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

Is Carb-Cycling OK for an epileptic?

I shared on my Instagram yesterday that I had a non-Keto frozen green smoothie bowl. It was DELICIOUS and I have zero regrets about it just because it was so nutrient dense and what I needed at the time. I was craving fruits and decided to “listen to my body” and “carb-up” the healthy wholefood kind of way.

Eight days ago I had a seizure due to changing my Zonegran dose again (the medicine makes me so tired and we’re adjusting my dose to try to counter that). I’ve definitely still felt a bit off since – tired, exhausted and now spaced out following the seizure. BUT it was just that one seizure *I HOPE*!

So as my brain and mind sorted itself out and found its feet, I lost my appetite. And when I got it back a bit, all I craved was good hearty whole food. Hence this frozen pineapple, spinach, ginger, turmeric, almond milk smoothie bowl! NO FILTER, it’s that green!

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I KNOW it isn’t OK for an epileptic to carb-up on Keto

I’m aware that the tiniest bit of excess sugar/carbs for an epileptic could mean a seizure. Post seizure I did fast and I was in ketosis and I did stay keto for quite a few days.

But I’m a girl that always listens to her heart as well as her head (unfortunately or fortunately). I weighed it up and the usual “carb alternatives” just weren’t making me happy, and I just needed a simple green smoothie.

I think my body was probably crying out for nutrition which I think I need to work on improving because I feel so much better this morning. I think I should probably make more effort to have a Keto Green Smoothie a day. 

I’m yet to see a dietician (still waiting for my appointment), but perhaps the occasional healthy carb-cycle could work for me as long as I avoid white sugar and processed/junk food. *Watch this space!!!*

Since this Monday morning I’ve been back on the lifestyle again but I think I really need to review my options and discuss with a dietician. This link has some information on the types of ketogenic diets for epilepsy.

 

‘Cheese’ & Onion Bittergourd and Kale Crisps (Gluten-Free|Vegan|Low-Carb)

I love kale but bittergourd / bittermelon / bittersquash / Balsam-pear / Karela / Goya – call it what you will, my reaction to it would have been the same until very recently. EURGH!!! It’s just so erm, intensely bitter? HOW could anyone with normal tastebuds enjoy it?

This is a recipe to start initiating yourself into the world of bittergourd! It’s actually yummy and moreish.

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I don’t know how else to start this post but to say that until I started preparing bittergourd this way, it has been nearly (but not quite at) the top of my hate list of vegetables (or is it a fruit?) . Either way it’s something that until very recently my tastebuds detested.

Being Bengali this is shameful as it’s a staple vegetable in many dishes including my boyfriends beloved “Shukto” or Bengali style mixed vegetable. Bengali’s love exciting the tastebuds, and this mighty vegetable definitely does. I unfortunately cannot make a “Shukto” yet (but I shall soon!).

Amongst other nutritious elements, bittergourd is a high potassium vegetable, which is something that on the keto diet, I’ve been struggling with and have been searching for ways to incorporate it into my every day diet. If it wasn’t already obvious enough, I’m a bittergourd hater, but this simple recipe my friends, I simply cannot get enough of!

Although it’s commonly seen in Asian households, it’s highly underrated in the western world but it’s increasingly available in supermarkets (and readily available in the Asian / Indian markets). 

Bittergourd: Reasons why I can’t get enough of it now

  1. I’m older and wiser! I know that it’s good for me. Like kale, bittergourd is a nutritious powerhouse
  2. The green colour! And how it changes into a brighter green when you season raw bittergourd with salt. It’s magic :-).
  3. It looks weird and dangerous, like a massive green club.
  4. It can be delicious and moorish, when done right (like this recipe)!
  5. These crisps keep well for a few days in the refrigerator.

Ingredients

I’m not listing any quantities for the dressing below because I believe it’s entirely up to your tastebuds and personal preferences as to how flavoursome you’d like your crisps to be! Quantities for the vegetables are also up to you, the 1-2 cups are just a guideline.

  • 1-2 cups sliced bittergourd: Washed, dried and sliced thin.
  • 1-2 cups Kale: Washed, dried and torn into larger than bite-sized pieces (they will shrink when baked).
  • Olive oil (or any other oil of choice). I personally like to use a garlic olive oil.
  • Nutritional Yeast (This is where the ‘cheese-ey’ flavour comes from. There isn’t any actual cheese in this recipe.)
  • Onion Powder.
  • Himalayan Salt / Sea Salt.
  • Cayenne Pepper.
  • Turmeric: Optional

Method

Bittergourd chips:

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  1. Heat the oil in a suitable pan. You will you need enough oil to fry the bittergourd until they’re crispy.
  2. Slice the bittergourd into thin round slices and wash thoroughly.
  3. Sprinkle salt onto the bittergourd and  massage into it well. Leave for 10 minutes.
  4. Shallow fry the bittergourd in the oil until they’re darker and crispy but watch closely to make sure they don’t burn. The seeds should be crispy. (You could also try baking them, but we haven’t attempted this before).
  5. Once fried, dress the bittergourd with nutritional yeast, onion powder, himalayan salt and cayenne pepper according to your macros and taste.Tip: The bittergourd crisps keeps well in the fridge for a few days so you can make a large batch of this and snack on it (if it lasts)! It’s good cold, room temperature, or can be reheated in the oven or dry-toasted in a pan on the stove top.

Kale chips:

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  1. Wash and dry the kale well.
  2. Pre-heat an oven to 150-160C (it depends on your oven but I find that a lower temperature works better).
  3. Massage the kale with olive oil, nutritional yeast, onion powder, salt and cayenne pepper according to your macros and taste. Set aside for 5 minutes.
  4. Bake your kale chips in the oven for about 12-15 mins, and then give them a toss, then bake them again for another 10-12 mins (or until crispy but not burnt).

I don’t think kale crisps keep as well as bittergourd crisps, so eat the same day if possible.

Eat separately or mix BOTH the bittergourd and kale crisps up for the best of both worlds and enjoy getting your greens and nutrition in!

 

Epilepsy and the Keto Diet

This article from SeizureSync.com is a succinct summary of epilepsy & the keto diet for beginners.

It’s a good read if you’d like a very brief overview of what keto is, what the science says, how to follow a keto diet, and people’s experiences, in a less than 5 minutes read.

Seizure Sync

Disclaimer: Please consult with your doctor before starting the keto diet, or considering dropping or reducing your daily medication intake.

For most, epilepsy is something that is completely manageable with the introduction of medication. But not everyone wants to take medication every single day.

It’s tough to carry around an array of pills with you at all times. There are side effects to certain medications, such as drowsiness, reduced concentration, personality changes, and reduced IQ . Taking medication is stigmatized. A large number of people don’t want to be seen taking medication all the time. It can make you feel like a patient.¹

An avenue explored by a select number of people with epilepsy that has worked very well is following a diet. More specifically, the keto diet. The Keto diet is popular among people exploring alternatives to medication with epilepsy, and has been shown to reduce, and even eliminate day-to-day medication…

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