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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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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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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

 

 

 

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25. 23rd April 2017 – You are what you eat

The Jewish calendar is currently between two festivals – Purim and Passover – which are based on two captivating stories – the story of Esther and the story of Moses.  The stories have some strikingly similarities.  However, they also differ in one key respect.

The Passover story is set in Egypt and the Purim story in Persia. These were both countries that the Jews lived, but could not be openly Jewish. And then a protagonist comes forward – in the Purim story, Mordechai – and in the Passover  story – Moses – they are both leaders, wise beyond their years and are prepared to take risks for what they believe in -Mordechai refused to bow to Haman, the Prime Minister, and Moses killed an Egyptian because of the way he was treating an Israelite. Finally both protagonists are humble enough to realise that they cannot achieve their goal by themselves – Mordechai asks Esther, who was either his niece or wife (depending on how you interpret the story),to try and influence the king because he knew he could do that himself and Moses asks Aaron, his elder brother, to be his spokesman because he knows he has weak oratory skills.  And finally both the Purim and Passover story have the most captivating and mesmerising plots – hope lost, murder and the fall from power.  Indeed, if you don’t know the story of Esther or Moses I implore you to read them – if I hadn’t have heard the stories thousands of times before, I would be entranced.

However, that is where the similarities between the two tales end.  Because they have one fundamental difference – in the Passover story the route for the Jewish people to follow is clearly signposted.  G-d through Her supernatural miracles – the plagues and the splitting of the sea – clearly indicates that the Jewish people’s path is to follow Moses out of Egypt (not that all the Jews were keen about this idea, but that is another story).  But in the story of Purim is not one of mind-blowing, wondrous, miracles that clearly show the direction of the plot. Instead, the characters are presented with a series of challenges and at each and every step take decisions that they hope will lead them the right way, but they don’t know for sure.

And so it is with my own life.  I am muddling through.  Sometimes my life seems to make sense but most of the time it doesn’t and I face an uphill battle, I struggle on.  About a year ago, I was randomly searching the internet when I came upon a piece on Wikipedia about Attention Deficit Hyperactivity Disorder (ADHD) and all of a sudden all the puzzle pieces seemed to fit – I was convinced that I had ADHD and finding this article was some sort of miracle.  And so I went to a doctor and she said that although I have executive function problems (because for those of you that don’t know ADHD is a disorder of the executive function) it was my epilepsy that was causing my difficulties. But I was not convinced.  So I got another opinion.  Same thing.  The doctor said – your disorder is about your epilepsy and not ADHD.  And then I went to my neurologist, and I described my symptoms and she prescribed me an extensive stay in hospital for some more tests.  This must be a miracle, I thought.  At the hospital I will find my answers.  And at each stage I thought ‘I know why my story is taking me this way.  It’s all making sense now I understand why my puzzle pieces of life have turned out like this’.  And in some sort of arrogance as my story began to unfold, before I went into the next doctor’s appointment I started to believe that I understood G-d’s mind.  That is until I got a slap in the face and the doctor didn’t provide the answers.  And then once again I am left slowly trying to feel my way in the dark searching for a miracle.

I look to Esther and Mordechai’s story and I see that G-d is there but She’s hidden, unlike is the Passover of story but I am reassured that their story does turn out well in the end (Haman is found out to be the baddy and lots of non-Jews die in battle). But I realise that I have to do, what Esther and Mordechai did, and just what most of us do, when our plot makes twists and turns, – I have to do what is right at the time until, for that moment in time at least, the puzzle pieces of my life finally look like they makes sense.

In other news: No other news.  I am awaiting my medication change and my referral to the neuro rehabilitation unit.  Both things should happen quickly but for whatever reason they are taken time. I really am still looking for a miracle to happen and a magic pill to finally piece together the puzzle of my life.  But my search is now looking a bit desperate and although I pray I am starting to give up on whether it will ever happen.

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21. 15th January – An Update – Still Ill

After two months on my new medication my cognitive function has not improved and therefore I am still ill.  I know my cognitive function isn’t working because of hundreds of seemingly innocuous events that happen to me every day that make me think that my brain isn’t working. For instance a friend of mine told me that she bought a new coat because her current one was two years old and looking a bit worn.  I was really baffled – how did she know her coat was two years old? Has it got a ‘bought in’ date on the label?  No – she just knows it.   And how does she know the coat is looking a bit worn?  Has she got a high tech ‘very warn’ app that tells her that her coat has had it’s day.  And then how does she put all this information together and chose a coat that meets her personal taste, budget and the season. I’m really not sure how people come to these conclusions but I know that I just can’t do and that’s why I know that I am still ill.

The self-awareness of my difficulties is making me feel very warn and depressed. But unless I had let you into my little secret, if you met me you might not have guessed.  And that is the point.  Mental illness isn’t seen.  Nobody knows who is suffering, unless the person suffering tells you.

Say tomorrow you buy a card from a shop and notice that the shop assistant has beautiful nails and a bit too much make-up. But did you know that underneath that thin veneer the lady finds it difficult to get out of bed, let alone go to work each day because she feels like she can’t go on after she lost her husband two years ago?  In the afternoon you go to see your cousin who you haven’t seen in a while.  He seems his normal self and he talks about the movie that he saw last night.  Did you know that the reason why was wearing a long sleeve top was because he has gashes all the way up his arm – a sign of the harm that he inflicted on himself as a reaction to the bullying he had received from older girls at school?  In the evening you want to relax and go to that movie that your cousin saw.   You sit next to a man, in his 40s, who with his partner. He is quite fidgety and quite frankly a bit annoying.   If you knew him a bit better, and you knew about various mental health conditions, you might realise that he has bipolar.  The man has also always thought this – but he has never seen a doctor about it because he is scared to take the medication – the periods or extreme elation and then the inevitable depression mean that his relationship with his partner is suffering but he doesn’t know who to turn to.

In this open, diverse, multi-cultural, mutli-lingual, open to everyone society that we live in we are not as open to everyone’s behaviour as we would like to be. People cover up their anxieties with a superficial smile (and that’s OK) but other people are just not aware that that is what is happening. But as we go through our everyday routines we should be aware that that mental illness exists everywhere, in every shape and form and just being aware of that as we go about our business could help those suffering as they go about their’s.

Fashion news – for ladies – but it might interested men as well

Not many people know this but a size eight skirt can, in special circumstances, fit a person who is a size 14 (for those of you who are not British size 10/12 is as not too skinny not too fat size).  I know this because two years ago I lost a lot of weight due to depression – I went from a size 12 to a size 8.  For those wanting to lose this much weight the trick to this weight loss programme is simple – put less in your mouth, miss a meal or two here and there and don’t nosh. For me the best aspect of the programme was that I didn’t even realise that I was eating less.   However – now for the sad news.  I have now put on a lot of weight.  This is a side effect of my new medication.  I am basically on a see-food diet.  I see food and it must, no matter what, put it in my mouth. I am now a size 14 (it’s a secret – don’t tell anyone). However, and here’s the good news – some of my size eight clothes still fit me. They have to be the right type – an elasticated waist is a must, floaty is also good; the sort that you can cover up with a baggy jumper can enhance the look.  The skirts are quite comfortable and I have started to wonder what the point of clothes sizes are anyway.  So my top tip is if you are feeling a bit down about your weight – when looking for new clothes try on a skirt with an elasticated waist in a lower clothes size.  No harm in trying and if you buy a lower skirt size it will make you feel good about yourself!!!!!

Medical News

The doctor said that I should try the new medication for two months, and as I mentioned, I haven’t seen any improvement. As suggested by the Very Important Doctor I will now enter the bizarre world of going to therapy to improve my cognitive function.  I am not convinced that it is going to work but that’s the only thing that is being offered to me right now so I might as well try it out.

I have now analysed other routes available to me to find a cure to my problem. Option A – ketogenic diet (a specialised low-carb diet) which is proven to help people with epilepsy.  However, given my issues I think that I will find any dietary changes simply too confusing and therefore I wouldn’t be able to keep to it.  Option B – a neuro gym – this is one-to-one sessions with a non-medical specialist to discuss methods into improving my cognitive skills plus online training.  This is untried with people with the severe cognitive issues – it might be worth a go if I get desperate.  Option C – Investigating dementia.  Dementia and epilepsy are related because they are both cognitive disorders and people with dementia are particularly susceptible to epilepsy.  There is research that says that anti-epileptics can increase cognitive function in people with dementia – so why can’t dementia drugs improve cognition for people with epilepsy?  I did see some research which investigated that line of thinking but I can’t find it now (if anyone knows someone who knows someone who knows something about dementia please let me know). And so this story continues – even the author doesn’t know how it is going to turn out. But I will give you another chapter next week and after that we shall see.  Only the true Author, the Author of All Things knows how this story will end.

 

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20. 13th November 2016 – And Now I am 40

And now I am 40

Today is my 40th birthday.  I was going to keep it a secret, but what with Facebook and my newly found desire to tell everybody what is going on in my mind, it doesn’t seem possible.

I really wasn’t looking forward to my birthday.  Forty seems like such a milestone and here is a great amount of pressure attached to it.  If I lived in Perfect Land, when I turned 40 and evaluated my life to date, I would feel proud and humbled at my achievements and with renewed vigour I would see ahead of me green pastures and a pleasant land.  I don’t want to live in Perfect Land – it seems a bit dull.  But in Reality as I turn forty I see behind me a life lost and in front an unknown future.  But at least I know that I am not alone in dreading a milestone birthdays – plenty of people do (look at Rachel’s 30th birthday in Friends!) and there is still time in my unknown future to find a path towards a greenish and pleasant land with some dead flowers – I don’t want Perfect Land , after all.

There are two ideas I know about being 40 – firstly – ‘life begins at 40’ and secondly at 40 you are allowed to start learning the Jewish mystical philosophy of kabbalah. In fact both ideas point to the same thing – at 40 you can consolidate your knowledge of life and begin to see the world differently.

As I turn 40 I do see the world differently. I used to judge people – because their child was rude, because they were a hypochondriac or because they very easily got into arguments with others. But now I see that it is not useful or helpful and that everyone has their own problems and I don’t know why they act as they do.  I only know how I act as I do. So if I haven’t achieved everything I had wanted to at this milestone age, never mind, there is always another day, but at least I know that at this inconsequential age in my life I have turned a small corner in seeing the world a little bit differently.

In other news

I have now got much more clarity about my diagnosis.  I have been diagnosed with a dissociative disorder and my symptoms are mainly brain fog.  However, it might be that the brain fog is caused by absence seizures in which case my disorder is Non-Epileptic Attack disorder (NEAD) (a horrible name). Unlike clonic-tonic or partial complex seizures absence seizures are so short that sometimes not even the person who is having them is aware of them.  Both dissociative disorder and NEAD sit under the general umbrella category of a Functional Neurological Disorder (FND) – ‘a disorder where symptoms are of apparent neurological origin but which current models struggle to explain psychologically or organically’ (www.fndhope.org).  For some people the disorder is a reaction to stress or a traumatic event (eg being raped, seeing terror).  However, only 13% of patients successfully respond to therapy as a treatment – and I think I would be one of the 87% who don’t because I do not feel anxious and haven’t had major trauma in my life.

Unfortunately to date so called non-epileptic seizures have received a bad reputation.  Some doctors think that they are a sign of patients ‘putting it on’.  However, I can safely assure you that nobody would choose to lose awareness as well as control of their body and suffer immense brain fog and tiredness after the event ie have a seizure.  Especially if these seizures were happening several times a day and doctors could not find a medication or surgery that would help and the patient  didn’t know what was triggering them.

My case is slightly complicated by the fact that I have epilepsy.   EEG’s show that I have epileptiform activity (susceptibility to seizures) but I am not having seizures.  And therefore it might be that the activity alone is causing me cognitive difficulties. So therefore I am going to start next week a new anti-epileptic drug next week to see if that helps. If that doesn’t work I will try a ketogenic diet which is proven to help some people with epilepsy. Although, with my brain fog, I know that this will be difficult for me, there is more evidence that this works to control epilepsy than a neuro-gym or a dementia drug – which I don’t think I will be prescribed anyway.

As I said last week, I am going to take a break from blog writing for the moment.  I have seen enough doctors for a life time and now all I can do is wait and see if this drug makes a difference.  But I will keep you updated every now and then on my journey.

 

Posted on by sharonrossblog

18. 30th October 2016 Happiness vs Joy and a summary of the events so far

Last week the Jewish people celebrated Simchat Torah – the joy of the Torah.  However, I would argue that this is not a joyous festival, rather a festival which, in a very contrived way, tries to make the Jewish people happy.

The idea of the festival is a good one – Jews have had enough of synagogue at this time of year so why not end the holiday season with a party to celebrate how the Torah, the bible, enriches our life.  However, the execution of the festival is poor – the men walk around in a circle for at least an hour; the women look at them from afar and pretend to dance and the children get excited by eating sweets.  Obviously I am referring to an orthodox setting here, but, I don’t think that the customs of Simchat Torah aim to provoke a real sense of joy in any Jewish denomination.  The festival might make certain people happy but I don’t think it makes them joyful.

Jewish scholars and self-help books alike say that happiness is something temporary.  Many people are happy at their birthday party, watching a film and some strange odd balls even are happy at Simchat Torah. However, the same scholars and help-self books argue, that the real joys of life can only be found be in connecting to your partner, to yourself and for Jews at least, to the Torah. And that joy isn’t temporary and certainly doesn’t come because you are at a party – it is, I am told, much more real and long-lasting, and indeed how most people want to live their life.  Thus although I said in my last blog that some people call a succah, the temporary structure that we sit in for the festival of succot, a ‘happiness box’, perhaps that is the wrong phrase – perhaps ‘A joyous box’, is more apt – a succah can, I think, bring a real profound sense of joy, in the knowledge that you can get by quite happily with not that much.  I pray that I, and the millions of others who are in pain for whatever reason, will find that real sense of joy, very soon.

 

In other news

Just to recap the story so far in case you have lost the plot or have missed an episode or two.

The background to the story was that I have suffered quite severely from depression for over twenty years including three voluntary admissions into a psychiatric hospital.  Through an extremely convoluted process I became self-aware of cognitive symptoms which were severely impacting on my quality of life and were probably the cause of my depression.  My cognitive deficit included problems with memory, processing, problem solving, attention and decision-making and other capabilities that most people take for granted. And although I haven’t mentioned it previously in this blog – because it hasn’t seemed as important as my cognitive symptoms – I was also drowsy a lot and, since coming off my antidepressants medications,  had a huge range on involuntary movements (eg involuntary walking, making claw shapes with my hand, involuntary bowing etc).  At first I thought that my cognitive symptoms could be due to absences – 1-2 second seizures that are easy to miss – even by the person who has them. But later I came to realise that they were due to epileptiform activity – the background epileptic discharges which were happening in my brain.

I told my neurologist about my symptoms and she prescribed me to a week in an epilepsy hospital for a videotelemetry assessment.  This involved being in a room 24×7 where I was videoed and a recording was taken of my brain activity (an EEG).  Being a little bit bored in this environment I started this blog ‘Epilepsy and me’.  In my simplistic little mind I believed that by the end of the week a solution to my problems would be found.  But I was severely mistaken.  At this point I didn’t understand that my condition was rare and that epilepsy can be an extremely difficult illness to treat.

At the end of the week the neurologist said to me that there was nothing she could do for me as there were no recorded episodes of seizures on my EEG – even though I had epileptiform activity.  She told me to go home and see my GP.  Hope faded.

However, I knew that I couldn’t live like this, and for the sake of my children, I must be a more together and less depressed person and a solution to my problems must be found.  So I tried the alternative route and sent a clump of my hair off to Germany to be analysed for lack of minerals.  I took all the potions that my naturopath suggested but the brain fog continued.  And so the saga went on.

Then a doctor, who I highly respected, recommended me to Super-Busy-Very-Important-Doctor.  The NHS waiting list to see him was six months long but, not to be put off, I wrote to my MP and explained my situation and sure enough all of a sudden Super-Busy-Very-Important-Doctor could see me a lot sooner than he initially said.  At my appointment a trainee doctor listened very carefully to my story and then relayed it to Super-Busy-Very-Important –Doctor who said something like, ‘Sharon, you are not having seizures – you have having pseudo -seizures/ non-epileptic seizures.  You have a dissociative disorder.   You see Sharon – there are two parts to the brain – the neurological part and the psychological part. You have epilepsy – that is neurological.  But you also have non-epilepsy (indeed 10% of people with non-epilepsy have epilepsy as well).  Non-epilepsy is psychological. Go home and think about what the psychological cause of your disorder could be eg Were you abused as a child?, Have you witnessed mass murder? etc , Take some anti-depressants and come back when you have discovered the work you must do in therapy – the therapy will start in 6-9 months’ time.

Although, the term dissociative disorder resonated with me because I did feel separate from the world, I wasn’t so sure about his plan so I sought out another doctor for a second opinion.  In the meantime the Department of Work and Pensions, after carrying their extensive but very peculiar assessment  of me,  got back and said – we agree with you Sharon – you are too ill to work and, in addition, your disability is so chronic that we believe that the government should give you additional income so that you can manage your lifestyle.  I was pleased for the income but depressed that my life had got into such a hopeless state.

And then this week I went to see Doctor Eventually for a second (or was it third or fourth?) opinion.  He said something like ‘I agree with Super-Busy-Very-Important-Doctor – you have a dissociative disorder. However you are still having epileptic discharges. So try taking these tablets (sodium valproate –an anti -epileptic) – I can’t promise, but they might help.  It’s worth a go.’

So in conclusion no doctor really knows what is going on in my head but perhaps sodium valproate will give me a sense of the inner joy that I crave.