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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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38. 6th January 2018 – Dear Neurologist

I’m still on the ketogenic diet and I will let you know how I am getting on that in due course. In the meantime I thought I would share with you a letter I wrote to a neurologist:

Dear Neurologist

I know that you have trained very hard for a long time to get to your position and I want to thank you for the good work that you have done to improve the quality of lives of so many people.  However, sometimes when I come out of a consultation with you, I do not think that you have truly met me – Sharon Ross – I think that you have met my EEG or my MRI, but you haven’t met Sharon Ross, mother of-three, struggling with life, clutching at straws but still with Hope.  Therefore, I am writing with two suggestions as to how you, and others in your profession, might improve your professional standards and thereby increase your ability to help me and the hundreds of thousands of other people with epilepsy[1].

You obviously have seen how people with epilepsy behave in a hospital ward and in a consultation room and you also are up-to-date with medical science’s current understanding of the brain.  However, I believe that to treat a person you also need to know a person. So my first suggestion is that you get to know the group of patients that you serve. I know that you will say that you don’t have time for this, but I would argue that it is more important to get to know people like me than it is to go to yet another conference or write another research paper.  You could do this in one of two ways.  One way could be to hang out with someone with epilepsy for a day, for a week or on an ad hoc basis. Then you could see for yourself how their children react when they have a seizure or how not having a driving licence has meant that they have had to retrain in a profession – moving away from the dreams they had as a child or how the anti-epileptic medication (AEDs – see point 2 below) really seems to be screwing with their head.

Another way to get to know your patients would be to join some epilepsy Facebook groups, read what people have written, but do not comment (NB As a member of some of these groups I would be quite happy for you to become a member, but some groups may not allow you to join) . In these Facebook groups you will find a range of comments from ‘I applied for benefits, appealed and still didn’t qualify but I can’t work and I really don’t know how I will carry on’ to ‘I’ve had two brain surgeries and I’m still getting seizures’ and ‘I’ve found it difficult to have relationships because when I have a seizure, they get scared and walk away’.  You will also find signs of Hope on these groups – pictures of children holding up signs saying ‘one year seizure free’, ‘two months seizure free’; 100s of responses for requests for prayers as a loved one goes into surgery and lots of ideas and suggestions and messages of support to those that are going through a difficult time from those that have been there and done it.

Getting to know people with epilepsy in these ways might give you a bigger sense of satisfaction when you manage to find a good treatment for them..

And my second suggestion as to how you could improve your professional standards is that you could, like the pharmaceutical industry that serves us, be a little more honest about the side effects of AEDs. The side effects are written on the same type of leaflet as one for aspirin or a cough mixture.  But there are a huge range of side effects listed for AEDs  ranging from ‘dizziness’, ‘fatigue’, ‘acne’, ‘unwanted hair growth’ and ‘behavioural changes’.  They are all real and although the packet might say that only 1 in a 100 are affected; if that 1 in 100 is you it can have a dramatic impact on your quality of life.   In addition it is well known that most, if not all, AEDs can have cognitive side effects such as ‘problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms[2]’.  I suspect that the fact that these side effects aren’t mentioned most packets of AEDs is not because anyone has acted illegally or in an underhand way – it’s just that it’s difficult for a patient to have the self-awareness to say exactly what cognitive side effects they are having and therefore they don’t report it. However we do know that as ‘seizure medicines lower the excitability of nerve cells in the brain, they can also affect normal activity’[3] and even if the precise side effects of each medication aren’t known the general rule that AEDs can cause cognitive side effects.  Therefore, it would be wise of neurologists when discussing medications with patients and their families have a discussion with them about the powerful nature of these drugs so that they can weigh up the risks and benefits (which might be significant) before taking them. Without this discussion some patients could not be aware of the side effects of the drugs that they are taking and their quality of life, measured not in numbers of seizures, but in other more qualitative measures, might reduce when on them.

I thank you for taking the time to read this letter and I wish you much luck in your future endeavours.  If you would like to discuss anything I have raised in my letter, please be in touch.

 

With kind regards

 

Sharon Ross

 

NB I haven’t sent the letter, indeed it was not directed at one particular neurologist – but maybe I should!

[1] Or to be more precise, as you well know, 600,000 people in the UK with epilepsy and 50 million people worldwide.

 

[2] See https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects

[3] Ibid

Posted on by sharonrossblog

33. 14th September 2017 – The New Year

Unlike secular self-improvement guides on self- improvement, which focus on learning new skills, increasing monetary wealth and setting targets the Jewish way focuses on middot – personal characteristics.  This way says that to improve ourselves firstly we must become aware of who we are, our strengths and our weaknesses.  We all have good traits such as being generous or hospitable.  But to improve we must focus on our weaknesses. If your weakness is that you are impatient, it would take a lot of energy and effort to try to be even a tiny weeny bit less impatient, but that’s what you should do, if your weakness was that you were always late then getting to one place on time might seem like an enormous obstacle but you should try it.  You won’t earn more money for making this sort of change but in Jewish terms you have achieved something absolutely huge and it is even said that perfecting just one of these character traits is the reason for the existence of humankind[1].

In Jewish tradition there is no better time to focus on middot than Rosh Hashana – the Jewish New Year (which falls next Thursday and Friday).  Thus, in Judaism, a new year’s resolution – to work on a particular middah (the singular of middot) – is not something superficial, but if thought about seriously, and over time and with sincerity and effort worked upon, can invoke real change in a person.

In theory I think this this method of self-improvement sounds great – self-depreciation is all too easy but then so is keeping to the same behaviour patterns year after year – so picking on the one middah that needs working on the most does seem like a sensible way to improve yourself. However, this year I have decided to take a break and not make any effort in improving myself at all (not that I did very well at it before).  I have decided that I am too ill to make such changes.  I think I do quite well to get out of bed, get my children to school in clean clothes, give them some sort of dinner and get them to bed (in a completely chaotic sort of way).  If I tried to give myself any other target I would surely fail, so what’s the point?  This isn’t because I am too lazy or have had enough of religion, it’s just that I’m too exhausted.  I don’t have the energy to self-improve. And looking around I can see that there are other people that might feel the same way as me – those living with cancer (and their spouse who is a full time carer); those who are chronically depressed or have dementia or for whatever reason life just seems to be a bit too much.  Surely Judaism should give me and these people a bit of a let our clause for the New Year?

However, having done a quick scan of Jewish law I have decided that there are two reasons for the get-out clause I and many others need not try to self- improve this year. The first is that I am ill and the Jewish law can be very lenient on those are ill (for instance if you need to use a car to go hospital,  because you are ill, on the Sabbath- a day that you normally wouldn’t be able to drive – then you can[2]).  And the second reason why I believe that I and many others who are ill, who are full time carers or who are generally exhausted and life-is-too-much don’t have to try at self-improvement is because that we are already expending all our energy  trying to, in whatever way, make life just a tinsy wincey better for ourselves minute-by-minute day-in-day out. Day after day I

write letters and phone doctors in the hope that I will achieve full health and this is a huge challenge.  Each ill person is on a different journey and faces different challenges but they are all hard and require extreme effort. In this way surely I am along with the other exhausted-life-is-too-much people surely acting in the best of Jewish traditions of self-improvement – of meeting an internal struggle straight on and day-by-day trying very slowly but steadily to overcome it.

Alternative therapy

I’m up for any crack pot idea if I think it will help me get better.  You name it, I’ve tried it – hair analysis, drama therapy, sacro-cranial therapy, cognitive analytical therapy and soon a new diet.  This week someone who I very much respect suggested that I went for some free alternative therapy which involved a very limited time commitment.  I was very much up for it. And so, in the spirit of self-improvement, this week I went to see a  Very Important Rebbe. For those of you that don’t know a Rebbe is a rabbi who has had a job promotion – he’s a rabbi and then some.  People seek a Rebbe’s advice because he’s on a higher spiritual plane than us mere mortals.  And I have to say, I was impressed with my visit. The Rebbe listened very carefully to what I had to say, gave me a blessing and a short regular task to carry out.  I actually thought the task was a lot more useful than the many tasks that cognitive therapists have suggested over the years and I truly felt blessed from his very sincere and heartfelt blessing. I don’t know if the visit will have any influence on whether I get better or not but as I said it didn’t cost anything and no harm done. So Sharon’s assessment on visiting a Rebbe: an alternative therapy definitely worth trying out.

 

PS  Happy tenth English birthday to my lovely daughter Gabriella, whose Hebrew birthday is the second day of Rosh Hashanah.  I don’t know if you will ever read this, but if you do you probably won’t be ten and it won’t be your birthday but I just I just want you to know that I wanted you to have a happy birthday.

PPS The Rosh Hashanah self-improvement thing is obviously a pretty hard thing to achieve many, if not most, Jewish people that I meet do not try at it.  That’s because it’s hard, they think that they might fail and maybe they will. And I believe that a compassionate all-knowing god understands that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[1] Shlah – Leviticus 1:18

[2] There are various law surrounding how you would use a car on the Sabbath if you are ill, so check them out – by speaking to a rabbi or Jewish person educated to a high level in Jewish law, if you think you will need to do this or if you’re just nosey. or Jewish person educated to a high level in Jewish law.

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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.

 

Posted on by sharonrossblog · 2 Comments

29. 25th June 2017 – Epilepsy – Not ‘just’ a seizure disorder

Nearly a year ago I wrote a blog explaining epilepsy as I knew it then.  Having spent many hours trawling through Facebook groups, trying to find an answer to my problems, I now know a little bit more.  Therefore, in this blog, I will explain the mantra of every discerning epilepsy Facebook group ‘Epilepsy – it is not just a seizure disorder.’

However, before I begin, I have to admit that epilepsy is a seizure disorder, so I better explain what a seizure is. A seizure is a sudden surge of electrical activity in the brain which can cause convulsions, a range of physical symptoms, thought disturbances, or a combination of symptoms. The most well-known is a tonic-clonic seizure – involving a loss of consciousness, rapid jerking of the arms and legs and falling to the ground.  But there are over 22 other types of seizure including an absence seizure (loss of consciousness for a few seconds), a partial complex seizure (staring blankly, repetitive movements) and a myoclonic seizure (spontaneous quick twitching of the arms and legs).

Seizures are not pleasant to those that are having them in the moment, but it is the impact that the seizures have on the rest of their lives that can cause the real problems and here’s why:

  1. Your life becomes a little unpredictable (but not in a good way). Some people come to understand what the triggers for their seizures are – it can be anything from excessive heat, loud noises and strobe lighting to drugs, alcohol, stress, interactions with other medications taken for different conditions as well as changing anti-epileptic medications because the current ones aren’t working. However, it can be difficult to manage your life so that you don’t encounter your personal trigger. And other people do not know what their triggers are and reflecting afterwards as to why a seizure happens proves fruitless. Trying to manage triggers or being anxious about the possibility of having a seizure is not a pleasant way to live life.
  2. Post-seizure impacts – Post-seizure you might have to deal with an injury that happened during the seizure eg I saw a photo of a person who had serious burn injuries because when she had one she was holding an iron. But also post-seizure you have to deal with the wooziness and fogginess that it leaves you with – I heard of one instance where a lady was raped post-seizure but she was only made aware of it because her  ‘boyfriend’ later told her that he had done it – she had no memory of it at all (Although please note that 99% of loved ones, including my own are more than caring and thoughtful after seeing their beloved this way – putting them into recovery position, staying close by their side for hours in case they have another seizure and also suffering the anxiety that it may happen again).
  3. You can’t drive – If you have epilepsy or have had a seizure the Driver and Vehicle Licensing Authority may take your driving licence away from you for a period of time. If your job requires you to drive or if you live in a place with poor transport links, this can be dramatically change your life in an instant.
  4. Cognitive impacts – Although I’m not having seizures at the moment I do have chronic cognitive difficulties which impact on my planning, processing, concentration, and memory (one neuropsychologist said my cognition was similar to someone with traumatic brain injury). These difficulties can be caused by the epilepsy itself or the anti-epileptic drugs (see point 5 below). My symptoms are quite severe although many people with epilepsy suffer, to some extent, with cognitive dysfunction.
  5. Side effects from medication – The anti-epileptic medications have to be very powerful to prevent seizures. But so are the side effects. Not only can they cause cognitive difficulties that I mentioned above, but they can also cause drowsiness, insomnia, aggression, paranoia – to name just a few.[1][2]
  6. Depression – For all of the reasons given above people with epilepsy are much more likely to get depressed. And treating the depression can be hard because, in my experience, neurologists do not know that much about depression and therapists and psychiatrists do not know that much about epilepsy.

And so in conclusion this is why, I hope you will agree, epilepsy is not just a seizure disorder. It’s a disabling condition that can have severe impacts on the person living with it at all times.

 

In other news

I have been taking my new anti-epileptic medication but I don’t like the side effects – when I am stressed I involuntarily stick out my tongue and become inarticulate.  My doctor looked in the BNF (the doctor’s medical bible of pharmaceutical side effects) and said that because my side effects weren’t listed they couldn’t possibly be down to the medication.  But I think it is, and since I am not seeing any benefits of the medication, I am going to discuss with him how I can wean off of it (I have to wean off because if I do it too quickly I could have a clonic tonic seizure).

I only have a few more sessions with my neuropsychologist for neuro-rehabilitation.  We aren’t really getting anywhere – she suggested I used some apps to help me reorganise myself but then I forget that I have the apps on my phone.  But anyway, even though I like her, the NHS funding is going to end. I have found our meetings useful because she made me understand that I am not going mad – that there are other people like me.  She gave me metaphor of my brain being like a filing cabinet – whilst most people take in information all day long and put them in files and then retrieve them at the exact moment when they need them, when I get information I don’t know where to file it and therefore I cannot retrieve them. I am still waiting to start the ketogenic diet – I now have an appointment date with the dietician in September and I hope to start the diet in October.

NB – My UK Huffington Post blog, of the same name and published on 30th January 2018, is based on this blog entry.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[1] https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects

[2] https://www.webmd.com/epilepsy/medications-treat-seizures#1

 

 

 

Posted on by sharonrossblog

28. 7th June 2017 – On Dementia

 

I could say that last week was a busy one for me – I attended a batmitzvah of some very special friends of hours, the following day was a wedding of a relative and then it was half term. In half term there was the two day festival of Shavuot (in Israel and for reform Jews it’s one day, but that’s another matter). For various reasons to do with Jewish law I prefer to cook the vast majority of food before the festival began and we also had guests over this period and together before the festival began I calculated that, together with my husband we cooked 30 meals. To top it off it was my six year old’s birthday party on the Sunday of the half term with all that that entails (ie softplay followed by lunch). But I didn’t feel busy. I didn’t feel busy at all. And I have come to realise that the reason why I didn’t feel busy or even involved in what I was doing was because my epilepsy has some of the features of dementia.
I was aware that a good percentage (10-22% )of people with Alzheimer’s (the most common type of dementia) develop epilepsy and I wanted to find out more about it so I decided to read Sally Magnusson’s book ‘Where memories go’ about her mother who had Alzheimer’s Disease. In its’ review The Scotsman wrote the book was ‘profoundly moving’ and I think that this is because it is clear in every page how much Magnusson (whose father was Magnus of BBCs Mastermind) loved and respected her mother, Mamie Baird, and, even in her mother’s darkest days, tried to understand what it was like to actually be her mother, to think like her mother, to approach life like her mother.

As I was reading the book I noticed three features of Mamie Baird’s, illness that were like my own. Firstly Mamie Baird tells her daughter that she cannot be herself – that feels disconnected. And that is exactly how I feel. It is not that I, and I suspect Mamie Baird, do not know who I am in a philosophical way – I have a strong identity; I know who I am and what I want out of life – it is that I have lost (or didn’t have in the first place?) a sense of who I am on a minute-by-minute basis. Somehow, when I go into a shop it takes me forever to decide which sticker I should buy to decorate my son’s book; when I stand in the kitchen and the meal needs to be made, the washing needs to be put on, the children are asking me to do something, I kind of stand still (my mum says I’m prevaricating) – I just don’t know what I am doing. And that decision about where to send my child to school. How is it possible to make a decision like that? But deep underneath the mush – the indecision and the lack of focus, I know squarely and powerfully who I am – but it just seems impossible to obtain.

The second feature my illness shares with Mamie Baird is a lack of sense of time. Magnusson describes a scene where she is standing on a beach noticing the waves and all that is around her and then she thinks about the past and memories of her father and then she remembers something that she has to do in the future and then she understands that her mother cannot have these thoughts – she cannot think about the past; she cannot analyse the present and she cannot think about the future and for the most part that is how it is for me – I sit in the present without connecting to how what is happening now connects to the past or how I can make plans for the future. And by future I mean the next day, the next hour – if the kids need an early night because they are doing something the next day, it sort of doesn’t occur to me.
And the third similarity my illness shares with Mamie’s is a lack of curiosity. I know, I realise what you are thinking, ‘Sharon, you have tonnes of curiosity,’ but I will illustrate otherwise. At my son’s birthday party last weekend my daughter’s friends helped me prepare the lunchroom whilst my son and his friends were at softplay. I started to put a drink carton at each plate. ‘Should we put some drinks in the centre, ‘ my daughter’s friend said, ‘that way the children can choose which flavour drink they would like’. ‘OK’, I said flummoxed as always – how does a child put these questions in her head which simply never in a million years would occur to me? And then she changed her mind, ‘It doesn’t matter – they can just choose where they are going to sit based on which flavour drink they like’ . ‘OK,’ I said really not knowing which was the right approach and also knowing there wasn’t one whilst realising at the same time that my daughter’s friend’s brain worked on a level that mine simply could not do. I know it might seem in these blogs that I am curious – indeed I am absolutely fascinated in how the brain works; in how we can make life better for people that are suffering; in what Hope G-d can offer people in pain – but these are intellectual curiosities, without substance, because I can’t hold facts. What I mean when I say that I lack curiosity is that I am not curious in the mundane – in the seemingly trivial but somehow very important things that happen every day and thus because of that, like Mamie Baird, I suspect my life even when busy, feels boring and a little dull.
As I said the reason why I believe I share ailment with Mamie is because many people with dementia also have epilepsy. Indeed my neuropsychologist said that my symptoms are similar to those of stroke and traumatic brain injury patients (TBI) – that is probably because some of these patients also have epilepsy as well . By all accounts Mamie Baird was an extraordinary person who led a full life with joy which makes her demise, likes those who have suffered a stroke, TBI and with epilepsy all the more tragic.
Election News
Just a plug to all those in the UK – please vote in today’s election! Voting for no-one isn’t a vote for democracy and at this time it is important that we exercise our right clearly and authoritively. But please don’t vote Labour. If you want someone to run a large corporation you don’t choose someone who has never held a management post, who makes friends with people that are notoriously bad for the company, and who although purports to value those who are different in his company is quite happy to let some of his supporters aggressively and openly be racist to a group of people who have contributed so much towards the corporation, and indeed, his own financial backers over the years .