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My journey on the ketogenic diet - part 4

Created:

31 July 2018

Sharon Ross is following the ketogenic diet in an attempt to control her seizures.  In her fourth and final blog she decides whether to continue with the diet.

Sharon Ross is standing on top of a windy hilltop. She is wearing red glasses and a purple beanie. Her hair is blowing across her face.

Challenging to measure outcomes

I was patient and hopeful with the diet.  My dietician had told me that by three months I should know whether the diet had worked and I was prepared to give it 100 per cent for the whole period.  We both knew that it was going to be challenging in measuring whether the diet was successful because my main symptoms were cognitive. One neuropsychologist said my thinking was similar to someone with traumatic brain injury. Usually seizure reduction is used to measure the benefit of the diet but I have not had a seizure in over two and a half years.

As I persevered with the diet I noticed five ‘side-effects.’ The first two – the possibility of kidney stones and weight loss – are known side effects but the others, were the types that wouldn’t have been listed on a packet of medication.  Because kidney stones are a known side effect, I had a blood test to see if I was at risk. The results suggested that I was, so I was prescribed with medication to prevent this from happening and thus this side effect seemed easy to control.  As for weight loss, I was not adverse to it (!!) and I have gone down two clothes sizes. However if the potential for weight loss had been problematic then I’m sure that my dietician would have adjusted my fat and carb ratio accordingly.

Epilepsy becomes visible

The third ‘side-effect’, which the dietician did not tell me about, is that my epilepsy was no longer invisible.  Epilepsy is, mostly, an invisible illness. About 1 in 100 people have epilepsy so most people have met one person with it, but they don’t necessarily know  – unless of course that person is on the ketogenic diet.  If you share a meal with someone on the diet you will know they have epilepsy, because their meals simply look a bit strange (extra mayo, no bread, no pasta, picking out high carb veg in a salad).  

As an observant Jew keeping the Sabbath, I am perhaps invited over to other people’s houses to share a meal, more than most.  But when this happened, even if I did not know them so well, I have had to phone them up beforehand and say something like ‘You see, I have epilepsy and I’m on a special low-carb, high fat diet.  Do you mind telling me what you are serving so that I can see how I can adapt the meal to meet my needs?’

On these occasions my invisible illness becomes visible through my food and even though I think it is important to remove the stigma of epilepsy, I preferred it when my condition was invisible.  (NB I have always found that I can adapt my meals at other people’s houses or in a restaurant to meet my needs).  

No more puds

Another side effect of the diet is almost totally giving up dessert and other high-carb naughty treats. If I was a keto mum or dad preparing food for my child on the diet, I know that I would experiment endlessly until I found a whole range of treats that my child loved (see matthewsfriends.org for plenty of suggestions),  but for myself I guess at a certain point I just lost motivation and the energy to experiment so, apart from cheesecake, I make do without. 

The fifth and last ‘side-effect’, I think. is idiosyncratic to the peculiar epilepsy that I have.  I have noticed that sometimes the words that I want to say are not the words that are coming out of my mout. For example, I was talking to a friend about a very nice non-ketogenic chocolate mousse that I can make and instead of saying it was lovely with grated chocolate on the top, I said it was lovely with grated carrot.

Neither the dietician, nor the members of the various Facebook groups that I am on, have heard about this side-effect.  Nevertheless I am convinced that the ketones that are produced from eating this way are somehow making an impact on the parts of the brain that help me communicate. It is a challenging and somewhat depressing side-effect to live with.

Making a decision

So after three months I had to decide whether I wanted to continue with the diet.  Even though my post-diet cognitive evaluation scores showed an improvement and even though family and friends universally said that I seemed brighter and more alert I decided not to continue.  I did not feel that my memory, processing or decision-making ability had significantly improved enough for me to keep on it.  I started to wean off the diet – slowly under the supervision of my dietician I ate more carbs and less fat.  

However, I noticed that I was becoming more and more depressed and more and more drowsy.– I had felt like this before the diet but somehow, whilst I was fixating on looking for cognitive changes, I hadn’t observed that my mood and alertness had improved.  So, I changed my mind and decided to stick with the diet, for now a least. A study by the Johns Hopkins Adult Epilepsy Diet Center found that after three months, about one in four adults became seizure-free and a further 17 per cent had at least a 50 per cent decrease in their seizure frequency1. So maybe I fit into the 17 per cent who are noticing some changes but it is not the complete miracle they were looking for.  

Not as difficult as it seems

I would recommend anyone with an intractable (uncontrolled) epilepsy to try the diet.  It is not as difficult as it first seems.  It’s a habit that you just get used to and for me at least, even if I am not getting all the benefits I wanted to – and even if there are ‘side-effects’, it’s worth the effort.  I will however, continue, in my quest to find a complete cure.  I am an epilepsy warrior, after all!

Sharon blogs at sharonrossblog.com

You can follow her at @SharonRross or join her Facebook group https://www.facebook.com/groups/371346339966284/

1https://www.sciencedirect.com/science/article/pii/S1525505016001128

The views expressed here are those of the author and not necessarily those of Epilepsy Society.

More information

You can keep up to date with Sharon’s blog here

Find out more about the ketogenic diet or at Matthew's Friends.