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 Sailtales do not recommend giving out email addresses on this site. Jane Houghton and some of those commenting below can be reached by writing to skipper@sailtales.co.uk However, please bear in mind that not all contributors leave any contact details. Comment from Justine Gatton

started 12 years ago on a long flight, felt very odd for the whole time i was away and still on the move for a week when i got back . every hoilday after that my symtoms got a little worse, lasting longer each time i got back . Then june last year i went to Venice {bad idea} got left with the on the boat feeling for weeks this turn in to a floaty swimy light haeded feeling which this been with me until very recently. having got nowhere the hospitals and doctors i decided to go to acupunctune . this has change my life after 6 treatments i feel free of my symtoms and have just got back from a trip to Iceland an amazing place and even more amazing i feel fine! still might have to have the odd top up treatment in the future but i can live with that. justine gatton age 35 Comment from: abrant

Justine, Can you describe in a little more detail your accupuncture treatments, and who did them? We have a site of approx. 360 persons who suffer from MdDS, and so far no one has mentioned any success with accupuncture. Comment from: annon

I took a 4 hour ferry crossing, followed by a couple of short ferry trips island hopping whilst on holiday. After 4 days I suddenly felt the sensation of being on a boat (swaying, imbalance) whilst on land. This sensation continued constantly for 3 months, often feeling much worse in the evening, especially if tired ... read more Comment from: Saffron Johnson

I live in Australia and flew to London to visit my daughter. When I got off the plane I noticed I had the swaying, like walking on an air bed in a swimming pool. When I went to bed that night I felt like I could feel the force of the aeroplane landing in the centre of my back in the thoracic region. A really weird feeling. I have previously experienced the swaying/rocking sensation after being on a cruise boat for 3 days. The swaying sensation went after about 6 weeks. This time it has not left. I have had Mal de debarquement for 3 years. It is very ... read more Comment from: Peggy Eddy

Hi, I thought I was going crazy until I came across this web site on this problem. I have been on 5 cruises, and after everyone I've had this motion problem. The first time, I had every test done by ENT drs., and Neuro. drs. Their response is to not take cruises anymore. Mine usually lasts for 6 months, and this past time, we went on my LAST cruise in May, and I don't have the patience for it anymore. I hope someday they can find a cure for this, I'm 55yrs. old, and I've had enough. I'm going to call my dr to see if they have heard of this, and see if anything new has been discovered to help. Thank you for all the info. Comment from: Carole

l woke up one morning to find l was just swaying my balance had gone l feel as though l am going to fall l cannot concentrate on anything. l have been for a MR scan and now waiting to see the neurologist consultant. they did say it could be blood pressure nerve endings l dont know what he is going to say until l see him end of this month but in his letter he seems to be saying things that everybody else are being diagnosed with l dont feel very hopeful this as gone on for nearly 6yrs and l feel so debilitated frightened and restricted l am frightened of going anywhere please can anyone out there help thanks carole. Comment from: Laura Greco

I recently went on a three night cruise and after two days I starting feeling as if I was back on the boat with the rocking sensation that so many people have experienced. I describe it to others that it's like being in a fun house where the floor rocks undernieth you. My perception is also distorted and I avoid looking too far ahead or walking fast. Prior to my trip I was under a lot of stress and had been working 65-70 hours a week for a month. As others have stated it's probably stress related. It's only been a short time for me, but I feel as if it's getting worse not better and it's scary to think that it can go on for years. It's definately not something others can relate to and they have no idea how challenging it can be to get through the day as if nothing is wrong. I go to an ENT DR. tomorrow, but I'm convinced with the research that I've done that it's MDD. It's true that I feel better driving, even riding a bike, and staying in motion definately helps. Now when people ask me how I am I answer "the waters are choppy today" or "the sea is calm right now". My father is a sailor, maybe I was meant to stay on the boat! Humour helps. Comment from: Sandra

I am actually quite relieved to read this article and the comments as I did wonder if I was imagining my symptoms. I have had this feeling when I flew long haul a few years back and I just put it down to jet-lag. I have recently been to Barbados and whilst I was fine when I arrived there, I started with the "swaying" sensation after a 4-hour boat trip. I must admit it isn't serious and doesn't affect my day to day activities but it is constantly there (I’ve only been back 2 weeks) and I was beginning to wonder what it was. I have suffered from vertigo attacks in the past and thought maybe it was related to that but now I’m not so sure. I just hope my symptoms diminish very soon. Comment from: jdgnyc

I swing back and forth from MdDS to BPPV. I did have a head injury but I was on a boat too and it immediately started 6 years ago. I have had success with acupuncture and treatment for FLEM not in the western sense of the word, the eastern sense, meaning foggy or cloudiness. Ask your acupuncturist to treat FLEM/Gallbladder vs Spleen and you may have some luck. I've been going for 14 weeks, 2x a week and I am seeing results. If interested I can get the exact points for you. still really hard to sleep but taking one day at a time. Contact via skipper@sailtales.co.uk. Please state JDCNYC in your message. Comment from: Theresa

Why is there so little info about this. So many people suffer from this and I know first hand that Its disabling. Maybe we can try to come up with atleast the cause of this crap on our own! Not everyone gets this,right... so maybe theres other problems that we all share that have nothing to do with it but causes it to happen. If we all compair our other problems and find common ones maybe we can stop it before it starts. For instance...I am a mouth breather because my nose is always stuffy. i dont drink alot of water , i eat very low sodium diet but when i travel especially on cruises , i eat alot of junk and my body hold so much water that i gain 10 lbs in two days because of all the salt that my bodys not used to.. Maybe i sound crazy but i feel like its worth a try sense theres not much else we can do. I REFUSE TO LET THIS CRAP CONTROL MY LIFE,i love to travel and this thing is stopping me Contact via skipper@sailtales.co.uk. Please state Theresa in your message. Comment from: Annon

Did anyone ever hear from Justin about his acupuncture experience? I'd love to know more about it I developed MdDS in 2007 after a seven-day cruise to Alaska and so far I can't find anything that relieves the symptoms. Contact via skipper@sailtales.co.uk. Please copy the post into your message. Comment from: Elizabeth

I have been suffering with being disorientated for over 3 years. I feel I am continualy moving and it's worse when I sit down to relax or go to bed. Work is difficult too as I work in an office and I am having problems focusing between looking at the screen and printed spreadsheets. I went on a sailing trip for 4 days and was fine when on the yacht, but back on dry land was dreadful. I find that when I am stressed or ill it's worse, sometimes I cannot sleep as I cannot settle. Walking, dancing and travelling seem to alleviate the symptoms it's just when I stop. Driving is sometimes impossible as my judgement and vision is impared. I have had the eye tests, ear and balance tests, and MRI all showed I was fine! I love to travel so I won't let this stop me and I refuse to give in to it. Contact via skipper@sailtales.co.uk. Please state Elizabeth in your message. Comment from: Christi

After being on a cruise this summer, I developed what is known as Mal de Debarquement Syndrome. I researched the web and learned about the symptoms, as well as the fact that many people who suffered from this syndrome had not been able to find relief or a cure. To live with ongoing dizziness and fatigue is horrible, to say the least. But I did find a cure and I want to share it with others to help end their suffering as well. I contacted a Feldenkrais Practitioner (pronounced Fel/den/cris) in my town and described the condition to her. I have been to her several times in the past for other problems and have always been amazed at the results. She knew exactly what I was talking about and how to help me. After one session, the symptoms were gone and life returned to normal. Not many people know about Feldenkrais, so I recommend Googling it to best understand the practice. My practioner has additional training in other fields that she uses, along with Feldenkrais, that helped solve the problem. But, in essence, she gently worked on readjusting the inner ear and optical nerves, as well as the bones in those areas. It's a gentle, natureopathic way of realigning the way our inner body functions. It is NOT a chiropractic method. There is no yanking or cranking. There is no pain and no pills. For those who suffer from Mal de Debarquement Syndrome, there IS a cure! Did this work for you too? Please let us know how you got on. Contact the poster via skipper@sailtales.co.uk. Please state Christi in your message. Comment from: Marion

I have had MDDS for 8 years. The doctors think it followed a severe cold/mild flu when I had a very "bunged up/thick feeling" in my head. The first day I was aware of it, I bent down to pick something off the ground and was aware of feeling dizzy & lightheaded. I thought I was feeling a bit faint as it was a very warm day. When it first started, I felt panicky, anxious and tearful. I had a feeling of constant motion which felt like rocking/swaying but also had a bobbing and dipping element to it, just like sitting on a boat. I would lean on the wall or hold onto the checkout in the Supermarket, as I felt faint and was terrified I would fall in front of everyone. I felt sick and my heart would be thumping. I seemed to become very sensitive to noise - everything started to sound extra loud and I hated situations where there were a lot of people talking, busy places and bright lights. I couldn't sleep for being aware of the constant feeling of motion and even once I could sleep, MDDS makes you feel unbelievably fatigued all the time. I went to my GP and was told the likelihood was that it was some type of viral labyrinthitis and it would pass in a few days or weeks. It didn't. I was referred to ENT at the Royal Infirmary and they also reckoned it would pass in a few weeks, maybe a few months. It didn't. I was tried on Cinnarizine tablets and typical of MDDS sufferers, it had no effect. Over a few months, I became extremely anxious and worried that I might have suffered a stroke or had a brain tumour. Again, I couldn't sleep and teetered on the verge of depression, being prescribed antidepressants which, happily, I ended up not having to take. I was sent for a CT and MRI scan and once the results of these came back normal, I seemed to turn a corner and picked myself up and got on with my life. Sitting in front of the TV on long, dark winter evenings was bad, as my stillness means this is when I'm most aware of the constant motion I feel. The first couple of years, especially on gloomy winter nights, I could sit and cry for an hour solid, just desperate for the feeling to go away and feeling quite depressed. After around 2 years, I went back to my GP who agreed to refer me back to ENT. This time, I ended up at the Dizziness Clinic at the Royal Infirmary of Edinburgh and saw Dr Robert Mills, Consultant Otolaryngologist. He had a very specific questionnaire on a computer and asked me a list of brief "tick box" questions. From memory, the last question he asked me was "do you feel like you're on a boat?" Somebody actually knew what I was talking about and I eagerly answered YES!! He told me that what he thought I had was MDDS and that it was fairly rare and not a huge amount was known about it. I tried the Cawthorne-Cooksey physiotherapy exercises, also mentioned on your site but found getting a tired, sickly feeling, hot and sweaty several times a day and trying to hold down a full-time job (and drive to it) weren't compatible. Maybe if you are signed off sick for a long period they are worth trying. If I haven't slept or am having a very stressful, busy day and rushing around, my MDDS feels worse and takes on a shaky/shuddery element which is absolutely horrible. You feel like you're going to shake and break into bits. On a more positive note, although it hasn't gone away, your brain seems to gradually adjust to the feeling of motion and you become much less aware of it and it becomes somehow "normal for you". The feeling of sickness wore off quite early on as, again, I think the motion became "normal for me". I now know, even although my head is telling me otherwise, I'm not going to fall down or faint, so I don't feel anxious about that any more and don't worry about it at all, I just ignore what it's telling me, as it's a false signal. Not becoming stressed and anxious about this makes it feel less severe also. When I'm driving my car, I feel completely normal, as the motion of the car makes me unaware of my own feeling of motion. If I've had a really good sleep and am calm, this helps the condition feel better too. Although these symptoms are with me constantly, all day every day, it did once leave me for two days following a flight. It is the only time it has left me, although I have flown since but it did give me hope that one day it might, although I don't allow myself to wait for that or expect it, otherwise it would make drive me mad! Even though the Cinnarizine tablets had no effect, funnily enough and probably the only thing about MDDS that is remotely funny, is that a few glasses of wine helps immensely and I become much more relaxed and less aware of it! When you first start MDDS, you feel ill, terrified, frustrated and horrendous and there's nothing you can do about that phase but after the initial feeling of illness, nausea etc passes, my advice to anyone who is dealing with this is, although you're desperate for it to go away and not accept it, what helped me eventually was to accept I had it and get on with my life. You have to get your head into a determined, stubborn place, packed with willpower where you make yourself ignore the MDDS, go out with friends, have a laugh, exercise, even if you don't feel like it and you will find you do feel better afterwards. Get lots of sleep. Try to stay calm and not stress about things. Be absolutely determined that it's not going to beat you. I hardly ever sit and get depressed and cry over it now, only when I talk about it to others. Most people, except close friends and family, have no idea I've got it and I can't be bothered telling people I have it any more, though I used to. I'm so glad I got my head into its stubborn place and decided this wasn't going to rule or ruin my life, as that's eight years of living I would have wasted, probably being signed off sick and suffering from depression. I work in a hospital and I see people in wheelchairs with two amputated legs and patients on the wards who I know have terminal illnesses, or that are in-patients being let out for the day to attend their husband or wife's funeral and it's humbling. It makes me realise that although MDDS is a horrible, life-altering condition, I'm really lucky and I should stop feeling so sorry for myself. So, I did. I would be interested, however, to hear more details about Justine's acupuncture treatment and was interested to read Christi's recommendation to see a Feldenkrais Practitioner which I haven't even heard of, until now. Contact the poster via skipper@sailtales.co.uk. Please state Marion in your message. Comment from: Heather Smith

I am now in my 6th year with MdDS. It is my 3rd episode. The first lasted 1 month like a lot of people who find getting their land legs back. The 2nd time lasted 6 months and it seem to just very slowly disipate with time. The 3rd and on going started from a gruelling 10 day trip to Thailand which involved long flights, bumpy bus rides and 2 rough sea crossings. I had all the usual MRI scans on my return and umpteen balance tests and when all other conditions were dismissed I was diagnosed with MdDS. The most peculiar thing in all this time is that my symptoms have pretty much been at 5/10 level and then out of the blue last year I had 2 WHOLE DAYS!! where I felt "normal". I cleaned and sang and ran around like the happiest of happy energised people. I was amazed and then day 3 all back to rockin and a rollin. So what happened that in 6 yrs I had a 2 day repreave from it all. And that is my on going story. Heather Contact the poster via skipper@sailtales.co.uk. Please state Heather Smith in your message. Comment from: Marion

Heather, I wrote the story above. I was interested to hear you've only had 2 days clear of it for years also. I've only had 2 days clear in 8 years. After a 4 hour flight, I landed still with the rocking and rolling feeling. I can't remember if it was the following morning or the day after, I woke up feeling totally still. It was the most amazing feeling ever!! Contact the poster via skipper@sailtales.co.uk. Please state Marion in your message. Comment on this article Tell us your story