cerebral palsy and according to the doctors treatment resistant epilepsy we managed within a year to take away 3 out of 4 medicines. His neurologist want admit that the diet has anything to do with his epilepsy and think that we should stop and let our son eat like everyone else and stick to meds.

    My son has gone from around 100 seizures a day (grand mal, petit mal and partial seizures, seizures where he just stops breathing) to only a few petit mals a day.
    His own words to describe how it feels is that he can think again, his head doesn´t hurt and his can sleep without the monsters coming.

    The change was instant, within a day from starting him on the diet we got results and since he started it feels like we have a new kid with so much energy and he can be included in everything we do. Something that has been impossible for many years since light, sound, heat, cold, and just about anything out in the world could trigger his seizures.
    How do we know it works? The few times his food has been “contaminated” with too much carbs we immediately see more seizures and he says his head feels strange again.

  5. Jan
    A colleague of a friend (both paediatricians) has a son who is on a ketogenic diet to control epiliepsy. This is a difficult diet to adhere to because even the sugar coating on medication pills has caused problems. However, the diet has been effective at reducing seizures.
  6. Galina L.
    I also use a ketogenic diet for migraines prevention since 207 instead of a small dose of anty-seizure medication prescribed for me by a doctor. Besides having nasty side-effects, the medicine worked well only at the beginning, in several month I felt like a zomby, while side effects from ketogenic diet were weight loss, never being hungry,constant energy level, stable mood, luck of hot flashes, unbelievable resistance to viruses and infections and going off asthma and eczema medications. However, most nurses would tell you that ketosis is dangerous. I didn't loose all the weight I wanted, but enough to look well.
  7. sten
    Wonderful story and follow on experiences. I also recall reading similar to what you wrote above:

    "The only negative article I read about the use of a ketogenic diet was a description of how a ketogenic diet caused "stiffening" of the carotids" I am glad you then found:. "A more detailed look into the article showed that their choice of fat was essentially omega-6 oils, the ideal choice to promote inflammation."
    I used only natural fats like butter, animal fats, coconut oil and real olive oil and that cleared my angina caused by a constriction in heart arteries. Would be great if the investigators could try same with natural fats instead !

    Anyone knowing about using the diet to someone that suffered brain damage at birth or through later accident, who since has developed but very slowly on standard diet.
    Thankful for all replies !

  8. Mark Bousquet
    I got his Ketonix and love it - gave up the urine strips. I'll occasionally test my blood ketones along with the Ketonix and the values appear to be correlated, the couple times I've checked. What would be great if there was software that went along with it so we could get a value and not just a color indicating high, medium, low, etc.
  9. 3 comments removed
  10. Susan Wesley
    I have had epilepsy for 55 yrs,ever since I was 7yrs old! Drs have put me on so many meds! They said I have the easiest kind but the hardest to control! 55yrs ago they called it "psychmotor epilepsy" now it's petite mal. I was never told about a diet cause all they want is the money from drugs! I've been trying the "ketogenic diet",but I don't have it perfected! My son,who is 37,likes it when I prepare meals,he doesnt like bread,pasta,white potatoes or rice either! How do I get the Ketonix as I would like to know whether that I am in a state of ketosis or not,I am diabetic & I don't know if blood sugar readings can indicate a state of ketosis or not! I would love to have this device!

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