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

2 thoughts on “38. 6th January 2018 – Dear Neurologist

  1. The implication of the first idea is that epilepsy makes us similar people.
    However epilepsy isn’t even epilepsy it is the epilepsies so a neuro would have to get to know many types of neurological condition relating to many different individuals. The epilepsies don’t turn us into uniform epileptics. By getting to know some of you in depth your neuro is doing a disservice to other patients. Who to choose?
    Joining a forum? Only to find out one of the patients is on line giving their side as they see it that their neuro is a total basket case. Which said patient is entitled to say in the forum. How will anonymously watching neuro feel? Ethics! How would patient feel if they realised the blunder somehow.
    Regards the drugs, no one is lying. They have a general idea of the range and extent of the side effects of each drug but some people have genetic predispositions towards a particular one, some side effects are dosage dependant…they have an idea but they can’t be sure if something will go pear shaped.
    I was given topirimate and found to have innate tolerance to one generic, far too scared to try others. The seizures started after 3 days. However I was fine on Topamax.
    Yes, I agree they can be startlingly cagey, (Topamax ‘you might loose a little weight’ – a stone and a freaking half! I spent 10 yrs trying to put it back on! Keppra – it might make you a little agitated. It was actually fine until you doubled the dose and buggered off to New Zealand, comments like the last one are what I tend to continue with add to my argument against neuros in forums. ….Hi Bethany).
    However, due to our uniqueness and the individuality of drug response I don’t think they out right lie, just fuzzy the lines of the truth a bit because they don’t have a crystal ball.

    Like

    1. Thanks for your comments. Obviously, I based this blog on my personal experience and my personal experience is that my neurologists have not overall tried to get to know me. I am based in the UK, and go to an NHS hospital in London. As you rightly say everyone with epilepsy is different but I also think if the doctors learnt more about their lives they would see some similarities eg high % mental health issues, high % employment issues, high % with cognitive issues. From my perspective it would be better if they knew more some patients live than they took no interest at all. My own personal experience with meds is that I was not told about the cognitive side effects of the meds and it is not measured. The doctors seem v happy to prescribe. I have also written a blog on how epilepsy is not just a seizure condition and I think that that is my overall position – that neurologists treat it as if it is just a seizure condition – that is all they are interested in finding out about but in fact it impacts on your whole life – https://sharonrossblog.com/2018/01/30/epilepsy-not-just-a-seizure-disorder/

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s