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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4 thoughts on “43. 12th September 2018 – Diary of a Neurofeedback girl – 1

  1. The dr you see sounds wonderful. I have never in my whole 42 years had a dr or neurologist care nor try to even figure out what why and how of any problems with my epilepsy anxiety panic attacks list goes on they just see me once a year for 4 min and do nothing. Absolutely pointless if you ask me.
    So its enlightening to hear there is at least one good dr out there. Congratulations in finding one. Wish you nothing but the best .

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    1. Thanks for your post. I’m sorry if I didn’t make this clear but I went to see a neurofeedback specialist – she’s not a doctor but a v qualified specialist in her field who really cares. I agree that neurologists don’t have a person centred approach. I actually wrote a blog which was a letter to ‘a neurologist’ about how they could improve their work. It’s here if you would like to read https://wp.me/p7GB8G-5E

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