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Mal de Debarquement Syndrome - A Life on the Ocean Wave
Are you aware of a debilitating condition called Mal de Debarquement Syndrome? Basically, this condition is an imbalance or rocking sensation, often the sufferer will both "see" and feel" this "illusion of movement",which occurs after getting off a boat or "debarking" (debarquement). Other forms of motion have been known to trigger it. Once back on dry land the traveller continues to feel "all at sea", unable to get their land legs back. Although a lot of travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many months, even years afterwards. The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs. "Like trying to constantly walk on a mattress or trampoline" is a good description of the main symptom, not to mention the others, nausea, gaze instability/visual disturbance, constant tinnitus, I could go on. As you will have gathered by now I am one such sufferer (nearly six years now) ever since I stepped off a boat in Spain in July 2001. I'll not bore you with all the details, but it took me over six months to discover just what I had, my GP and ENT Consultant (and neurologist) were baffled. MRI scans, numerous hearing/balance tests etc. proved negative. No anti-motion sickness drugs work (Stemitil, Serc etc.) so, just when I thought I was really going mad, I got a reply to an email I had sent to a large vestibular disorder association (VEDA) in America. They told me that although rare, there was infact a name for my symptoms. Imagine my relief in discovering about MdDS. Now I had to set about being diagnosed "professionally". Eventually I came across the neuro-otology department at the NHNN in London who had actually seen cases of MdDS. I was finally referred to them in September of 2002. Sadly the only "treatment" available is a set of exercises often referred to as "Cawthorne-Cooksey" which are of benefit if you have an actual balance problem with your MdDS (fortunately I don't, but many do) but they do nothing to improve the sensations of movement nor the visual aspect of this condition. In June 2004 I decided to seek out a second opinion, not that the diagnosis of MdDS was in question, but I just wanted to see if there were any other treatment options available........hard to accept if you are a sufferer of MdDS but the answer is "no." Although I cannot take away the fact that my specialist at the Leicester Balance Centre has been so supportive over these past few years. Anyway, what I find most distressing in all of this and what I would love to see change, is the lack of knowledge of the condition here in the UK and, moreover, the lack of research. There is slightly more in America (a dedicated web-site, www.mddsfoundation.org and one doctor's limited and now out-dated research) but again not enough. I understand that it is not life threatening, but it certainly is life debilitating and limiting, and I believe that there must be a great many people out there, wondering around either, at best being misdiagnosed (vertigo, menieres, BPPV, etc) or, worse, not having any hope of finding out what is wrong with them. Travel is available and affordable to all these days and we are all well aware of the risk of DVT when flying - why isn't this awareness the same for MdDS? 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 sufferers know that it "isn't all in their head" that they aren't "going mad" or having a break-down. For me, it just helps to feel that I am doing something positive by "spreading the word" and raising its profile.Whenever there is some media exposure on MdDS the feedback is overwhelming....... it ranges from wanting to know more about the condition to one lady who at the time of contacting me appeared to have had it, undiagnosed, for over seven years! (now sadly this is her tenth year with it) 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. If you want to talk to me further about any aspect of MdDS please visit my web-site at: www.mdds.org.ukand use the contact form there (to cut down the number of "Spam" emails I receive!) To join the international support group based in America which I and many others from the UK are a member of please check out the web-site:www.mddsfoundation.org From there is a link to joining. Jane Houghton |
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