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.

Motion-Sickness-Guru.com:
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?

Jane:
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...

Motion-Sickness-Guru.com:
So you've now had MdDS for over a decade! In that time, have you experienced any changes or improvement/deterioration in your condition?

Jane:
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.

Motion-Sickness-Guru.com:
Are there circumstances where you feel normal again? For example, on a boat, or on other transport?

Jane:
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.

Motion-Sickness-Guru.com:
MdDS is still a little known condition. Did you have problems obtaining a diagnosis? How helpful was your family doctor?

Jane:
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."

Motion-Sickness-Guru.com:
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?

Jane:
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.

Motion-Sickness-Guru.com:
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?

Jane:
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.

Motion-Sickness-Guru.com:
How has MdDS changed your life?

Jane:
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.

Motion-Sickness-Guru.com:
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?

Jane:
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.

Motion-Sickness-Guru.com:
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.

Jane:
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.

More information:

Visit Jane's website at www.mdds.org.uk. She can be contacted via the website.

See also:

  • Read more about MdDS


Comments

Beth on May 9th 2012:
Thank you for this story. I have profound thanks and admiration for Jane, because through her and others' efforts, we have had it much easier getting a diagnosis and watching as the first potential treatments are on the horizon, God willing.
Terry in Nova Scotia on May 10th 2012:
I have had MdDS over 4 years, after a cruise. I have tried every medical and "new agey" option, with no relief. But I have not let it stop me loving my life and living it to the fullest. Someday it WILL be gone and I'll stop "walking on water."
Barbara on May 11th 2012:
Well done Jane, another excellent article to get MdDS "out there". Without Jane's help a few years back I don't know what I would have done as I thought I was going out of my mind and all the doctors I saw seemed to be of that opinion. They just threw pills at me and said they would make me "feel better". However I persisted and finally found a GP willing to listen and assure me I wasn't crazy. I had tests and was diagnosed. Thank you Jane for all the help.
Helen on May 11th 2012:
Thanks so much for all your efforts Jane. Do you take any medication? All the best, Helen
Lucy @ Motion-Sickness-Guru.com replies:
I've spoken to Jane about this and she says the following:

"I am currently not taking any medication at all for my MdDS, not even any vitamin pills!

In the early months when my GP and I still didn't know what was wrong with me, he tried me on some of the anti-motion sickness medication, such as Stemitil, Stugeron and Serc. However, none of them did any good. A couple of years ago now a neurologist who had read about me contacted me and asked if he could try to help. He told me to cut out all caffeine and chocolate (the latter being such a challenge!) and he put me on a drug called Gabapentin. On his advice I slowly built up to a high dosage, to be taken three times a day. I was on it for just over a year but sadly, once again I didn't find any improvement.

Of course, we have to remember that MdDS is so subjective. What suits one, doesn't necessarily suit another. We all have to be our own guinea-pigs to discover what helps us with this condition."
John M. on May 12th 2012:
I can relate to what Jane has said and describes. I woke up one morning feeling dizzy, thought it would pass and went to work. The following morning I couldn't get out of bed - severely dizzy and everything moving around me. I spent the next 4 weeks in bed, a week was in the hospital as they queried stroke and tumour. Numerous tests and MRI scans - all normal. Diagnosed with Labyrinthitis.

The floating-dizziness feeling remains my constant companion 18 months later, together with some tremors. Particular situations increase my dizziness and I have been prone to falling.

My life has been turned upside down and yet 7 (seven) consultants and physiotherapy have failed to diagnose and effectively treat my symptoms. Consequently, I have lost my high powered job and my executive lifestyle has been turned upside down. Busy environments make my symptoms worse, bright lights (sunshine), crowds of people & cars coming towards me, often I need to sleep to ease the symptoms. There is no pattern to worsening the dizziness. My GP is useless and I have searched the world, volunteering to act as a guinea pig so doctors may find a cure. I have learnt to walk closely to friends to help keep me steady and behind them, so people have to walk around, I love wide pavements and open spaces (beaches, countryside). I tire easily as I fight to retain my balance. I have tried all sorts of vitamins and supplements, but still the dizziness prevails... so well done to Jane for highlighting this issue.
Alex on May 13th 2012:
Thank you, Jane, for your continued work in supporting those suffering from this debilitating condition. I have suffered MdDS for nearly two years and I find it difficult to understand how such a real condition is not more widely understood or researched by the medical profession. The work you do has been a considerable help to me - thank you again.
Nick on June 22nd 2012:
Great article. I developed the symptoms of MDDS about 2 years ago. I was on a boat for several hours though it was in dock. I had very badly blocked left ear at the time so I was pretty much deaf. I got tinnitus soon after.

I would completely recommend CBT [Cognitive Behavioural Therapy] and I entirely agree that there is a strong subjective element to this odd condition. I found that the condition got on top of me for the first few months and as someone who is prone to anxiety anyway this pushed my buttons.

I got a sort of informal diagnosis from ENT [Ear, Nose & Throat] but because I hadn't been on a cruise the doctor wouldn't give me it formally. My symptoms match exactly. I am wondering whether the condition is actually more common than the statistics show. I have stopped thinking about curing it though I hope it will go, and have found I do indeed still enjoy a 'good' life. The thing I hate most about it is that the symptoms seem to act as a magnifying glass for other anxieties and I often wonder how on earth I would cope with a serious illness on top. So much to say this is my first post on the subject. Bless you all.
Bonnie on August 22nd 2012:
I have had MDDS since August 23, 1999 when my place of employment in a 2 story building was moved to a high rise building which necessitated me riding the high speed elevators throughout the day. It took me about 3 months to see an ENT specialist at the Ohio State University and he provided me with an immediate diagnosis. Sadly, he told me, there is no magic pill to cure MDDS. I am recently retired and I hoped that the MDDS would resolve but it has not. 12 years later and I'm still looking for a cure.
Amanda on September 29th 2012:
Really encouraging article, great to know I am not alone even though I feel I am. People who have never experienced what we feel often see it as a phantom illness.

I was finally diagnosed 2 years ago after wrongfully being diagnosed with labrynthitis 5 and half years ago. My GP was useless and actually told me to stop making it up!! A few years later I gained the confidence to challenge the senior partner and was referred to an ENT consultant. He diagnosed my MDDS but told me there was nothing they could do.

After another plane trip making me very ill, I searched the web and found a neurologist in my area on a US website. I asked my GP to send me to see him which he was very happy to do.

In the last year I have been on beta blockers which have made the 4 year migraines disappear. I feel more able to carry on but no relief to the feeling of motion and other symptoms.

I was 23 when I had my first symptoms after a short boat trip on holiday. I seem to be somewhat younger than the 'average' age of onset and have the attitude that it will not beat me. I am trying to fly high in my career and this condition has put me back... I hope one day someone will find an answer as some days make me feel very depressed.

I am not the person I use to be and it has changed my life, something I have to live with but you have to make the best of it.

Keep smiling people :-)
terrym on November 20th 2012:
It is a real revelation to me to read all of the reports that people and sufferers have written about this problem and complaint. I have to thank Michele-Marie Roberts who wrote an artical in last week's Take A Break. I never attached my illness to anything until I read this article, I have for several years suffered depressions by losing everything (house, business) at the age of 60 through the bank calling in the debt and making us bankrupt. My wife has stayed by my side through all of our problems and uncertainty, even my bad days and weeks. I can now recall that on our last days in business we used a credit card to take a holiday in America (a twelve hour flight) which also took in Disney World. On our return my illness started to get worse. It was still all put down to stress and depression. I was now getting giddy and falling over, I also suffered from wavy line vision, blackouts and servere sickness. Doctor's diagnosis: "Middle Ear infection", 'No Cure, it will wear off in time'.

I have overcome the depressions and life is becoming bearable, except for the symptoms of MdDS. It is unbelievable that in this day and age there is no cure or medical research to its root solution. At 74 I am able to just sit or lay until the problem subsides, I know it's not easy to take time off and lose money while suffering at the same time. I pray there is a cure soon for all of you at a younger age so that you may live a normal life.
Michele-Marie Roberts on November 26th 2012:
Dear Terry M,
Just a little note to say a big 'thank you' for acknowledging my article in Take a Break. I am very touched that it may have gone someway to helping you 'define' and finally understand what you have.
Kind Regards,
Michele-Marie Roberts
Anne Rhein on December 3rd 2012:
I am so happy I found this site. I believe strongly that I have MdDS. I have had many doctor visits. I had a neurologist that took me under his wing and really was very supportive. He put me on Amatriptoline for migraine building me up each week for 6 weeks to a therapeutic level. It did nothing to help my symptoms. That neurologist basically told me he was sure it was migraine vertigo and at this point he basically said there was nothing he could do for me because at this point it was just my anxiety and that was the problem. I had never been so sad in my life. He didn't have the answer so he blamed me.

I have survived Guillian Bearre Syndrome 10 years ago where i was completely paralyzed and in the hospital for 3 weeks. I was given blood treatments and got well very quickly. Seven years ago I was diagnosed with breast cancer, had mastectomy and chemo. Got through those two with strength and positive attitude.

November 10th, 2011, took a flight from SF to Boston to visit my son who was college freshman. Dizzy off balance and blurred focusing issues, full head yet light headed. These symptoms came on an hour after I landed. I have faced like many people some bumps in my road but at least there has been a cure for my past health conditions. This MdDS is so upsetting. I feel like when I know what I need to do to fight for my health I am amazingly strong. MdDS is so unpredictable as the symptoms change all the time and the uncertainty of it going away is always in my mind. I am frightened to get back on a plane to visit my son which breaks my heart most of all. The thought of not traveling to see the world with my family is hard to imagine.

Does anyone else have blurred vision, for example seeing distance (like faces)? My eyes check out fine but my vision changes all the time to more or less blurred.

Thank you for reading my long letter. Best luck to us all and may the new year bring some positive news!
Anne
June on July 28th 2014:
Thank you. I have suffered with this condition for 8 yrs. In my case it comes and goes, each episode lasts longer than the previous one. No one understands this condition, which can make living with it more difficult. In my case, my family and friends are very supportive and I try to live my life as normal, although not always easy, but I try not to let it beat me. Moving around in a crowded environment I find very upsetting and leaves me very irritated. I try to avoid these situations. My eyesight is also affected. It is a relief to realise you are not alone.
June
Daisy on August 3rd, 2014:
I've only just read about this and, like June, mine comes and goes for weeks at a time. I was told it was a post-viral symptom. However, I remember exactly when it first occurred, which was after a short but bendy back-seat car journey down country lanes - the resulting travel sickness stayed for about four months and has returned periodically in the last four years. I don't know what triggers the recurrences, so I never know when it's going to strike, which makes for anxiety and stress. I am happy to have discovered this site tho' - thank you!
June
Kate Boulton on October 17th, 2014:
Hi Jane, Here I am again, 4yrs later!!! It's not all been bad though. I'm back on another 'boat trip' after a 3yr 10 month lull, although during that time looking in the boot/footwell of the car, washing hands too vigorous, train/bus rides all were my triggers, but then thankfully gone in minutes.
This time it was a 30min harbour boat trip in Rhodes. A week later I'm seriously troubled by the rocking etc. Last time it lasted 4 1/2 months, had a bad xmas day, gone boxing day!!! Here's hoping!!!!
Judy on December 5, 2014:
Greetings! I have been living with MdDS for over 2 yrs. I just started with a new Primary doctor yesterday who is going to work with me, completing what he feels I need to be checked out to confirm an official diagnosis. My previous Primary Dr. told me I had to "just live with it" and got upset with me for reading info from the internet and told me to stop. She would not help me by giving me a referral to Drs listed as being sources for a diagnosis with MdDS. It has been very difficult and discouraging and I was just about at a point of hopelessness and ready to give up even, though, my attitude has always been to fight it and keep living my life the best I could to the fullest. I felt I could sit at home and just slowly die or I could get out doing things being dizzy and live my life the best I could fighting the dizziness.
I have never known if I would wake up with it or it would start at noon, but definitely by about 3 the dizziness would hit every day. If I had not gotten dressed by the time it hit it was usually almost too difficult to fight it and get out. I have never really known what would make some days better than others. I did know that stress definitely made it worse or triggered it if it had not started yet. By 6pm the dizziness would be peaking and the pressure in my head made me feel like my head was going to explode. It would be hard to focus and concentrate because of having to fight the dizziness & pressure in my head but I did not give in and kept getting out and doing things in spite of the horrendous symptoms. The common greeting I would give my husband if I met him someplace for dinner would be "I'm spinning like a top!". The fatigue has been extreme and having 6 children to try to keep up with, 8 grandchildren, supporting a husband still working at 72 who has his own horrendous illnesses - cancer, RA & COPD, and a mother with Alzheimer's and a disabled dog it has been exhausting but I have been determined to not let this mysterious illness get me! I have gone through all the tests, VNG 3 times, MRIs, EEG, balance tests, Vestibular PT, hearing and vision tests, visits to Neurologists, ENTs and Carotid Artery testing and all have come up negative. The last visit to a second ENT who diagnosed me with a "Mood Disorder"! Told this ENT he would have a mood disorder too if he had had to live his life everyday being dizzy! Telling me I have a mood disorder was the last injury upon injury. I had gone through the VNG test three times and each time with negative outcome. Through my own continued reading on different sites about MdDS, and finding that some have responded to taking low doses of Clonazepam - .25 helped with their symptoms - I have now stared my own regime & found taking .25 mg 4xs/day I am no longer dizzy each day only if I forget taking the .25 & get behind. So I now have hope and will continue to pursue with medical guidance and get into a research group to help find out the cause of this disease and a cure for all!
Janice on January 19, 2015:
I went on a trip last May, took 4 plane trips in the course of one week, a 1 hour boat ride, a carnival ride and then 4 bouts of 3D laser tag. I didn't have symptoms until the plane ride home and then when I got home, as always I felt like I was still landing in the plane.
I have always felt things like the plane is landing for a day or two, or after getting off a boat or ship felt like I was still on the boat for a couple of days, and thought that was just normal. But after this last trip in May everything kept moving and I felt horribly nauseous and had trouble concentrating. At my Dr.'s request I had an MRI, then he sent me to an ENT who promptly diagnosed me with migraines in spite of me not having any headache, to which she replied that migraines can manifest many ways without pain and the motion and confused feeling was the migraine. I called my Dr. who also thought this was rubbish and he sent me to a PT who specialized in dizziness. When I described my vacation and then my symptoms she said she sees hundreds of patients with this and said it was MdDS. She also said I should get a second opinion and referred me to a Dr. who sends her patients with this disorder and he would know if this is truly what was going on. I went and he did diagnose me with MdDS.
The PT gave me daily exercises to trick my brain into understanding I was on land and stop the motion. It helped. It took about 5 months for it to go away. During that time I would feel fine in spaces with windows or large rooms, but if I walked up a stairwell or even down the frozen food cases at the grocery store, even small rooms, immediately things would start moving again, but would stop as soon as I removed myself from the area. It had completely gone away as of October and then I went on a business trip where I had to ride an elevator 4 + times a day for 4 days and upon driving home, the next day after getting home everything is moving/floating, I am nauseous and my concentration is gone. It has been two days.
I am now wondering if I haven't maybe had this my whole life and those plane and boat feelings that lasted for a couple of days was MdDS in a milder state and now that I am over 50 it is worse. I am going to start the PT exercises but I am horribly depressed that it is back full steam after just elevator rides. Does anyone else know of other things that starts or makes their MdDS worse? I plan on living to the fullest but will gladly take stairs rather than an elevator if I can avoid things that make it act up.
Justin Bonai on February 10, 2015:
Hi Jane, do you take any medications or just managing how to live with it.
Igna Stretch on February 18, 2015:
Hi Jane,
I am a High Court judge in South Africa. I self diagnosed MdDS 10 years ago after a boat trip. It sometimes goes into remission and goes away with passive motion but is worse at the end of the passive motion, which is a bit of a catch 22. I love skiing in Italy but after each long flight (ten hours each way) it has been much worse. Presently it is extremely bad after having returned from Italy in January this year. It is also not improving but seems to be getting worse. I have contacted the Mount Sinai research institute in New York. They have identified me as a candidate for their latest treatment and want me to come in July. However, they are unable to say whether it will not return when I get back to South Africa, as the flight each way is about 18 hours. For those interested, the treatment is over a period of four days with three sessions of about 40 minutes per day. It costs about 2500 dollars. What I do not understand is why we cannot have the same treatment in the countries where we live? As I understand it the treatment involves mainly visual stimulation and the use of some machinery. Does anyone have any thoughts on this?
rocking in florida on February 20, 2015:
Hi all,
My comment is addressed to the South African judge. I have an appointment with Dr. Dai end of June. I was gonna fly but have decided to just drive. I read in the email to bring Xanax or something similar to help not bring it back.
As for why no one else is doing this is because they are the ones that developed it. Sooner or later with more positive results I would hope others would learn how and offer hope to sufferers. Only if money is involved as well. Unfortunate that's what motivates others.
Perhaps our paths will cross. Good luck and I'm just counting down the days to finally finding relief and continuing on with my life as everyone else wishes to as well.
TStone on March 1, 2015:
Replying to Igna Stretch and Rocking in Florida as well as others looking for help. EVERYONE with MdDS needs to get a copy of the article by Dr. Dai and others on the treatment performed at Mount Sinai Hospital in NYC summer of 2014. Google this 6 page article and READ THEIR TREATMENT carefully.
My ENT diagnosed me with MdDS after returning from a 7 day cruise Feb 7, 2015. I am in day 22 of MdDS and am about 70% now, which all benefit happened over 1 week by using their treatment. My Chiropractor in Woodbridge, VA read the article and told me what to do. You need to download an app onto your phone for iPhone - it is called OKN Strips for Android, it may be called OPK Strips. Bottom line it is an app that will display red and white stripes that move. Part of the trick is figuring out which way to watch the strips. In my testing with eyes closed, arms held out straight and marching, I did NOT rotate in either direction. However, I always felt like I was rocking to the right. So based on the study it says in this case to go in the direction which you feel you are moving (this can be trial and error - either you will feel better or worse after about 3 sessions). All you do is turn the app on (slow speed, 0 or 1) hold it out in front of you and stare at it. Do this for 3 to 5 minutes. Then I would tilt my head to the right 20 degrees for a minute then to the left for a minute then back to the middle. I would do this every 2 hours.
Day 1 after doing this 3 times, I knew I was making progress. At the end of 2 days I was at about 50%. Then I regressed over the week-end, too much stimulus and was depressed, however; on Monday I started again and while staring at the strips I did continued slow movement of my head from right to left at about the same feeling as the waves of the ocean. This has me at about 70% and this is my day 22 with MdDS. I literally can feel the dizzy moving in my head. It is mainly concentrated on the right side of my head and in my right eye. Yes, this absolutely affects my vision as it puts a fuzzy halo around everything. As my symptoms have improved, my vision is not significantly affected anymore. I am trying to figure out what movements I need to get full improvement.
I went to a neurologist in Falls Church, VA, however; he was really not interested in learning about MdDS or helping me. He did tell me to get Vestibulor therapy, which I need to look into. I fully believe that with the right head movement and therapy the majority of individuals suffering with this nightmarish illness can be significantly helped.
Please post and let me know if you try the Strips therapy on your own. I too was looking into going to Mount Siani in NYC but did not want to live a day longer with this than I have too. God Bless you all and may you also see results like I have from using the OKN Strips app. This helps your brain and vestibulor system get back in better balance.
Lorraine on March 21, 2015:
TStone, I live in north Potomac MD and have had MdDS since Christmas 2014 following a 4 day cruise. I am going to see Dr. Dai in May but have had some success with a vestibular therapist near me at Shady Grove Hospital at the outpatient center. She does a variety of things that I believe have reduced my symptoms. You are not too far away if you are interested in checking her out.
TStone on March 28, 2015:
Hi Lorraine,
I wish I could get in touch with you to talk. Please could you describe any of the treatments that have been performed that you believe have helped you? Also, could you describe your symptoms as well please? Thanks! Week before last my chiropractor did some eye tests on me and said my left eye was definitely weak and not tracking as well. My vision definitely feels out of sync at times. I also felt like I was being pulled back and to the right when I closed my eyes and stood with my hands to my side. He had my put my left arm out and he stimulated just my right arm by tapping it from my hand all the way up to my shoulder. After he did this and I closed my eyes again with my hands at my sides I did not rock at all. Unfortunately it didn't last but it does demonstrate that stimulation can have an impact. I look forward to hearing more from you!
Wanderwing on April 1, 2015:
Hi TStone, I'm really keen to try your treatment. I am in the UK and seeing a physiotherapist who specialises in vestibular rehabilitation. I have just tried to email Dr Cohen at Mt Sinai after reading the article you mentioned to see if there are any exercises I can do to help as I can't afford a trip to the States! It sounds like I could try something similar to you. Is there an iPad app that does the same thing? I've had MdDS for six weeks after a week long cruise in gale force winds. I have just discovered this is what I have after being fobbed off with 'it's labyrinthitis, take these pills' from my GP. Any help would be greatly appreciated. I hope you are continuing to see results!!
TStone on April 8, 2015:
Hi Wanderwing,
FYI - Dr. Dai is who you want, Dr. Cohen does not handle the treatment. The iPhone app I listed in my earlier post will work on your iPad. It only costs a few dollars. I wish I could speak with you but I think there are enough details in my post to begin trying the app. Keep in mind, it you have the lines moving in the wrong direction for you, you WILL feel worse. Therefore, if that happens just try the other direction. I had significant improvement in 2 days using the app.
This week I went to a Vestibular Therapist and validated that my VOR is off (eyes and head are out of sync). She had me staring at an x at eye level about 3 feet in front of me and turning my head from side to side keeping my eyes on the x. (this is a small side to side movement so eyes can stay fixed on the x). I do this fast for 30 - 45 seconds about 4 times a day. I also do this by moving my head up and down, again for 30 - 45 seconds.
Another important treatment I am trying is Neuro-stimulation. My Chiropractor tried this 5 days ago on the lowest setting. He takes electrodes and moves them around my head. It takes about 20 minutes and it gives off a light electrical stimulation. I did not really feel anything the day I had it done, however; the next day I had my best day. The ringing in my ears lessened and the dizzy in my head and body also lessened. I felt the improvements for 3 days and then on 4th the dizzy increased again. I had a 2nd session today and feel much less dizzy again. We shall see how I do over the next few days.
Let me know how you do with the app.
Blessings!
TStone
Laura Wyld on April 10, 2015:
I will have had MDDS for 9 years in 10 days' time. It's a horrible complaint, but there are treatments that don't cost anything, here in the UK. Maybe I was lucky, but I got diagnosed within 6 weeks, but was told there was no treatment. I badgered everybody, and eventually ended up in Harley St. There a research doctor called Marisou Pavlou, asked me to join a research project in Smith Square. This involved very similar equipment and exercises as described in the Dr Dai reports I have read, and has allowed me to control my symptoms and actually be able to sleep lying down most nights. Otherwise I'm propped up on pillows to make sure I don't move and cause the motion to start. Anyway, I'm not sure where the treatment is now, I went on it for 2 1/2 years, until they said there was nothing more they could do. BUT it made a terrific difference to me, and has allowed me to do normal stuff most of the time. So for those in the UK it might be worth some investigation.
As an aside, I see no mention of neon or low energy lights. These are particular triggers for me, and now I don't go anywhere that has these, I very rarely get the symptoms. Leaves a lot of restaurants and shops that I can't enter, but a small price to pay for not going round and round.
TM on April 12, 2015:
I've been reading all I can about MdDS. About 6 weeks ago -- completely out of nowhere -- I had what I'd call a dizzy spell. I had NOT been on a cruise or done any other out-of-the-ordinary traveling. This dizziness hit me while in a mall. After that, I began having tingling pains in my back, along with neck pain. To date, I've seen my family physician, had a short consult with a neurologist at the hospital after going to the ER, and I've seen two ENTs. So far, an MRI and CT have been normal. I am able to walk just fine, but I simply feel off balance, and I sway a bit while standing. One ENT mentioned MdDS very briefly, while the other mentioned both TMJ and migraines.
What I'm wondering is if anyone with a clear diagnosis can explain the sensations associated with this, other than "feeling like you're on a boat." Do you feel like you're actually heaving with imaginary waves? What is the swaying like on the low end of the scale (via the foundation website)? I'm just very confused. Any help is much appreciated. Thank you!
sw on April 15, 2015:
Has anyone experienced nerve pain right around your tailbone with Mdds? I have had Mdds since an 11 day cruise over 15 years ago. That first episode lasted 8 months and every year following I will have at least 3 to 4 month episodes. My chronic migraines get much worse during these times. Sometimes the trigger is plane travel, or elevator or stress. I have found reflexology to be useful in relieving symptoms.
Hare Krishna on April 20, 2015:
@ SW - thanks for your comment. I think I will try your suggestion of reflexology. I have had Disembarkment Syndrome for 4 years. I live in Japan and this started about 5 weeks after the big earthquake. Our building was really shaking. Worst time is when I wake up in the morning. Please keep us updated with your progress & thanks again.
Sharon Briand on April 20, 2015:
I am in my 10th week of MdDS which started the day after returning from a very smooth 1-week cruise. I felt amazing until the morning we returned. It's awful. I can only explain it as a nightmare I can't wake up from. My brain feels like it is bobbing up and down or back and forth. I'm actually not sure what is worse, that or the ringing in my ears. I have had blood work, head CT and MRI, all negative. I have seen my family doctor, ENT, and have been in the emergency room where I was officially diagnosed. Take this, try that, and go away. I see my chiro for acupuncture which hasn't helped, I am now seeing a physiotherapist what specializes in vestibular issues. I am now doing the visual test staring at the middle of an X while moving my head right to left. This exacerbates my symptoms and seems to bring on fevers. Maybe it has triggered my body to start fighting this bizarre virus, disease, whatever it is. I pray every night that the next day will be better. I just want to feel normal. Thx for reading.
junior sundance on April 28, 2015:
Hello I'm a 29 year old man. I became ill all of a sudden when I worked on board a catamaran in 2004, it was very strange! I actually thought I was dying as I was only 19. I didn't disembark from the boat, I became dizzy, fatigued etc. on board. I only found out I had mdds last year. It has ruined my life completely my symptoms have been severe and relentless. Does anyone else find hangovers unbearable?

ely my symptoms have been severe and relentless. Does anyone else find hangovers unbearable?
Sharon briand on April 30, 2015:
Lorraine pls tell me how to make an appointment with Dr Dai. Do you have the phone number?? I have tried to call but am getting nowhere with Mt Sinai New York.

Thx so' much. Pls tell me when your treatment is in May.
P.D. on July 2, 2015:
It is wonderful to find a site where I can read what MdDs is like for others. I don't feel so alone now.
I had rotator cuff repair surgery February of 2015 and was put on oxycodone with acetaminophen which I took according to the prescription for 6 weeks as needed for pain. Once I stopped the medication I began to feel in my head as if I were walking on a moving bus. Also, my head felt full. I had thought maybe my sinuses were congested, but they weren't. These symptoms lasted for about 3 months. For the past few days I have felt as if I were on a ship on a stormy, rolling sea. And I still have the full head.
I have been to my primary physician who referred me to an ENT who thinks I have MdDs. My problem is getting my insurance to allow me to see who the ENT wants me to see to confirm his diagnosis.
I am not a fighter. I am concerned that I will give up because of having to "fight" with insurance, doctor office staff, and my rotator cuff repair being a bust.
It was discouraging to discover that no cure is available.
Thank you for giving me a place to tell my story.
Maggie on November 4, 2015:
I have had the symptoms of MdDS for over a year now. This started suddenly after returning from a holiday. I spent a blissful week on a boat and have not been the same since. Like many other people I have tried several meds without significant improvements. Very recently I went on holiday again [something I may not have done if I had understood my symptoms], and have returned with an escalation of dizziness etc. I find myself very distressed with no empathy from my GP probably as I went to them with info about MdDS rather than wait for them to identify my problem. My symptoms are classic. I spend most of my time struggling because of the bobbing about, disturbance to vision and sensitivity to light and noise. I hate the fact that I cannot always string a sentence together and the later in the day I get the more exhausted I feel. My respite is travelling in a car. My GP has referred me to ENT but continues to be dismissive of my distress. I would love to hear if anyone has found any expertise in the Lincolnshire area as I am prepared to seek a private consultation. I am ever hopeful that I can find a 'cure'.
Carolyn on November 14, 2015:
I have (self diagnosed) MdDS. It arrived 6 years ago after a plane flight. I was going to get a scan but had a heart attack before I could go. This was followed up by a triple heart bypass. When I did get the MRI several months later it found a massive brain tumour, a meningioma which was successfully removed. At the end of all that I was still "dizzy", the doctor diagnosed a vestibular dysfunction (o.k. he didn't know what it was either). I had all the hospital tests and was told "that's what you have make the best of it"!!! I am so grateful that my friend (an ex nurse) found the article and suggested I read it. I have everything described. It's wonderful to have a name for my illness and even better to know I am not alone. I will go back to my doctor armed with all this information when I can be bothered but as there is no cure what is the point? I have retired and have a good pension so no need to work. Just a big thank you for the helpful article xxxx
Brooke on November 18, 2015:
10 days since I am back from my cruise. 7 night cruise. Felt great on the cruise. Really had the best time. The waters were amazingly smooth until the last night. 50 mh winds. Slept through all the rolling. As soon as we were headed through customs, I felt the continuous feeling of being on a boat. Worse than the previous cruise. The first cruise I had moderate swaying for about a week that would come and go. I immediately knew this was different. I have been having the swaying, pressure/fullness in head, extreme dizziness, light constant headache, exhaustion that got a little better with each passing day, brain fog, and bad short term memory. I found Tstone's reply on another page and tried it exactly as she said. Immediately I felt better. Although I had this weird right eye and right temple head pressure/feeling afterwards. But I felt better than I had in the last 10 days. And while laying the swaying was barely there. Woke up, and I could actually work. I am not all the way better, but it did help tremendously already with only 1 session last night. With the stepping I felt like I was going right. So I did the stripes to the right. Now I still feel like I'm going front to back, so I will try to go vertical now. Just trying to get a better sense of which way I'm going so I can get the stripes right. Thank you, Tstone for getting the word out!
Brooke on November 18, 2015:
10 days since I am back from my cruise. 7 night cruise. Felt great on the cruise. Really had the best time. The waters were amazingly smooth until the last night. 50 mh winds. Slept through all the rolling. As soon as we were headed through customs, I felt the continuous feeling of being on a boat. Worse than the previous cruise. The first cruise I had moderate swaying for about a week that would come and go. I immediately knew this was different. I have been having the swaying, pressure/fullness in head, extreme dizziness, light constant headache, exhaustion that got a little better with each passing day, brain fog, and bad short term memory. I found Tstone's reply on another page and tried it exactly as she said. Immediately I felt better. Although I had this weird right eye and right temple head pressure/feeling afterwards. But I felt better than I had in the last 10 days. And while laying the swaying was barely there. Woke up, and I could actually work. I am not all the way better, but it did help tremendously already with only 1 session last night.
With the stepping I felt like I was going right. So I did the stripes to the right. Now I still feel like I'm going front to back, so I will try to go vertical now. Just trying to get a better sense of which way I'm going so I can get the stripes right. Thank you, Tstone for getting the word out!
Mashi on January 29, 2016:
I have had MDDS for almost 9 years now. Just like everyone, I had tests done and doctors cannot figure out what's going on till I googled my symptoms. For a year, I did not have a life and almost felt I'm stuck at home in my bed till I decided to have a mind-set that I will not let this sickness take over my life. By God's grace when I wake up in the morning I pray for God's strength to help me carry on my task and things I need to do. I drive my son to school, drive to work and was able to maintain 3 jobs and take care of my family. What helps is to be active! I started exercising and eating healthy. On my bad days I would rest and relax. We cannot let this illness cripple us. We have to still fight and live our lives to the fullest and lastly, my faith in Jesus and constant reading of the Bible and prayer allows me to live my life even though I have MDDS. Hope this helps.
Karen on August 1, 2016:
I have had MdDS for over five years now after an eight day cruise - tried herbs, drugs, treatment in Mt. Sinai from Dr. Dai - no success. I have been able to hold on to my teaching job but with difficulty - always bobbing and rocking. I often get depressed, but believe that one day there will be a cure. Praying and keeping socially active helps although I get tired very fast. Glad to know that I am not alone with this condition.
Liza on August 11, 2016:
Hi, I have felt dizzy for about 3 weeks after a boat journey of 24 hours. Actually it has gotten worse. It is still like I'm on a boat, or in an elevator. I don't get spinning dizziness only nautic. Sometimes I feel a little "out of this world"...
Saw my doctor yesterday and she referred me to a doctor of ear/nose/throat and I am let off work for the next 1,5 weeks. My doctor had no suggestions. I have read about Mal de debarquement syndrome, and it sounds exactly like that. I also read there is no known cure.
So I turn to you for tips: are there things I should avoid, or do I just go according to what is (not) comfortable? For instance, should I limit TV watching or just stop when I feel dizzy? Are there factors that worsen the condition? I am afraid to trigger this even more. Can I exercise? I love to run, and find that fixating my eyes on the horizon calms the dizziness down.
Further tips would be of great appreciation!
Stephen on August 17, 2016:
Well this is a relief: to know that I'm not crazy. After all the other tests it had come down to 2 options. Either I was a lunatic or it was some 'new malady'. I had been suffering from November until May last year. Same trigger as most of you reported. But, I am going on another cruise this coming November. I know I risk the 'bouncy castle' symptoms but, I can't live my life in a box either. Wish me luck.
sue cook on September 28, 2016:
Read through all the comments, and yes I have had this condition a long time, 4yrs this time without respite. But the symptoms have changed a bit. I seem to be having a feeling of weightlessness, as well as backward and forward. I do go to exercise classes, drive with no adverse conditions (feel normal when driving!). I've had a lot of stress recently so I seem nervous with it as well. But when life is less stressful I cope quite well, most of the time. Friends have come to understand that it takes me longer to cross roads etc. and walking down stairs I must hold on. Anyway got to visit my husband now recovering from an Op. but nice to just offload. Unfortunately typing, reading etc., I will pay for this a bit today!
LeeAnne Nagel on October 23, 2016:
Almost 4 years ago, I went on my 3rd cruise. My life has changed radically. I constantly move, my vision is impaired, I have reduced concentration and my memory is extremely diminished. I have tried brain exercises, seen functional neurologists and regular ones. When I would drive was the only time I would feel like my old self. Clear headed and steady, but over time that too has changed. I have had times when the exercises would help, then I would go through a bad spell and even those wouldn't work anymore. I have fought to keep some semblance of normalcy as I have always enjoyed being active and being hand on. Things I noticed now that trigger extreme dizziness are small motor skill movements like turning a screwdriver or folding laundry. My symptoms now include reduced vocabulary, vision impairment, spot pain in my head when I do movements with my hands, increased fatigue and breathlessness if I have to do more than one thing at a time like climbing stairs while carrying things, severely diminished memory and concentration. I struggle every day to not burden my family and friends. The depression is the worst.
LeeAnne Nagel on October 23, 2016:
Something you might try that has helped me over the years is seeing Dr. Shad Groves (Chiropractic neurologist) in long Beach California. I'm in Canada but they don't recognize functional neurology. He is brilliant. He is a professor and is affiliated with Dr. Carrick (not sure if his name is spelled right) way cheaper than Mt. Sinai. Check them out online, search for functional neurology.
Rachael on March 28, 2017:
I am so grateful to have found this site and have read all of these posts!! I was just diagnosed yesterday with MdDS. I was on a cruise 3 weeks ago and have suffered from everything you are all describing. This is AWFUL, SCARY, LIFE CHANGING and MISERABLE!!! I wish my vision wasn't blurry or that I wasn't dizzy and exhausted or succumbing to a headache so that I could spend the hours needed researching this horrible syndrome and learn how to get better!! But there's always tomorrow... it looks like I'm in this for the long haul. God help me!
Adele Beaton on April 17, 2017:
Terry in Nova Scotia. Would love to connect. I've never met anyone with MdDS!
Linda on May 19, 2017:
I am so sorry to read of all the people struggling with MDDS but I am happy to find that I am not alone! Three years ago, after a month of boating/cruising I awoke with my sway. All of your stories sound like mine – sway (not dizzy), headache, nausea, horrible fatigue. I went thru all the tests - brain scans, MRI, eply maneuvers, etc. I finally found my neurologist, who doesn't treat me like a nut. I am coping with a very small dose of venlafaxine for the boost of energy it provides (to fight the fatigue). I feel I am stuck with this for the rest of my life. While it does get me down sometimes, I'm not suffering with depression. I seem to feel best if I keep moving. I don't share my condition with many people because it's just too hard to explain. My family Dr won't acknowledge my condition which is so frustrating. All of your stories validate this disorders and it helps me greatly to know I'm not alone. If I can offer any advice, it would be to keep moving! Some days symptoms are so strong, that it's a very hard thing to do. Also, get support! If not from family or Dr, go to online sites. I wish you all the best.
Gail in Brighton, Michigan on June 1, 2017:
Hello... first of all, thank you for your stories and sharing. You all seem so courageous.
I have been suffering from many symptoms for over two years: swaying, gait imbalance, headaches, some ear fullness. And after two plus years some anxiety, although I try to keep that in check. I have been to so many doctors, too many to mention. I have seen ENT, gone for vestibular testing, neurologists, an ataxia neurologist and now seeing a naturopath and integrative neurologist. Every doctor has not been able to diagnose or help me. They have given diagnoses but only on paper.
The integrative neurologist I just saw is sending me for more blood work and another MRI and MRA. I am doubtful anything will show up after reading all your stories. But in my visit to her, she casually mentioned MdDS and so I have been reading about it. But even though I have been on ships, boats, planes and trains, my symptoms came on after a long car ride. So I am dubious that I have it, although I do have some of the symptoms.
So after this long-winded diary, how do they diagnose it? Is it just going by your symptoms?
There is a wonderful book called "Life Changing Foods" by Anthony William. Check it out. His first book called Medical Medium talks all about mystery illnesses. Very good and insightful.
Thank you for listening. I am living life to the fullest as best I can but it gets lonely. I feel I have to do a lot of pretending and I do feel that other people have a hard time understanding. One friend told another friend that I am a hypochondriac. So hurtful. I am a two-time cancer survivor and did well with staying positive through surgeries and radiation treatment. But this is tough when there is no diagnosis and you have no idea how to help yourself.
charmaine gardner on June 3, 2017:
I understand there is a part of a plane which is best for MdDS sufferers. Does anyone know if it's the tail, front, middle or over the wing? We're flying to the US and this information would be helpful.
Tammy on September 19, 2017:
My mum had suffered from MdDS for over 20 years. A fortnight ago I was starting to recover from a moderately bad sinus/head cold and took a ferry ride. Going there was fine but I was rocking as soon as I got off the ferry on my way back. Feeling very tired and anxious and terrified that I have the same syndrome that has brought my mum so much grief over the years.
After reading this page I decided to get up to date on some of the research (I do have a look every now and then on my mum's behalf, but there hasn't been much available).
I stumbled across some more work that has been on done to progress Dr. Dai's treatment that showed some signs of success. I guess it's worth a try. An OPK app can be downloaded on your phone - or there is even one on YouTube.
buddyboy on July 27, 2017:
Hi, I am a 65 year old male living in Buckinghamshire, UK. I have had a lifetime of working on and playing on boats, water-skiing, wakeboarding, sailing, yachting, windsurfing etc. In 2012 I had a (benign) tumour removed from my pituitary (this problem is probably completely irrelevant, but who knows, there may be a neurological connection). In 2015, I experienced what I have been loosely calling dizziness while in the Caribbean and doing a lot of swimming. This has slowly got worse. I have seen numerous doctors and specialists, but recently I have self-diagnosed this as MdDS, after a close friend read an article on MdDS and said - this sounds just like you! He is spot on. I have the classic symptoms: swaying, unsteady, unbalanced, dizzy, tinnitus, blocked head, congested (sometimes painful) ears, walking aggravates the symptoms, passive travel e.g. driving eases the symptoms, I tend to avoid bright lights, supermarkets, crowds and noisy environments. I can't think straight sometimes, eyes tested as OK, but vision jumps around a bit. What a nightmare we are all enduring. My main physical activity during this time has been cycling (but it is getting more difficult). This seems to be a mix of aggravating the symptoms (initially, say for half an hour), then easing the symptoms (eventually, after say one hour). When I get off the bike, then I am really dizzy. I'd really like to know if this is helping me or making things worse, but I just don't know. I've had two courses of Vestibular Rehabilitation (from two different therapists), but neither have helped (this aligns with MdDS too). I've not tried medications yet, but am aiming to avoid the addictive drugs like Diazepam, but may try a low dose at night of Amitriptyline, which has been suggested to me by an ENT familiar with MdDS. I think that stress (caused by MdDS!!) may be a contributory and re-enforcing factor, as others here have suggested, so something that calms you down might be beneficial. There are some other weird and wonderful ideas for treatments out there, but I have my suspicions about most of them. Just hang on in there, and make the best of it! (I may post this elsewhere too).
margaret on September 14, 2017:
I have had symptoms for 18 years, feeling of 'motion' as if I am swaying. Recently headaches are getting worse. When moving, walking, driving etc. I feel normal. When lying down or sitting I 'sway' all the time, have to take sleeping pills at night. I've had all the tests, seen many doctors and specialists without success. I had a 'glue ear' in the year before this started, but no boat or plane travel. ENT tests are normal. I am still looking for some relief!
margaret norman on September 20, 2017:
I have had this for 18 years. I had a 'glue ear' before it started, It didn't happen because of travel. I've had many tests, seen several specialists, to no avail. It is much the same now except I get headaches too. I take sleeping pills because it is worst when lying down. If I am moving, driving, swimming etc. I feel quite normal and the headache becomes less. I am English but live in France.
Inspired on September 30, 2017:
Responding to Ann R. regarding visual changes: Yes, my vision in my right eye changes sometimes within hours and the protrusion of the eyeball in the socket also changes.
Marsha on October 25, 2017:
My experience with MdDS is a little different than the ones I've read about. The first time I had it was after a cruise and it lasted a couple of months. Since then I've had it a few more times, but these episodes occurred after flights. The longest time I had these symptoms was 4 or 6 months (can't remember for sure now because it's been 5 or 6 years or so since I last had it).
Like others have said, the first time around I didn't know what it was and apparently neither did my doctor, as he was rather dismissive and seemed as though he thought it was all in my head or that I was just making it up. After that I came across a program on TV titled ?The Woman Who Couldn't Stop Rocking. It took a while for her to find a doctor who knew what she had (MdDS), but her symptoms were exactly like mine (the sensation of constant rocking). Even though mine has gone away, eventually, after anywhere from two to six months, when I have it, the rocking is constant.
Now my husband is scheduled for back surgery in less than two weeks in a city five hours away by car on curvy, mostly two lane roads. We are considering having a friend with a private plane fly us home, which would cut the trip down to 40-45 minutes, which would be great for my husband. I'm torn about what to do. I don't get MdDS EVERY time I fly, it won't be a long flight, and we won't fly as high as we would on a commercial flight, but I don't know if any of that makes any difference as far as getting MdDS is concerned. As I said before, so far I've always gotten over it after a while, but my fear is always - what if I get it again, but this time I NEVER get over it?
The posts I read here all seem to be from people who have had it for years. Has anyone else reading this had it like me, where it comes for months but then goes away until possibly the next flight or boat ride?
Kaew on January 14, 2018:
Hi Marsha, I had it in 2014 from a rough ferry trip! It's back now... not as bad as from the ferry trip, I am on my third week of suffering now. In 2014 I can't remember how long it lasted but it was into the months stage. My family keeps tellin me it will go and I will get better but I am worried that I won't. We did a long flight to NYC this Christmas and most of the flight there was turbulence, which I suspect caused the balance disorder. Been on a plane four times previous to that and had no issues. I just wanna get back to feelin me again, I feel like a different person at the min and I hate it. Keep tellin myself I will get better! Just hope I am right...if I have gotten better from a worse case before, surely I will again?
Sharon Sytsma on May 2, 2018:
I am in my 5th bout of MDDS, each session lasting longer than the one before (5 mos, 8 mos, 10 mos. and 14 mos.), and now I am starting my 4th mon. of my most recent episode. I was a professor and had to retire early because of the constant rocking, and the pressure in the ears and feelings of confusion. Apparently, unlike others, I tend to have chronic fatigue symptoms after rocking for a month or two. Even talking on the phone can trigger worsening of my symptoms. Only staying in bed can keep the rocking away....if they have stopped. In doing research on my last bout, I read that treatment for migraine helps some people with MDDS. I started taking nortriptoline as a migraine preventative and then went for vestibular therapy for about 2 months. I kept doing the exercises 1-2 times a day and the rocking did go away until 5 mos. later when I decided to take a flight thinking I was so much better and stronger. So I just finished another 2 mos. of vestibular therapy and have improved a lot. But anytime I do anything, even a short social visit, the rocking starts to come back. I anticipate that if I keep doing the exercises, I will soon be symptom free and start living a normal life. I feel badly for my husband because he has just retired and was looking forward to having the freedom to travel to exotic places.
I was interested in reading about the woman who developed MDDS after her company moved to a high-rise. I live on the 28th floor of a high rise building in Chicago. We had just started wondering if that might be a contributing factor.
Best wishes to all MDDS sufferers and their loved ones. And to others, please try to understand. MDDS is a very alienating disorder.
JK Hoping on August 12, 2018:
New possibilities for help for MDDS

Mount Sinai Human Balance Laboratory
212-241-6435

Timothy Hain Chicago Dizziness Center
312-274-0197

Mesa Audiology Balance Institute
949-642-7935

LIBR- Brain Institute
918-502-5100

Barschoen on September 5, 2018:
I took a World cruise In Jan 2018 which lasted over four months. I first noticed the MdDS on the day excursions we made after heavy seas in the Bay of Biscay. I didn'?t think much about it, because back on board I felt nothing. Now 4 months after the cruise, I have the rocking and swaying movement every day. It is worse than ever today and I wondered if the antibiotic Carithromycin I am taking for a week of bronchitis has made things worse. Anyway my GP has told me to wait longer for MdDS treatment.
Although I am on the wrong side of 70, I have always been in very good health, can read and drive without glasses and love a glass of wine. Now I am thinking I should stop the glass of wine and drink masses of water. Boo hoo. I am English but living in France. A trip to Mount Sinai Hospital would not be easy.
on September 30, 2018:
I am a 27 year old male so I pretty much defy all conventions of MdDS. I recently went on a boat trip with my mother in Central London. Before boarding the boat, we were made to wait standing in a queue on a platform floating on the Thames for about 30 minutes. Considering it was a windy day, the platform made me feel unsteady as we were bobbling for the entire 30 minutes. Eventually, we boarded the 1 hour boat ride and enjoyed it. I felt completely normal when getting off the boat and did not notice any symptoms of MdDS. Fast forward a few days later, I started to feel dizzy; but a dizziness which emulated the feeling of being on a boat. This was more noticeable during sleep, sitting still or being in the shower. I have noticed a slight sensitivity to light, busy crowded streets, feeling of anxiety, constant tiredness and sick feelings. Like I say, I am only 27 years old and this syndrome is having a profound effect on my life. I am so scared that this feeling will never leave. If there is any doctor based in London who is well-in knowledge about MdDS, please help me. I would be happy to be a guinea-pig and try new treatments. I would also just love to speak with someone who knows about this syndrome because I'm feeling helpless at the moment. Please help!
Samantha on October 13, 2018:
I was on IVF treatment when this started. I went to the gym the day it started, used treadmill for 20 minutes and other machines. I also drove on the motorway for 2 hours that same day. I felt dizzy later that evening and for the past 5 months been experiencing bobby feeling in my head when I am sitting or sleeping. I feel these mostly on my left side and my neck feels weird.
JON on January 25, 2019:
I am not a women in her 40s (typical), but a man in his 70s. Have had MdDS for almost four years. Got it on a long cruise & flight home from Europe. I can relate to everyone's frustration. I have had a lot of specialized testing from ENTs, but it all came out normal. That leaves the Neurological component. I'm following up on that now.
Cosette Randazzo on February 10, 2019:
Hi Ms. Houghton. Still suffering from MDDS do you still get relied by taking a boat ride on your boat?? Do you remember me from years ago (1997 approx)? I still do not get have nausea, but still have all the other symptoms. I use a cane also because I broke my shoulder from a fall, so I'm chicken walking. I have not gone into your site for so many years but I have picked up soom good hints to try, thank you for your continued interest in our malady. Cosette Randazzo
L on Nov 7, 2019:
Interesting scientific article on MdDS: Mal de Debarquement Syndrome (MdDS) by Dr. Timothy Hain of the Chicago Dizziness and Hearing clinic
Brigitte on June 22, 2023:
Hi there,
just found this page and it helps to know I am not alone. Like everyone else, my GP diagnosed me with BPPV and vestibular labyrinthitis. Been prescribed antihistamines and prochlorperazine and cinnarizine.
My problem is, I work in safety critical conditions, they want to make sure I will be able to do the job. Swaying in itself is not necessarily a problem but brain fog and blurred vision is. I need to find a way to alleviate these symptoms.
Anastasia on April 8, 2024:
Please! Can someone tell me if MDds affects your vision too? I'm going crazy because I've had sooooo many tests. I've had an MRI, blood tests, caloric and VNG tests for my ears, two eye tests, and they're all clear and normal!

I notice the lady in the interview speaks about 'seeing' her rocking and bobbing. Well, I see it too! I see objects moving like they're on water and I see words moving as I read. I see the room rocking and swaying as I feel it too.

I'm only 32 and I'm so scared that I can't find what's wrong with me. I've been diagnosed with MdDS because there is nothing else left.

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