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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31. 3rd August 2017 – Being scared

There are three events in my recent past that have really scared me and I wanted to share them with you – the first was a car accident with my youngest daughter who was about six months old at the time; the second was when I came downstairs one morning to find that our TV, amongst others things, was missing and the third was going on the pirate ship at Legoland.

About three years ago, I sat in the passenger seat on a motorway somewhere in the middle of Israel minding my own business when all of a sudden there was a crash towards the back of the car – my baby daughter started crying and my husband and I were flung forward.  Someone had hit us.  All I remember was getting out of the car and getting out of the car to comfort my baby daughter – but realising that the only reason why I was doing that was was because I knew that was that other people would do in such a situation – it wasn’t an instinctual feeling, it wasn’t innate, it was just something that I knew was the right thing to do at the time.  And I felt scared.  I still feel scared thinking about it.  I knew that there was something wrong with me.  I wanted to feel differently, I wanted to feel panicked and stressed and shocked, but instead I felt dead inside – just as I normally do.

Then about two and a half years later I came downstairs one morning with my elder daughter, aged eight standing behind me and she said in a loud shrill voice, looking through the open lounge door, ‘The TV’s been stolen; we’ve been burgled,’ and at first I really didn’t quite understand what she was saying.  I then became aware that the TV wasn’t there. ‘But did that necessarily mean that it had been stolen’, I thought.  ‘How did she come to that conclusion so quickly?  Could there be another possible explanation?’  I couldn’t think of one.  And then I felt scared.  I was standing in front of my daughter as we walked down the stairs – why didn’t I notice that the TV was missing first and why couldn’t I just put two and two together figure out that we had been burgled.  I knew there was something wrong with me and I felt stupid and scared that my very thoughts somehow weren’t doing what they were supposed to be doing but I didn’t know what to do about it.

And the last event was, when I went Legoland in that same year, with my family. We were reaching the end of the day and had found the Pirate’s ship.  ‘That looks fun’, my eldest daughter said and off we went to queue up.  We sat right right right at the back. The ominous bar came down and I was scared – scared in a good way, but still scared.  And as the ship went faster and faster I kept on holding my daughter’s hand tighter and tighter and my screams got louder and louder.  Whereas previously, after the car crash and the burglary, I had detested feeling scared, now I rather enjoyed it.  Feeling scared gave me an exhilaration that I rarely every have.  ‘Let’s go again’, I said to my daughter.

Therefore after analysis of these three situations I conclude that feeling scared is all in the mind. At the same three events other people might have felt extreme panic or anxiety – the only difference being that their brain reacted differently.  Thus feeling scared is just about the brain reacting to certain events, or thoughts, and is actually not about what is taking place before our eyes.

In other news

This week I have had further testing – at 24 hour EEG, where wires were attached to my scalp for a day to measure my brain activity.  I have had this test done many times before so I am not expecting anything the results to show anything new but it is worth taking the test anyway, just in case.

My first appointment at the ketogenic clinic isn’t until late September so in the meantime I have been carrying about research about cannabis oil.  Although in the UK, you cannot be prescribed medical Marijuana, you can buy quite legally, cannabis oil – a substance made out of the hemp part of the cannabis plant and there was been some research that says that this oil can help with seizures.  So if the ketogenic diet doesn’t work I will try that.

Now that I have almost finished working on London City Airport – The first thirty years – I need to find something else constructive to do with my days. My neuropsychologist contacted Headway, the brain injury charity, to see if they could assist me with finding something, but unfortunately because I do not have a diagnosis of a brain injury, Headway does not have funding to see me.  As I said in my last blog, I will not being see my neuropsychologist again. However, I responded to the Epilepsy Society’s request for suggestions about how they could best serve people with epilepsy (train neurologists in the non-seizure impact of epilepsy, carry out research into how cognitive of the condition could be treated) and I also attached a link to my blog. They got back to me and said – would you like to write a blog for us about the ketogenic diet.  I thought that was a good idea, so that is what I am going to do – it should keep me amused for a while.

 

1. July 1st 2016 – epilepsy and me

My eight year old daughter, Gabriella, had choreographed a dance routine with her friend for her school show, ‘Year 3’s got talent’.  They had rehearsed at every available opportunity – at break-time, during playdates and at home by themselves.  They had chosen their own music, decided what they were going to wear and how they were going to do their hair.  I was very proud.  I was more than proud. Gabriella had worked together with a friend in a dedicated way to create something original.  But as I sat there waiting for the show to begin I knew that I wasn’t going to view the dance routine in the same way as the other parents.  Throughout the routine I was asking myself, ‘What aspect of the dance should I be looking at?’, ‘How do I tell whether this part of the dance routine is good or not?’, ‘Is it in time?’, ‘Should I be looking at my daughter’s friend now or should I be looking at my daughter?’  I knew that there was nothing I could do to answer these questions. My mind is a permanent fog.  And then before I knew it – quite literally – the dance had finished.  The mother of Gabriella’s friend had already got up and congratulated her daughter with a cuddle.  I was slow on the uptake and another mother congratulated my daughter before me (not that I blame the other mother – I was slow). ‘Thank G-d I am going to hospital,’ I thought, ‘so that the doctors can understand what is happening with my brain’.  The experience of watching the show was simply too painful for me and I desperately wanted to sort it out.

So here I am at the epilepsy hospital so that they can carry out an intensive assessment.  The theory is that I might be having lots of seizures, where I lose consciousness for a second or two, and I am not even aware of them. This is the hidden face of epilepsy.  As I am learning epilepsy isn’t just about having very obvious clonic tonic seizures which look dreadful, and can cause those having one to injury themselves.  It is also about small millisecond seizures that the person having them might not be aware of.  It is also what happens in between seizures – the epileptiform activity and how that impacts on cognitive function.  This epileptiform activity certainly seems to be impacting on mine – for example I mostly don’t process information (eg my three year old had decided to take off her wet nappy – I also saw that next to the nappy was a pool of water but I didn’t connect the two pieces of information – I didn’t think that the water was urine I thought that it was water), and my memory is very poor (eg if my husband talks about our holiday last year I can remember the fact that we went on holiday but the name of the resort or the details of a particularly day trip that we went on escape me).  But when talking to me no-one would know the difficulties I am facing every minute of the day – indeed this is the hidden face of all mental health illnesses because although I am in immense pain no one (apart from you because I have explained it to you) knows.

However, you will be pleased to know that I am doing 100% better than I was last year when I watched my four year old son perform the Gruffalo show at nursery.  My cognitive function was just as impaired then but I didn’t know that this was the problem.  ‘Why does this show feel boring?’ I asked myself.  ‘I just don’t want to be here’ ‘All the other mums seem to really enjoy watching their child in the show – why can’t I?’ ‘Why am I always like this?’ ‘Oh I think I will just go home and kill myself’.

So starting on Monday, I am going to be in a hospital room for five days and I will not be allowed to come out of it.  I will be wearing sensors attached to my head to measure brain activity, using an EEG, and I will be videoed from all angles.  The idea is that doctors will be able to spot on the video when I am having seizures and measure my brain activity at that point.  And, please G-d, on the basis of those results they will be able to make recommendations as to how to treat my epilepsy.

I will try and write a blog every day – I will be seriously bored (but of course the news is always a drama to watch these days, what with Brexit, the British elections, general political turmoil and of course there is always Wimbledon).  But just to let you know that I might not because I might forget to write.

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