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46. 16th December 2018 – Christmas Update

My children go to Jewish schools and don’t know the words of any Christmas carols but even they love looking at the beautiful Christmas tree that lights up the dark night outside our local church and comparing the different decorations that adorn local homes.  We live in such a politically correct world that we say to each other ‘season’s greetings’ but even though I’m not celebrating Christmas, I can’t get away from it. So since it is this time of year I thought it was a bit silly to give you a ‘seasonal’ update, but instead I’ll give you a Christmas one – here it is:-

I have been making progress with the neurofeedback.  I have had over 15 sessions and Ms Brain had also given me what I call my ‘rave kit’ to wear once a day.  The ‘rave kit’ consists special glasses which, when linked up to a small black device, have flashing lights and a pair of headphones which when similarly linked make sounds like a quiet pneumatic drill.  The idea of my personal sound and light show is that the frequencies emitted would have an impact on the neural activity of my brain and would give my brain an extra boost between neurofeedback sessions.  I know what you’re thinking.  ‘Sharon, you’ve got epilepsy – how can you wear glasses that show flashing lights?  Surely you will have a seizure.’ Well no – because only 5% of people that have epilepsy have photosensitive epilepsy[1] and in any case the glasses had been designed with people with epilepsy in mind.   But, Ms Brain and the manufacturer’s instructions said that all people with epilepsy should be cautious about wearing the glasses.  So I took the necessary precautions.  The first few times I used them I made sure that there was someone in the house with me – just in case.  But I didn’t have a seizure.

The brain stimulation, neurofeedback and glasses are making some difference, but as with the ketogenic diet it is not the radical shift that I crave. Now in the morning when I wake up I do think ‘What am I doing today?’ (This is the planning element of a person’s thinking which most people take for granted but is actually an important cognitive function).  The other day an email from my youngest daughter’s school suggested that she might leave late that day and I actually thought ‘Oh dear, this might make me late for picking up my other children’ (I have learnt the hard way that this part of cognition is called processing – linking one piece of information to other information).  This seemed to be a new way of thinking about things for me. However, I was unable to perform the problem-solving element of this task ie now that I have this information, what should I do with it.  Instead I just panicked and didn’t know what to do if I was late – but it was a start, it was a shift in thinking.

However, I am very aware that I have this fog in my head – I can almost feel it.  I still walk around in the kitchen, not really knowing what I am supposed to be doing and although I ‘organised’ a family Chanukah party at my house I didn’t think about the fact that we might need some food for the festivities until about an hour before the party began.

So, I was pleased with my progress, but I was becoming a bit despondent and wanted more.  And it just so happened that I had an appointment with a new neurologist to give me a second opinion about whether I could take a prescribed version of cbd oil.  But directly before the appointment I was asked to participate in a study to improve scientists understanding about epilepsy using trans magnetic stimulation.  I was very interested in this and was happy to participate but I knew that it was not going to directly help me.  It would take at least another two years to complete the study but that I realise is not their biggest challenge. The biggest challenge researchers face, especially if they find something that is perceived as being new or controversial, is getting the results to seep into the psyche of neurologists, doctors and more importantly politicians.  Even though, as I have said before, there is a huge amount of research which evidences that the ketogenic diet can help adults with epilepsy- it simply isn’t at the forefront of most neurologists minds when they are treating it. There is research that suggests that neurofeedback can treat people with epilepsy but it is considered radical and although there is plenty of evidence that cbd oil can improve the lives of those with certain types of epilepsy, in the UK at least, it is still almost impossible to get it prescribed.  So, I took part in the study in the hope that future generations might somehow benefit from it but I knew the results wouldn’t help me personally.

I went to my appointment with CBD neurologist expecting very little from it.  I knew that I was unlikely to be prescribed cbd oil. But it’s worth turning up to these appointments, just in case.  He told me that one of the reasons that practically no one had been prescribed it since it was licensed was because it costs £2000 per month and that the government has yet to give guidance on who should get it – that will come next October.  He is going to put me on a list of 100 people who had expressed an interested in being prescribed it but he also told me what I already knew – there wasn’t much evidence that it would treat my type of epilepsy.

Since I was there, I asked him to review my case.  It was unusual, he said to have my type of epilepsy with the cognitive difficulties that I had.  He suggested a change in antiepileptic – something a little outside of the box – a new type of drug that is not licensed for my type of epilepsy, but has less side effects.  I might as well give it a go.   However, it wasn’t in his gift to prescribe it to me because as a top ranking neurologist at a leading hospital specialising in brain disorders, he didn’t have access to the money to pay for that.  Only my GP could do that because they hold the purse strings. So that’s where I go next – to my GP, to ask for funding for different meds.  I’m not discounting the importance of the neurofeedback.  I don’t believe that only one approach will work for me but I think that there is a barrier from preventing me from making any further improvements with it and that barrier could be the drugs. Although a bit despondent and fed up I must Keep Calm and Carry On and I’ll fill you in on what happens next in the (secular) New Year.

——

There is a connections between the messages of Christmas and Chanukah – both are stories of how a small miracle (the birth of a child\  oil which was meant to last one day lasting eight days) can have a huge impact on the world (the growth of monotheism\ the continuation of the Jewish people).   I pray that the small miracle of a different drug has a huge impact on my life.  Wishing all those that are reading a happy Christmas break (apart from those in Israel who don’t get a break) and many small miracles in your life which might lead onto bigger things.

[1] https://www.epilepsysociety.org.uk/photosensitive-epilepsy?gclid=EAIaIQobChMI1IP646CS3wIVarXtCh3zWA5DEAAYASAAEgKM-fD_BwE#.XAzId3T7RPY

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45. 12th October 2018 – The Diary of a Neurofeedback girl (3)

Just to update you, but I don’t think I’ll update you every week because there won’t be that much to tell – or will there??

I had two sessions this week. On Tuesday I did the aeroplane game and magnetic stimulation again.  I’m getting quite good at the game it apparently.  The idea is that if I fly the aeroplane correctly through the hoop my brain gets a dose of dopamine and this encourages me to do it again.  If I win it illustrates that my powers of concentration, processing and problem solving are working well but if I do that too often Ms Brain makes the test harder – I’m told it’s not good to win all the time because brain needs negative as well as positive reinforcement.  But, nevertheless I try to win! The magnetic stimulation was slightly different today because, as well as putting the magnets on my head, she put them on my stomach to provoke activity in the gut.  According to Ms Brain, who clearly knows much more about this than I do, gut stimulation can also help although I’m not sure how – but it felt lovely.

Afterwards Ms Brain gave me electrical stimulation.  ‘You’ve been doing quite well,’ she said, ‘but I want you to do better’.  After the last session I felt warmth in my brain, as I mentioned in my last blog, but that weekend I also had a vivid dream.  Now it being a dream, and me being me I can’t remember what it was about but I do know that it had all the same qualities as those that I had when I was on the anti-depressant called venlafaxine, many moons ago.  It felt that I was alive in the dream, it felt intense and the real-life characters were caricatures of themselves – believable but somehow an extreme version of themselves.  Ms Brain thought having the vivid dream was a good sign of my brain rewiring but since it had only happened once and that I hadn’t noticed any other changes in my day-to-day thought patterns we should try and increase the power of the tools that she was using to help me.  It would take a few sessions, she said, to work out what method was going to help me best.  So, she performed electrical stimulation as well as magnetic stimulation. ‘But we have to go slowly’ she said as she had said last time ‘because you have epilepsy and your brain is sensitive.  You will have to start at a level much lower that the therapeutic dose’.

I’m used to doctors being cautious with me.  When I gave birth to my son, it all happened very quickly.  One minute I was downstairs on the ward and 11 minutes later I was upstairs in the delivery suite giving birth.  However, all I remember were the panicked shouts of – ‘Come quick she’s got epilepsy’ and all of a sudden there were 11 people[1] in the room for what was a pretty straight forward natural birth without pain relief (the panic was caused by the fact that the stress of delivery can, for a very small minority of women with epilepsy, bring on seizures[2]). There was also the time when a psychiatrist wanted to prescribe me an anti-depressant because absolutely nothing was working and I was feeling suicidal every day.  However, he said, ‘I can prescribe you this medication. But it is a risk.  It can bring on seizures.  If you decide to take the medication you should have somebody with you at all times over the next few days.’  I took the risk because I was desperate, but it worked.  I calmed down and I didn’t seize. (however, previously when another psychiatrist prescribed me with an anti-depressant, without giving any caveats, I was not impressed when taking it caused me to have a clonic-tonic seizure).

So, Ms Brain applied electrical wires to my head and these gave me a small tingling feeling.  On top of the wires she put on the magnetic stimulant boxes that she gave me last time and she put the boxes them on my gut as well. I do trust that she know what she is doing and I just have to continue with the process and see what happens next.

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[1] Obviously I can’t remember how many people but it was a lot people.

[2] See https://www.epilepsysociety.org.uk/giving-birth-and-epilepsy#.W8BmFmhKhPY   (accessed 12/10/2018)

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44. 3rd October 2018 The Diary of a Neurofeedback Girl (2)

‘It has been a few weeks since our initial appointment,’ so what I want to do first is carry out a shorter Q EEG test – this time only with your eyes shut – to see if your brain activity has changed since we first met’ said Ms Brain, when we met for the second time today.  And when she analysed the results she said something that I was quite amazed at – ‘The results are interesting – they show more activity than your previous result.  I’m not saying that your brain isn’t screwed up – it’s still screwed up, but just that you had more activity today.  Are your tired or stressed?’ ‘It is quite unbelievable,’ I thought.  ‘She really does seem to know what is happening in my brain.’  I’m was a bit scared. I was definitely doing more thinking in that test than the absolutely no thoughts that I had in the previous test. I wasn’t thinking loads but I was doing more thinking.  So, I said to her, ‘In the last test I was more tired than I am today and also I am more stressed today I was last time so I guess these things could have impacted on my brain activity’.

‘What we are going to do first is magnetic stimulation,’ said Ms Brain.  ‘It’s very gentle.  I have to go very slowly with someone with epilepsy because we don’t want to provoke seizures.’ And then she put four little black boxes on my head, which reminded me of tefillin – the black boxes which contain the words of the most sacred of all Jewish prayers – the shema – which Jewish men wear in the morning to pray (as far as I know, although I don’t know for sure, the magnetic boxes did not contain the word of God but I’m convinced that She is involved in the process somehow).

And then I felt it – a sensation I had felt before.  A long long time ago, before I was diagnosed with epilepsy, I took part in a weekly psychodrama group.  Much of it was role playing out different parts of my internal and external life (both real and make believe) and I had an enormous amount of respect for my therapist who was a Wise One. After a year or so (OK I’ve made that bit up – I don’t know how long I had been in the group exactly because that’s just not the sort of thing that I know, but it was a relatively large amount of time) of seeing her she said to me to me ‘Sharon there is something wrong with your brain.  Have you ever been hit on the head?’  ‘As it happens, yes I have’, I said.  ‘When I was eight or so I was in a hotel bathroom and slipped on the floor and hit my head.  My parents were in the restaurant downstairs (this was completely acceptable and even the norm in those days) and my nine-year-old sister was looking after me and my brother. She called my parents and they came back from their meal but I didn’t go to the doctor as the bleeding stopped and I was fine. However, now there is a small patch on my head where hair doesn’t grow.’  ‘Do you know if you were unconscious at any point?’ the Wise One asked. ‘Probably not.  I guess theoretically I could have been for a moment or two but if I was no one knew about it.’ ‘I suggest you go and see a cranial sacral therapist,’ she said. ‘Maybe they will be able to help you.’

Thinking about it now, it was a bit odd that I was not disturbed at the thought that the Wise One thought that there was something wrong with my brain but nevertheless I faithfully went off and made an appointment with a cranial sacral (CS) therapist.  For those of you that don’t know this CS therapy involves evoking the CS system within the body which according to its proponents enables the body to find its own natural ability to heal itself.  It was a joyous and beautiful experience. As I lied down on a therapy bed my therapist (one of those people who have been there, bought the tea-shirt and grown from it) put her hands on my head and sort of massaged it. Sort of.  Generally, I don’t like massages.  They don’t do anything for me.  But this was very  very gentle.  And it was like the first time in my life I felt relief.  I felt free.  I was alive.  OK, the changes weren’t permanent but it was definitely worth paying for the experience.   And that was what the electrical stimulation felt like – it wasn’t as intense as the CS – it wasn’t as beautiful but there was some relief and that made me feel like there might possibly, if I prayed hard enough and God willed it so, be an end in sight (or even better – a new beginning).

But that wasn’t the end of the session.  After that I played the strangest ‘game’ I have ever played. With my wired-up cap on, I became an aeroplane.  That is, I became an aeroplane flying on a computer game and my task was to fly through the green hoops.  Except I didn’t have a console. And if I blinked or moved my head to somehow physically move the plane I was told that I should try not to do that as it caused difficulties for the computer programme.  No, the task was to simply think my way through the green hoops.  ‘Up, up’ I thought. ‘Higher, oh dear, oops. Concentrate’ It is difficult to say how I was flying the aeroplane but I knew this – I was thinking my way through the task.  The programme was responding to me.  It was not made up hocus pocus. I’ve got no idea how I scored, but Ms Brain told me that I was doing quite well.  Let’s hope I keep on winning.

 

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43. 12th September 2018 – Diary of a Neurofeedback girl – 1

The Diary of a Neurofeedback Girl (1)

 

12th September 2018

The festivities for the Jewish New Year, are over now and I walked into my first neurofeedback session today hopeful that it truly would be New Year, new me.  I had already spoken to my clinician, – I call her Ms Brain, in-depth over the phone, about my illness and I had sent her some medical reports and even some of these blogs.

I was quite taken aback when we met, because she clearly had read them.  Sometimes going to a private doctor seems like going to a lawyer – they don’t do anything above and beyond their required hours.  Ms Brain however is a different kind of beast.  She clearly finds her field very exciting and really wants to help her patients. I was shocked to find that there was no need for her to take a detailed history because she already had all the information she needed – this was a complete relief because all in all I spoken for roughly 45,678 hours about my life to roughly 234 people over the years – thus far to no avail – and I’m kind of getting bored of the sound of my own voice.

In this initial appointment I had what is called a Q E E G.  Ms Brain explained to me that like a regular EEG (an electroencephalogram) a Q E E G measures brain activity but afterwards the data is analysed in a different way.  I am used to having EEGs performed on me.  I’ve had many of them over the years  – one-hour EEGs, 24-hour EEGs  three-day EEGs and the gold standard five day Video EEG which I had at the epilepsy hospital when I started this blog.  They all start the same way –  a highly qualified person spends about an hour of their time fumbling through my hair to glue on 19 electrodes on my scalp in highly specific places to measure brain activity.

However, the Q E E G business is a lot quicker and less messy.  Ms Brain roughly measured the size of my head (mine is medium apparently but small and large were also available) and then got a cap with prepositioned electrodes on it and plonked it (nicely) onto my head.  Job done. Apparently, it is not quite as accurate as a regular EEG but if it was good enough for her, then it was good enough for me. Then I got to do the weird tests.  What is a weird test? The first involved staring at a large blue spot, on a screen, for eight minutes. Have you ever stared at a spot for eight minutes before?  I haven’t but I imagine that if another person had done this exercise they would have lots of thoughts whirling round their head and every now and then they would say to themselves – ‘Focus on the spot.  You need to focus.  Stop thinking about other things.’  But for me it was just starring at a spot which provoked no other thoughts whatsoever.  The next task was to close my eyes for eight minutes but not go to sleep. At the end of the tasks Ms Brain asked us (mum was with me of course – she finds our regular outings to all sorts of different medics very interesting) to take a tea break for ten minutes whilst she analysed the data (bear in mind that it would take at least a week to get a report back from a traditional EEG).

When we came back Ms Brain gave us the results. This is what she said (more or less) ‘What this fancy computer package does is compare the results obtained from your test to average results, taking your age into account.  The results tell me that your brain is completely screwed up.  You Sharon, are living in a daze.  In a normal person there would be a significant difference in the results between eyes open results and the eyes closed.  In your results, I see no difference. Here are some neuroimages of the electrical activity in your brain.  If the area is white, it means that your brain is behaving the way it should behave.  If it’s green, it’s sort of behaving the way it should behave – if it’s yellow – it’s not great but it could be worse.  But yours, yours is red.  Red is not good.  Some areas of your brain are more than four standard deviations from the norm. You don’t want to have a red brain.  People can’t function properly with a red brain.

‘But the good news is,’ she went on, ‘I am quite confident that I will be able to help you. I definitely know that I will be able to make some changes because your brain is so screwed up – I don’t know how much change I will be able to make, but I should be able to make some change. I’ll need to see you quite regularly – if possible twice a week and I might give some homework. I have lots of different techniques at most disposal – I will start with magnetic stimulation and neurofeedback and we will see what happens’.

‘Great,’ I thought.  ‘It is oddly comforting that my difficulties can no longer be said to be a figment of my imagination but I can see them in a picture. I’ve seen a million doctors and nothing has given me the change that I so desperately desire (even though the diet has helped with mood and energy my cognition still stinks).  But she is confident that she can help.  Onwards and upwards.  Let’s see what happens next.’

 

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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

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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 

Posted on by sharonrossblog

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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Posted on by sharonrossblog

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

Posted on by sharonrossblog

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.

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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