What does living with epilepsy and living in the coronavirus pandemic have in common?

I was like most of the world, also thinking about coronavirus and so decided to write my first public blogs in over six months about my thoughts on it.  My musings on feminism will have to come later……If you were asked what epilepsy and coronavirus have in common, you might look perplexed and then answer ‘not a lot’ and you’d be right – after all, one is a neurological condition and the other an infectious disease.  Physiologically they just work in completely different ways.  However, as someone living with epilepsy, in this blog, I would like to argue that actually living with epilepsy and living in a pandemic are not so different.  Here are five reasons why I think so:

  1. Both the pandemic and epilepsy cause anxiety

The pandemic causes anxiety.   Because of COVID-19 the world has woken up to the fact that we are not in control, we can do our best – we can social distance, wash our hands, invest in vaccines, but ultimately we are not in control of our lives.  For many, many people this is now causing a debilitating anxiety that might take years to recover from.  People with epilepsy have known this feeling of being out of control for years.  We can take our meds, get a good night’s sleep, explore alternative therapies but ultimately, ultimately a seizure can happen, anytime and anywhere and the knowledge of that fact can create anxiety which is overwhelming.  This is one reason living in the pandemic and living with epilepsy are similar.

  1. We don’t know enough about either condition

Right now, billions of pounds are being spent to find out more about coronavirus – we’ve made great strides but we still don’t know how long immunity lasts, when we will have a vaccine and whether there will be a second wave[1].  There is still a huge knowledge gap.  Considerably less has been spent on epilepsy research throughout the thousands of years that the condition has been around, yet some fundamental questions remain – six out of ten people with epilepsy don’t know what caused it, one third of people with epilepsy can’t find medication that works and there isn’t a cure for the condition[2].  That is a lot of unknowns and the scientific unknowns are one of the similarities between the two conditions share.

  1. Treatments for both conditions have nasty ‘side effects’

In the UK a minimum of 40,000 people have lost their lives due to coronavirus and undoubtedly there will be more.  Social distancing is one of the most effective ‘treatments’ for the pandemic, but it creates ‘side effects’ which are difficult to stomach. These ‘side effects’, as we know, include millions losing their jobs and all of us losing our personal freedoms.    They are necessary, to prevent more loss, but they are also a bitter pill.  Although it is somewhat different, the most common treatments for epilepsy – medication and brain surgery – for some people can have highly unpleasant side effects.  For medications these can include impairment of cognition, changes in personality and drowsiness, to name but a few.  The risks from brain surgery can be more serious.    The treatments don’t always cause the side effects, just like the social distancing measures don’t always create misery for those adhering to them, but the risk that they can occur is there. We don’t know enough about either condition to reduce these ‘side effects’ from these treatments – to make them more nuanced, more particular to each person who has the potential to suffer and thus it is a commonality that both conditions share.

  1. Both create financial hardship

Coronavirus has caused financial hardship to millions of people and, by all accounts, will continue to do so, probably for years to come.  In a similar vein and for various reasons, people with epilepsy suffer financial hardship – they have one of the lowest rates of employment among disabled people. In 2019 the Office of National Statistics found that just over a third (34%) of people who identified epilepsy as their ‘main’ health condition are in employment, compared to 76% of all working aged people [3].  Thus, part of treating both coronavirus and epilepsy should be to help those affected get back to work and it is another reason why they in some way can be considered as similar.

  1. Travelling is a problem for people with epilepsy and those living in the pandemic

Up until recently millions of us have been urged by the government to ‘stay at home’ and only take short trips that were necessary.   Now we can go out – but we have been told to remain vigilant – the virus is still out there  –  we shouldn’t travel in a car with people from another household; we should only travel by public transport if it is absolutely essential and, if so, we should wear a mask and if we are walking in a public space we should stay two metres apart from those that you don’t live with.  But some people with epilepsy have always had to be aware of the risks that they take when they travel. Some people with epilepsy are told that they cannot drive and for others even going on public transport, walking or even cycling can carry risks.  The potential for a seizure is always there. This isn’t to say, people with epilepsy shouldn’t go out, just like for the majority of people living in a pandemic doesn’t mean that they shouldn’t go out, it’s just that in both when travelling there can be a worry that something unexpected could happen.

However, the purpose of these musings is not to get everyone depressed. People with epilepsy, as with people with many other conditions, have been living for years with this way of life with little fanfare.  For them, like me, it’s been a struggle.  But what I have learnt along the way is the only way to deal with these challenges is to get on day-by-day and face the world that is in front of me, as best I can – no more or less.  It’s possible; it is difficult; but it is possible.  And in the same way with coronavirus – it is difficult – it creates all sorts of insurmountable challenges but I am sure it is possible for us all to overcome them.


[1] https://www.thetimes.co.uk/article/coronavirus-what-we-know-after-six-months-fll7r8j9k

[2] https://www.healthline.com/health/epilepsy#facts-and-statistics

[3] https://www.epilepsy.org.uk/employment-campaign

52. Withdrawal Agreement

Every conversation I have these days seems to be a microcosm of Brexit – the UK’s seemingly never-ending attempt to leave the European Union.  A dinner conversation about something mundane and inconsequential can in a split second turn and all of a sudden voices are raised; those involved in the discussion start to look agitated and neither side is going to give in and I think to myself ‘This discussion is just like Brexit – it is no longer about the issue in hand – it’s just about egos and who can win.’ I also have Brexitish discussions with myself about logistics – it starts with ‘How do I get child A to place B when child C is at place D?’ and then I end up just saying ‘I know all the facts but I haven’t been able to come to a conclusion.  And now all I am doing is repeating the facts to myself hoping to find an answer which I can’t do at the moment.  I’m driving myself mad.  I’ll stop talking about it now and see if we can come up with a way to resolve this tomorrow.’

And I also see a microcosm of the Brexit discussions with my own medical situation.  For over three years now I’ve been writing this blog about how I find life generally difficult and I’ve been tirelessly searching for a solution to make life easier for me.  But I haven’t found one.  It’s not that I haven’t tried and it is true that some progress has been made. But not as much as I would like.  I fear, even, that these blogs have just got a bit boring and some people have dropped off along the way because my story doesn’t seem to be getting anywhere.

Nevertheless, I have decided to take a different approach to Boris Johnson, our somewhat error-prone Prime Minister, in dealing with my, well let’s face it, slightly less complicated situation.  In February this year (on the 21st to be precise) I made myself a little ‘withdrawal agreement’.  I told my children very sincerely that in a year’s time I bet that I would be able to drive. (My eldest daughter didn’t think I would remember this bet to myself so she made me a little poster – see above  – to remind me of it, which we put on the whiteboard in the kitchen).  I knew that when I made this ‘agreement’ there were a lot of variables outside of my control – I would soon be withdrawing from an anti-epileptic, after a period on a new medication, and in this period of withdrawal I knew that legally I would not be allowed to drive.  I also didn’t know how I would react to the change in medications and if I had a seizure, as a result of changing medications, I knew that I wouldn’t be able to drive for another year. Even if the change went well, I knew that before I could get my driving license back I would need to write to the Driving Licence and Vehicle Authority (DVLA) to get their authorisation for my licence – and this is a bureaucratic process that can take some time.  Nevertheless, I gave myself this target because it’s good to set a goal; to focus on the possible.

However, I now know that I didn’t have all the facts to hand when I made my ‘agreement’.  It turns out that not only am I not allowed to drive whilst withdrawing from an anti-epileptic medication, but the DVLA also say that, because of the seizure risk, I am not allowed to drive for six months afterwards[1]  If I had known that piece of information I might not have made the ‘bet’ in the first place.

But this is where I, and indeed I am sure many other people out there, differ from Boris in trying to resolve a tricky problem (however, as I say the problems Boris has do seem to be trickier that mine).  Boris believes that the UK has set itself a ‘withdrawal date’ – the 31st of October and whether we have an agreement with Europe or not we will leave on that date, even if it means that the deal that we get on this date (a so-called ‘no-Deal’) isn’t very good. I believe that I have to be flexible with my target date for resolving my problems. Because I won’t be able to drive by 21st February next year, it doesn’t mean I have failed – it just means I have to re-evaluate my strategy but I still have to keep on going. I have come to realise that I might not get everything that I want – maybe I’ll never feel safe enough to drive (even if the DVLA said that I could); maybe my memory will never be what I want it to be, but I do still believe that there is a better way, that I’ll get a better deal, even if not all my problems will be resolved.  But, unlike Boris, I believe that the only way that I can do that is if I am flexible about the date by which this will happen and compromise over what I am hoping to achieve.

In other news:  This is how the current episode in this almost boring saga is going now:  I am still withdrawing from my old medication.  The side effects from medication withdrawal, it turns out, are quite pronounced and there is little research about how it impacts on patients.  As I said, under the supervision of my neurologist I slowly increased my new medication and then once this was established, over an extended period of time slowly withdrew from the old medication. The first three days of each withdrawal had me wiped out – I went to bed and didn’t make much sense.  Once I regained enough energy I went through the whole process again.  Right now, I’m on the lowest therapeutic dose of my old medication and am soon going to increase the dose of my new medication further.

And the result?  I don’t know.  I’m not sure if all this effort and the cost the-medication-that-an-NHS-doctor-prescribed-but-the NHS-will-not-pay-for is making a difference.  Some people are saying that since being on the medication I seem stronger. But I worry about the impact of the medication on my brain – it seems to me that an increasing amount of time the words that I mean to say are not coming out of my mouth.  It is difficult to know if there are any advantages to my current strategy to finding a solution to my problems.  However, I must fight on, with my flexible approach.

Last week I went to see my neurologist for a medication review and I asked her how I would source my new medication in the event of a no-deal Brexit.  I knew already, from the Epilepsy Society website, that the pharmaceutical company were keeping a six-week supply of my old medication (which quite frankly is almost like saying that they are not stockpiling meds) [2].  My neurologist had no information about the stockpiling of my new medication and I emailed the pharmaceutical company but they haven’t responded.   So, I do hope that Boris Johnson knows a thing or two more than me about how to resolve a tricky problem (without any medication I will almost certainly have a seizure).  Millions of medication-dependent people, like me, are relying on his belief that he can.


[1] https://www.gov.uk/epilepsy-and-driving

[2] https://www.epilepsysociety.org.uk/contingency-plans-epilepsy-medications-case-no-deal-brexit#.XYi7uyhKhPY

50. 21st July 2019 – Present-ing Policy

I am now approaching the batmitzvah of my eldest daughter and can foresee that this year my family will spend and receive more on gifts than the norm. As such I thought it prudent to write myself a Present-ing Policy. For those of you who have never seen a Present-ing Policy before – neither have I – but I do think that they are circulating around somewhere in most people’s heads – I’m just writing mine down to clarify my thoughts on this important matter.

This policy makes reference to both giving and receiving gifts and applies only to large gathering such as bar/batmitzvahs and weddings herewith known as ‘simchas’. Other Present-ing Policies towards events such as small family gatherings, the birth of a new born baby, end of year teacher gifts won’t follow because the whole thing will just start getting really tedious.

The Present-ing Policy is based on the premise that presence is more important that presents. A guest has been invited to a simcha not merely to make up numbers but because the host really feels that they want them to be part of the affair. A present is just a happy by-product of the occasion.

My policy states that:

  1. I am anti-reciprocation. There is a feeling that if someone gives a certain present to you (or your family member), by extension you have to give the same value of a gift back at the present-givers simcha. This is not my policy. Reciprocation suggests that present giving is some sort of weird long-term saving device where you spend money every so often in return for getting a lump sum when it’s your simcha. However, there are many reasons – see section entitled ‘Influences on Giving Behaviour’ – where I might decide to give more or less than I (or my family member) has received and I reserve my right to do this.
  1. I acknowledge that there is a ‘going rate’ for gifts but will try hard not to be pressurised by it. The ‘going rate’ is defined as the amount spent on a gift (including the gift of money) which is considered, by the local population, to be the acceptable rate. To try to ignore the fact that there is a ‘going rate’ is akin to trying to ignore inflation. The price of things over time goes up, and that includes presents. Thus, I recognise that there is a ‘going rate’; I know that I feel compelled to give it, but my policy states that I reserve the right not to give it.
  1. When giving and receiving gifts and invitations to these events I will encourage gratitude. It really is an honour to be invited to a simcha; it’s an honour to be able to invite someone; an honour to receive a gift and an honour to be able to give one. The problem arises when many invitations/ presents happen at the same time and the matter can get out of hand if the right attitude isn’t projected onto the proceedings – people can become blasé about the whole thing. It’s important to be thankful for each and every invitation and gift, even if, in this atypical year, it all seems to happen at once.
  1. I will encourage being non-judgemental on the receiving end of gifts. Often Excel spreadsheets (or Google Sheets) entitled ‘Presents’ are drawn up after an affair on the pretext that one can use this resource to write thank you letters and so you know how much to reciprocate if the gift-giver has a simcha. However, what really happens is that the spreadsheet is used as a missile for judgement – ‘Oh, Person X was very generous but Person XY, especially considering their circumstances, was not’ etc etc. As stated above presence is more important than presents and such statements can be counterproductive to the enjoyment of the whole affair.

Influences on Giving Behaviour

As a point of reference here is a list of possible influences of giving behaviour: Number of invitations to simchas received by the gift-giver in given period; income of giver; attitude of giver towards gifts (some just like to give more than others irrespective of income – there’s no right way – different people spend money on different things); perceived ‘going rate’ of gifts (may vary depending on who you ask); gift-giver remembering at the last minute that they have forgotten and they dash to the cashpoint which only has a denomination of notes that means that they can only give more or less than they wanted to. Also, in some circumstances the giver accidentally deletes the spreadsheet listing how much was given to your family member for their simcha and therefore although reciprocation is the aim, it is not possible and a guess has to be made.

NB I reserve the right to not adhere to this policy 100%. Some of it is quite difficult. It should be noted that it is common practice of policy makers not to adhere to all the policies that they create.


49. The present spectrum

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

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

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

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

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

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


Ps – Happy birthday Shona and Liz!!!

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

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

 About the project

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

 I can justify it. Sort of…….

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

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

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

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

 Can a workaround be found?

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

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

Can you find a solution to this problem?

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



47. 13th March 2019 – Time

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

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

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


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

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

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

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

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

To see my other blogs please go to sharonrossblog.com


[1] When I initially wrote this blog I referenced a paper that said that one in eight people with epilepsy are homeless (see 1 below.  However, since then the government have also carried out research (see 2) that found that over 60% of people with epilepsy are unemployed which further evidences the fact that many people with epilepsy would find it hard to seek alternative treatments. 1. https://www.epilepsysociety.org.uk/news/new-initiative-support-homeless-people-epilepsy-28-07-2016#.XIl1HSj7RPY   2. People with disabilities in employment Number 7540, 17 May 2019 (House of Commons Library)

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

46. 16th December 2018 – Christmas Update

My children go to Jewish schools and don’t know the words of any Christmas carols but even they love looking at the beautiful Christmas tree that lights up the dark night outside our local church and comparing the different decorations that adorn local homes.  We live in such a politically correct world that we say to each other ‘season’s greetings’ but even though I’m not celebrating Christmas, I can’t get away from it. So since it is this time of year I thought it was a bit silly to give you a ‘seasonal’ update, but instead I’ll give you a Christmas one – here it is:-

I have been making progress with the neurofeedback.  I have had over 15 sessions and Ms Brain had also given me what I call my ‘rave kit’ to wear once a day.  The ‘rave kit’ consists special glasses which, when linked up to a small black device, have flashing lights and a pair of headphones which when similarly linked make sounds like a quiet pneumatic drill.  The idea of my personal sound and light show is that the frequencies emitted would have an impact on the neural activity of my brain and would give my brain an extra boost between neurofeedback sessions.  I know what you’re thinking.  ‘Sharon, you’ve got epilepsy – how can you wear glasses that show flashing lights?  Surely you will have a seizure.’ Well no – because only 5% of people that have epilepsy have photosensitive epilepsy[1] and in any case the glasses had been designed with people with epilepsy in mind.   But, Ms Brain and the manufacturer’s instructions said that all people with epilepsy should be cautious about wearing the glasses.  So I took the necessary precautions.  The first few times I used them I made sure that there was someone in the house with me – just in case.  But I didn’t have a seizure.

The brain stimulation, neurofeedback and glasses are making some difference, but as with the ketogenic diet it is not the radical shift that I crave. Now in the morning when I wake up I do think ‘What am I doing today?’ (This is the planning element of a person’s thinking which most people take for granted but is actually an important cognitive function).  The other day an email from my youngest daughter’s school suggested that she might leave late that day and I actually thought ‘Oh dear, this might make me late for picking up my other children’ (I have learnt the hard way that this part of cognition is called processing – linking one piece of information to other information).  This seemed to be a new way of thinking about things for me. However, I was unable to perform the problem-solving element of this task ie now that I have this information, what should I do with it.  Instead I just panicked and didn’t know what to do if I was late – but it was a start, it was a shift in thinking.

However, I am very aware that I have this fog in my head – I can almost feel it.  I still walk around in the kitchen, not really knowing what I am supposed to be doing and although I ‘organised’ a family Chanukah party at my house I didn’t think about the fact that we might need some food for the festivities until about an hour before the party began.

So, I was pleased with my progress, but I was becoming a bit despondent and wanted more.  And it just so happened that I had an appointment with a new neurologist to give me a second opinion about whether I could take a prescribed version of cbd oil.  But directly before the appointment I was asked to participate in a study to improve scientists understanding about epilepsy using trans magnetic stimulation.  I was very interested in this and was happy to participate but I knew that it was not going to directly help me.  It would take at least another two years to complete the study but that I realise is not their biggest challenge. The biggest challenge researchers face, especially if they find something that is perceived as being new or controversial, is getting the results to seep into the psyche of neurologists, doctors and more importantly politicians.  Even though, as I have said before, there is a huge amount of research which evidences that the ketogenic diet can help adults with epilepsy- it simply isn’t at the forefront of most neurologists minds when they are treating it. There is research that suggests that neurofeedback can treat people with epilepsy but it is considered radical and although there is plenty of evidence that cbd oil can improve the lives of those with certain types of epilepsy, in the UK at least, it is still almost impossible to get it prescribed.  So, I took part in the study in the hope that future generations might somehow benefit from it but I knew the results wouldn’t help me personally.

I went to my appointment with CBD neurologist expecting very little from it.  I knew that I was unlikely to be prescribed cbd oil. But it’s worth turning up to these appointments, just in case.  He told me that one of the reasons that practically no one had been prescribed it since it was licensed was because it costs £2000 per month and that the government has yet to give guidance on who should get it – that will come next October.  He is going to put me on a list of 100 people who had expressed an interested in being prescribed it but he also told me what I already knew – there wasn’t much evidence that it would treat my type of epilepsy.

Since I was there, I asked him to review my case.  It was unusual, he said to have my type of epilepsy with the cognitive difficulties that I had.  He suggested a change in antiepileptic – something a little outside of the box – a new type of drug that is not licensed for my type of epilepsy, but has less side effects.  I might as well give it a go.   However, it wasn’t in his gift to prescribe it to me because as a top ranking neurologist at a leading hospital specialising in brain disorders, he didn’t have access to the money to pay for that.  Only my GP could do that because they hold the purse strings. So that’s where I go next – to my GP, to ask for funding for different meds.  I’m not discounting the importance of the neurofeedback.  I don’t believe that only one approach will work for me but I think that there is a barrier from preventing me from making any further improvements with it and that barrier could be the drugs. Although a bit despondent and fed up I must Keep Calm and Carry On and I’ll fill you in on what happens next in the (secular) New Year.


There is a connections between the messages of Christmas and Chanukah – both are stories of how a small miracle (the birth of a child\  oil which was meant to last one day lasting eight days) can have a huge impact on the world (the growth of monotheism\ the continuation of the Jewish people).   I pray that the small miracle of a different drug has a huge impact on my life.  Wishing all those that are reading a happy Christmas break (apart from those in Israel who don’t get a break) and many small miracles in your life which might lead onto bigger things.

[1] https://www.epilepsysociety.org.uk/photosensitive-epilepsy?gclid=EAIaIQobChMI1IP646CS3wIVarXtCh3zWA5DEAAYASAAEgKM-fD_BwE#.XAzId3T7RPY

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45. 12th October 2018 – The Diary of a Neurofeedback girl (3)

Just to update you, but I don’t think I’ll update you every week because there won’t be that much to tell – or will there??

I had two sessions this week. On Tuesday I did the aeroplane game and magnetic stimulation again.  I’m getting quite good at the game it apparently.  The idea is that if I fly the aeroplane correctly through the hoop my brain gets a dose of dopamine and this encourages me to do it again.  If I win it illustrates that my powers of concentration, processing and problem solving are working well but if I do that too often Ms Brain makes the test harder – I’m told it’s not good to win all the time because brain needs negative as well as positive reinforcement.  But, nevertheless I try to win! The magnetic stimulation was slightly different today because, as well as putting the magnets on my head, she put them on my stomach to provoke activity in the gut.  According to Ms Brain, who clearly knows much more about this than I do, gut stimulation can also help although I’m not sure how – but it felt lovely.

Afterwards Ms Brain gave me electrical stimulation.  ‘You’ve been doing quite well,’ she said, ‘but I want you to do better’.  After the last session I felt warmth in my brain, as I mentioned in my last blog, but that weekend I also had a vivid dream.  Now it being a dream, and me being me I can’t remember what it was about but I do know that it had all the same qualities as those that I had when I was on the anti-depressant called venlafaxine, many moons ago.  It felt that I was alive in the dream, it felt intense and the real-life characters were caricatures of themselves – believable but somehow an extreme version of themselves.  Ms Brain thought having the vivid dream was a good sign of my brain rewiring but since it had only happened once and that I hadn’t noticed any other changes in my day-to-day thought patterns we should try and increase the power of the tools that she was using to help me.  It would take a few sessions, she said, to work out what method was going to help me best.  So, she performed electrical stimulation as well as magnetic stimulation. ‘But we have to go slowly’ she said as she had said last time ‘because you have epilepsy and your brain is sensitive.  You will have to start at a level much lower that the therapeutic dose’.

I’m used to doctors being cautious with me.  When I gave birth to my son, it all happened very quickly.  One minute I was downstairs on the ward and 11 minutes later I was upstairs in the delivery suite giving birth.  However, all I remember were the panicked shouts of – ‘Come quick she’s got epilepsy’ and all of a sudden there were 11 people[1] in the room for what was a pretty straight forward natural birth without pain relief (the panic was caused by the fact that the stress of delivery can, for a very small minority of women with epilepsy, bring on seizures[2]). There was also the time when a psychiatrist wanted to prescribe me an anti-depressant because absolutely nothing was working and I was feeling suicidal every day.  However, he said, ‘I can prescribe you this medication. But it is a risk.  It can bring on seizures.  If you decide to take the medication you should have somebody with you at all times over the next few days.’  I took the risk because I was desperate, but it worked.  I calmed down and I didn’t seize. (however, previously when another psychiatrist prescribed me with an anti-depressant, without giving any caveats, I was not impressed when taking it caused me to have a clonic-tonic seizure).

So, Ms Brain applied electrical wires to my head and these gave me a small tingling feeling.  On top of the wires she put on the magnetic stimulant boxes that she gave me last time and she put the boxes them on my gut as well. I do trust that she know what she is doing and I just have to continue with the process and see what happens next.

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[1] Obviously I can’t remember how many people but it was a lot people.

[2] See https://www.epilepsysociety.org.uk/giving-birth-and-epilepsy#.W8BmFmhKhPY   (accessed 12/10/2018)

44. 3rd October 2018 The Diary of a Neurofeedback Girl (2)

‘It has been a few weeks since our initial appointment,’ so what I want to do first is carry out a shorter Q EEG test – this time only with your eyes shut – to see if your brain activity has changed since we first met’ said Ms Brain, when we met for the second time today.  And when she analysed the results she said something that I was quite amazed at – ‘The results are interesting – they show more activity than your previous result.  I’m not saying that your brain isn’t screwed up – it’s still screwed up, but just that you had more activity today.  Are your tired or stressed?’ ‘It is quite unbelievable,’ I thought.  ‘She really does seem to know what is happening in my brain.’  I’m was a bit scared. I was definitely doing more thinking in that test than the absolutely no thoughts that I had in the previous test. I wasn’t thinking loads but I was doing more thinking.  So, I said to her, ‘In the last test I was more tired than I am today and also I am more stressed today I was last time so I guess these things could have impacted on my brain activity’.

‘What we are going to do first is magnetic stimulation,’ said Ms Brain.  ‘It’s very gentle.  I have to go very slowly with someone with epilepsy because we don’t want to provoke seizures.’ And then she put four little black boxes on my head, which reminded me of tefillin – the black boxes which contain the words of the most sacred of all Jewish prayers – the shema – which Jewish men wear in the morning to pray (as far as I know, although I don’t know for sure, the magnetic boxes did not contain the word of God but I’m convinced that She is involved in the process somehow).

And then I felt it – a sensation I had felt before.  A long long time ago, before I was diagnosed with epilepsy, I took part in a weekly psychodrama group.  Much of it was role playing out different parts of my internal and external life (both real and make believe) and I had an enormous amount of respect for my therapist who was a Wise One. After a year or so (OK I’ve made that bit up – I don’t know how long I had been in the group exactly because that’s just not the sort of thing that I know, but it was a relatively large amount of time) of seeing her she said to me to me ‘Sharon there is something wrong with your brain.  Have you ever been hit on the head?’  ‘As it happens, yes I have’, I said.  ‘When I was eight or so I was in a hotel bathroom and slipped on the floor and hit my head.  My parents were in the restaurant downstairs (this was completely acceptable and even the norm in those days) and my nine-year-old sister was looking after me and my brother. She called my parents and they came back from their meal but I didn’t go to the doctor as the bleeding stopped and I was fine. However, now there is a small patch on my head where hair doesn’t grow.’  ‘Do you know if you were unconscious at any point?’ the Wise One asked. ‘Probably not.  I guess theoretically I could have been for a moment or two but if I was no one knew about it.’ ‘I suggest you go and see a cranial sacral therapist,’ she said. ‘Maybe they will be able to help you.’

Thinking about it now, it was a bit odd that I was not disturbed at the thought that the Wise One thought that there was something wrong with my brain but nevertheless I faithfully went off and made an appointment with a cranial sacral (CS) therapist.  For those of you that don’t know this CS therapy involves evoking the CS system within the body which according to its proponents enables the body to find its own natural ability to heal itself.  It was a joyous and beautiful experience. As I lied down on a therapy bed my therapist (one of those people who have been there, bought the tea-shirt and grown from it) put her hands on my head and sort of massaged it. Sort of.  Generally, I don’t like massages.  They don’t do anything for me.  But this was very  very gentle.  And it was like the first time in my life I felt relief.  I felt free.  I was alive.  OK, the changes weren’t permanent but it was definitely worth paying for the experience.   And that was what the electrical stimulation felt like – it wasn’t as intense as the CS – it wasn’t as beautiful but there was some relief and that made me feel like there might possibly, if I prayed hard enough and God willed it so, be an end in sight (or even better – a new beginning).

But that wasn’t the end of the session.  After that I played the strangest ‘game’ I have ever played. With my wired-up cap on, I became an aeroplane.  That is, I became an aeroplane flying on a computer game and my task was to fly through the green hoops.  Except I didn’t have a console. And if I blinked or moved my head to somehow physically move the plane I was told that I should try not to do that as it caused difficulties for the computer programme.  No, the task was to simply think my way through the green hoops.  ‘Up, up’ I thought. ‘Higher, oh dear, oops. Concentrate’ It is difficult to say how I was flying the aeroplane but I knew this – I was thinking my way through the task.  The programme was responding to me.  It was not made up hocus pocus. I’ve got no idea how I scored, but Ms Brain told me that I was doing quite well.  Let’s hope I keep on winning.


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43. 12th September 2018 – Diary of a Neurofeedback girl – 1

The 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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