2 years on: The good, The bad, The ugly about my keto for epilepsy journey so far

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My last post was in August 2018 and it is now April 2019. It’s been approximately two years since I switched to a ketogenic lifestyle to manage epilepsy.

I refer back to my last post on 3 top tips: surviving keto life as an adult with epilepsy  as I write this – all those tips remain very true to survival. The gap between my last post and this one has only gotten longer because the truth is, it has gotten harder in many ways, and easier in some .

The lifestyle is STILL a rollercoaster and I’m constantly adapting

I have not mastered the art of staying in ketosis like many claim and it doesn’t come easily to me, mainly because of social and environmental factors like coping with work stress and travel. I find it difficult to constantly stay ‘on the ball’ and prepared EVEN though I enjoy cooking and mealprepping, and the reality is that the ball falls on occasion. But that is life.

The good

I’m still seizure free, however not without auras. This was because I threw myself out of ketosis on a number of occasions (due to workload, stress, travel and/or celebrations). The reason this is still ‘good’ is because of the self-awareness each aura brings. I feel like each time I recognise it better, am able to get to a safe space quicker, and in the last year feel better able to manage them.

Reviewing my intention and to be kind to myself. When I first started the ketogenic lifestyle two years ago, my intention was to get off medication. Whilst this still might be possible in the long-term, for someone my age, unless I intend on making that my sole purpose in life, might not be achievable in the short-term.

I had a follow-up with my neurologist a few months ago, and what was clear was that if I was to be kinder to myself and live a decent quality of life – work, have a life etc. I would need to continue medications and the diet is adjunct therapy to better manage my triggers – make sure I’m ‘able’ to get a decent level of sleep, manage my stress, work and so on.

The bad

The HARDEST part for me is #FOMO . As someone in their early (nearly mid) 30’s I constantly question whether it’s worth it, life’s too short, and I guess the last eight months I’ve been testing my limits (A LOT).

I’ve put myself in situations which two+ years ago would have guaranteed a seizure. Late nights, caffeine fuelled stressful periods, eating junk etc etc. The outcomes have not always been great, and although I haven’t had a seizure this is due to my medications. Examples of instances when I slipped out of ketosis and the consequences:

In November 2018 I slipped out of ketosis heavily, it was a stressful month of cramming for an exam with late nights in the library. I ate ‘healthy’ but non-keto, drank coffee, didn’t get enough sleep etc. A long story short, I had a migraine that lasted days, including the day of my exam. I had nausea and vomiting that was uncontrollable and had to be given injections to stop it.

In January 2019 I was on holiday in India where even though I’d mealprepped breakfast and snacks, I’d also carried MCT oil and electrolytes and so on. I was inevitably going to have to eat out for meals. Needless to say there was one day where I could NOT resists street food in Kolkata (it was paapri chaat and phuchka), and that night I had a migraine, vomiting AND diarrhoea.

As recently as last week in the run up to Easter festivities where there was a lot of chocolate going around the office, when I drank caffeine, and stress levels were running high, I crashed at the end of the week with an aura and had to work from home.

Every single time I threw myself out of ketosis it was with good reason and I don’t regret it one bit. Life is too short and building on my last point in 3 top tips and #FOMO – it’s always a judgement call and my 4th top tip would be to listen to that “inner self” and do what feels right for you at that moment within reason.

The ugly

Living in a non-keto world isn’t easy. I guess the ‘ugly’ sin that I’ve been committing is eating bad fats. Work has been crazy and I’ve been resorting to burgers without the buns (even from McDonalds) in pangs of hunger. And in no lifestyle can this be right.

In summary

Unless you like eating in and meal-prepping, it’s not an easy, affordable, quick AND sociable lifestyle . For anyone that says it is (in London), I’d like to meet you please because I’m struggling two years in.

It IS however lifesaving and as mentioned above, although I haven’t had a seizure, whenever I’ve slipped out of ketosis, the repercussions of it were like little warning signs to STAY IN KETOSIS! For that reason, I’m still trying.

Why I decided to go Keto

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The reasons for me going on the ketogenic diet boiled down to two reasons:

  1. The scientific evidence correlating between the ketogenic diet and epilepsy management: I’ll do a separate post on this.
  2. My dad: He’s very persuasive in his own way.

My epilepsy history in a nutshell

I have had epilepsy since my early-mid teens, that’s more than half my life! My sister had it too but she grew out of it. I was diagnosed with ‘Juvenile Myclonic Epilepsy’ but it’s now classified as ‘Generalised Epilepsy’ as I didn’t grow out of it and my seizures changed from myclonic jerks to Grand Mals.

My triggers are classic: lack of sleep, stress, early mornings, too much caffeine and alcohol. (It’s probably a good thing I’m not a banker, I wouldn’t be able to hack the trading floor :-/ *respect*)!

I used to be on a medication called Epilim (Sodium Valproate) for most of my life, until in 2014 at the age of 29, I had a seizure in Delhi airport whilst travelling on an early morning flight. It was a turning point in my life in that if that seizure hadn’t occurred I would probably still be on Epilim, oblivious to its’ effects on my body.

Because my parents are doctors, and my GP is a family friend, I trusted them and whatever medications I was on. I guess they trusted the knowledge of their friends as well. I hadn’t had regular follow-ups and in hindsight, even when I was seen to, I never really felt comfortable being seen to by friends of the family – they were more interested in conversations with my parents than with me the patient. So they were very quick conversations, and to be honest, I don’t remember much.

In Delhi the doctors were shocked I was on Epilim as a woman of child-bearing age. So they put me on Keppra. Mum flew down and I was taken back to London where I recovered and saw a neurologist. Keppra didn’t suit me at all, it was two weeks of hell (moody, angry, hair falling out, lethargic – there’s a reason they call it the crazy pill!). So I was titrated on to Lamictal over a 5 month period and I returned to India for work. Lamictal worked for about a year and a half, and then it slowly lost its effectiveness.

The big change

I returned to London in November 2015 with the intention of spending time with family and getting healthy. After two years of using Lamictal and experiencing a few seizures, a new neurologist I had started seeing suggested titrating on to Zonegran.

So I started the process in November 2016. However it was in early January 2017 that we had to make an appointment to see my neurologist urgently. December 2016 had been a bit tumultuous with numerous seizures, including one on New Years Eve (at home). They were scary because they were of a different kind in that I was still conscious and more like small convulsions that seemed to go on for hours, as opposed to a Grand Mal seizure where I blacked out. Needless to say my parents were worried. My mum was hysterical and dad even brought an Oxygen machine home!

My neurologist reassured me that this was actually a good sign in that the  Zonegran was blocking the seizure from developing into a full blown Grand Mal, and I was having those types of seizures because I was on a very very low dose (it was probably around 50mg at the time), and I was simultaneously coming off Lamictal. As we planned to increase the amount of medication over the coming months, this should ease off (and I’m pleased to say it did – I’m currently on ONLY 175mg Zonegran morning and evening and no Lamictal).

I was also going through a stressful time on the work front having started working on a new project in the deep-end which might have added to the seizures. He was kind and for the first time in my epileptic life (15+ years?) someone talked me through all the different kinds of treatments available. He talked about the different medications available, surgery (I’m not at that stage, and hopefully won’t be), and the Ketogenic Diet.

My dad being the mad doctor that he is, suddenly woke up at that point when my neurologist mentioned the ‘D’ word. My dad loves anything to do with food as medicine, and this was a Eureka moment for him. Not so much for me though. I love my potato, bread, rice and dessert too much, and can’t don’t do diets (!!!). The thoughts was not appealing at all (at that point in time).

So my dad took it upon himself to research the diet and use himself as a guinea pig starting the next day. He figured he needed to lose some weight anyway he said, he has high blood pressure.  I rolled my eyes as he tried to convince me (unconvincingly). I didn’t know it at that point, but my dad was going on the diet to lose weight because he was going to have a heart surgery for a heart valve replacement. It was planned but I would only find out later. (The diet did help him, and that probably deserves a whole separate post).

The day I decided to go Keto

I had 3 months to go until the medication transition and even if I wanted to, I couldn’t start a diet until the end of March 2017 at the earliest. I unfortunately had a Grand Mal seizure in a public space on 4th April 2017 and my dose was increased thereafter. I also had shoulder surgery scheduled in mid-April 2017 which had to be postponed, to April 20 2017. The timing fell into place and it was after this seizure that I thought I had nothing to lose and would start the Ketogenic diet. (Although I did have a carb-up at the hospital after shoulder surgery!!!) I knew that I’d be recovering at home for a while and could afford to deal with ‘Keto Flu’.

The problem with anti-epileptic medication is that it’s trial-and-error, and the last few years I feel like I’ve been pumped with drugs, and even then if might stop working (as with Lamictal in the past). If the Keto diet has a 50% chance of success with managing my seizures, I’ll take that!

It’s been nearly 12 weeks since that Grand Mal seizure that made me go Keto, over 9 weeks since my shoulder surgery, and now seeing as I’m able to use both arms and type (thanks to physiotherapy), I thought I’d share my journey as I learn.

In this blog I expect to share keto experiments from the kitchen (both my own as well as adaptations of other recipes which I shall link). I’ll also share tips and information on managing keto and epilepsy.

If you have any ideas / requests / contributions for the blog, or would just like to get in touch and have a chat, please write to riagoesketo@gmail.com