Over 20 years ago Meryl Streep starred in the film ‘First Do No Harm’ which gained her a Golden Globe nomination.  The film told the story of a young boy, Robbie, who was hospitalised with uncontrolled epilepsy and who was having multiple seizures daily. His doctors gave him medication after medication but it didn’t help. His parents were frightened not only by the life threatening seizures but also because their sons personality was slowly drifting away.  Eventually the doctors offered surgery but his parents were anxious as to what that would mean.  His desperate mother went to a library and found literature on the high-fat low-carb ketogenic diet. Against neurologists’ advice they took Robbie to the Johns Hopkins hospital in Baltimore to a specialist clinic and under the guidance of a dietician within a day his seizures had stopped.  The film is inspired by true stories and along with the establishing of the Charlie Foundation charity in the United States and the Matthew’s Friends charity in the UK it gave a huge impetus to increase the number of ketogenic clinics for children. But not for adults. 

My story is not as dramatic.  Although I was diagnosed with epilepsy just over ten years ago, it was not until recently that I became aware of the true impact the condition was having on my life.  I began to realise that even though I had experienced seizures, my main symptoms were cognitive – poor memory, processing and decision making – I have been told the symptoms are similar to someone with traumatic brain injury.  Medication was not working so my neurologist referred me for video-telemetry (VEEG) – I was videoed 24/7 whilst being hooked up to an EEG for five days.  However, after testing the neurologist told me that they had not found out any new information and there was nothing further they could do.  I was devastated. To cut a long story short, after a year of getting second and third opinions my mum suggested that I tried the ketogenic diet after coming across the film First Do No Harm on TV (a cousin also told me about the diet after coming across it online). After further research I found out that at the very hospital where I was told that there was nothing more they could do for me there was a ketogenic clinic for adults. I suggested to my neurologist that I should be referred there.   I have now been on the diet for six months and whilst my cognitive symptoms still exist I am less drowsy and my mood is better.  It has not been the miracle I was looking for but it’s an important step in the right direction.  

There is undoubtedly a disparity between the awareness of the ketogenic diet as a treatment for adults as opposed to a treatment for children. However, the facts are clear. Studies with adults have shown that after three months, about one in four adults on the diet become seizure-free and a further 17% have at least a 50% decrease in their seizure frequency (1).  These are similar to studies with children (2).  However, epilepsy affects 240,000 adults in the UK and 60,000 children (3) yet there are only four specialist ketogenic clinics for adults compared to 25 for children (4)   

Epilepsy is not an easy condition to treat. Although a first medication gives 50% of patients seizure freedom, a second medication gives seizure freedom to just 14% and the rest, a third, will remain unlikely to be seizure free (2). Of these some will have to live with seizures. I believe that I should have been offered the diet a few years ago because nothing else was working but I am also concerned that there might be adults being offered surgery who have not been given the diet as an option and also that some of those experiencing medication side-effects from their anti-epileptics such as cognitive deficiencies, drowsiness, insomnia, aggression and paranoia (5,6) (indeed my medication could be making my cognitive symptoms worse) would also like the  option of trying out the diet as well. 

I can make some educated guesses as to why there is low awareness for the diet as a treatment for adults – there is not enough funding for research because pharmaceutical companies do not benefit from this treatment; the diet is just a little too far out of the comfort zone of most medics; there is a perception, like there is with ADHD and Autistic Spectrum Disorder, that epilepsy affects children but not adults and finally those dedicated parents who started ketogenic charities focussed, at first, on children. But things are changing – Matthew’s Friends have put together a beautiful book of recipes aimed specifically for adults;  more studies are being published about  adults on the diet and slowly, slowly more adult clinics are starting up. But more awareness and funding are needed. As for me I’m going to continue with the diet but I’m also going to try Cbd oil – another treatment that has helped many people but is not, as yet, on most neurologists’ radar. 

Go to matthewsfriends.org for information about the diet 

I’m not sure why the Huffington Post didn’t publish they – they said the topic wasn’t ‘quite right for us’ – so I’m guessing that means it’s too niche or too controversial please,  which it might be.  I’ve been on the Cbd Oil for three weeks now –under the advice of my naturopath I have increased the number of drops I am taking gradually from one drop a day to four but I haven’t noticed a difference in my cognition.   I’m going to give it three months and then have another EEG to see if the number of spikes I am having in my brain activity has changed.  The side effects of my medication might mean that i’m not noticing the benefit of the diet. I will let you know.

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

(2) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662214/

(3) http://www.thedaisygarland.org.uk/about-childhood-epilepsy-and-epileptic-children

(4) https://www.matthewsfriends.org/medical-section/keto-centres/

(5) https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects

(6) https://www.webmd.com/epilepsy/medications-treat-seizures#1 

Over the past year and a half I have gained quite a penchant for Facebook communities that have helped me understand my condition. I have felt connected to people I have never seen and, at times, these people have given me motivation to continue and have helped me search for solutions where doctors have told me there were none.  I have felt a deep sense of belonging to these communities – I have felt welcome whatever my mood or questions I may have had.  But in finding these communities I have forgotten, or more truthfully, taken for granted – a community that means more to be than Facebook communities – a face-to-face community (aka – the Borehamwood Jewish Community).

I am very privileged to belong to this community where I feel everyone, no whatever who they are, is welcome. It’s not perfect (what online or face-to-face community is?) but it is where I feel at home and I realise that, especially in today’s disconnected age, it something that I should be very grateful for.  I used to think that to really feel part of a community you needed to give to it – to organise activities, to make meals for people that are sick, be on the synagogue board, to run children services – after all what you give in you get out – but after a while of trying these things I realised that I just couldn’t give in this way – because of my illness I feel distanced from my actions and therefore when I give with my time I just don’t feel a sense of satisfaction and just can’t somehow give in the way that I want to  (People that know me might say that I do give to the community but I don’t feel that inside). And so I began to think that because I couldn’t give to the community perhaps I wasn’t so much a part of it as I wanted to be.

However, a few weeks ago in synagogue the weekly biblical reading was called ‘Vayakhel’ and it made me re-evaluate my role in the Borehamwood Jewish community. Vayakhel literally means ‘and they assembled’ – the reading tells the story of the Jewish people coming together to listen to the laws of building the tabernacle.  They gather and they are given a task to do and each person has a different task, a different role to play. The word –vayakhel has the same route as the word ‘Kehilliah’ – a community.  I had always thought that in a kehillah there were some people that were more important than others – some had more friends, some had more money and some contributed more in terms of their time.  However, I have learnt that in the true sense of the word kehillah these people are no more a part of the kehillah, the community, than anyone else.

Last November I went with my children to the local Remembrance Sunday parade.  Together with my son’s beaver troupe and other organisations we gathered by the local war memorial and fell silent for two minutes to remember those that had fallen and for the first time that I can remember I felt part of a different community – the Borehamwood community (ie not just the Jewish one) – it’s a shame that it had to take such an occasion to make me feel that way but just the act of gathering seemed to do it. Each person was important – the rabbi, the priest, the major, the beaver leader, my son the beaver and me the mother just watching with her daughters at her side. Without each component the gathering would not have had the same atmosphere. And so I have concluded that all different types of people are equal members of a community, whether they have many friends or none, whether they are rich or poor, give in time to the community or not, well or unwell, young or old and that I should feel privileged that I have such a community and, even if I am not contributing to it in the way that I would like, I should feel that I am playing an important role just by simply gathering in a place and being counted.

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In medical news

There are other things I realise that I have forgotten.  Since I start the ketogenic diet I had forgotten what it was like to feel really drowsy and I had forgotten what it was like to feel suicidal.  Last week I tried to eat a few more carbs and a bit less fat in an attempt to reduce the side effects that I was getting from the diet.  I ate a little more carrots and peppers and a little less mayo in my meals. But when I went to the cinema I felt myself slowly becoming drowsy – not in a tired way – but in a I’m totally out of it way and I remembered feeling that way before I was on the diet and I felt it quite a lot.  And then I had a little suicidal thought.  It was only a little one, not the barrage of ‘I want to kill myself’ every five minutes that I used to have, but it was enough.  I didn’t want to go through that again – after all I have three children who need me. So I have decided to stay on the diet, for now at least, even though words keep on coming out of my mouth wrongly (this week I said a chocolate mousse with grated crated on the top tasted really nice, when I meant to say grated chocolate) and my memory might be getting worse.

Also this week I spoke to my Nice Neurologist over the phone (they will speak to you between appointments if you are persistent) and she said that there was no need for me to have a 24 hour EEG again, because I am having on average eight spikes every hour, each on lasting up to a second and thus a one hour EEG should collect all the necessary data. ‘So, OK,’ I’m thinking, ‘I’m not having seizures but nevertheless there are eight things that are putting stress on my brain every hour, which are not happening in other people’s brains’.  After having this conversation, I went to look at my report for my video-EEG in July 2016, when I started writing this blog, and I noticed what might be a slight administrative error (ie saying there were seven spikes during the daytime rather than seven per hour).  Nice Neurologist said that she would double check the original data because I would like to know if things have remained the same since July 2016 or got worse.

Next week, just before the Jewish festival of freedom, Passover, begins I am going to the naturopath to start cbdboil treatment.  I pray that it gives me the freedom from my (lack of) thoughts that I am so desperate to obtain.

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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.

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[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

Here I am on week three of the ketogenic diet and I thought I would update you as to how I was getting on.

I do not want to put anyone off, but there are four reasons why the diet is more challenging than I initially thought it would be.  Yes calculating the correct carb/ fat ratio is tricky (and the ketogenic recipes that I found mostly had different ratios to my own so I had to recalculate the ingredients using my own ratios) and yes it’s time consuming to weigh all your food but most of all, and something that I didn’t think about before I started the diet,  it has taken me time to find recipes that I like.  Changing the quantities in recipes to get the correct recipes has often meant at first I was eating things that I would not of, under any other circumstances have eaten  – the crustless quiche didn’t fill me up, so I changed the recipe making sure I was still on my 4g carb / 40g fat and added more low carb mushrooms, the mincemeat was too oily, so again I recalculated and the next time I made it with less oil and added avocado as a fat source for a starter and the cheese and tomato quiche I simply didn’t like. It will take a long time to get a full menu of meals for me.

The second reason why it’s challenging is that, for now and least there is a limited amount of food on my diet that I can give to my family.  Quiches with lots of cream, mushrooms in a lot of oil and tomato and pepper oily soup just don’t appeal to my family (although cheesecake with an almond base is a winner).  I thought I could convince them in the beginning but now I know that that just won’t be possible.

Thirdly the diet has a monetary cost.  There are cost savings to the ketogenic diet – I can’t eat out anymore (at least while I am getting used to the diet), I can’t impulse buy chocolate bar, or decide to just take a Ben and Jerry’s out of the freezer and finish it off. But my staples have become flaxseed, almond flour, extra virgin oil and cream cheese and so our food bill has gone up (and although the NHS are advising me to do this they are not funding the added expense).

And lastly I didn’t realise how much I was going to miss other food.  A very good friend of mine said that she couldn’t go on this diet because it would mean giving up chocolate.  But I have found that it is easy to give up chocolate (even Ben and Jerry’s chocolate fudge ice cream) but what I miss is bananas, a cup of tea with real milk, a slice of challah – traditional Sabbath bread – and freshly cooked pizza. Before I started the diet it was the logistical nightmare that was concerning me the most, but I now realise that is just part of it and missing some foods is quite hard especially when they are in your kitchen cupboard just wanting to be eaten.

In the past the diet has been a course of treatment mainly for children.  But my experience as a mother on the diet is that I am facing different obstacles to the one that I child might face. This is because although I am getting assistance from my mum, Facebook groups and my amazing nutritionist, – no one is doing the diet for me – I am facing the demands of a very complex diet whilst at the same time suffering the symptoms of epilepsy.  In my case the symptoms are mainly cognitive – a recently neuropsychologist was a bit baffled when my test results came out as similar to someone with amnesia because I just didn’t come across that way. Thus I struggle to make a simple meal because for example look at recipe sheet for a quiche, and go to the fridge to get some eggs and come back and realise that I need some cream as well and then come back and realise that I need some cheese and so one.  It’s exhausting.  But I can’t imagine what it would be like to have a clonic tonic seizure (or a partial seizure, complex seizure, absence seizure etc) and then worry about complying to the diet.  I’ve had four clonic tonics in the past and the thing about them that I don’t think that most people realise is that afterwards you do not feel ‘with it’.  Personally it took me a good few hours to recovery from them.  I am sure that excellent advice and care would be given to those on the diet who had a seizure but it would make complying with the diet more challenging. However, like me I guess people who are having seizures are hoping that if their seizure activity is controlled then the diet will become easier to manage.

And the other reason my experience of the diet is different from a child’s is because I am also managing the diet of the rest of the family – I am still peeling potatoes, boiling pasta and shopping for food for the family that I will not eat.  (However NB – I only have the deepest respect for any ‘keto’ mum or dad who lovingly makes food for their child and tells them that they cannot eat the same food as their siblings, that they can’t have any sweets and please don’t eat an apple that a friend gives to you at school.  And I also have immense respect for any ‘keto’ child who knows that their parents are doing what’s best for them and so does exactly what their parents’ say even though it must hurt inside sometimes).

As I said, I don’t want to put people off the diet.  I am told that the diet gets easier once you get yourself into a routine and your knowledge of the diet increases. If this diet means that I can go to the fridge and get the eggs, cream and cheese at the same time (plus do a million other things) then the hard work will definitely be worth it.  Although for some people the diet can provoke changes in seizure activity very quickly (as in Meryl Streep’s film First Do No Harm) for me that isn’t the case.  But that doesn’t mean they won’t happen.  Sometimes it takes time.  So I will continue however hard it is and see what happens.  I will let you know what happens.

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A blog similar to this was published by the Epielpsy Soceity on 2nd February 2018 here.