"My unusual health condition"
About: Warrington Hospital / Ear, Nose and Throat Warrington Hospital Ear, Nose and Throat WA5 1QG
Posted by Jane at sea (as ),
Forgive me for my direct approach, but I thought that you might be interested in my health story, it is rather unusual. "Life on the ocean wave" – a phrase that conjures up images of thrilling and exciting times, but imagine for one moment quite literally feeling that you are on the high seas every waking minute of your life, believe me then it becomes a living hell.
This all started for me over four years ago. It was Friday 13th 2001 (maybe I should have taken that as an omen). Myself and five other family members spent a long weekend aboard a luxury pleasure boat in Palma Spain. It was a lovely break; we would wake up each day to blue skies and crystal clear calm waters. After breakfast we would set sail to discover yet another perfect place to drop anchor and go for a swim, often returning at full throttle crashing over the waves, it was exhilarating, idyllic. Only one thing marred it, once back on dry land I continued to feel "all at sea" - the sink in the marina wash rooms would float up to meet me, in a restaurant the table would bob and weave about. I asked the others in my party if they were experiencing the same feelings – they looked at me as if I was mad.
Back home after a week the feelings hadn’t subsided, I felt like I was constantly walking on a trampoline or cushions. I decided to visit my GP. He said that I hadn't found my "land-legs" yet and prescribed some anti-motion sickness tablets. They didn't work, nor did any of the others that he went on to prescribe. The sensation of being on a rough sea was constant, no let up, even when lying down in bed. Everyday tasks that we take for granted became so difficult, using a computer, ironing, vacuuming etc all increased the level of motion I felt.
My GP decided to send me for an MRI scan, by now I was frantic, believing that I had a brain tumour (what else could be affecting my vision?) Thankfully it came back negative, but still no clue as to what was wrong with me. Then came a series of visits to an ENT consultant, numerous hearing and visual tests and still no positive findings. By now it was Christmas, the consultant apologised saying that although he firmly believed there was something wrong with me, he just didn't know what, especially not having any positive test results to work from. I remember leaving the hospital in floods of tears, was it all in my mind, was I going mad or having a break-down.
By the end of January 2002 I was suicidal, no quality of life left. My GP, relieved that I had something he could actually treat put me on anti-depressants. The rocking and swaying sensation was far worse than it had been on the boat, I felt constantly nauseous. Also I had developed tinnitus in both ears (never even had so much as an ear ache before this, was never travel sick) I couldn’t believe this was it, no concrete diagnosis, just labelled under the vast umbrella of a "balance disorder." I started to surf the internet for clues/answers. My GP was unimpressed, told me to lay off it as I was becoming obsessive.
In February 2002 just over six long months after that fateful boat trip I got a reply to an email I had sent to the American Vestibular Disorders Association (VEDA) explaining my symptoms and how they came about. They said from my description it pointed to an illness called Mal de Debarquement Syndrome, French for quite literally "disembarking sickness" (MdDS for short). They told me where to find further information (www.nhffoundations.net/mdds). Now I had to set about being medically and professionally diagnosed. Eventually I came across the National Hospital of Neurology and Neurosurgery in London who had actually seen cases of MdDS before. I had my first appointment with them in September 2002.
Now over four and a half years later there is no improvement, if anything I am worse, other problems have appeared, all linked and tied up in the mystery and misery of MdDS. Back then I naively thought there would be a miracle cure, some tablet I could take to make it all go away. There isn't. In June 2004 I decided to seek a second opinion, I went to the Leicester Balance Centre. Their approach and treatment is in contrast to the Neuro hospital. Who is right, what is affective, who knows? There is little research on it probably due to the medical professions ignorance on the condition. I carry on what choice have I got?
To help turn something with such a huge negative impact in ones life into a positive I try to raise awareness. Probably because of my determined "doggedness" I am one of the few lucky ones who has actually been diagnosed. As there is no miracle cure, raising awareness is crucial in helping suffers know that it "isn't all in their head". For me it just helps to feel that I am doing something positive by "spreading the word" and raising it's profile.I set up a UK basic web-site (www.mdds.org.uk) During the past two years I have had my story printed in some newspapers/woman's magazines, along with a couple of TV slot This Morning” with Dr Chris Steele, and the Richard Hammond Showat the beginning of this year. So far (sadly) I have had tremendous feedback, ranging from wanting to know more about the condition to one lady who appears to have had it, undiagnosed, for seven years! Surely this shouldn't happen in today's medically enlightened world? One audiologist in Cambridge told me they see at least one patient a month with MdDS, which makes me question just how "rare" it is. Travel is available to everyone these days, we are all aware of the risks of DVT and flying, why isn’t this the same for MdDS?
It's a horrible, cruel illness, as the guy at Leicester says everyone understands and can relate to pain, but given an "invisible" illness where only you can feel and see what is going on, produces a lack of sympathy and understanding (to the outside world you look "normal") - it's a bitter blow and makes coping with it all the more difficult. Hopefully one day enough people will be correctly diagnosed then research and trials can begin in earnest. This is my ultimate goal.
Anyway, thank you for listening.