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.

3 Top Tips: Surviving keto life as an adult with epilepsy

When I started this blog I thought I’d be able to update it regularly with posts about my ketogenic journey for epilepsy, recipes and resources. BOY WAS I WRONG!!! Blogging slipped down the priority list (but that’s ok because epilepsy management comes first).

This post is for adults with epilepsy embarking on the lifestyle with 3 top tips to bear in mind when embarking on this life changing journey & links to 3 recipes on my Instagram @riagoesketo @ananyariaroy.


The GOOD news is that the ketogenic lifestyle is still working for my overall wellbeing and still controlling my epilepsy – this month I’ll be one year seizure free!. It remains to be seen whether that’s the impact of the lifestyle or the medication.

The BAD news is that life has been a rollercoaster this last year and I’ve been terrible at blogging my ketogenic journey apart from microblogging on my Instagram accounts @riagoesketo (just keto for epilepsy posts) and @ananyariaroy (my personal account with a mix of posts including keto).

There honestly weren’t enough hours in a day to work (the load was the kind where you needed more than 24 hours in a day), eat, spend time with family, sleep, exercise, and I pretty much forgot about having much of a social life let along blogging.

My priority is staying seizure-free and keto is just one (major) part of a holistic lifestyle change. Stress and anxiety management is a constant battle and for me this last year post shoulder surgery along with numerous personal challenges on the relationship and work front has constantly pushed my stress limits – stress being my #1 trigger combined with #2 – lack of sleep. I’m pleased to report though that I’ve survived this last year unscathed although I’ve had a couple of auras and took my emergency pill on a few occasions. The lifestyle has taught me to be more aware of my body and I’m definitely more aware of my brain than EVER before! WIN!

So for those of you adults with epilepsy embarking on a new diet for your epilepsy, here are my 3 Top Tips:

  1. Be patient with yourself and enjoy the process:It can be tempting to feel like you need to research and understand everything straight away, get your macros perfect right off the bat, and so on. But take your time to absorb and learn about the lifestyle in your own time (do your READING, don’t just rely on YouTube).

    It is unlikely you’ll learn everything about the lifestyle let alone test the impact of the lifestyle on YOUR body in a month – give yourself time to learn, play and adapt – enjoy the process.

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    Keto Lemon & Mint FroYo
  2. Listen to your body and the different types of dietary therapies used to treat epilepsy:Although I’ve been on the keto lifestyle for nearly 1.5 years, I have by no means been consistently in ketosis. I do have ‘cheat days’ but this doesn’t mean I load up on sugar, I still opt for the healthier low GI options during cheat days (which also tend to be during my period.)

    I’m a strong believer in sustainability and balance and ‘finding what works for you’ at the end of the day and found that for me it was a combination of mostly ketogenic combined with low GI on certain days seems to work.

    View the Epilepsy Foundation website for more on Dietary Therapies.

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    Keto Chocolate Peanut Butter Brownie
  3. Don’t have #FOMO! It’s more than just what you put in your mouth 

    (I personally think the ketogenic lifestyle  works best in tandem with other lifestyle improvements. Factors that could improve outcomes might be e.g. sleep, time with family and friends, work-life-balance, exercise and so on.I strongly recommend taking the time out to assess your seizure triggers, find out what lifestyle factors could minimise them, review and prioritise what’s important, and if necessary, adapt your lifestyle as a whole.

    When prioritising it will probably mean something is sacrificed in the quest for better health, and for us millennials there is always a major #FOMO – but the end result will always be worth it – seizure freedom!

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    FAMILY TIME! Keto Shakshuka for Fathers Day Brunch 🙂

Bonus tip! (And one that I personally struggle with)

It goes without saying that you should be making dietary lifestyle changes for epilepsy under your neurologists supervision and ideally with a ketogenic dietitian, but the reality is that there are probably many who are doing it without either. (I personally had to wait 8 months for an appointment).

Although I am technically under a ketogenic dietitian, follow-up / communication has not been great – largely on my part as it is taxing and a lot of work to submit food diaries, monitor your blood, do routine blood/urine tests etc. A lot of the hard work falls on the patient which is paper based. For an epileptic that can add up to a lot of brainpower and physical energy in addition to daily life and I for one find it quite stressful and draining. Give me an app any day please. (Rant over!)

Nevertheless it IS an absolute necessity if your goal is to manage your epilepsy (or for any medical condition) – please do it under supervision of a health professional as there ARE side effects to the lifestyle.

P.S I write this blog a few days before a milestone “Holidate”! It’s the first holiday I’ve had in a LONG time and the first time in a long time that I’ve gone somewhere without family of some kind as well. I’m completely throwing myself out of my comfort zone. The last time I felt this out of my comfort zone was 9 years ago!  Getting my priorities straight and giving myself a break!

I hope to post more frequently and prioritise this blog every fortnight! GOALS!

 

 

Keto Mini Cinnamon Rolls & Chocolate Rolls (Gluten Free|Low Carb)

Keto & Epilepsy Update

I’ve been struggling to get my fats in again and I know my weight has changed since I started this way of eating, and I feel like I need to adjust my macros. But I’m not quite sure.

However I FINALLY GOT AN APPOINTMENT WITH A DIETITIAN ON THE NHS! Although the appointment is all the way in December, I’m over the moon and couldn’t be more excited because I thought it was never going to happen. I don’t think there are that many “ketogenic diet for adults with epilepsy” specialists around.

Anyway it has been over nine months since I found out about the the diet, and around six months of being on it. I can now say the following:

POSITIVES:

  • My seizures have reduced in severity. Since going keto I did have one grandmal however that was a day after changing my dose which was kind of expected.
  • Creative outlet: I enjoy cooking and experimenting with keto recipes, especially making more ‘mainstream’ food out of low-carb ingredients.
  • Be prepared: It’s hard out there and MOST foods have sugar and/or additives. So planning is crucial!
  • Learning: The Keto WOE isn’t the same for everyone. My dad is doing it for weightloss and his heart but he also doesn’t really care (yet) about inflammatory additives. Whereas I’m doing it for epilepsy and eczema and so additives are important to me.

NEGATIVES:

Please note that both of the negatives mentioned below are also side effects of Zonisamide (Zonegran), the anti-epileptic medication that I’m on. 

  • Weight loss. Chubby 16 year-old me on Epilim would have loved to be able to lose the weight so quickly, but 32 year-old me isn’t quite so sure about the drastic weight loss.
  • Fluctuating energy levels. There are moments where I have sufficient energy and moments where I’m exhausted. I can’t drink caffeine so rely on MCT oil for quick bursts of energy.

FatHead Pastry: The Keto Holy Grail!

My foodprep this Sunday was mini Keto pastries made with a slightly sweetened fathead pastry.

I made bitesized Mini Cinnamon Rolls (0.9g carbs) and Chocolate Rolls / Chocolate Danish Pastries (1.5g carbs) today!

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Whoever came up with the idea of the genius fathead dough. I. LOVE. YOU!!! Next time I visit my sister in Paris, I’m taking along a batch of these babies so I’m not tempted (again!)

Ingredients

FatHead Pastry:

  • 200g (1.5 cups) shredded mozzarella
  • 80g (0.75 cup) almond flour
  • 2 tbsp cream cheese
  • 1 egg at room temperature
  • 1/2 tsp baking powder
  • 1 tbsp Natvia
Cinnamon Filling:
  • 2 tbsp Natvia (or other low-carb sweetener of choice)
  • 2 tsp cinnamon
  • Hot water
Cream Cheese Frosting:
  • 1 tbsp cream cheese
  • 1 tbsp greek yoghurt
  • 2 drops liquid stevia
  • Vanilla

Chocolate Filling:

  • Cocoa or Cacao powder
  • 1 tsp cinnamon
  • Sugar-free maple syrup or sweetener of choice
  • Hot water

Chocolate Drizzle:

  • Dark Chocolate (I used 2 squares of Lindt 85% Chocolate)

Method

Fathead Pastry

  1. Pre-heat your oven to 180 Celsius/360 Fahrenheit.
  2. Measure out mozzarella and cream cheese, and melt in a non-stick pot over a low flame or in a microwave. It will take approximately 1.5 minutes. NOTE: Stir the mixture half way through!
  3. Crack and stir in the egg into the mixture well.
  4. Then measure and add the almond flour, baking powder, and sweetener of choice, and mix well into a smooth doughball.
  5. Divide the dough into two batches / balls.

Cinnamon Rolls

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  1. Place one batch / ball on a parchment paper and place another parchment paper on top of it. Roll it out until it’s as thin as you can get it (but still workable) into a large rectangle.
  2. Prepare the Cinnamon Filling: boiled water, sweetener and cinnamon.
  3. Brush the Cinnamon Filling along the entire flat top of the pastry.
  4. Roll the pastry into a log along the length.
  5. With a sharp knife, cut the pastry into rolls (approximately 10-12 rolls).
  6. Place on a non-stick dish and bake at 180C for 20 minutes (check at 15 minutes).
  7. While the rolls are baking, mix the frosting: cream cheese, yogurt and sweetener,
  8. Once the rolls have baked, drizzle or spread over your WARM CINNAMON ROLLS AND EAT!!!

Chocolate Rolls / Chocolate Danish

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  1. Place the second batch / ball on a parchment paper and place another parchment paper on top of it. Roll it out until it’s as thin as you can get it (but still workable) into a large rectangle.
  2. Prepare the Chocolate Fillling: Boiled water, Cacao Powder, Cinnamon (optional), Sugar-Free Maple Syrup or other sweetener of choice.
  3. Pour the chocolate filling on top of the pastry and spread over evenly. NOTE: Don’t go too close to the edges.
  4. Roll the pastry into a log along the length.
  5. With a sharp knife, cut the pasty into rolls, or slightly longer pastries.
  6. Place on a non-stick dish and bake at 180C for 20 minutes (check at 15 minutes).
  7. Whilst the Chocolate Pastries are baking, melt your required amount of Dark Chocolate to drizzle on top!
  8. Once the pastries have baked, drizzle or spread over your WARM CHOCOLATE PASTRIES AND EAT!!!

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Let’s just say I think I’ll his my fat macros today :-)! These are BY FAR MY FAVOURITE FAT BOMBS!

Macros

Mini Cinnamon Roll:

  • 70 Kcal
  • 3.5g Protein
  • 1.9g Carbs
  • 1g Fiber
  • 0.9g Net Carbs
  • 5.8g Fat
  • Calcium: 84.4 mg

Mini Chocolate Roll:

  • 75.7 Kcal
  • 3.7g Protein
  • 2.4g Carbs
  • 0.9g Fiber
  • 1.5g Net Carbs
  • 6.1g Fat
  • Calcium: 77.9 mg

Death by Keto Chocolate Cake (Gluten Free|Low Carb)

I had a very shit end to last week. Anti-epileptic medication changes led to a seizure on Sunday. Epileptics know how the story goes, and now I’m just just waiting for my body (or brain) to adapt to the changes. (I might do a separate post on that later.)

Anyway, I fasted that day out of sheer exhaustion and because the medicine (Zonegran) causes me to lose my appetite. However, after a few days of resting up, I finally got my ass into gear again.

As a result I needed some major comfort food that was Keto friendly. THIS my friends is how I made damn sure that the rest of the week stayed AMAZING!

KETO CHOCOLATE CAKE!!! With EXTRA chocolate!

I’ve made a few keto chocolate cakes in the past, but I think this one hits the spot. Especially if you’ve been keto for a while and your sweet tooth isn’t what it used to be.

This is the most indulgent, because I’ve used almost twice the amount of dark chocolate of other similar recipes. Initially I set out to make a “flourless” cake, but I decided to add almond flour in the end, so although it isn’t exactly flourless. It’s still very much gluten-free.

Now, before I get the Keto police on me for this post – yes IF you eat the whole cake you’ll probably be thrown out of ketosis. BUT if you use good quality DARK chocolate (Over 75%), then a slice a day won’t hurt if you’re fat adapted and watching your macros.

And dark chocolate is high in potassium, something that a lot of us on this lifestyle struggle with! So why not treat yourself once in a while!

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Ingredients

  • 10 tablespoons unsalted butter at room temperature*
  • 300g dark chocolate (75% and above. I used 3x100g bars of 90% Lindt Dark Chocolate for convenience but recommend 100% cocoa to reduce sugar and carbs.)
  • 5 medium eggs (or 4 large): yolks separated from whites
  • 1/3 cup almond flour (or other flour of choice OR cocoa)
  • 1/4 teaspoon salt
  • 1/2 teaspoon cream of tartar
  • Sweetener: 3 tablespoons of a powdered sweetener of choice (I used Natvia which is a blend of Erythritol and Stevia)
  • Optional: 2-3 drops of Liquid sweetener for additional sweetness if required
  • Optional: 1 teaspoon sugar-free vanilla extract or essence
  • Optional: 1/4 teaspoon coffee

    NOTES:
    *Apologies my weighing scale wasn’t behaving so I will update butter measurements in grams the next time I make this!

Method

  • Pre-heat & prep:
    – Pre-heat your oven to 175C and prepare your cake tin of choice (grease and sprinkle some cocoa powder, or line the tin with a grease-proof baking sheet. I used a round 9 inch tin).
    – Measure out 300g of DARK chocolate**
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    – Measure out 10 tablespoons of butter
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    – Separate the egg yolks from the egg whites into two bowls, ensuring the whites are in a large clean cold bowl for whipping.
    ketochoccake_480 (6)
  • Melt the chocolate & Butter until silky smooth:

    – Option 1: Double Boil the chopped up chocolate and butter on the stove. (Here’s a how-to melt chocolate using a double boiler).
    – Option 2: Melt the chopped up chocolate and butter in 30 second bursts in the microwave. Stirring the mixture in between until the chocolate has completely melted.
    Useful Tip: Make sure your utensils are completely dry when melting chocolate to prevent the chocolate from seizing up.
  • Beat the egg whites:
    ketochoccake_480 (7)

    In a cold clean bowl, beat the separated egg whites on a medium speed until they start to get foamy, then add the cream of tartar and increase the speed until they start to form stiff peaks.
  • Add sweetener:
    Add your sweetener of choice to taste and keep beating the egg whites until the stiff peaks are able to stand by themselves. They shouldn’t move even if the bowl is turned upside down.
  • Add egg yolks, 1/3 cup almond flour, vanilla essence and salt to chocolate:


    Once the chocolate has cooled down, whisk the egg yolks into the chocolate along with the salt. Mix in the almond flour (or other flour or additional cocoa well).
    Optional: Add 1/2 tsp espresso powder into the mixture.

  • Fold the whipped egg whites into the chocolate:
    ketochoccake_480 (11)
    – Whisk 1/4 of the whipped egg whites into the chocolate mixture.
    – Carefully fold the remaining 3/4 whipped egg whites into the chocolate with a spatula.
    Useful Tip: A silicone spatula is easiest for folding egg whites.
  • Taste and add more sweetener if required:
    I added additional stevia drops into mine.
  • Bake:

    ketochoccake_480 (12)
    Keto Chocolate Cake batter pre-baking

    Pour the batter into your prepared cake tin and bake for 30-35 minutes. It will only rise very slightly, and might form a thin crust.

  • EAT!
    ketochoccake_480 (14)

    This cake is great warm or cold but I it gets quite hard once it has been in the fridge. Personally, my favourite way to eat it is a slice straight out of the oven, or after ten seconds in the microwave with some berries and cream. 

Macros

(Based on Lindt 90% Dark Chocolate)

1 cake = 12 servings

1 serving:

  • Energy 280.3 kcal
  • Protein: 5.5g
  • Net Carbs: 6.3g**
  • Fat: 26.8g

**If you would like to reduce the carb count even further, you could:

  1. Reduce the amount of chocolate used to 200g, but I wouldn’t go lower than that as it would seriously compromise the chocolateyness and it taste too ‘eggy’.
  2. Use a chocolate with a lower carb count e.g. 100% cocoa (I recommend Montezuma’s Black 100% Cocoa which I used for these chocolate covered nuts),  and increasing the amount of sweetener used.

 

Crumbly Coconut Granola (Low Carb | Keto | Gluten Free)

Mornings are not an epileptic’s friend!

It’s when many of us are vulnerable to seizures. Mine normally occur when I’m incredibly tired and sleepy, so first thing in the morning is primetime for the seizure gremlins to attack.

It’s therefore vital that my mornings are peaceful and stress-free. Most people don’t like being disturbed in the AM, but I should probably come with a DND warning sign before 8 am and a matcha latte.

I’ve really missed grabbing a quick cereal, yogurt and fruit-to-go

It does seem like Keto breakfasts are ‘mostly’ soft and/or warm and generally take a lot of time and effort to prepare. There seems to be a lot of ‘cooking’ involved to get those macros in. Precious time which most people don’t have.

This Low-Carb Crumbly Coconut Granola recipe came about on my quest for a cold, crunchy ‘Keto Cereal’! I just couldn’t deal with the cravings anymore, and there was nothing in the shops that catered to my needs.

Granola in the shops tend to have sugar or honey, or gluten. This is a homemade solution to my dilemma, bearing in mind that I also needed a high fat intake in addition to low-carb – hence the coconut oil.

Granted, it kind of looks like sand, but it TASTES like a Keto breakfast from heaven! Especially if you’ve been eating bacon and eggs everyday!

A great meal-prep recipe for the working week

It might take some time the first time round, but once you get the hang of making granola, and if you have the ingredients lying around, it shouldn’t take too long the next few times.

The best thing about making any type of granola is you could make a large batch and keep it in an air-tight container for a few weeks (if it lasts that long! I’d give it a few days).

Other benefits of this Granola

  • The texture of this granola also means that it’s great as a crumbly topping on other desserts (I had it on top of my panna cotta yesterday!).
  • An average portion (5 tbsp) has just 3.1g net carbs and 27.5g fat. 
  • An average serving also has 114.3 mg Magnesium and 299.7 mg Potassium  – two minerals that Keto-ers often find challenging incorporating into our lifestyle.

So without further ado, here we go:

Ingredients

Makes 45 tablespoons (average serving = 5 tablespoon)

You will need:

  • Flax Meal: 1 cup
  • Coconut Flour: 0.5 cup
  • Almond Flour: 0.5 cup
  • Coconut Oil: 0.5 cup
  • Vanilla stevia liquid: 3-5 drops (OR other sweetener of choice and vanilla essence or vanilla bean powder).
  • Pumpkin seeds: 0.25 cup
  • Sunflower seeds: 0.25 cup
  • Dried coconut flakes/chips: 0.25 cup
  • Walnuts: 8
  • Cinnamon powder: 0.5 tsp (optional)

Method:

  1. Preheat the oven to 160C (320F) and prepare a baking tray by lining it with parchment paper for your granola.
  2. In a large mixing bowl, add the flax meal, coconut flour and almond flour.

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3. Measure out 0.5 cup of Coconut oil.

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4. Melt the coconut oil in the microwave or over a low heat.

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5. Add the melted coconut oil into the flax-coconut-almond mixture.

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6. Add Vanilla stevia drops to taste (approximately 3-5 drops). Alternatively, add vanilla essence or powder and sweetener or choice.

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7. Stir the mixture well until it starts the come to together – it should start to look like slightly damp sand.

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8. Measure out nuts and seeds of choice. I used pumpkin seeds, sunflower seeds, chopped walnuts and dried coconut.

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9 (optional). Add cinnamon.

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10. Mix the nuts, seeds and cinnamon into the granola mixture well.

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11. Grab the baking tray you prepared in the beginning. Add a tiny bit of coconut oil to it (you can never be too careful!) and pour the granola mixture onto the parchment paper, spreading it out and flattening it down.

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12. Bake in the oven at 160C (320F) for 15-20 minutes, or until the mixture has toasted and is golden-brown in colour. Take it out of the oven every 5-10 minutes to give it a good stir. (Note: You could increase the temperature up to 176C / 350F but keep a close eye on the granola mixture as it is finer than usual, so I like to keep the temperature lower and just increase it at the end for a final toast!).

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13. Remove from the oven, cool and store in an air-tight container!

GranolaFinal

Granola. Yogurt. Berries – Enough said!

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Macros:

1 serving = 1 tablespoon

  • Energy: 61.03 kcal
  • Protein: 1.34 g
  • Total Carbs: 2.1g
  • Fiber: 1.48g
  • Net Carbs: 0.62 g
  • Fat: 5.5 g
  • Magnesium: 22.86mg
  • Potassium: 59.94mg
  • Selenium: 1.81ug
  • Zinc: 0.32mg

An average portion = 5 tablespoon

  • Energy: 305.15 kcal
  • Protein: 6.7g
  • Total Carbs: 10.5g
  • Fiber: 7.4g
  • Net Carbs: 3.1 g
  • Fat: 27.5 g
  • Magnesium: 114.3 mg
  • Potassium: 299.7mg
  • Selenium: 9.05ug

Zinc: 1.6mg

‘Keto Flu’ and the Epilepsy Dilemma

The keto diet can be mentally and physically very challenging. Even more so if you have epilepsy (or any other disability or illness for that matter).

Before diving into any diet or lifestyle change, it’s wise to make yourself aware about the pitfalls and any difficulties you might face.

The ‘Keto Flu’ isn’t actually a “flu” per se (it’s not contagious!!!). It’s a wide range of symptoms that people can experience when going through the induction phase of the ketogenic diet, and it can feel very exhausting on the body and mind.

The reason?

Your body is is going through ketosis, withdrawing from sugar and carbs and converting glucose for energy and instead learning how to burn fat for fuel. If you’re currently experiencing bad Keto Flu, it could possibly be a symptom that your body was heavily dependent on sugar and carbs. Logic says that the more it has to adapt, the harder withdrawal is.

So although it might seem like you’re sick, you’re not, you and your immune system are just recovering from the beating it has taken!

Signs of a Keto Flu

Symptoms of the keto flu can feel similar to a regular flu and more. Some of them are listed below in alphabetical order:

  • Arryhthmia (Heart palpitations)
  • Blood Pressure – High or Low
  • ‘Brain Fog’ – i.e. lack of mental focus
  • Coughing
  • Cramps
  • Digestive issues: constipation, diarrhea
  • Dizziness
  • Drowsiness
  • Fatigue, tiredness, lethargy
  • Headaches
  • Insomnia
  • Irritability
  • Nausea

How long will it last?

I’m a part of a few Keto and epilepsy social media groups, and the overall consensus on the duration of Keto Flu is that well, there is no consensus.

Whilst some people are fortunate to not experience the Keto Flu, some may only get it for a few days, whilst some have reported feeling poorly for 3-4 weeks.

However long it is, it is temporary, train the mind to think positive! Once you’re in ketosis and your body has adapted to burning fat (ketones) for fuel, your energy will increase and the symptoms should ease.

Tips to avoid / deal with Keto Flu

lemonade
Keto Ginger Lemonade with mint

  • Sufficient electrolytes: Sodium, Potassium, Magnesium. These can come from a number of sources:
    – Food & beverages: I monitor my macros using Chronometer because it shows me units such as vitamins and minerals, and I can then adjust my food intake accordingly.
    – Himalayan salts: add it to your food, water, or directly under your tongue when you’re feeling weak.
    – Drink homemade bone broth.
    – Supplements as required.
    – Dead Sea Salt / Epsom Salt / Magnesium Salt baths.
  • Stay hydrated!
  • Lots and lots of H2O. The diet is dehydrating, so it’s important to stay hydrated. I find this to be quite challenging personally.
  • Eat more fat! Remember fat = energy on this diet, so review your macros if needed to increase the amount of fat in your diet.
  • Limit your protein to an adequate amount – just enough for your body to do what it needs to – again, watch those macros. If you’re watching your calories (if you’re trying to lose weight, I would focus on cutting the carbs and increasing the dietary fat for energy, and then filling the remaining recommended calorie intake with protein.)
  • Sufficient nutrition: The Keto diet isn’t lacking in nutrition, although there might be some individual areas of contention. I really like this article on compoundsolutions.com which highlights food sources of micronutrients in the ketogenic diet.
  • Prepare for a few days off!!! Bear in mind that Keto Flu will probably strike 3-4 days after you start the diet, so it would be a good idea to take a few days off to spends a few days in bed with Netflix. Prepare comfort Keto food in advance so you don’t have to worry about cooking on those days. Pre-keto, my mum would make me chicken stew and ‘Gola bhaath’ (rice porridge). So I had the same, but with cauli-rice instead and it worked a treat! And lots and lots of bone broth – I cannot stress its importance.
  • Take any other medications you’re on, on time. If you forget your anti-epileptic (or other medications), it can affect your side effects of both your drug, your condition, as well as keto flu. Set a reminder and alarm on your phone for each day.

Keto Flu & The Epilepsy Dilemma

Personally, I got diarrhea and a dodgy tummy about 4 days into the lifestyle (which only lasted for about 2 days). But the problem with having epilepsy AND doing the Keto diet, is that ‘Brain Fog’ and tiredness seems to be a constant, and it’s been a good few months on the diet now.

I’m on a medication called Zonisamide (Zonegran) and like all medications it has side effects. The side effects of Zonegran include ‘flu symptoms’ (!!!), light-headedness, trouble concentrating, tired feeling, loss of appetite, problems with thinking or speech and drowsiness. There are more but I’ve just picked some of the side effects I’ve experienced, which also tally with Keto Flu side effects. (As I’m taking all the necessary precautions, I don’t think it’s a rare case of the keto flu lasting more than a month!)

What I’m hoping for is that as time goes on and my body becomes stronger and gains more energy with the help of the Keto lifestyle, this will enable me to counter the side effects of Zonegran (maybe even reduce the dose) and thereby solve the dilemma. Watch this space!

My one other tip for those with epilepsy going through the Keto Flu (in addition to the above):

  • Allow yourself to sleep and rest. And then sleep and rest some more! Your BRAIN already works double-time trying to keep up with normal life, now it’s working triple-time trying to figure out what you’re doing to the body, and both your brain and body needs the rest. Give yourself a break!

Have you experienced the Keto Flu with epilepsy? Write to me and tell me about your experience!

 

 

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