Tag: seizure management

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!

KetoPastry-001

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
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‘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.