The story of Polly
A UK patient perspective on Mal de Debarquement Syndrome.
Although it is coded as an inner ear condition, Mal de Debarquement Syndrome (MdDS) is now considered to be a rare neurological condition. It is usually triggered by disembarkation from planes, ships, trains or any other moving platform, including treadmills and elevators. The main symptoms are a sensation of rocking, bobbing and swaying but people report other symptoms including ataxia, cognitive impairments, nausea, insomnia/excessive sleepiness, migraine (sometimes ‘silent’, sometimes not) and gravitational pull. Like any long-term health condition, MdDS can result in situational depression and anxiety since many of us lose our careers, our ability to study, our ability to fulfil family roles or maintain friendships, our ability to do basic household chores and our financial independence. Unfortunately there are still some health professionals who put the cart before the horse and attempt to gaslight patients into believing that anxiety and depression cause the symptoms and it is regrettable that this happens for people with other rare conditions too. Anxiety/depression may be a predisposing factor for developing MdDS for some of us but there are many others, including; genetics, a history of head/neck injuries, a history of operations, being born with a ‘lazy’ eye/lack of binocular vision and mineral and vitamin deficiencies.
An interesting feature of MdDS is that many patients report that most of the symptoms go away when we are re-exposed to passive motion eg when we are on trains or driving/being a passenger in a car, although we often feel worse after the journey is over. For some people MdDS is episodic (I was fortunate to get lots of remission time in the early years) whereas for others it is permanent. It is more common in women than men which often means that it is harder for men to get diagnosed and one man in the UK group reported that his diagnostic odyssey left him with ‘mental scars’ due to the way he was mistreated by health professionals.
Compared to the last two ENT consultants I’ve met (who were lovely), the one who diagnosed me was very unpleasant but at least I was lucky to be diagnosed remarkably quickly after a second onset from a motion trigger. For some people with MdDS it can take many years, many doctors and many misdiagnoses (persistent postural-perceptual dizziness, known as triple PD, being a common misdiagnosis) before they are accurately diagnosed. I was also lucky because – although I wouldn’t wish this condition on anyone – my elder sister had experienced similar symptoms for 2 years (long before I did and without getting a diagnosis) so I had family understanding and support (including financial support) which a lot of us lack.
Although initially the researchers focussed on motion-triggered MdDS, more recently they have been looking into onset of MdDS symptoms from injuries and operations, including c-sections and the rare occasions when MdDS presents out of the blue, known as ‘spontaneous’ onset. I try not to have favourite case studies but repurposing is important in the rare conditions space so although I was motion-triggered I found this case study about the treatment of a nurse with spontaneous onset very interesting. I’d hope that our National Health Service could be able to provide something more sophisticated than a repurposed garbage bin but if not, we’ll take what we can get 🙂 https://academic.oup.com/milmed/article/…/11-12/e775/4999175
There are many environmental factors that can alter MdDS symptom levels for better or worse (such as changes in barometric pressure, audio-frequency changes, altitude changes, exposure to bland/busy visual environments, exposure to open/enclosed spaces, lux level changes, flickering lights and screens etc) and hormone fluctuations also have a big impact so I am delighted that this has been studied now and further investigation into this aspect of MdDS is warranted.
When I joined the support groups at the request of our family GP, few of us dared to hope there would be treatments available for MdDS in our life-times. However our awesome researchers have done wonders and there are now two treatment options and more in the pipeline. I find it interesting that some of the MdDS researchers (two of whom have or have had MdDS themselves) also study the effects of space flight travel on the brain since MdDS can make us feel that gravity has gone AWOL, along with our internal global positioning systems. One lovely GP I met said ‘MdDS presents like concussion’ so it doesn’t surprise me that some of our researchers also research concussion.
Although the UK is behind with the research, I hope that treatment trials of the opto-kinetic stimulation protocol devised by the late, great Dr Dai and his colleagues, will start soon. There are many rare neurological conditions and MdDS is described as the ‘quintessential neurological disorder’ by Dr Cha, one of our lead researchers. Times are hard for many of us at the moment but if you can contribute to the crowdfunding campaign for MdDS, people with MdDS throughout the world – and our wonderful researchers – will be very grateful 🙂 Here’s the link:
https://crowd.science/…/research-into-the-pathophysiology