I am writing this blog to because I am in a dilemma and doing so might help me gain clarity over which path I should take (apologies – this is the longest blog ever).

As you will recall, I am on the ketogenic diet eating 4 grams of carbs and 40 grams of fat at every meal in the vain hope that the bi-product, ketones, which are derived from eating this way, will control my epileptic activity and thus improve my cognition.

All was going well: Cook in bulk and freeze; check the menu and make adaptions if I was going out somewhere; eat differently to everyone else.  It was a habit – I just got used to it.

But the diet has ‘side effects’ that the dietitian didn’t tell me about – I can’t try the biscuits that my ten-year-old daughter has made; I can’t eat the challah bread on a sabbath meal, and because in traditional Judaism a meal isn’t considered a meal unless you eat bread I am not allowed to wash my hands in the traditional way before the meal or sing the special blessing afterwards; on takeaway night I still have to make my own food and sometimes I eat quite late because I have made everyone else’s dinner but not my own.

These things are difficult for me but I know that I can sustain it if the benefits outweigh the side effects. And so this is where I reach a crossroads – I have been on the diet for four and a half months now and I need to make a decision as to whether to continue.  The dieticians and doctors say that you should see a reduction in seizures by three months of being on the diet but I have heard cases (on Facebook – where else?) where people don’t see a reduction until six months. But because I wasn’t having seizures – ‘only’ a cognitive deficit it is always going to be difficult to assess if the diet is actually helping me.  I am using four measures to help me make this assessment.  The first measure being observations from those nearest and dearest to me and they have, almost unanimously, said that I seem more alert and in a better mood.  The second is my own self-assessment – I agree my mood is lighter, I feel stronger.  But other things are also happening as well.  My memory has deteriorated – the other day I went to make myself a cup of coffee and after I made it I put the cup of coffee down and right next to it was another cup of boiling hot coffee that I must have only made a few moments earlier. I’m also noticing that my propensity to get the words that I want to say out of my mouth has reduced.  Instead of telling my son to ‘Hurry up and go to the toilet’, I told him to ‘Go and put your clothes down the toilet’. Obviously he found this hysterical – but it was disturbing for me.  So my self-assessment of whether the diet is working for me is a mixed bag.

The third measure is a neuropsychological assessment which measures cognitive processes such as problem solving and memory.  I had a test before I started the diet and one three months later. The pre-test results were similar to someone with amnesia.  After three months on the diet my scores improved in all areas. However, I am aware that, as any good neuropsychologist will tell you, the assessment does not measure everything and that other people’s observations and my own are just as important.

The last measure is an electroencephalogram (EEG) – a measure of my brain activity.  I had an EEG before I started the diet, which like all my EEGs, shows that I have epileptiform activity (a propensity to have a seizure) but I am not having seizures.  I believe that it is this epileptiform which is causing my cognitive problems.  I was on edge for three and a half weeks to get the results of the EEG.  And yesterday the results came in – there has been no change in my epileptiform activity since I started the diet. However, just like the neuropsychological evaluation, and as any good neurologist will tell you, I am aware that the EEG does not measure everything that is happening in by brain.

In amongst all of this I have to take another factor into account – I want to come off my meds.  I have been researching (on Facebook – where else?) the fact that my anti-epileptic medications could be having a detrimental effect on my cognition in addition to the epileptiform activity. However, coming off meds could be dangerous (I’ve had clonic tonic seizures previously because I changed or forgot to take meds) and so I need to make sure that something else will control my epileptiform activity before I make any changes.

So now my dilemma – stay on the diet or come off?  Over the past year, I have realised that it is important to be one step ahead of the game – I have to ask myself – what should I try next if this medication/therapy doesn’t work.  My next avenue, as I have said previously,  is CBDoil which is made from hemp – part of the cannabis plant.  What I am talking about here is the oil that you can by over-the-counter at many health food shops, or online and not Medical Marijuana.  Medical Marijuana, which can treat a host of conditions, is made from the marijuana part of the cannabis plant and currently, unfortunately, UK doctors are not able to prescribe it (although it is available in many other countries included 27 states in the US, Israel and the Scandinavian countries).

If you read all the literature (ok, websites) on CBDoil you will find out that it is the new miracle cure for anything from brain cancer to ADHD, chronic pain to epilepsy[1].  There is not as many double blind trials for the legal substance CBDoil as there are for pharmaceutical drugs but if on Facebook groups (where else?) many people are saying that it has reduced their seizures then who am I to knock it and say that it is load of baloney.  If it works, it works.

So, what’s the dilemma, I hear you ask – just go onto the next thing – try the CBDoil.  Well two dilemmas?  Firstly – should I come off the ketogenic diet?  I can see that in some ways it has worked, but in others it has made things worse and the reason for going on the diet was to improve my cognition and not my mood.   And secondly – if I am going to try the CBDoil which brand should I try?  The CBDoil market is entirely unregulated –there are many different brands and each brand has several products – it is a bit hit and miss as to which one works.

In writing this blog, I have come to the clarity that I was looking for.  I feel that the ketones might be over-reacting in my brain causing cognitive overload and therefore just like reducing a medication, I am going to decrease the amount of ketones I am making. I can do this by slowly (over a number of weeks – it is just like coming off an anti-epileptic medication) reducing the amount of fat and increasing the amount of carb I take – so that my diet becomes similar to a ketogenic diet for weight loss. People who follow the weight loss programme still create ketones, but not to the same level as on the medical diet and people on this diet often say that they feel more energised than they used to be.  It is that energy that I still want to maintain.

Once I have got to a fat/carb ratio where my memory improves but my energy levels are still the same (Ok, this might be asking to much but it’s worth a try) I will go to a naturopath that I know who specialises in CBDoil  but if I feel that my mood/ alertness has reduced significantly I can always go back to the stricter medicalised diet.  And then I will go to a natupath I know who specialises in cbdoil to ask her to recommend me a product (there aren’t many of them, so I am lucky that I know someone like this). It will work out more expensive to buy the CBDoil through her (because I will have to pay for her time and presumably she will recommend an expensive type of CBDoil) but I am confused as to which product to buy and if I go to her she will make the decision for me.  If I feel that the CBDoil is working, I will try, under the supervision of a neurologist, to come off my meds.

Obviously I really don’t have a clue what I am doing.  It’s guesswork really.  But it’s an educated guess and I have come to realise that I am the best person to make these kinds of decisions.

In other news

I feel like I am getting towards the end (or a new beginning) of my story.  It’s just a hunch, and I could be wrong. Anyway if the end does happen, I have decided that I would like to get my blog published as a book. Somehow over the last year and a half I have amassed about 40,000 words in musings and they could be of interest to other people. To that end I have commissioned a proofreader (OK, asked a friend a favour) and then if I do get to a final chapter I might as well send it to an agent or two and see what they say.  After all, I’ve got nothing to lose.

PS – A note on medical marijuana – there are many different strains of medical marijuana and each one treats a different condition and I believe strongly that if it can help people, as in the case of little Alfie Dingley[2], then it surely it should be made available for this use. Although I do not know them, I am sure that if Alfie’s parents thought that the legal substance CBDoil, which they can buy over-the-counter, could help their son they would have given him that rather than going through the exhausting process of trying to get medical marijuana legalised. As far as I understand it CBDoil and medical marijuana can treat similar conditions – but currently it is a bit hot and miss as to how successful CBDoil is but this is not the case with medical marijuana, where each product is grown to treat a specific condition.

To join my Facebook group go to https://www.facebook.com/groups/371346339966284/

[1] As I keep on saying my mind is a bit of a fog, so if you want more details on exactly what cbdoil is please go here https://www.medicalnewstoday.com/articles/317221.php

[2] http://www.dailymail.co.uk/news/article-5457793/Boy-6-rare-epilepsy-hospital-seizures.html

 

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