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Living with Epilepsy, How the Ketogenic Diet Changed my Life

 By Lee Morgan, Student Dietitian, University of Plymouth
 

Introduction
I’m Lee. I’m 42 and I’ve been on the ketogenic diet for epilepsy for the last five years. I was diagnosed with epilepsy at the age of 16 just before my GCSEs and at a time when I was planning on joining the RAF. A diagnosis of epilepsy changed everything and I had to take another path. It has certainly been a bumpy road, with many obstacles along the way but this journey has made me the person I am today.

I hope that sharing my experience of a ketogenic diet helps raise awareness of this treatment option and the potential benefits for both adults and children living with epilepsy.

A Turning Point in my Epilepsy Journey
Like many people, I have been on more medications than I can remember to manage my epilepsy. I have also experienced many of the common side effects. Nearly six years ago *Mysoline was added to my plan. I was only on half a tablet but the side effects kicked in right away. I was like a medication zombie! I was unable to communicate, my cognition had deteriorated and I found it hard to concentrate and retain information. 

I wrote an email explaining the situation to my Epileptologist with the hope that I could come off the drug and find an alternative treatment with fewer side effects. I explained how the side effects of the Mysoline were severely affecting my work and social life and that my focus was not just about seizure control. Quality of life was just as important. The email took me about five hours to write, as I struggled to concentrate. It must have had an impact because I was offered an appointment the following day.

At my appointment we discussed alternative options, such as Vagus Nerve Stimulation (VNS) and the ketogenic diet. I decided to go with the ketogenic diet. My reasoning included not wanting scars from VNS particularly as there was no guarantee it would be effective in controlling my seizures. However, I was also sceptical of the ketogenic diet and concerned about consuming high levels of fat and the risk of high cholesterol. I was assured that I would be closely monitored and able to return to normal eating should there be any issues.

Introducing the Ketogenic Diet
The ketogenic diet was phased in slowly over three weeks. In week one I began with ketogenic breakfasts with my usual diet for all other snacks and meals. Then week two a ketogenic lunch was added until finally in week three all my meals and snacks were ketogenic. I found this approach helpful. There was a lot of information to take in and I had to learn new ways to cook with different ingredients.

In the beginning my meals were basic and I would have cauliflower rice with most meals. Then I found recipes on YouTube and the Matthew’s Friends website. I eventually became confident to create my own recipes by adapting ideas and techniques from other recipes. I found I enjoyed creating the new recipes. It was fun and definitely helped to make the diet more of a lifestyle.

It didn’t take long to see improvements, with my seizures controlled and importantly an improvement in my quality of life. My cognition improved so much that I felt like a new person. My confidence grew and those around me noticed a difference. Occasionally I had myoclonic jerk seizures during exercise, so I added a fat bomb snack about an hour before my workout to keep me going. This helped and I had no further jerk seizures during my workouts.

The Life-Changing Impact of the Ketogenic Diet
Life continued to improve on the ketogenic diet, as did my knowledge and passion for diet and health. Since starting the ketogenic diet, I have read a lot to improve my understanding of the diet and make it easier to manage. What was once just a diet to help manage my epilepsy has now become a real interest. So, in 2017, I set a goal of going to university to study dietetics.

Video from https://epilepsyoptions.co.uk

I am now nearing the end of my final year training to be a registered dietitian at the University of Plymouth. I have learned a lot, made some incredible friends and had some awesome opportunities. I have had the privilege of making a video about my ketogenic journey, joined Matthews Friends Medical Keto Diet Forum and attended Keto College in 2019 where I had the honour of being a guest speaker. Seeing how others like myself have benefited from the diet has only increased my passion and desire to become a specialist dietitian in ketogenic diets.

Ketogenic Diets for Adults with Epilepsy
The NICE Guideline for Epilepsies: Diagnosis and Management (CG137) was last reviewed in February 2020 where the ketogenic diet is described in the context of children and young people and referral to a tertiary paediatric epilepsy specialist.

My experience has shown that ketogenic diets can work for some adults with epilepsy and can be sustainable. New products and foods for special medical purpose (FSMP) from Nutricia and Vitaflo are designed to support a ketogenic diet have made the diet easier and helped make meals less restrictive, more balanced and palatable. There has also been development of specialist enteral tube feeds meaning that ketogenic diets are now possible for those with drug-resistant epilepsy who require tube feeding (you can find these in the Medical Nutrition Today Product Finder). However, such FSMP products and specialist enteral tube feeds should only be used under the supervision of a specialist dietitian.

As a person with epilepsy I believe it is important to note that seizure control is not the be-all and end-all. Quality of life is also an important factor. It is a balance between the two. As such I would like to see ketogenic diets being offered as a treatment for uncontrolled or drug-resistant epilepsy for both adults and children. To do this we need to continue building the evidence-base for this treatment in adults and ensure there are enough specialist dietitians in this field to support the treatment. My own experience has also shown that peer-to-peer support can be extremely beneficial for patients and parents or carers of children following the diet.

I’ve had five successful years on the ketogenic diet and my story is just beginning. I’m looking forward to the future and hope to help others who are also living with epilepsy.

 

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For more information and resources about the Ketogenic Diet and the management of epilepsy, visit:

The Epilepsy Society

Matthews Friends

The Daisy Garland

Epilepsy Action

My Ketogenic Diet

Epilepsy Options

and for more information about Purple Day visit  www.purpleday.org

 

*Mysoline is the brand name for Primidone.  The British National Formulary states that indications are for all types of epilepsy except typical absence seizures.