General Keto for Epilepsy Keto Tips

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

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.

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