Lee’s Story


I’m Lee and I’m 38 and had epilepsy since 16. So like everyone else I’ve been on many different types of medications throughout the years. All with side effects, some worse than others. My seizure types are tonic clonic and myoclonic seizures. My specialists are Lyn Greenhill (Epilepsy Nurse) and Dr Bagary in Birmingham.

I think Lyn is great, basically always giving me options and then she’d implement the plan based on that decision whether it’s a new drug or something else.

A couple of years ago we discussed a medicine option of adding Mysaline to my drugs, basically because it’s one that my dad uses as he has epilepsy too and he’s been seizure free since I was a kid.

I started on half a tablet or the smallest dose to ease it in. I never even progressed beyond the half as I was like a zombie from the start.

I usually work in an office and at the time part of my job was taking calls as well as general office work. I couldn’t communicate with people, my brain could not process fast enough to cope with a conversation so I’d not use the phones during that time. This also affected my social life too. It was horrible.

Next I found out that my company was going to be taken over and I’d have to reapply for my job or even look for another. I was not be able to do interviews in that state! I was stressed and contacted Lyn who said to write an email to explain. It took me 4 or 5 hours to write, I couldn’t concentrate. I wanted to make sure I was making sense and not repeating myself. Anyway because of my side effects, they thought it seemed serious so Dr Bagary saw me 2 days later and they started to take me off Mysaline gradually. That was horrible too.

Then we discussed non medicine options like VNS and the Modified Atkins Diet. I did my research and the diet was my choice, basically because it was less intrusive and didn’t involve surgery. Neither promised 100% results and I preferred the one without scars!

So I eventually met Jude and the team at the Barberry, they introduced the diet slowly, morning one week, then introduced lunch the next week and evening meal the following week.

I found this helped as it’s a lot to take in learning a new way to cook with different ingredients. At first my diet was limited. I’d have cauliflower rice with everything and I then did some research and found all sorts of recipes on the Matthew’s Friends website, online and YouTube etc.

I eventually learnt to make my own recipes by using techniques from one recipe to make another. For example I had a recipe for chicken Kiev with keto breadcrumbs made from the puffy pork scratchings and almond flour… I decided I fancied fried chicken one day so used the same mixture but added herbs and spices too. I love creating new recipes it’s fun.

As well as the diet I started fitness and I joined the gym and even did a few classes. I found a new passion of mine in yoga which I now do 5 classes a week. I also run and cycle too.

At first I found my early version of the diet wasn’t suitable as I’d have jerks while working out so I did some more research…. I found there wasn’t much out there on this topic.. most is general keto diet stuff which is fine…. Then there’s the fitness topic… everything was talking about carb loading! Then I decided to change up my eating on gym days. I’d make sure I ate an hour or so before or if I couldn’t, I would make fat bombs which I’d have about an hour before to get me ready. This helped a lot! I found what worked for me.

My seizures have reduced considerably. Haven’t had a tonic clonic in.. well I can’t remember.. and the jerks are few and far between.

Last year I signed up for Tough Mudder and as I’d never done anything like this before, I thought I’d do a wolf run as a warm up and test run. This one was only 10k (6 milesish). I wanted to see if the diet would get me through it and if I was up to it in myself. The wolf run was so much fun. I absolutely smashed it! I felt like I still had a full tank left so could still do more.

Lee’s Story…

We first featured Lee back in Summer 2017 – but you really need to have an update…What an inspiration he is.

I’m Lee, I’m 40 and I’ve had epilepsy since I was 16 and my seizure types are tonic clonic and myoclonic jerks. However, I haven’t had a tonic clonic seizure for a long time now. I have been on many different types of medications, experiencing many of the side effects that come with them too. I have also been using the modified ketogenic diet since 2016. Now experiencing less side effects and my life is better with less limitations.

You may remember my previous story from the summer 2017 magazine, where I spoke about how I was before the diet and the benefits it has brought to me… If you haven’t seen it or don’t remember, it’s still online and worth a read.

Well… I’m here again, and as if my life couldn’t get better!

So, since the last magazine entry I’ve obviously learnt a lot about nutrition to make this amazing diet easier to manage as a lifestyle. Along the way, I’ve crossed paths with information about how versions of the ketogenic diet can help other conditions. I was fascinated and intrigued to learn more…

My interests and self education has explored things such as the microbiome, amongst other things. What was once just a diet for my epilepsy has now become a major interest… I had to take it further.

Summer 2017, I set myself a goal to go to university to study dietetics. However, it’s not been easy, I’m not gonna lie! At this time in my life, stepping out of my comfort zone, managing finances alone, and going back into education after a long time etc… were all major obstacles. But obstacles I overcame. I wanted this!!

So, I smashed my access to higher education course at college and got a place at Plymouth University, which I started in September 2018. I have entered a new world entirely… new challenges… new obstacles… new adventures… But I love it and I’m on the right path! I’m happier than ever.

I’ve joined a couple of societies here at university. One is the athletics society, where I mainly go running, circuit training and take part in random sporting events such as Dodgeball, and I believe next term we’re getting involved in random hockey and volleyball tournaments. The other is the Adventure and Expo Society, where we do climbing, caving, slack lining, and loads of other outdoor fun stuff.

Who’d have thought that from where I was before this diet, struggling to concentrate and communicate due to previous medications, I’d get to where I am today with all these amazing opportunities, with many more to come! I feel amazing!

I keep thinking I’m going to wake up and find it was just a dream… But fortunately, I’m more than happy to say it’s all real. This new journey is bringing me so much more knowledge and opportunities. I am thankful for everyone involved on this journey and look forward to meeting others as it continues. I look forward to the rest of my education and to be able to give back and help others too.

I’m sure this isn’t the end of my story.