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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