Many of you know about the problems my husband Ian Thomas, who is only 46, has suffered because of Meniere’s Disease.  Ian’s first unexplained attack was in December 2011, aged 41, with a further three happening in 2012.  At that time neither of us had ever heard of Meniere’s Disease and had no idea what had happened to him during these unexplained attacks.   Meniere’s Disease had been mentioned by Ian’s GP but not a lot was on offer in the way of help and we thought that was the end of it – just some unexplained random attacks never to be seen again.

How wrong we were!   On 1^st March 2013 whilst travelling back from a 40^th birthday trip away, Ian had the most awful attack at the side of the road which kept us there for a good two hours before we could get him back in the car.   The drive home, all on back roads, took all day from just north of Carlisle to Richmond, North Yorkshire.  We were terrified at what was wrong and did consider calling an ambulance but Ian just wanted to get home.   

That was the start of something that has plagued him since then until the present day.  Attacks that were happening every few days or weeks, attacks so hideous that made a grown man bounce off walls going up the stairs to the bathroom where he would stay for 3-4 hours being
violently sick, the room spinning, the toilet moving left and right before his eyes, going clammy and cold and then wanting to sleep for a few more hours until things were “normal” again.  Ian
has not suffered drop attacks like some people, just an awful sense of everything moving around, his eyes trying to follow it and not being able to walk, just desperately trying to hold on to a firm structure along the way to safety; and of course the violent sick episodes. 

Ian’s GP started asking a lot of questions about any knocks to the head he could have had and at that time, Ian had suffered a few whilst enjoying a day of speedway riding for a friend’s 50^th birthday!   He was referred for a head CT scan in August 2013 which thankfully came back clear – much relief!  However, the attacks continued and it was during one that we managed to get him to the GP’s whilst it was in full swing.  The doctor was very shocked and said he had not seen anything like it during his near 40 year career.   At this point we asked to be referred to a private consultant who specialised in these disorders.   We were told of the various treatment options and how there is no cure, just the hope that treatments would reduce the severity and frequency of the attacks.  This is a blow as anyone with Meniere’s will know.  Doctors were keen to sign him off from work but as Ian owns his own business, this wasn’t really an option.   In March 2014 he underwent the endolymphatic sac decompression operation which we were told could give an approximate two year relief.   This was not to be, Ian got four months.   He takes three different medications three times a day, every day.  These were clearly not working to any real effect and back to the private consultant we went.  The next round of treatment would be the Gentamicin injections, carried out weekly in very small doses with the aim of destroying the balance nerve to give more long term relief.   These started in January 2016 and have just finished – June 2016.   Now it’s a waiting game.

After the above treatments it is now time to reduce the medications.   There is apprehension in doing this as the last time, the attacks surfaced pretty quickly.   Life changes with such a random disorder such as Meniere’s and all the while you are very grateful it is not life threatening, it is certainly life hindering.  As avid motorbike enthusiasts for the last 22 years, it has taken away
this pleasure.   Travelling is done with a supply bucket full of things needed for an episode of severe sickness and the dread that it happens at an inopportune moment (which it has).   Worse things can happen to you and we understand this.  Meniere’s is a long term progressive disease with the real possibility of it occurring in both ears.  Hearing is affected and tinnitus is the other not very nice symptom to suffer alongside Meniere’s.  There also needs to be a better under-standing of how it affects greatly the people most close to Ian including his work colleagues who have very often been left in the lurch.

We would now like to do something for the Meniere’s Society who don’t receive any funding other than from donations.   Our aim is to be able to complete the Yorkshire Three Peaks Challenge in May next year (2017) and we will confirm the date in due course.   https://www.threepeakschallenge.uk/yorkshire-three-peaks-challenge/route

We also hope that by making regular donations in lieu of birthday/Christmas cards and gifts, it can go some way to funding more research and helping sufferers in the future.  Whilst we very much appreciate all the cards and gifts we receive, we would now like to ask anyone who normally does so would instead please donate a nominal amount to the Meniere’s Society through this page in our names. 

We have contacted the Meniere’s Society and received a fundraising pack should anyone like a copy.  Thank you for reading this page and for any donation you make - it is very much appreciated.

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