49. The present spectrum

I’m on the spectrum. The present spectrum. I haven’t seen anyone about it but I have self-diagnosed myself as a three on the ten-point scale. ‘What’s this about, Sharon?’, you ask yourself. Well it goes like this: Everyone is on the present spectrum – if you score a one then when somebody asks you ‘What do you want for your birthday?’ you say ‘I don’t know. Nothing really, I’m fine’. Your loved one/ friend knew that this is what you were going to say and buys you either a gift voucher (which stays in a drawer until it expires/ you spend on someone else) or flowers (which die through malnutrition) or a pair of socks/ smellies for the bath (either of which you give to someone else). However, if you are a ten on the spectrum then when someone asks you the what do you want for your birthday question you get out your iPad look down your ‘present list’ and reel off a couple of options and offer to send hyperlinks where said person can buy the gift.

As I said I have self-diagnosed myself as a three on the spectrum – I don’t resist presents but I don’t have a ready-made list. I have to think very hard about what I extra item would give me joy, when asked. Also, although I realise that buying birthday gifts is a long-standing tradition – it’s not something I expect that those nearest and dearest have to get me – I just figure it’s not a prerequisite of them showing that they care. Part of my relationship with gift giving is because I have memory and processing problems and even if I saw the ideal thing that I wanted in an advert I wouldn’t remember it anyway (not a bad thing) but I also realise that part of the reason why I am rated three is because I have a a natural tendency not to want so many things. It’s innate. And I believe that other people’s relationships with gift-receiving is also innate as well.

Now I could get all grouchy about this. I mean, as I explained in my last blog regarding gift-giving at children’s birthday parties, there is an assumption that if you give a present to someone, they will spend a similar amount of money on you in return. The problem is in the adulting world is that even if you say that you only want to spend a certain amount of money on a gift, in truth, the way it works out is that the value that you get from your gifts depends upon where your fall on the present spectrum. Thus, an adult who is a ten on the scale is likely to request something of a higher value than an adult lower down on the scale – who indeed might not request something at all. So, in the end what happens is that, financially at least, those lower down the scale over a year end up making a net loss from this presenting game.

However, I have decided not to get grouchy about all of this. As a great book (the Torah) says, ‘Who is wise – he who learns from everyone’. And although I’m not wise, for the sake of personal growth, it would be useful for me to learn from those further up the spectrum. I mean they have got a point – every now and then it is nice to treat yourself. My inclination is not to, but perhaps that’s why it’s especially important for me, and others like me, to have a birthday (apart from the obvious reason of being reminded of my age) – so I can go outside of my comfort zone and just be spoiled a little bit. I don’t think I’ll ever reach a ten – I’m a three because this is my innate level – but I could try to shift to a four. It would be hard but I could try.

Also, somewhere in this great birthday giving hullabaloo I seem to have lost the plot and forgotten why we give presents. I have 21 members of my immediate family (including nephews/ niece, in-laws etc) and the present giving thing now just seems like an administrative process of depositing money into other people’s bank accounts after they/ their parents have sent in their requests. As someone with memory problems, this often seems overwhelming – but even if I didn’t have these difficulties I think somewhere in this administration process and the fact that it is assumed that the gifts will be given I have forgotten the meaning of gift giving and that is to be thankful for that other person in your life and to want to make them feel special, for one particular day.

Thus, whilst I am happy to disclose that I am a three on the present spectrum I do think that for the sake of personal growth I could try and move myself up the scale just one notch and, in around all the confusion that I find the present giving spectacle, I should try and refocus and remind myself why we do it – and that is to show the special people that we love that we care.

Sharonrosswrites.com

Ps – Happy birthday Shona and Liz!!!

48. Children’s Birthday parties – the Great Money Exchange Project

I would like to tell you about a bit of a scandal that I am involved with; it’s something I have been part of for a very long time; lots of people, including my family and friends are also implicated; it’s not illegal but on the other hand it’s not economically sound – I call it the Great Money Exchange Project (GMEP). I would appreciate any feedback as to how I can get myself out of it.

 About the project

The background to the Project is this: Like many others, each of my three primary school-aged children, get invited to school-friends’ birthday parties.  I estimate, that over the course of a year, because they don’t go to all the parties they are invited to, between them they attend 30 parties. I’m quite tight and I say this publicly without embarrassment – I spend, on average, £5 a present – although I have noticed that as the kids get older £10 is the going rate. I’m all for getting things on offers or in a sale, or even – shock horror – giving another child a gift that my child has received but doesn’t want – but for the sake of argument we can say that’s 30 parties, £5 each present = £150 spent on birthday presents per year.

 I can justify it. Sort of…….

Now, in my very, very cynical mind I could justify this spending because for the reasonable price of £5 per party my kids get to have fun and see their friends and in return their friends will attend their birthday parties and bring them gifts.

And before some parents scream as they read this ‘You are a mean-spirited person – let them enjoy these special moments in their young lives’. I don’t think I am mean-spirited – I want my children to enjoy their birthdays – it’s a rite of passage and they look forward to it all year round. I also love the fact that it gives them an opportunity to socialise with their friends in a non-school environment and that sometimes my children go to a lot of effort to make their friends a card or choose a gift.

 But what is all this gift-giving teaching my kids….

However, my main problem is not with the parties themselves but with what all this gift-giving and receiving is teaching my children. Fundamentally, it seems to be saying two things. Firstly, it says to them that you, and all your friends, should expect to receive more things than you actually need. Because they definitely don’t need all these gifts. But secondly, it teaches them that they should sustain a throw-away economy by increasing a demand for presents that, let’s face it, aren’t built to last or retain a child’s attention for a long time. They might learn about recycling and reusing at school but what they learn in their real lives is the total opposite.

 Can a workaround be found?

It is true that some parents do understand the problems of GMEP and therefore try to create workarounds such as putting some presents aside so they don’t get them all at once. But even taking this into account it doesn’t change the fact that a child who hosts a ‘whole class’ party could receive 20+ presents (on top of the ones that they receive from their family) of which a lot of them they don’t need or even want. And that is setting them up for a life of high expectations of needless ‘stuff’. As I said this educational experience costs me, £150 per year and although undoubtedly my kids want the presents back in exchange, I’m not so keen.

At my younger daughter’s birthday party last year I did try to remove myself from the Project but to no avail. On the invite I said that instead of giving my daughter a present, parents could make a donation to the school’s Parent Teacher’s Association. However, my appeal didn’t seem to make any difference – my daughter still got her 20+ presents. Why do I think my appeal failed so miserably? Well partly because, if other parents are anything like me, they did not read the small print on the invite and also, they probably had a stock of presents bought on sale or on offer and just wanted to get rid of them.

Can you find a solution to this problem?

Thus, I haven’t thought of a way to leave the Project. At the end of the day the GMEP is endemic in the culture that I’m part of. I don’t want to say to my children you can’t have a birthday party or you can’t keep any of these beautifully wrapped up presents because of my beliefs. However, if anyone reading this feels that they have found a solution to the Project, please let me know.

sharonrosswrites.com

 

47. 13th March 2019 – Time

Time marches on whether I want it to or not.  I went to my GP and asked for the new anti-epileptic drugs (AEDs) that the NHS neurologist had prescribed.  The GP typed the name of the AED into his computer and big letters came up on the screen ‘DOUBLE RED’.  ‘Computer says no’, the GP said.  ‘What does that mean?’ I asked.  ‘Well, these drugs are expensive and, if you want them prescribed to you on the NHS, a Kafka-like panel needs to decide, based on the evidence that your neurologist supplies to them, whether the NHS will pay for it. This panel will probably know nothing about epilepsy but we just have to let them get on with it because that’s their job.  It’s also worth noting that if you lived in a different county the NHS might prescribe this medication to you without going to a panel because different areas like to think differently about these sorts of things just to confuse everyone and to make patients feel that the world is unfair’ (OK so those weren’t the GPs exact words, but that was the gist of it). ‘Going to a panel sounds like six-month process,’ I thought to myself.  ‘But I could still get the medication on a private prescription.’

So, I went back to my NHS neurologist and said ‘Can I get a private prescription for this AED that-might-help-me-but-might-not-and-nobody-really-knows-but-it’s-worth-giving-it-a-go.  And she said, ‘OK, I’ll prescribe it to you on a private prescription.’ I was a bit flabbergasted as I thought my NHS neurologist would have to write a letter to a private doctor so that private doctor could write out a private prescription. ‘I can write it,’ she said. I don’t want to make anything more difficult for you’. (these were her actual real words and even I remember them and I really did feel like giving her a big hug because sometimes it seems like some doctors do actually want to make things more difficult for me).  ‘However, I have to let you know that even if the new drug does work for you it doesn’t mean that the panel will decide that the NHS will pay for them.  The panel makes their decision based on the evidence provided before you start taking the meds.’

At this point I must thank my parents who have decided that it is worth spending my inheritance on me now by paying for these drugs and all the other NHS-funded treatments I have had over the years, whilst they are alive to potentially see the benefits (It goes without saying that this is not the only thing that I should thank them for and there are millions of others).  The amount of money that my parents have spent on these treatments is not enough to warrant an appeal via a Go Fund Me or the like but, on the other hand, the costs are probably prohibitive to many people with epilepsy (it also is worth noting at this point that homeless people are eight times more likely than the rest of the population to have epilepsy[1]). Thus, with my parents financial (and other) support I could not have got to where I am today. The new drug costs £175.01 a month on private prescription compared to £43.75 for the one I am currently on.

 

I made some precautions before starting the new drug – I bought a fixed landline as we didn’t have one.  Changing meds is a known seizure risk.  I was concerned that if my mobile was lost (this happens roughly 82 times a day) or the battery was dead (seven times a day) and if my husband wasn’t with me and I had a seizure my children couldn’t call on an adult for help.   Changing anti-epileptics is complicated.   Under the advice of a neurologist you increase the medication slowly – every two weeks changing the dosage.  So, I drew up a chart with how much medication I should take each day.  The last time I had changed AEDs, I got confused by this whole process and had a clonic tonic seizure.

So that’s where I am now – slowly increasing the new medication but still taking the old one.  I am praying that I will eventually be able to come off the old one which may have more cognitive side effects.  Do I feel any different now that I am on the new meds?  No, but others have commented that I seem brighter and stronger.  Is that because of the meds?  I really don’t know.  It could be because by dealing with my situation I have become stronger and more resilient but it could be because of the meds or it could be a combination of both.

In other developments, my dietician has suggested that I change from the ketogenic diet to something called the Low Glycaemic Index Treatment (LGIT)[2].  It is similar to the ketogenic diet but less restrictive and for some people with epilepsy it produces the same results.  However, I discovered a long time ago that my brain is actually a human experiment and as such I should not change two variables at once (ie my diet and the meds) so I will consider changing onto the new diet after the changes to my meds are complete.

I have also been assessed by adult disability services for support around the home.  My social worker thinks that I have a strong case to have a regular support to manage my home.  Now you might be wondering why I haven’t been assessed for this support before since I have been banging on about all my problems for two and a half years now.  But what I have learnt (the hard way) is that often medics live in silos and they don’t know what services and benefits patients need or are entitled to.  So, I found out about adult disability services almost by accident and although some people have a theory that help doesn’t arrive until you are ready to receive it, I think that is a poor cop-out for people not being offered help when they actually need it most.

Thus, my journey continues, my eldest daughter will be starting secondary school this year and will have also have her batmitzvah (confirmation).  I desperately want to remember everything about these events.  So, I battle on trying to find a solution to my problems.  For some reason, even though I have tried, I can’t give up.  I’ll let you know what happens.

 

Sharonrosswrites.com

[1] https://www.epilepsysociety.org.uk/news/new-initiative-support-homeless-people-epilepsy-28-07-2016#.XIl1HSj7RPY

[2] https://charliefoundation.org/low-glycemic-index-treatment/

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)

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 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 problems 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 the medical reports and some of my blogs.  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 relieved 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 945,678 hours (roughly) about my life to 1234 people (roughly) over the years and thus far to no avail.

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 a patients hair to glue on 19 electrodes on their 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 (ie large, medium, small) 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 imagine with other people they would have lots of thoughts whirling round their head during this task 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 she 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 – 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 in a picture. I know that my brain is screwed up.  I can see that in my actions every day. 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

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.

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

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

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

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

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

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