7th September 2018 43. Being Busy – part 2

I have been busy of late.  I now have a job coach (through HertsMindNetwork) for people with disabilities.  He’s helping me reinvent myself as a freelance writer and together we have created a separate website with a portfolio of all my writing work  – sharonrosswrites.com.  He’s also funded me to go on some courses.  One of them was called ‘Writing for pleasure and profit’ – the tutor was amazing and said that to get an article published all you have to do was pitch your idea to an editor in a couple of sentences and then say a couple of sentences about yourself.  I had, for some time been thinking about writing an article about a Jewish approach to mental health but the course really gave me the impetus and confidence to share my ideas.  I wrote an email to the Jewish Chronicle pitching my idea and hey presto a few weeks later ‘How Judaism could do more to acknowledge mental health’ was published. I’ve also gone on a course about how to get a book published through an agent (ie not self-publishing) in the hope that one day I can publish this blog.  The conclusion of the course – writing a book is one task but getting a book published is a quite separate activity that takes a lot of hard work and even if you do get published you probably won’t be able to earn a living from it.

I’ve also found someone who is trying to help me organise myself and my family.  To be honest, it seems like a lost cause.  I now have a laminated meal planner on my kitchen cupboard with pictures of all the meals that we are supposed to eat on each day of the week – but I never ‘see’ the planner.  I know theoretically it is there, but I just am not aware of it when I’m standing in the kitchen trying to work out what we should have for dinner. Nevertheless, the two of us are persevering, in the hope that we find one strategy that will make a difference.

It’s also been the summer holidays and I’ve had three growing children to occupy.  We’ve got through it and that is some sort of achievement. Still with all this and making bespoke meals for myself every day on the ketogenic diet (I celebrate my one year on the diet in a couple of weeks!), and with the up and coming Jewish festival season, I don’t feel busy.  After analyzing what other people say they think about when they feel busy I have concluded that feeling busy involves proactively thinking ahead at the tasks that you need to do to achieve your goals; problem solving when difficulties arise; breaking down large tasks into smaller ones and also getting anxious as to whether you can meet your targets.  But I live I live in a fog. I don’t think these things – I just do exactly what I need to do when I need to do it and I get stuff done.  Although, some people crave for a world with little anxiety, in practice it’s no fun at all. However, despite my internal lack of busy thoughts I do realise that slowly, slowly I am making progress.  My life is somehow moving on.

On the medical front things are also moving forward – although not in the direction that I expected.  I tried the CBD oil for three months (in the end not from the naturopath but from a well-known brand that has a reputation for treating epilepsy). I had not noticed any differences in my cognitive function but I was still hopeful.  ‘What if,’ I thought to myself ‘the CBD oil was changing the electrical activity in my brain but because I am taking the anti-epileptic drugs, which in some way disinhibit my brain functioning, I don’t notice any improvement the oil was making.’  So, I had an EEG and the results – no change in my epileptiform activity after being on the CBD oil.  No change at all.

I spoke to my neurologist after reading the EEG report.  ‘Is there anything else you could do for me?’ I asked.  ‘No’, she replied honestly.  ‘What about medical marijuana?’ I asked.  ‘As you know the UK government has now set up a special panel, where on a case-by-case basis they will consider giving a licence to prescribe this drug.  Do you think that this panel would consider that I have a good case for a licence?’  ‘It is unlikely,’ she said.  ‘There is evidence that medical marijuana can treat ethe epilepsies Lennox-Gastaut syndrome and Dravet syndrome[1] but there is not enough evidence to say it will treat your type of epilepsy.  I think it is unlikely that they will grant you a licence.  However, if you would like I can refer you to the professor at the hospital who specialises in medical marijuana to get a second opinion.’  ‘Ok,’ I said. But I realised that she was probably right in what she was saying.  The panel would probably not grant me a licence – there just isn’t enough evidence that it would work for me at the moment (see endourpain.org for details of the process of granting licenses).

But as you might have realised, I’m not one to give up easily.  My motto has been – if something doesn’t work – try something else.  But I am slowly getting to the very bottom of the list of available alternative treatments.  Nevertheless, it’s still worth continuing to see if I can find a solution to my problems.  So – my next treatment is neurofeedback.  I found out about it on a website about alternative treatments for epilepsy. There is some research evidence to say that it works but the reason why this modern gal knows that I am really hitting the bottom treatments available is because there are very few Facebook groups about neurofeedback, and the ones that are there are not very active.

As I understand it in a neurofeedback session the clinician firstly takes an advanced type of EEG to understand the brain’s electrical activity.  The patient is then set ‘training targets’  – ie areas of my brain that could do with improvement. The treatment will involve watching a computer game or continuous movie stream and, just like Pavlov’s dog, when my brain’s activity is meeting those targets, the patient will start winning the game or will watch the movie continuously.  When the brain activity drifts from these targets the patient will lose the game or the movie will be disrupted.  Over many sessions (which can be 2-3 per week), the theory is, the brain will begin to regulate itself (The centre I am going to also offers biofeedback and non-invasive brain stimulation and I will let you know more about these if I am given these treatments). Does all this sound a bit whacky?  No more whacky than putting a chemical pill in your mouth or getting a stranger to open up your brain and fiddle around with its insides.  No-one really knows how the brain works – and sometimes you just have to do things a little ‘outside the box’ to get the desired result.

So just after the Jewish New Year, I will start a new journey, of I hope (and pray) renewal.  It will keep me busy.  I will let you know what happens.

Happy new year and well over the fast to all those who celebrate.

[1] https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy

Research Has Shown That Epilepsy Can Be Treated With a Low-Carb, High-Fat Diet.  Why Aren’t More Adults Treated This Way?  

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.

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

(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 

40. 26th March 2018 Forgetfulness

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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Flashing light GIF on Epilepsy Facebook group

Last month on some epilepsy Facebook groups I belong to a member maliciously put up a flashing light GIF which triggered a couple of members to have seizures and one to go to hospital. Unfortunately, the police were unable to prosecute because this wasn’t considered malicious communication. UK people please sign this petition to get the law changed.

https://petition.parliament.uk/petitions/212857

39. 4th  March 2018 – Status update: I am in a dilemma 

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

 

37. 8th November 2017 – Ketogenic diet 3

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.

38. 6th January 2018 – Dear Neurologist

I’m still on the ketogenic diet and I will let you know how I am getting on that in due course. In the meantime I thought I would share with you a letter I wrote to a neurologist:

Dear Neurologist

I know that you have trained very hard for a long time to get to your position and I want to thank you for the good work that you have done to improve the quality of lives of so many people.  However, sometimes when I come out of a consultation with you, I do not think that you have truly met me – Sharon Ross – I think that you have met my EEG or my MRI, but you haven’t met Sharon Ross, mother of-three, struggling with life, clutching at straws but still with Hope.  Therefore, I am writing with two suggestions as to how you, and others in your profession, might improve your professional standards and thereby increase your ability to help me and the hundreds of thousands of other people with epilepsy[1].

You obviously have seen how people with epilepsy behave in a hospital ward and in a consultation room and you also are up-to-date with medical science’s current understanding of the brain.  However, I believe that to treat a person you also need to know a person. So my first suggestion is that you get to know the group of patients that you serve. I know that you will say that you don’t have time for this, but I would argue that it is more important to get to know people like me than it is to go to yet another conference or write another research paper.  You could do this in one of two ways.  One way could be to hang out with someone with epilepsy for a day, for a week or on an ad hoc basis. Then you could see for yourself how their children react when they have a seizure or how not having a driving licence has meant that they have had to retrain in a profession – moving away from the dreams they had as a child or how the anti-epileptic medication (AEDs – see point 2 below) really seems to be screwing with their head.

Another way to get to know your patients would be to join some epilepsy Facebook groups, read what people have written, but do not comment (NB As a member of some of these groups I would be quite happy for you to become a member, but some groups may not allow you to join) . In these Facebook groups you will find a range of comments from ‘I applied for benefits, appealed and still didn’t qualify but I can’t work and I really don’t know how I will carry on’ to ‘I’ve had two brain surgeries and I’m still getting seizures’ and ‘I’ve found it difficult to have relationships because when I have a seizure, they get scared and walk away’.  You will also find signs of Hope on these groups – pictures of children holding up signs saying ‘one year seizure free’, ‘two months seizure free’; 100s of responses for requests for prayers as a loved one goes into surgery and lots of ideas and suggestions and messages of support to those that are going through a difficult time from those that have been there and done it.

Getting to know people with epilepsy in these ways might give you a bigger sense of satisfaction when you manage to find a good treatment for them..

And my second suggestion as to how you could improve your professional standards is that you could, like the pharmaceutical industry that serves us, be a little more honest about the side effects of AEDs. The side effects are written on the same type of leaflet as one for aspirin or a cough mixture.  But there are a huge range of side effects listed for AEDs  ranging from ‘dizziness’, ‘fatigue’, ‘acne’, ‘unwanted hair growth’ and ‘behavioural changes’.  They are all real and although the packet might say that only 1 in a 100 are affected; if that 1 in 100 is you it can have a dramatic impact on your quality of life.   In addition it is well known that most, if not all, AEDs can have cognitive side effects such as ‘problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms[2]’.  I suspect that the fact that these side effects aren’t mentioned most packets of AEDs is not because anyone has acted illegally or in an underhand way – it’s just that it’s difficult for a patient to have the self-awareness to say exactly what cognitive side effects they are having and therefore they don’t report it. However we do know that as ‘seizure medicines lower the excitability of nerve cells in the brain, they can also affect normal activity’[3] and even if the precise side effects of each medication aren’t known the general rule that AEDs can cause cognitive side effects.  Therefore, it would be wise of neurologists when discussing medications with patients and their families have a discussion with them about the powerful nature of these drugs so that they can weigh up the risks and benefits (which might be significant) before taking them. Without this discussion some patients could not be aware of the side effects of the drugs that they are taking and their quality of life, measured not in numbers of seizures, but in other more qualitative measures, might reduce when on them.

I thank you for taking the time to read this letter and I wish you much luck in your future endeavours.  If you would like to discuss anything I have raised in my letter, please be in touch.

 

With kind regards

 

Sharon Ross

 

NB I haven’t sent the letter, indeed it was not directed at one particular neurologist – but maybe I should!

[1] Or to be more precise, as you well know, 600,000 people in the UK with epilepsy and 50 million people worldwide.

 

[2] See https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects

[3] Ibid

35. 15th October 2017 Ketogenic blog 2

I did not do too badly at school, but last week I went to the hardest lesson of my life – a half-day course on the ketogenic diet at the National Hospital of Neurology and Neurosurgery in London.

It started quite gently – the nutritionist asked what I, along with my mother, the other patients and their family members (who like my mother had come along because they wanted to assist their loved ones in their new undertaking) knew about the diet.

We were a well-informed lot – we knew it was a low carb/high fat diet; we knew that ketones were a bi-product of the diet that could help to reduce seizure activity and we knew that it was going to be hard work.  Our little group thought we were doing quite well.

And then she hit us with the tables.  A very long list of tables. They listed the amount of carbohydrates in various products.  For example did you know that 8g apple, 13g onions and 250g mushroom each contain 1g carbohydrate? And don’t get me started on bread, rice or pasta (11g sliced white bread has 5g carb etc etc).  These are the tables for which the next three months, at least, we were going to live by. Our little group knew we had a lot to learn.

Based on my weight, height and activity levels the nutritionist had calculated the amount of carbs and fat I must have at each meal or snack – each patient had different targets, but at least we didn’t have to calculated protein. There was to be no wiggle room she stressed – I must have the amounts she had stipulated, no more, no less at every meal and snack.

So I must know these amounts like a mantra – breakfast, lunch and dinner 4g carb, 40g fat at each meal; and 3g carb and 25g fat for three snacks throughout the day.  Everything I eat must be measured in advance like a military exercise.

And then came the crunch time – the calculations.  What should we do if we wanted to eat something not on the list? For example I want to use my favourite pasta sauce (to flavour fish or meat but definitely not pasta). It contains 11g carb per 100 gram.  How much of it can I use for my lunch?  And so, under the guidance of my nutritionist, I learnt to calculate that I can have 36g pasta sauce with my meal to meet my carb requirement. Our dietician/maths teacher was patient with her patients as we learnt our new life skill.

But that’s not all.  We had we had to take into account our fat requirements.  The tomato sauce has 2g fat in it per 100g.  That’s way below my fat target. So I’m going to have to add some double cream to my pasta sauce which could be quite nice and then have a high fat dessert. Of course I still have to limit carbs and also remain kosher – Jewish laws stipulates that I can’t consume milk and meat together in the same meal, so I will have to have tomato and cream sauce with fish which doesn’t sound too bad.  And to top it off, at least at the beginning of the diet, I cannot use meat or cheese or oily fish towards my fat target.

It was indeed a very difficult lesson to take in – and with a foggy brain like mine, this is the hardest challenge of my life.

But the nutritionist was upbeat – it is possible came back the message.  You can do this – other people have.  But it won’t be easy and there are no guarantees that it will improve your cognition or reduce seizures. She was on our side –  I’ll be there to help you all the way, adjusting the plan if necessary, she stressed. But, the other patients, like myself, must have been pretty desperate – fed up with the epilepsy that is destroying the quality of our lives, because that is the only reason you would take this diet on.

I came back from the seminar with my goody bag – two recipe books, one electronic device which will measure my ketones and glucose levels daily via a blood test, lots of tables containing lists of carbs and fats in various products and notes about what to do if you are unwell (keep to the diet and check meds are low carb!).  Plus we also got the number of direct line to the dietician, which is now listed as a favourite on my mobile phone.

My mother and I were exhausted.  We had entered into a world that we didn’t know existed.  We were uncertain whether we would be able to stay the distance.  But we must try. So next week, after spending sometime meticulous planning each meal I will start the diet – just with breakfast at first and then slowly building up over a week to include every meal.  I will let you know what happens.

You can keep updated with Sharon’s blog by joining her Facebook group here or going to https://sharonrossblog.wordpress.com/

A similar blog was also published by the Epilepsy Society here.