Imagine being put on a kids roundabout (like the ones you would find in a playground) and being spun at 50mph for 5 minutes.  All of the horrible sensations you have in your first 30 seconds of getting off, is like having an 'episode' of Meniere's.  Unfortunately though, these sensations lasts for hours with no medication having any immediate impact - it's just a case of riding it out. It's like being on waltzers that just don't stop.

The reason I am supporting this charity is because on the 18th March 2021, my ENT consultant changed my status from 'suspected Menieres' to "you have it" after suffering with these episodes since Christmas 2020.  The Society have been so supportive in helping me understand and cope with the condition during the early stages of symptoms and therefore I feel it is only right to give something back.

What is Meniere's and could I get it?  In short, Meniere's is made up of 4 component parts - fluctuating tinnitus, fluctuating hearing loss, pressure on the side of the face and 'episodes' of acute dizziness and imbalance....and yes, you could get it. All adults are susceptible but thankfully it is rare in children.  I now know that I was a prime candidate as I am between 40 & 50 years of age...which just so happens to be Meniere's favourite age group.  Gender is irrelevant as Meniere's is not prejudice!  Meniere's came storming in to my life on the evening of the 23rd Dec 2020 whilst sat on the sofa watching tv.  It inflicted the first 'episode' and since then, I have had a disconcerting amount of them. This was an unwelcomed surprise given that I have no previous medical conditions, happy in home & work life and consider myself as active.  I'd even just done a 9km run the day before.

So what is an 'episode'?  It's hard to accurately describe the intensity but hopefully the analogy in the first sentence assists with your understanding. Personally, mine last between 3 to 5 hours where the world spins uncontrollably, complete with all the physical symptoms and associations. The word 'debilitating' doesn't even come close - it's like being extremely intoxicated but without the enjoyment!  Even after the episode, it takes hours for vision and hearing to return to normal and you are left with 'brain fog' and incomprehensible exhaustion. Episode frequency and duration varies from person to person but a recurring theme in most cases, is the suddenness of them with no reason or even trigger. My only saving grace is I get a 5 minute warning where I have a distinct reduction of hearing in my left ear.  I then have 5 minutes to 'prepare' and then boom...I'm on the 'dizzy bus' to destination bed...via the bathroom! Even when I'm not having an episode, I feel off-balance, headachey, groggy and on occasions, I have thought my house is collapsing as the room has been on a 30 degree slant for the whole day.  Talk about anxiety inducing!

Is there a cure?  Officially no - there is no silver bullet.  However, meds, vestibular rehabilitation and steroid injections in to the ear drum, can help manage the symptoms. In a worst case scenario,  surgery is possible where the labyrinth is removed but this is not a preference of any ENT specialist as other complications are highly likely. However, there is some good news... some people live with it for years and years and then it just burns out.  I am at the stage now, where the meds have kicked in and the episode frequency and duration are slowing down, albeit I have daily reminders in some form.

What you doing Jonty?  Obviously, I want to raise awareness of the condition, but more importantly, I want to generate some money for the society as a token of my appreciation of the aforementioned support.  Quite simply, without donations, the society would not exist. As Meniere's is not a 'mainstream' condition, one thing that has become very apparent is how little funding is given for research and development.  Testament to that statement; how in 2021 is there still no known cure for a condition that that was identified in 1861?  This can't be right!  

All of 2021.  I am not going to rest on my laurels and expect people to donate on the basis that they know me OR have read this - although please feel free to!  Throughout 2021, my intention is to do various things to raise money / awareness for the registered UK society.  If you are reading this then I am 'doing something' for you to donate.  At this time of writing, I have plenty of ideas but I've not quite plotted out what it'll look like - it all depends on what my new found friend has in store for me for this year!  I have however, set my minimum target of £2,000 which seems like a big ask but if my 693 facebook friends donated just a mere £2.88 (the cost of a northern pint!) that would be minimum target achieved!

Now what?  Any donation(s) are gratefully received.  Whilst I fully appreciate some may not be in a position to donate, please could I ask that this page is shared on your social media platforms to raise the profile of the Society.  

So, this just leaves me to thank you for visiting my JustGiving page and for you to do something that will make you feel good today - whatever that looks like!

Usual stuff.  Donating through JustGiving is simple, fast and totally secure.  Your card details are safe with JustGiving - they'll never sell them on or send unwanted emails.  Once you donate, they'll send your money directly to the charity.  It's the most efficient way to donate - saving time and cutting costs for the charity.