Living with mal de debarquement syndrome

pharmafile | July 1, 2019 | Feature | Business Services, Manufacturing and Production, Medical Communications, Research and Development, Sales and Marketing patient experience, pharma, rare disease 

Polly Moyer reflects on her experiences living with the rare condition mal de debarquement syndrome, and discusses how connecting with other rare disease patients in professional and personal contexts has helped her maintain optimism. 

Can you provide a bit of background on mal de debarquement syndrome?

MDDS is a rare neurological condition which is usually triggered by disembarkation from vehicles such as ships, planes or trains. The main symptoms are a sensation of motion – rocking, bobbing, swaying – often described as the feeling of being on a boat when you’re not. Some people have it episodically, whereas for others it is continuous from onset or may become constant later in life. Other triggers, such as c-sections, are becoming more widely recognised.

An interesting feature of MDDS is that many patients report that symptoms abate when we are re-exposed to passive motion, for example when in a car or on a train. This is a useful observation for the diagnosis of MDDS. Unfortunately, subsequent disembarkation can hike symptom levels, so the bliss of being symptom-free is short-lived.

Additional symptoms and co-morbidities can include migraine, impaired cognition, light sensitivity and exhaustion. Anxiety and depression may develop, especially if people with MDDS lose their livelihoods and independence.

Can you walk us through how you eventually reached your diagnosis? How long did the process take? 

I was diagnosed remarkably quickly after being triggered by a train/car trip. I delayed going to my GP because, based on previous experience, I thought the symptoms would go quite quickly. When this didn’t happen, I went to my GP and was told I’d get tests and a consultation with an ENT specialist eight weeks later. The waiting time was built-in because the GP said that symptoms would often resolve in that time, so I felt foolish for waiting so long. Three years previously I’d had a short episode triggered by a long haul/short hop flight combination, and I think that made it easier for the consultant to diagnose me with MDDS and predict that I would go into remission eventually. Unfortunately, the ‘covering-our-backs’ MRI he ordered hiked symptom levels to the point where I had to take time off work.

What was your experience of the diagnostic process? How would you like to see approaches improved for rare disease?

It was a bad experience. The ENT consultant was very unpleasant and made several inaccurate assumptions about me. His assistant told me he was like that with everyone, which was reassuring, but not in a good way. The information he gave me was contradictory and also contradicted by the information I got from a technician following the tests I had, so it was very confusing.

When symptoms became chronic, I was re-diagnosed with more sophisticated tests and learnt more about why I was prone to developing MDDS, which was helpful.

A report from Rare Disease UK indicates that the main barriers to diagnosis with a rare condition are that patients are not believed and/or get told their symptoms are psychological. It’s rare that I go to a rare conditions meeting and don’t encounter someone (usually female, but not always) who hasn’t been threatened that their primary care support will be removed if they don’t accept a ‘functional/medically unexplained/conversion disorder’ diagnosis. Strangely, this can happen even [after] diagnosis with a recognised medical condition. Even doctors with rare conditions can get gaslighted into believing their symptoms are ‘medically unexplained’, as evidenced by Dr Lisa Steen’s posthumous blog entry ‘The wilderness of the medically unexplained’ in the [BMJ]. This needs to stop.

In an everyday sense, in what ways does the condition impact your life?

MDDS cost me my primary and secondary careers, my transatlantic marriage and my chances of studying for a PhD. Although I try not to grieve, these losses are present every day, along with the symptoms. I’m fortunate to have financial support from my family but found it hard to ask them for this. Daily chores take longer than they used to and I find it difficult to multi-task, although my cognition improves during the summer.

What strategies do you employ to help you cope with this impact? Are there any behaviours or activities that you indulge in that you find particularly helpful?

I’ve learnt to ask for help when I need it which wasn’t easy. But losing my independence has enhanced my pre-existing ‘attitude of gratitude’ and my empathy for others in similar situations. Fresh air and exercise helps me keep symptom levels down so I walk regularly. Adaptive lenses help too – for me, vista mesh lenses work best – as does taking regular breaks from screens.

What kind of treatments or therapy have you received to manage your condition? Are there any drugs available or have you had to rely on other interventions? Have these helped?

Early on I was given anti-nausea medication despite not feeling nauseous. It made symptoms much worse so, on the advice of my Dad (a retired GP), I stopped taking it. I was told to do physio, then told not to and then got told off for not doing it. *Sigh*

It’s not clear that any medication helps consistently and I don’t think there have been any clinical trials for drugs for MDDS so I rely on some supplements and as healthy a diet as I can afford.

There are two trialled treatments for MDDS: cranial stimulation and full-field optokinetic stimulation. But neither are available on the NHS, and few of us can afford private treatment. However, I am still celebrating that Dr Cohen, one of the people who developed the optokinetic protocol, was also one of the people who won a major award from Frontiers in Science. This will help raise awareness about MDDS and other neuro/vestibular conditions.

Have you sought and found support from patient groups or connected with others with MDDS? What did you learn and how did it affect your experience of living with the condition? 

I didn’t join the support groups for a long time, but when I did I learnt a lot from other patients, including those who had been fortunate enough to be diagnosed by key researchers in the field. From those who hadn’t, I learnt that my bad experience of being given the diagnosis was very mild compared to many others. I also contacted some of the researchers and have subsequently worked with and met several of them. They are part of the reason I can say ‘I have MDDS, but it does not have me’.

Currently I am one of the admins for the UK MDDS group which has over 260 members. I wish I could clone my current awesome GP and gem of a neurologist for all of them. There is also a public Facebook page: Action for Mal de Debarquement Syndrome UK.

As an active member of the wider rare conditions community, what parallels or commonalities have you noticed?

I used to blog for Findacure, so I interviewed several people with rare conditions and there were several parallels, including reports of people feeling that luck played a big part in their diagnoses. In the rare conditions world there are many horror stories about our diagnostic odysseys and subsequent treatment in primary care, but there are some success stories too and organisations like Medics4RareDiseases give me hope for the future. Working with Findacure, the Cambridge Rare Disease network and others have been positive experiences for me and I am grateful for the opportunities they’ve brokered for me. 

What do you think your experiences have taught you? Is there a positive lesson from all of this?

As a result of getting MDDS my understanding of neuroscience is much better, as is my understanding of the value of translational research and inter-disciplinary/international collaborations.

Increasing acknowledgement of patient expertise is a positive step forwards and when we are empowered to be involved in research and development, positive change is possible. Two years ago I met Professor Floris Wuyts, one of the key MDDS researchers, who studies space flight science to learn about the human balance system. He says ‘the future is bright’, and I agree – provided we can leave the ‘conversion disorder’ paradigm behind us – and feel that this is true for all patients with rare conditions, and even more common ones.

Related Content

FDA approves first ever treatment for rare CHAPLE disease

The US Food and Drug Administration (FDA) has approved Regeneron’s Veopoz (pozelimab), a new treatment …

FDA approves IMIDEX’s AI-powered device VisiRad XR

The technological pharmaceutical company IMIDEX has been granted clearance from the US Food and Drug …

Artiva Biotherapeutics announces FDA clearance of IND for AlloNK and Rituximab combo

On 16 August 2023, the US Food and Drug Administration (FDA) officially cleared Artiva Biotherapeutics’ …

Latest content