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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

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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.