Monday 3 June 2013

Spinning around

Something amazing has happened.
But before I reveal all, let me take you back a bit.

About three or four years ago - before I was diagnosed with MS - I started experiencing a bit of a spinning sensation in my head. When I lay down to bed I got a bit giddy. The only way I can explain it is when you have one or two too many sherries and you get that horrible world is spinning feeling when you lie down to sleep. You attempt to enter the world of nod with one foot on the floor in a bid to halt the nausea from the spinning but to no real avail.  

I put it down to tiredness and thought no more about it. And then a couple of days later, I woke up to find the whole world was in a mad spin. I couldn't walk unaided. I was in a constant state of fear that my stomach contents were about to erupt from my mouth and it was generally a really scary, horrible experience.
A short visit to the GP later I was diagnosed with something called labyrinthitis - an inner ear infection which can cause vertigo. 

Two weeks of bed rest *lying on the sofa with an abundance of day time telly to keep me company* and it disappeared as quick as it arrived.

A year or so later and MS welcomed itself into my life.
And as anyone who has had a recent diagnoses of MS knows, during the obligatory Google search afterwards, dizziness and vertigo pops up as one of the things to look forward to having.
Being one of those idiots who frequently self-diagnoses - not from the many years of medical training a real doctor has to do but from a five minute internet search (it's amazing what you can find at the click of a button these days) - I put down the labyrinthitis to my friend and partner in crime MS.

So now I've filled in the gaps, let's skip forward to May 2013.

Work is frantic. My hours are long and the stress levels are at an all time high. The toddler has become plagued with the agony of the crowning of the back teeth and a full night's sleep has become a distant dream for him and for me.
And lo and behold, the dizzy head is back. I bend down to pick up my bag and my head is in a spin. I turn around quickly to answer a question and my brain feels like it rolls in my skull. As I walk down the stairs I have to clutch the bannister because the stairs feel like they are racing up towards me. And then I go to bed and for a few moments after lying down it feels like I am on a boat in stormy seas. Please someone pass me the sick bag.

"It's all down to MS," I rage at my long-suffering husband.
Two weeks later and I ring the MS nurse in a fit of desperation but knowing full well that I can't be helped (see, my years of medical training have paid off...) and off I trot to the clinic fully convinced that it is all down to over work and sleep deprivation and there's nothing that can be done anyway.
Oh how wrong I was.

A quick explanation of symptoms and the neurologist declares: "This sounds like an ear thing to me not an MS thing."
Apparently I had benign paroxysmal positional vertigo (BPPV) or in layman's terms, grit stones stuck in the inner tubes of my ear messing with my balance. They needed to be encouraged to leave the tubes and this could be done using the Epley Manoeuvre.
He proceeded (with the help of the MS nurse) to throw me around the bed (not quite but kind of) and hey presto! Five minutes later and the dizzy head has gone. No more uncontrollable rolling of the eyes trying to focus when I changed head position. The spinning sensation was banished. 

Such was my joy that I immediately went home and sought out a YouTube video of what magic treatment I had just endured to cure me of this ailment. There were loads on there but here is a short one just for you to get an idea.

Despite putting up with the dizzy head several times over the last few years and unfairly blaming MS, the real reason was some pesky little grit crystals stuck in my ear tubes. 
And even better, it means that my MS monster is still in hibernation. I had feared that dizzy head was something more sinister but nope. It's been six months since my last and final treatment of Alemtuzumab and so far so good. MS has been rendered dormant and long may that continue.

And on that note, it struck me that today (3rd June 2013) is the second anniversary since MS and I became an official couple living our lives in perfect (kind of) harmony.
What a two years it has been. Lots of ups but lots more downs. But you know what, I'm ok about it. And to use a term I've stumbled across on Twitter but never believed it before now: I have MS but MS doesn't have me. Who knows how long I'll feel like this, but at the moment, it's all ok.


  1. Hi Sian,

    I've been reading your blog and was wondering how you've been faring since your last blog post. Any news you wish to share?

    All the best!

  2. Hello there!
    Apologies for the late reply.
    Well two years since my last blog post and I am pleased to say things are still really good. Not a single MS symptom (apart from the fatigue which has hit like a sledgehammer on too many occasions) in that time and I'm feeling really well.
    Happily I am expecting my second child and although feared that pregnancy would bring some symptoms on after I was plagued with MS when due with my first, so far so good.
    Things are good and long may it continue!
    Thanks for reading my blog, I hope you found it helpful/interesting.
    Sian x

  3. I have been recently diagnosed with MS...and the symptoms have only gotten worse over the years. I know now that Ive had it for at least 7's horrible. Your blog is helpful

  4. Hi Candance,
    Yes, yes it is horrible. Horrible, vile, nasty and so bloody unfair.
    I really hope you are getting some treatment and that your symptoms start to improve soon.
    Stay strong, keep fighting.
    Sian xxx