Living & coping with Disembarkment Syndrome (MdDS) - an interview with a long-term sufferer
Motion-Sickness-Guru.com's information about Disembarkment Syndrome (MdDS) is consistently one of the site's top-ranked pages, so I am delighted to bring you this interview with Jane Houghton, founder of MdDS support group mdds.org.uk and MdDS sufferer since 2001.
In addition to giving solid information and advice, Jane is a great encouragement and inspiration, proving that debilitating though MdDS can be, there are
ways of coping with it.
Jane, thank you so much for agreeing to answer some questions about Mal de Debarquement Syndrome. I know that a lot of Motion-Sickness-Guru.com's visitors are searching for information on this distressing 'reverse seasickness' condition, so what you have to say will certainly have an appreciative audience.
First of all, can you tell us what triggered your MdDS?
My MdDS started back in July 2001 when I spent a long weekend onboard a small boat (it slept six of us) in Palma, Spain. During the day we took the boat out to sea, and one evening when I went onshore to use the marina washrooms I noticed that I still felt as if I was on the boat - I could both see and feel the motion, and the sink appeared to float up to meet me. I recall being in a restaurant on the quayside and the table was bobbing and swaying...
So you've now had MdDS for over a decade! In that time, have you experienced any changes or improvement/deterioration in your condition?
Yes, it's almost 11 years since I got MdDS. I have never had a period of remission in all that time. Over the years some of the symptoms have altered and changed slightly, but sadly the main one - the sensation of movement - has remained the same.
For the first 18 months I actually felt nauseous and sick with all the phantom motion, but thankfully that eased, and nowadays I only feel nauseous on a particularly bad day, when 'my seas' are extremely rough!
Three months into getting MdDS I developed tinnitus in both my ears and it has remained with me ever since. I now find that laying down eases the feeling of motion, but for several years I likened it to sleeping on a water bed (although I had never had any experience of that!) - suffice to say I could still feel the motion when lying down.
Are there circumstances where you feel normal again? For example, on a boat, or on other transport?
Yes, those who suffer with MdDS always feel better when back in motion. This can be any kind of transport, and since I have had MdDS I have been back on boats, planes, trains, cars, even white-knuckle fair-ground rides. It is the only time we feel 'normal'.
Why this is we, as yet, do not know. There is a theory that the actual motion masks our MdDS, but of course, we need research to discover the truth.
MdDS is still a little known condition. Did you have problems obtaining a diagnosis? How helpful was your family doctor?
Trying to get a diagnosis was the darkest period in my life. It took me over a year to finally get an official one. My doctor initially treated me for motion sickness. When there was no improvement, he sent me for a MRI brain scan, thinking it must be a brain tumour because what else could be affecting my vision in this way? The scan came back clear (thankfully!) and the neurologist couldn't find anything wrong with me. I was then sent to an Ear, Nose & Throat (ENT) specialist. Once again after a battery of tests all the results came back clear or normal. The specialist knew I had something wrong with me, but didn't know what, so I was labelled as having a balance disorder, despite the fact that my balance was perfect.
I felt like I was being cast-aside, overlooked, and I started to wonder if they thought I was making it all up, that it was literally just all in my head. I began to think that I might be having a breakdown. After all, nothing showed up in any of the tests.
I spiralled into depression, and my doctor, relieved that he could actually treat me for something at last, put me on antidepressants. But that was all he did. I remember visiting him when I was still desperately trying to discover what was wrong with me and asking him for the details of a vertigo support group (vertigo was the only thing that seemed to be slightly similar to what I was experiencing, although I wasn't experiencing spinning sensations), and he couldn't even provide me with that.
As desperately low as I felt, I refused to give up on searching for a diagnosis. I refused to be fobbed off with the 'one size fits all' label of having a balance disorder. I started searching the Internet for answers, at which point my doctor told me, and I quote, to "lay off it as you are becoming obsessed."
My goodness, it's clear that you needed real determination and perseverance to keep going through this period. Fortunately, you did finally find some light at the end of the tunnel, didn't you?
Yes, in February 2002 I received a reply to an e-mail I had sent to the Vestibular Disorders Association (VEDA)
in America. I had told them my story about being on a boat back in July 2001 and how I felt like I had never gotten off it. They said that everything pointed to a condition called Mal de Debarquement Syndrome (MdDS). I searched out what little information there was at the time on MdDS and was ecstatic - I could relate to everything about the condition!
But of course that was just the beginning because I then had to find someone in the UK who recognised and had seen cases of MdDS before. Once again I turned to the Internet and eventually discovered the National Hospital of Neurology & Neurosurgery (NHNN)
in London (England). They said they would be happy to see me, but I had to get a referral from my doctor first.
I explained to my doctor that I truly believed that I had MdDS and would like it confirmed at the NHNN. I had printed out information on MdDS and, to be fair to him, he did look it over and was decent enough to agree that a diagnosis of MdDS seemed likely. He even (almost) gave me an apology in that he said "maybe sometimes we should listen to our patients." My appointment at the NHNN took place in September 2002 and I finally got the diagnosis I had worked so hard for.
That's quite a story, and certainly shows that it pays to be persistent. Having a diagnosis must be an enormous relief, but what research, if any, is being done into the causes and treatment of MdDS?
I work closely alongside the American MdDS Balance Disorder Foundation
, and their amazing efforts with a very limited budget have helped to fund some tentative research since 2008. We don't yet have concrete answers as to how and why MdDS happens, and what is the most effective treatment for the condition, so we still have a long, long way to go. However, for the first time hope is on the horizon for those of us who suffer with MdDS.
How has MdDS changed your life?
MdDS has changed my life dramatically, not least in that I was working full time when I got it, but since my job involves so much computer work, which can aggravate my symptoms, I have had to cut back over the years. As a result, I now work barely part-time. So there has been a massive financial impact as well as a social one.
I do run the UK MdDS website, www.mdds.org.uk
, which of course does involve a lot of computer work. It helps that I am my own boss and can do as much or as little as my symptoms allow on any given day.
Regarding day-to-day life, I try to go shopping in the quieter, off-peak times, as too much visual stimulus along with crowds of people can provoke my symptoms to a higher level. Any social event is extremely challenging, and although I do go out to events, I will often pay the price the next day in increased symptoms.
You've already touched on this with the tip about choosing quieter times to go shopping, but what other advice can you give to others on coping with MdDS?
The biggest piece of advice that I have for those with MdDS is to take advantage of all the help and support that is out there. While there is still not nearly enough, the amount of support available is far better than it was a decade ago. Try out all the coping mechanisms and therapies available to those living with a challenging long-term condition. Had Cognitive Behavioral Therapy (CBT)
been on offer to me back in the early months and years when I was struggling with MdDS, then I would certainly have chosen to use it. The first years of MdDS were so very damaging, and I truly believe if I had received more help and support at the beginning, then the outcome might have been different for me, in that I might not have had MdDS for so long. More help and support would certainly have been beneficial and would have made me better placed to deal with MdDS
In addition to embracing help and support, I would strongly encourage those with MdDS to try their best to continue to live life to the full. Tragically, I know of too many people who have closed down their lives because of the condition. But this approach doesn't leave them any better, and certainly isn't a cure, so why let your MdDS take over and win?
It's not easy - I will be the first to admit it - but I am a great believer in gradually exposing myself to 'trigger situations', so that, over time, they do not aggravate my MdDS symptoms as much. For me, reading is a particular case in point. In the beginning, MdDS left me struggling to read at all. But I love to read, so I decided I wasn't going to let MdDS rob me of that pleasure.
I persevered with reading and although, as I say, it wasn't easy, over time I found I could read a little bit more and more, until finally I was OK with it once again.
Thank you so much, Jane. I'm sure your experience and advice will be a real inspiration to others who find themselves suffering from the symptoms of MdDS.
I do hope so. Years ago someone wrote: "I've got MdDS, but it hasn't got me." I think that should be our mantra.
Visit Jane's website at www.mdds.org.uk
. She can be contacted
via the website.