My personal journey with Mal de Debarquement Syndrome (MdDS or disembarkment syndrome) began over eight years 
ago, even though it is supposed to be a “self-limiting” disease.  I have been part of the MdDS Balance Disorder Foundation to help get recognition for this rare and often misdiagnosed neurological syndrome.

The hallmark symptoms
 include a feeling of rocking, swaying, bobbing, or bouncing after a 
passive travel experience that seems to disappear when a person returns to 
motion such as during a ride in the car. There are a host of other
 associated symptoms such as brain fog, fatigue, visual disturbances,
 headaches, insomnia, and loss of balance.

Despite that fact that Charles Darwin’s father writes about these feelings
 in the late 1700’s after boat and stage coach travel, there has been little research. There 
is no know cause and no known cure. Currently, there are a total of two 
researchers who are studying MdDS. There work is, 
in part, supported by direct donations to the MdDS Balance Disorder
 Foundation.

Despite trying many 
medications and therapies, over the last eight years, my MdDS remains much as it was in the
 beginning; the only time I do not feel the motion is when I am in the car 
or asleep. I am barely able to work part-time and some days I cannot take 
care of myself since the rocking motion is so intense, I cannot stand up
 long enough to make a meal or take a shower. Small enclosed places and/or large noisy ones are extremely difficult.

In order for the medical community to acknowledge Mal de Debarquement 
Syndrome, there needs to be education in their training; medical school, 
nursing school, PT and OT training, etc. A well funded research and awareness initiative in every medical school 
around the world would be a great start. Until medical professionals are aware of, 
and understand the detrimental impact MdDS has on one’s life, there 
can be no treatment or cure.

The National Institutes of Health
 (NIH) acknowledges MdDS but does not understand the full negative impact and
 longevity of the disorder. We are aware, the Navy and NASA deal with MdDS but in a
very private manner. If the government were to acknowledge the number of
 cases from these two entities, MdDS would no longer be rare.  We have applied to the cruise lines for
 grant monies to research MdDS which would obviously, be to their benefit.

Currently, there are only two small research studies being done on MdDS, one at Ohio University and one at UCLA. Information about both are
 available on the MdDS Foundation website. The Foundation maintains
 ongoing surveys which collect information about those living with MdDS.
 The results are often published in the Foundation newsletter.

Although it is difficult to maintain hope, I tend to consider that three
 years ago there was no ongoing research into MdDS and there were only a 
few awareness initiatives. A few years ago, my husband and I, along with
 another woman who lives with MdDS appeared on Medical Mysteries with John 
Quinones – it was the first time MdDS or Disembarkment Syndrome had been 
featured on a national level.  

Many more cases of MdDS were identified 
after that coverage, and the Discovery Channel did a segment called “The Woman Who
Could Not Stop Rocking” about another person with MdDS.  

Deb Russo
MdDS Balance Disorder Foundation

94 thoughts on “Mal de Debarquement Syndrome: A Rare and Often Misdiagnosed Neurological Syndrome”

  1. Thank you, Deb, for describing your life suffering from MdDS, and creating awareness about MdDS. My hope too is that every medical school in the country taught a course about mal de debarquement syndrome and how it affects one’s life. I’m right there with you, since I’ve suffered from this syndrome for almost 14 years.

    We need to convince unknowing, disbelieving doctors that this is a very real condition that requires a proper diagnosis and treatment.
    Marilyn Josselyn

  2. Jane H says:

    Thank Deb for doing this interview. If it wasn’t for you and the amazing efforts of the all volunteer MdDS Foundation then there would be no hope for those of us who suffer from the condition. The Foundation, amongst other things, has been instrumental in actively pursuing research into MdDS, something that sadly isn’t happening outside of America, and as someone who lives in the UK, I can’t thank the Foundation enough for that. For the first time in many dark years of living with MdDS there is finally a glimmer of hope for us all.

  3. Cheryl Hall, MA, LPC, NCC says:

    I feel it is important to educate professionals, including mental health professionals, of the debilitating nature of the condition, even when a person looks quite normal. What goes on inside a person, and the negative impact on a person’s life of the debilitating symptoms, can significantly increase anxiety and depression . It is very important that these issues be addressed, and positive coping skills be explored.

  4. Pat Laing says:

    I have been suffering from MDDS this time for over twelve months now. fortunately this time it is not quite so severe as the first time which appeared to ahve gone after about 9 months. The first time I had a course of hypnotherapy which seemed to help me to be determined that the MDDS would go away. During the 9 months I had odd days when my head would be clear. I did lots of walking preferably in the countryside away from cars and lots of people. I also found that if I had a really bad day the next would be better. I believe that good sleep is also a factor and as I never sleep terribly well I think it helps to perpetuate the problem. My first occurence was after a Caribbean cruise followed by a long car journey and getting up in the middle of the night to see a shuttle launch which was actually called off in the end. The second occurence was after a Mediterranean Cruise followed by a flight back to the UK. I am still determined that it will go away and intend to see my hypnotherapist again very soon in addition to lots of walking now the weather has improved again.

  5. Tara Garner says:

    I was Diagnosed With Mdds. back in March of 2012, My Dr. was able to Diagnose this Quickly, but said he only had limited ways to treat it, because there hasn’t been enouph research on this Syndrome! I have been on Meds. that help sooth the symptoms, but can only be on these meds. for limited time. Its been Frustrating because me and my husband have waited til our children were grown to travel more extensively! I feel my dreams going down the drain! At least until there is a Cure!

  6. Chris L (male) says:

    Firstly, thanks for all you do to raise awareness, especially with professionals.

    My first experience of MDDS was when i was aged 14 (42 years ago). I was on a school trip from England to Austria. The ferry crossing to France was fine, the long train trip aftwerwards was okay too. But when i arrived at the hostel I found the staircases and corridors to be floating up and down as if we were still aboard the boat; I was convinced that the dormitory was ON the lake, when in fact it was right beside it. The sensation remained throughout this (and every subsequent trip involving a boat or plane) for about 10 days, Unfortunately in my 40s daily long distance driving resulted in the sensation becoming permanent. Over the preceding 25 years I’d often described the sensation to ENTs, GPs etc, all of whom looked at me blankly. Then, 9 years ago an occupational nurse asked me if I’d ever heard of “disembarkation sickness”. No, but I sensed for the first time that I might not be alone with this after all. Some trawling around took me to the Foundation’s website, following which I paid a lot of money to get a formal diagnosis. Now in my mid 50’s I’m resigned to the reality that there’s no sign of it ever going away on its own.

  7. SandyC says:

    Thank you Deb for all your work on the MdDS Foundation. It’s been 5years. Coping … I totally agree with Cheryl Hall … at first I thought I would get better and didn’t do research … and then I realized I wasn’t going to get better … the greatest moment was when I found a blog that described, as you have, exactly what I was going through! WOW ! I have found that going to an exercise class has helped keep the rest of my body stronger. I hope we can get information from NASA and the Navy and anyone else that could help all sufferers. One’s life is totally changed by this syndrome.

  8. Gill Archer says:

    Deb, Thank you so much for doing this interview. It is great that awareness continues. I thank you and all members of the Foundation Board for all your hard work. A lot of the work you all do, we probably dont see but I know that you are all fighting for answers and to ensure that more is known about MdDS.
    Thank you so much, you are amazing

  9. Rosanne Jensen says:

    Thanks so much for bringing more awareness to this horrible thing we suffer from . I’m now at 13 years plus . I thank God daily for giving me the strength and stamina to keep on keeping on . I’m glad that our words and show’s are repeatedly being shown . I have people get in touch with me at least once a month or so just from Seeing the Mystery Diagnosis show that’s on re-runs on Oprah Channel and a few others. Sending love and light and prayer that SOMEDAY we will feel the earth under our feet again ! Love you all , Rosanne Jensen

  10. Susan C. says:

    Thank you, Deb, for persevering so long to keep our debilitating and life changing condition in the public eye. Your efforts to get the medical profession on board seem limitless. Doing all this whilst ‘journeying with MdDS’ is herculean, you do deserve our thanks and encouragement.
    Sadly, all my 3 daughters, now in their 40’s, have experienced short episodes following various forms of travel. At this time, my youngest, who actually found my severe symptoms matched MdDS on the internet very soon after my onset back in 2004, is actually 6 weeks into another episode herself. This after her flight home to England from Spain. Her longest experience has been 3 months.
    In the past I did have some periods of remission, but not for years now. I had confirmation of MdDS from a consultant 4 years after it started, having gone through the many, many tests that all of us have had. However just knowing that the Foundation was there, was and is a lifeline as also, for me, is Jane H. Our British website heroine!

  11. nicholas says:

    Tara, what are you taking to help the symptoms?

  12. Terrie DJ says:

    Deb, Thanks so much for sharing your story. I have been suffering with this for 2 years. I am not able to work. I thank god for a hubby that is so caring and understanding. It has certainly changed our lives. I hope and pray these symptoms ease up or go away. I am fighting this disease with everything in me. One day at a time……god gives us strength. We certainly need it….who would ever dream such a disorder exist……we have the get the word out to the medical field.
    Hugs gf, Terrie

  13. kristin dawson says:

    Thank you to everyone for posting and creating a network of hope. I was diagnosed in April of this year by an ENT with MDDS – I ended up in a psychiatric unit at Stanford Hospital with pronounced anxiety, depression and suicidal thoughts following months of brain fog , fatigue and constant rocking, swaying and bobbing sensation. I, too was met with blank stares by the numerous doctors, neurologist, psychologist and psychiatrist I visited after a 4 day cruise when MDDS set in. I have lost my job and prospects for returning to work full time anytime soon look dim. BUT MY STORY DOES NOT END THERE!! To those who have not found help yet – Please take the MDDS Foundation Web Page to your primary care physician and show them exactly what you are dealing with – there is a link there specifically for physicians. SHOW them thisis real, and let them know that while you acknowledge there is no cure, you need to be reated for anxiety and depression produced by MDDS. Klonopin has helped me withmy rocking sensations and Lexapro has helped with the anxiety. A primary care physician can prescribe you both – at least in California, if you cant afford a psychiatrist.. I am in direct contact with the reserchers at UCLA – the first study has ended for now, another one will start up, time TBD. A researcher at UCLA who was working on this is moving to the Bay Area to do further research at Stanford – she is specifically studying MDDS in relationship to Migrane headaches and I will be seeing her – I will keep you posted. . Rest is essentail to keeping MDDS in check. Dr. Cha at UCLA, who conducted the first study and will start up the second one, told me people with MDDS need 12-14 hrs of sleep a night. Women with MDDS – there is some connection between menstration and symptoms increasing 3-4 days before your cycle. I have expereinced this along with crippling migrane headaches on the first day of my cycle. This seems to indicate a connection, what that is, I dont know and doctors dont either . With Lexapro (10mg a day) and Klonopin (down to 0.5mg at night now but that may have to be increased to 1mg again) AND Cognitive Behavioral Therapy, I have been slowly getting my life back. IF ANYONE is living in or around the bay area and wants to meet up with me to support each other – I am interested sharing and receiving health tips, support and continuing to move forward in a positive way – please contact me at ieattoast2000@yahoo.com! I can tell you that I am no longer suicidal, but it took EVERYTHING I had mentally and physically and (MOST IMPORTANT) the support of my spouse and family to get me here. I beleive that together, we can help each other get thru this. It is my hope that if I can get in touch with even 1 more person in the San Francisco Bay Area with MDDS, when I go to Stanford to meet with the researcher next month, I can refer others to her for this study to get off the ground. Above all, dont lose hope. I have been able to live with MDDS – YOU CAN TOO!!

  14. I wanted to thank you for this very good read!! I definitely enjoyed every bit of it.
    I have got you bookmarked to check out new things you post…

  15. maryellen arney says:

    My husband has been living with this for a year now. After a boat ride we ended up rushing him to the ER, thinking he was having a heart attack. After many tests and doctors visits he finally was diagnosed with MdDS. It has been very hard for everyone. At this time we were in Florida. The strangest thing though is my daughter’s boyfriends father just came back from Florida by airplane and he is having these same symptoms! I would like more information on becoming a part of the foundation. We need to raise awareness of this syndrome! We need more donations for more research!!! Please get back to me asap. Anything I can do, I will!!!

  16. Lori says:

    I had mal debarquement after a trip in which I had train travel, air travel and ship travel. Like you I suffered from fatigue on the trip. It lasted 2 months and was very annoying. It was worse when sitting. I still went about my daily business but I am retired. It would have been terrible sitting at my desk working. I want to take another cruise I wonder if it will be the same or worse or if it might not occur this time.

  17. melanie galluppi says:

    i had mdds after going on a whale watching trip in July of 2010. it was terrible. I am a nurse and found trying to focus at work almost impossible. My father had a heart attack in December 2010 I flew on a plane from Pennsylvania to Tennessee to see about him. On the way back I had to fly through NC. Within about 5 days of returning home my symptoms disappeared. Then the symptoms came back in February of this year after running on a treadmill. When i stepped off of it I felt dizzy and the next day I was rocking again. The rocking wasn’t quite as severe as the first time. I took a trip to flew to mexico from Pa and back a week later, again going through NC on the way home. Again within 5 days my sypmptoms have disappeared. I hope they will never come again!!!

  18. Suzanne says:

    I just got back from a cruise to Bermuda this past Friday. The first night on the ship was rocky but after that the sea settled down. I remember feeling the rocking motion in my head but did not get sick to my stomach. The rocking and swaying motion disappeared after the first night and I was fine. My boyfriend however experienced motion issues the whole time on board. When we arrived in Bermuda he was glad to be off the boat, I however still felt like I was on the boat. I figured I just needed to readjust to the land. It did not go away the entire 3 days on the island. The cruise back home was fine for me but my boyfriend could not get off the boat fast enough when we arrived back in Boston, MA. Since we got home Friday I have had severe headaches, fatigue, and the continuous sensation that I am rocking and swaying as if I am still on the boat. My boyfriend actually found what it is I might have. I am hoping it goes away quickly because this is a horrible feeling. My heart goes out to all that have been dealing with this for months and years. I will be sure to contact the MDDS foundation.

  19. evelyn r says:

    I went on a second cruise after my initial bout with mdds which lasted 18 months. My daughter graduated nursing school and wanted the whole family to go on a cruise together. I figured the odds were 50/50…….but sorry to say after that cruise I was rocking again for another 18 months.

  20. Wasim says:

    I have these exact symptoms only the weird thing is I didn’t go on a trip, I didn’t go on a ship or plane or anything! In February 2012 i was at work and went to the bathroom where I felt a very weird shifting sensation! Ever since then I’ve gotten the feeling like I’m on a boat, walking through trampolines, unsteadiness feeling! I have been to countless doctors, done vestibular exercises, and taken motion sickness pills like meclizine, bonine and patches but none helped! I went to a neurologist who showed me about mal de barquement and he said there was no known cure but really I just want this unsteadiness feeling to go away so I may just get some klonopin or benzodiazepine or something! It really saddens me to see that people still have the symptoms even after the estimated 1-3 years of lasting effects… 🙁 I’m losing all hope. The good thing is I don’t let it stop me from doing things with friends and family but when I’m doing these things, its a challenge just to have fun and just be normal 🙁

  21. LaRee Tillett says:

    Thank you for your info. My physical therapist suggested that i might be sufferring from this syndrome. It so sounds what i have lived with for around 40 yrs. Do you know of any treatments that work? Please let me know.
    Thank you and God Bless,
    LaRee

  22. Sarah P says:

    In 1995, when I was 13 years old (about to turn 14), I flew from Chicago to Los Angeles to Sydney, Australia, to Cairns, Australia. I was on the plane or waiting for flights for over 24 hours, and for the next 2 days I felt like I was still on the plane. I’d done a lot of traveling and flying (flights each year between England and the US as I grew up), but that had never happened before. I’d just begun menstruating 11 months earlier. When I was 19, I went on a 7 day cruise. I had trouble walking straight when we stopped for day trips and I definitely had “sea legs.” I had been stung by a Portugese Man o’ War 2 days before embarking, and halfway through the cruise I started prednisone to try to get the stings to stop itching and being so inflamed. When I disembarked, I felt fine. At age 21, I flew from Utah to Georgia (USA) then to Madagacar, stopping in Paris for a layover on the way. We were flying for over 20 hours. I had my first extended MdDS episode the whole month we were on vacation there, though at the time I thought I was reacting to malaria medications. My next episode was in 2008, a 5 week episode following a trip to Belize (several days on a small snorkeling tour boat, small airplanes, lots of car travel). Again, I though it was the malaria medication and didn’t push for a diagnosis when doctors couldn’t find anything.

    Then in 2009, I had an episode that was a 9 on the MdDS scale. I’d drive to work successfully, but as soon as I got out of the car, I became so sick that I could only lay on my back in the back room of the office. I lost that job, dropped out of my online teaching certification program, and was bedridden for a month. I couldn’t watch tv, use a computer, crochet, or read a book. It made me wildly dizzy and nauseated. Since then, I’ve had 3 more 2-month attacks and been properly diagnosed with MdDS after having all the tests to rule out other issues, and now I’ve given up traveling completely. We even moved across the country away from our beloved home and state, to be nearer to family so I don’t have to live with only being able to see them if THEY can visit ME.

    I am 32 years old and even though I’ve been in remission from rocking for over a year, everything from looking at flashing lights and using a computer to standing up at the same time as I try to turn around and riding in my husband’s car for even 20 minutes makes me feel extremely dizzy, off balance, and brain fogginess (sometimes including headaches, nausea and extreme fatigue). I feel I have sustained brain damage from the 2009 episode, as I have never been the same again. At least I’m not rocking, and as long as I don’t try to drive too far, fly, or get on a boat, I hope it will remain that way. I still wonder if prednisone helped me avoid an episode while I was on the cruise, or if I just wasn’t going to get an episode that time. Next full blown episode I get, I have a prednisone dose pack waiting for me. It’s the only other thing anyone can think of to have me try. My last hope for ending an episode. I still work 32 hours a week (at a computer, because I can’t do much else with the dizziness and fatigue), but this illness has changed my life completely.

  23. Jerry says:

    Wow. I have had this for about 9 yrs. Started out slow and progressively got worse. now I work from (thanks to my company) because sometimes it gets so bad I have to lay down. My social life is gone because of my dizziness. I go to the grocery store very early in morning shortly after getting up just so I can get through the store. All this has increase my stress and little depression. At least now I know I am not the only ine have this issue. Didnt know about MdDS until my sister told me about someone she works with that has it.

    Can how much has been spent on brain scan, cardio evaluations, ENT, and PT. Getting acupuncture treatments now. I’ll see how that goes.

    Have noticed when barometric pressure is below 30.0 I am worse.

    Currently I live at over 5280 feet and looking to move closer to sea level. Thinking that might help too.

    I’ll donate when I can. Wishing all recovery soon.

  24. Jerry says:

    Wow. I have had this for about 9 yrs. Started out slow and progressively got worse. now I work from home ,thanks to my company, because sometimes it gets so bad I have to lay down. My social life is gone because of my dizziness. I go to the grocery store very early in morning shortly after getting up just so I can get through the store. All this has increase my stress and little depression. At least now I know I am not the only one that has this issue. Didnt know about MdDS until my sister told me about someone she works with that has it.

    Cant tell you how much I have spent on brain scans, cardio evaluations, ENT, and PT. Getting acupuncture treatments now. I’ll see how that goes.

    Have noticed when barometric pressure is below 30.0 I am worse.

    Currently I live at over 5280 feet and looking to move closer to sea level. Thinking that might help too.

    I’ll donate when I can. Wishing all recovery soon.

  25. Jana says:

    I have not been officially diagnosed, I saw two different drs neither of which could help me and the tests and physical therapy just became too expensive. I am sure this is what I have. I seem to fall in the right category too, female, migraine prone, middle aged, 7 day cruise. The first year was very disturbing but now, 2 1/2 years later sad to say, it’s the new normal… I can’t remember what feeling still feels like. My short term memory is shot and sleep is critical. But I am grateful it isn’t something terminal. I am wondering if anyone has notice symptoms getting worse with age (for those of you who have had it a long time?)

  26. ron flanagan says:

    I believe that I may have this disorder but have not been diagnosed! I believe working at heights and out of a manlift triggered this!how do I get help? been off work 5 months and going thru vestibular rehab!

  27. Tired of this says:

    I am a young girl in my 20’s sufferin with this now for nearly 5 months from a 3 hour boat trip. Bad vertigo attack a few hours after trip left me unable to walk for 3 days and in bed for 2 weeks and couldn’t walk very far at all for a month. Got this in Australia and had to travel home 3 weeks later to the uk. The rocking come back worse at home an ruined my Christmas and I cannot work. Feel like everything has been taken away from me and I am so down but trying to stay positive because I’m a positive person. But I am nothing like the person I was before this. I was diagnosed at ENT and by a physio with mdds after all tests she said it is not dangerous or life threatening. She said she thinks it’s a form of migraine. My ears have been popping and ringing and feel wet all the time which is odd. It is very scarey. A friend of a friend told me she had this for 6 months some years ago and by eating only fruit veg and pure protien with a low carb diet helped her. I have been trying this I feel better with my day to day tasks I have a bad episode of an evening tho now and again where everything moves faster and I feel like I’m moving and my heart races/. Maybe this is anxiety after the past horrible months of torture. Every morning I have looked into the corner of the room and checked if it is bouncing, this bouncing is stilllll going zzz but seems to be getting slower. I have noticed the days I have excercised and ate very very healthy with no carbs sugar or salt at all and I am quite busy I don’t notice it until I am bed but I try and ignore it. Most mornings now I get up nearly normal but I have to try and keep busy I I sit around to much I start feeling sick at te thought of the floor moving up n down or side to side. I am waiting to see neurology but after tests they said it is not damage or anything to my brain as if it was a tumor for example the same part f brain that would make me dizzy is the same part that will make me deaf.. My hearing is fine. This is a limiting condition some days I don’t wanna go out the house and some days I’m up n out n accept I have this am it won’t go better sitting down as I’ve been strongly advised to excercise outdoors. Most days it’s hard and tiredness makes me worse so if I tired myself I have a harder time sleeping as heavy head n pressure an rocking returns. Sometimes it feels as tho there’s a trapped nerve in front of my brain going side to side so fast. Maybe it’s some sort of virus or infection? I don’t know but I’ve been eating lots of fruit and veg meat
    Garlic almonds all things good for my immune system. Plenty of green tea like 4 cups a day caffine free. Ginger tea. I am allot better than I was last month and I sway but can do nearly everything it’s annoying attacks that come like last night I had 3 tea spoons of honey as my doc said it may hellp my immune system as I’ve been getting colds and coughs and little infections one after the other .. And it cleared my throat everything went crazy room was swinging floor bouncing heart racing started to panic fell asleep crying.. Realising that honey has so so much sugar in. I cannot work still and my speech is slurred. I am active tho and have all of my life to live and a beautiful relationship to fight for. All I know is when I have alcohol or a late night I am in bed for about 3 day with it an that’s only 2 or 3 drinks if that. If I have a creame egg or a cake or a pizza I rock where I can only watch tv to take my mind off it. So it’s not worth it and my body should be so healthy now but I keep on getting different infections to deal with while I’m suffering from this. I just can’t win, but I am grateful I am not as bad as I was in November and January.

  28. Tired of this says:

    Just want to add before this I was a healthy girl everyday in the gym healthy diet never sick .. went to dancing always busy. working as a nurse everything has been taken away from me really and I want this to go.

  29. Bobbi says:

    Very interested in a cure–been diagnosed for 6 yrs now.

  30. Angela Dean says:

    Hello – firstly I’m sorry to hear of your suffering. I suffer with ME, thyroid, arthritis, migraine and depression though with bouts if vertigo. I started on a plant based nutrition program in November which had changed my life, so much so that I now sell it. It’s GMO, pesticide, chemical free , pure fruit n veg which is bioavailable meaning it goes straight into your blood stream, therefore, works system wide at cellular level. If you’d like to know more, please contact me on 07872 515365 or email me at angied3853@yahoo.co.uk. Kind regards . Angela x

  31. Lynn says:

    Hi!
    I have been experiencing MDD for 30 years. I never knew it had a name until I watched an episode of The Doctors this morning. I never met anyone else who had or understood it. Many things trigger MDD for me. The first time I had it, I had walked on a swinging bridge. I get it from some airplane rides, from being on boats, sometimes even from being in tall buildings that have sway. The good thing for me is that I always know that it will end about 8 weeks after it starts. Meanwhile, I’ve had to adjust my activity to help me get through the rough spots. I’m so sorry for those who are unable to get relief. And I’m so happy that I’m not the only one.

  32. sandie says:

    I went on a cruise 3 years ago and was fine on the cruise. 2 days after the cruise I started getting dizzy. I have fallen and have bumped into people because my balance is off. A few women that I bumped cussed me out and one was ready to hit me at Costco. I have seen several different doctors and none of them know what is wrong. I am so happy that I seen the show doctors today so I know that I am not crazy. I am off work right now because I fell down the stairs in my home and dislocated my right thumb. One day at work about 2 years ago my boss told me to go home because my balance was off and I could not walk straight. I had to go to the doctor to get a note stating I was okay to work so I was off for an entire week. I find it hard to do my job because of the dizziness. I’m glad to know that I am not alone.

  33. Jan says:

    Two and half years ago I went on a. 12 day rough ocean cruise and I have been unwell since it is like living my life on a trampoline I have been diagnosed with mdds and many other things by different doctors, I have tried numerous medications I have had of severe dizziness which I have been hospitalised for I find this so debililitating the only time I am not rocking is in the car but if I stay in the car to long I will rock when I get out it is a juggling act. You learn coping mechacanisms like leaning on thing so you don’t rock as much as people can not possible understand that are not suffering mdds I am not able to work at the moment. I would be very interested in any new information anyone has.

    Together we have to beat this .

  34. Jennifer says:

    I think I have this . I have had vertigo that is caused by damage deep in my brain. Everything that I read here matches up with my symptoms. I founf Prevagen 2 years ago and i finally got off the boat as I called it. Recently it came back, so I now take an increased mega dose of Prevagen , 20mg 3 x a day and is helping again. I get it from my local health food store..

  35. Kyle Allen says:

    Im 17 and have had this for a year. I go to bed every night scared knowing I’ll wake up like this. God help us this is a nightmare. It gets worse when im done swimming.

  36. Laura says:

    I got mdds after a 8hr car drive, it really it me hard a week later. I couldn’t sleep I felt like a was on a boat. My Dr told me I had vertigo so I asked to see a physiotherapist, I found one that specialisted on vestibular issues and that’s where she said I had mdds. I started acupuncture and had exercises to do 6 months later I’m still having symptoms but they are going away very slowing! I went to many drs that has never heard of this but I did find one and he said time and rehad with no drugs is the best way to beat it. I was very depressed cried every day along with my movement I was really dizzy and unbalanced. My heart breaks knowing this happens to people cause it is so horrible. But time and therapy helped me.

  37. Jen says:

    I have had mdds for 2 months now following a week on the lake. I am happy to know what it is and that it’s not anything worse… But it is hard to deal with mentally sometimes knowing there is no cure or magic pill to help with the symptoms.
    I am so thankful there are others out there that understand what I am feeling like on the inside. I look healthy and beautiful on the outside and always try to wear a smile. But my insides feel like I’m trapped on an amusement ride that never ends. UGH!!!!!
    I have heard so many different things. My Neurologist scared me saying do not do anything that makes the symptoms go away for example swimming, long trips in the car, train, boats, planes or medication. But life has to happen 🙂 So I’m curious what you other sufferers have been doing to enjoy life. Walking? Hiking? Swimming? We still need our exercise even when it’s hard to function some days…

  38. Debbie R says:

    I got this when I landed 10 years ago after a pleasant one week cruise. Symptoms slowly dissipated after a few days. I leave for another cruise next week. Is there anything I can take to Prevent it? It was horrible.

  39. Tired of this says:

    Hi it’s m again . Now I’ve had it for ten months and I want to let you know that it does get better!!! Very very slowly I am allot better now CT scan ear scans its all fine. Stay away from too much sugar salt and cheese.. I do have it in small amounts. STAY HYDRATED I mean allot of water. Days in bed are a no no, the less busy you are the more u get a headache from noticing it and watching the walls move. Doesn’t help with anxiety sitting in bed and thinking about it. I now live a normal life no long car rides and hour max! I still feel funny after car journeys . I stil don’t drink, and I sleep when I get tired, I don’t over with myself, after a late night I’m rocking for 3 days, not as bad as the start but annoying as I felt I’m getting better then get back tracked. Does anyone else have alcohol ? Also I have tablets for my period pains called mefanamic acid and it stops while I take this. But pretty large doses its nothing I can have on a daily basis. Before my period starts I rock most I don’t know if its hormone relate or my body is in distress. But hoping for it to be fully gone by Christmas… It’s taking its time but things like this do take time. Anyone ever wandered if this is a type of vestibular neuritis or nerve damage and its just a coincerdence that we went on a boat? Because like I said I have been on all rides and travelled all of my life an never a problem. I have had so many infections as a child too. My ears are wet and when I breathe in spray or a strong smell such as perfume smoke or deodorant I feel the sway more x

  40. Tired of this says:

    Also was your first day/night with this so bad u couldn’t walk and was vomiting everywhere, sweating and a feeling of falling through the floor when eyes shut and rocking like the biggest ever pirate ship, because it didn’t hit me until hours after I got off the boat, these are all the symptoms of vestibular neuritis but my ent is ‘ sure’ that it is mdds. the boat was not on rough seas and I was on it 2-3 hours. Did u all get it the moment you stepped off and was it a much worse motion that the actual thing

  41. Sarah says:

    To reply to a few new comments: klonopin/clonazepam or Xanax may prevent an episode. My doctor says proper dosing for prevention is to take it till you feel loopy but not unconscious. I also have a prednisone Medrol dose pack. I’m supposed to take it before travel. Last time I took it within an hour of symptoms starting and still had an episode (my MdDS episodes last 2 months, then go into remission). Next time I travel (which I’m avoiding), I should start the dose pack before I leave.

    Also someone asked if the rocking is worse than the actual triggering event, and for me that’s a big yes. I just had an episode from a smooth 1 hour ferry ride with no big waves. I barely felt the boat’s motion so I truly didn’t think I’d be triggered. But the next morning I suddenly felt the symptoms start and within 3 days it was unquestionably the beginning if another episode.

  42. jim says:

    I am sorry to hear so many people suffering with this disorder. I began to research it when my sister had these symptoms. I am a physical therapist and suggest, if you havent already done so, to seek out a PT trained to treat vestibular disorders. I dont mean a PT who went to a weekend course but rather one who has treated many cases and has proper training and research under their belt as the previous may mae the issue worse. True vertigo is often completely curable with 2 to 3 treatments! I know this may seem unbelievable but its true. Mal disembarqment is a different entity all together. Good luck and God Bless!
    JIM

  43. Christine Lynch says:

    Laura,
    Did you drive the whole 8 hours or were you a passenger and someone else was driving?

  44. Lisa says:

    I went on cruise in 2009. Have had this ever since. Went through all the Testing. Any help is appreciated

  45. Jeanette Johnston says:

    Jennifer I have had mdds off and on since 2008. I went on a boat ride with a friend and I have been on the boat since that time. As of lately I have been doing okay. An occasional long car ride can set me back but it will subside. I feel very lucky to have the remission times.
    I am interested in your medication you have tried. I am curious to know what the medicine is for. What is its purpose?

  46. I have had MdDS for the last ten years, 24/7 (except when asleep) I am 63 and as you age the symptoms don’t get worse, but your ability and reaction time in correcting your symptoms slows down. This increases your likelihood of stumbling and falling. I feel for everyone who has this syndrome. It is difficult for others to understand how life altering this condition is.

  47. Jigglyjawa says:

    Hello Fellow Wombles

    I’ve had this for 8-ish years, I think my MdDs is from when I had a bad reaction to a new version of Calgon the one with the red ball of doom (I also have Urticaria), or it was a reaction to the Telfast (large dose antihistamine) i was on which gave me all the side-effects under the sun! I’m so the luckiest person on the planet, at least it gave the manufacturers some good info on their product though). I wasn’t as bad as some people have been with this and i’m pretty good now,it’s been better and it has flared up recently but i’m still functioning (probably not as a human being, but when has that ever been true for me?).

    I am very careful with everything in my life and am lucky to have a husband who likes cooking so I don’t have to put my clumsy self in danger making food. I often have to get him to make the tea cos i’m too scared to pick up the kettle, or bring my cup up the stairs for me in case i trip and burn myself. I have to warn him if i’m moving with knives in my hand (washing up) in case i stumble, trip or whatever and stab him!! (not at all paranoid me, i’ve never done this i must add, he’s completely unharmed and not battered or living in fear of me… though he probably should be). He met me long before this started and is used to me being a clumsy oaf (I hate door frames they’re cunning sods, all nonchalant and acting like you’re not there then boom they’re a foot further over than they were a second ago and shoulder barged me into next week), and so he often forgets I have a problem until I tell him i’m am ‘womble’ or i suddenly pitch to the left while standing still (i so love when that happens).

    I have some anxiety and depression over this rubbish condition which often stops me doing the many sports I love (triathlons, karate, rollerderby). I’m often too scared to do go to practice, if i’m already having a ‘bad’ day i fear exercise will make it worse by tiring me out or the movement (vision) will affect it.

    I see it as a pathetic syndrome, I look normal when i’m ill so I feel like a charlatan, and the Doctors I’ve seen haven’t helped here. My GP didn’t want to refer me, luckily i worked in a hospital as admin at the time so I asked my boss to refer me. The first ENT doctor basically told me to go away, saw him again the 2nd and 3rd and just agreed with MY guess that it was MdDs and then regurgitated the front page of a website found at the top spot in a google search).

    He actually said to me on the 3rd visit “What do you want to get from this appointment”.
    Oh i dunno Dr Dearest how about some bloody respect and professionalism from you? Just because I have something you’ve never seen before doesn’t mean i’m making it up.
    Sooooo wish i’d said that, but then I also wish i’d seen the Dr that was off ill that day and not him again.

    My sports help me and hinder me, they keep me going and make me worse. My karate instructor and the class are very good about my weird and sudden unbalancing acts and laugh, point and roll their eyes accordingly (which stops me feeling as self-conscious, YES i’m weird). Sensei knows when to tell me to sit down as I am usually too stubborn to do it myself.

    I try not to let MdDs stop me doing my sports or trying others but I have to warn everyone about what I might do, just in case they panic, or i accidentally punch them in the face.

    Lots of things set it off, stress omg STRESSSSSS (work is a blessing here, i’m never stressed at work… I might be lying ever so slightly), too much exercise or not enough, being hungry or eating the wrong foods (lots of refined carby food/grains/sugar seems to be a big trigger), being thirsty (tea IS GOING OUT OF FASHION!!! I must keep whole countries of tea pickers in jobs), being tired (which is a lot seeing as this syndrome causes me to tire), peripheral movement (i hate shopping (more than before i got ill)), crowded places with people (not helped by me being a misanthrope), trees at the side of the road with a low sun when driving, too much light, flickering light, the wrong sort of light (i ofter wear my sunnies in work, or in the shops, just to look like a total moron you understand), some people’s driving, being too hot – which is most days for me as i run hot grew up in a relatively cold, unsunny city (scotland) and now live near london, so 10C to me is the perfect temperature (bikini weather as i call it), anything above 15 is like being on the sun, work is not fun!). My periods (hormones) make it worse. I also have endometriosis and hormonal migraines, which don’t help any. I take mefanamic acid also and don’t find that it helps with the symptoms as another lady on here has. Ugh, stupid body, do what that ladies does please!

    I have a ‘mild’ version of this, I know some people who are properly disabled by this. I have rarely been unable to go to work or drive, I fight through it, I ignore it, I do my best to treat it by not setting it off.

    It’s hard to live with, it makes me grumpy (sorry grumpier, I am Aberdonian after all, it’s our natural state. My resting-bitch-face is epic and i’ve never had to work at being this stunningly dour-faced, it’s a gift).
    It makes me clumsy(ier), stupid(er, i was never the brightest button in the box right enough), brain fogged on occasion (not a rare occasion), rocking and fidgeting helps (but sometimes doesn’t), i have weird full ears, bad neck and a weird feeling in my neck a lot. I have… wait wasn’t i holding something in my hand? Why is it on the floor? (cue husband: why did you just drop that on the floor?)
    I often have difficulty speaking, thinking of words or remembering what something is called (this is not a particularly new problem for me, just worse), and stringing a sentence together; I forget what i was about to say 3 words in or lose the ability to give a shit and stop talking. I have nicknames for common objects cos i forget what they are actually called.. the dinger – telly remote. Or when in dire need ‘that’ or merely pointing enthusiastically at the offending article. Husband is now fluent in many languages including Eejit.

    Someone else here mentioned they don’t do alcohol, I don’t either and had started not doing alcohol before i got ill. However it occurs to me that my reasoning is flawed? I can’t walk in a straight line, can’t talk properly (not because i’m Scottish, thank you very much) and fall UP the stairs already and so I thought that alcohol has nothing to offer me.
    This was possibly ill conceived and badly researched on my part, MdDs makes me anxious and slightly depressed, but i’m a happy drunk…

    If you’re bad, it gets better, if you’re better it can get bad. Just remember people will support you, let them. And beware the evil of doorframes (and other inanimate objects).

    And last but not least: Try and smile, after all you have all the fun of alcohol and no hangover – stand proud and chin up (sometimes the dangers at head height).

  48. Liz Harris says:

    Wow, fellow sufferers.
    I developed this after a short cruise, it lasted for about 3 months, now every time I travel as a passenger and sometimes even if I go in lifts, I experience the fog, the dizziness, moving undulating floor sensation, and fatigue. It has put me off travelling and if I do travel, I now I have to plan time off from work when I get back. 🙁

  49. Marian Gebele says:

    i have a friend that has suffered with this for years. She is going through a particularly strong event right now. Any help would be appreciated! We both live in Ohio and would be very interested in the Ohio U study! Thank you, Marian

  50. Luke Morris says:

    Here is a piece of software I wrote for my mother in law that suffers from mdds. https://play.google.com/store/apps/details?id=com.gaugedevelopment.adjustableokn

  51. cathy paxton says:

    My mal De debasement,started 20 years ago only today have I learned what it is,i have had xrays brain scans it has got much much worse over the last month’s while some days I can’t function at all,i am 78 and frightened it may get even worse .

  52. Maryse Damours says:

    Since I went to Jamaica 5 months ago I’ve been feeling dizzy.. I’m better in a car until we stop :/ I’ve been seeing many doctors.. finally a Neurologist from Ottawa told me it’s probably mal de debarquement. . I’m 29 and a dog groomer and mother of a 2 year old.. I need help with this. . Need to work and take care if my house etc 🙁

  53. Helen says:

    I have this syndrome since going on a cruise. It’s really bad right now, the rocking, rolling, swaying, brain fog, light-headed and some nausea. Please advise!

  54. have had this for almost 9yrs. I was just told by a Dr at Toledo university medical center Dr Li that I have mdds. he has several patients with it. Like so many others there are days I cant fix my own meals and a lot of everyday chores. I got mine from a 14hr rough train ride. I pray everyday that they will find something to help us at least so we can return to somewhat normal life.

  55. Marlene Talbot says:

    So glad This came up ,as I know so few people with this type of balance issue .

  56. Marlene Talbot says:

    Thank you for putting this condition up ,as I know so few with this balance issue

  57. Heather says:

    I have been suffering from mdds for 8 years. It was migraine induced, not a cruise or car ride like most. They started me on a small dose of valium and it’s made all the difference in the world. I’d ask your neuro, it’s worth a shot. Just wanted to share my experiences cause until the valium I was a hopeless and spent nearly every day depressed

  58. andre chang says:

    Hi Deb! How do you cope daily with MdDS? It’s a struggle for me. I’ve seen several neurologists here in Manila but no one knows about MdDS. I’ve been able to match my symptoms with MdDS particularly when the dizziness goes away in a moving vehicle. And of course the bobbing sensation.

  59. Charlene says:

    Hello to all… my daughter came down with symptoms after sleeping on a boat for 3 nights, her brain in motion, swaying etc and when riding in a car it seem to subside. Recently I described this to a friend of mine who is, along with her husband boat people. She immediately told me that boats are notorious for mold spores.. moisture etc. She said she is dealing with a fungus. That did make sense. I continued to investigate. Many people have candida and mold/fungus spores aggravate it. Now my daughter would say that it is worse during her menstrual cycle. Well, prior to her cycle she would crave sugar… sugar is candida’s favorite food. I suggested she stay away from sugar for a week or two and see how she felt. She has not had the sensations. She did a test and ate a sugary dessert at noon and later that evening all the sensations returned. What I am suggesting to you all is that mold/fungus candida could be the problem. I strongly suggest you look into this. Many may have not been on a boat but they are not the only places that have mold. It could be your place of work..air conditioning systems are big on that as well. Hope this info my be of value. Best to you all.

  60. Patty Kosier says:

    In 1997, 19 years ago, I went on a cruise with rough ocean waves. Afterward, I felt the motion of swaying & bouncing all the time, except when sleeping or riding in a car. Many doctors tried different medications, therapy, tests, etc. over the years, but the Mal Debarquement has continued – sometimes like a rocking boat, or a galloping horse. I live with it, and am now 88 years old. Would like to be of help to others, if possible.

  61. sharon lindsley says:

    Just curious, what did the valium do?
    did it calm it – or just make it easier to cope?

  62. sharon lindsley says:

    Hello; I have had this condition for 16 mos. now mine came on ?? from stress and after a night of drinking beer.. at first I thought it was a strange hang over but it did not go away… just 2 weeks ago a physical therapist gave me a paper on mal de debarquement,,, I have all the symptoms..neither the ENT or the Neurologist could find anything, I had several tests, cat scans and MRI’s That did not show anything that they thought would contribute to my condition ..It’s made me stop drinking and smoking, already eat healthy and clean.. meditate a lot more. learning to deal with it… anybody find any tricks out there…

  63. Jeri says:

    On April 9 th 2016 I woke up went to the bathroom and suffered a severe vertigo attack ! To make a long story short two months later and 4 Dr’s later with many tests under my belt we have determined I have mdDS. The reason for my vertigo was a virus in my inner ear. One day I was fine and the next my life was turned upside down – I have been starting to feel better but for those of you that have had this for years I feel for you ! This is a very debilitating syndrome that wipes you out ! I’m not out of the woods yet and have good days and bad days but I’m hoping in short order it goes away completely .

  64. My Md Ds started Dec. of 2014. I have been to 1 ent and 1 neurologist who sent me to physical therapy. It was the therapist the recognized the Mal de Barq – the Drs. could not find a cause of what I have..anyway I have always thought I have an inner ear virus that they are not detecting.. Do you know what test was done to detect your inner ear virus?? It might be something that was not done for me..

  65. Raniella says:

    hello guys just want to share my experience, i’ve been experiencing this MdDS since last June 1, 2016 when we took a ferry going to Coron with 6hours travel, since then i started feeling the symptoms of MdDS, and it worsen after we travel with ferry 15hours to Manila, I have red that exercising will lessen the feeling, so i started doing my stretching and yoga habits, and it really helps, hope after a week of exercising it will be gone, i hope it will helps some of you guys, take care and God bless us all

  66. Jordanne says:

    Omg this started for me a week after I gave birth to my son..back at the end of May. I have spent many days in despair and weeping..actually praying to die for fear of having a sinister deadly disease. I am still waiting to see a neurologist. After a couple ER visits I had a CT scan and that looked fine. I noticed it at first when I was in the shower..that was a time when it was especially bad. Also standing on an unattached deck that felt bouncy. Now I spend everyday dreading walking around as I always feel like every few steps I move up then move down. It seems even when I’m sitting down esp with my head bent forward and I’m doing something with my hands I start to feel like I’m bouncing..almost like moving my arms triggers it. I am so sad to think this may never end. God help us all. This is especially hard with a newborn and a 4yr old. I am desperate to have someone to talk to regularly for support. Please anyone who understands email me at ezhryn8675@gmail.com.

  67. Jordanne says:

    My symptoms started about the she time as urs. I didn’t go on any trip.. Just gave birth..a horrendous 30hr labor experience. Please email me at ezhryn8675 @gmail.com. I’d like to have someone to relate to on this.

  68. Spring Autumn says:

    I also have suspected symptoms of MdDS. Unfortunately, neurologists and neuro-otologists here in the Philippines are not aware at it, probably due to the rarity of the disease and possibly not taught in med schools. If you found a neurologist who was able to diagnose you, please tell.

  69. Suzanne Doyle says:

    Hi Lisa…. Yes this study and treatment of MdDS at Mount Sinai just helped my daughter who was also diagnosed after dealing with it for 2 years. She spent a week with 2 doctors there that really helped her. She is pretty much symptom free but has had the odd bout of nausea and some rocking sensation which seems to be on a scale of 1-10… about a 1 or even a 0! She would definitely recommend this treatment to anyone who suffers from the disorder. I’m so sorry that you and so many others are having to deal with this…it’s such a rare and unknown disorder and very difficult to diagnose and live with daily. I literally watched my daughter go from this bright, confident beautiful young girl turn into someone who wanted to hide from the world. She hasn’t worked for two years because if this and so that’s what she’s trying to work on now…its been a real struggle so I completely understand how debilitating this invisible disorder is!! If you would like more information on the treatment, I’m sure my daughter would be happy to share it with you, but you should definitely consider it. All the best, Suzanne Doyle

  70. Ralph says:

    Hi any updates? I had my vertigo last june 20 at 3am while lying then looked at my left which started the spinning. Stood up immediately to compose myself. I was still able to work but felt dizzy and blurring vision. I had ENT checked me on july 12 and found a small hair strand inside my ear. Hadnt had issues with rocking or falling feeling until one night i felt that im falling in my bed. Then i just cant recall exactly when i felt im stepping on mud. It ls hard to walk or even stand. Right now still not feeling better. Its just seem that im also comfortable on cars and while walking but feels dizzy when im just standing.

  71. Ralph says:

    Last thing i did that could have triggered the vertigo was to sniff hard as i had clogged nose. Other than that, i really dont know. Had blood test. All came back okay. No MRI or hearing test yet.

  72. Patty Kosier says:

    I am searching for an Neurologist in the Houston, Texas area, who knows about Mal Debarquement and can help me. I have had it for 19 years. It gets stronger when I am weak in health. Blessings, Patty Kosier

  73. Lori says:

    Sorry I meant Mount Sinai in New York, NY

  74. Hi Suzanne Doyle,
    Yes, I would like any information you have on the treatment. I’ve been struggling for two years now. Please feel free to contact me at peter.samperos@gmail.coom

  75. Hi Patty, I too feel better when driving my car. What medications if any have you had success with? Thank you, Peter (peter.samperos@gmail.com)

  76. LoRee Russell says:

    Hey everyone 🙂,
    I have been diagnosed with Mdds for the last 5 years but I know I have had it since I was in my teens. So for about 35 yrs. the one medication that helps me so I can travel or if I have a REALLY bad attack are the Scopolamine transform patches. You can wear on behind your ear for up to 3 days.
    Hope this helps, LoRee
    God Bless

  77. Kathy Tepper says:

    Have had what I thought was vertigo for 8 1/2 months. Just got diagnosed today with MdDS at the Alabama Hearing and Balance center. My ENT recommended this center after all my MRI’s and other tests were inconclusive. The Dr. today nailed it within 30 minutes of talking to me. I am scheduled to start therapy next week, hoping it will be successful. I live 3 hours away, but it will be worth the drive 3 times a week if this succeeds.

  78. Would like to know how this goes. I’ve had it for over 2 years. I was diagnosed by a physical therapist. I’m looking into an Otolaryngologist for a proper diagnosis..

  79. wendy says:

    I was diagnosed with it over 2 years ago. I was not on a plane,ship or boat. I woke up one day and I was rocking. As time went on I got sicker my ear would buzz loud I would get headaches 5 to 6 times a day and the rocking was out of control. I enjoy the days I feel normal , it’s not often. People can’t sway beside me ,little children can’t walk back and forth in front of me. I take 200 MG of zoloft a day and .5 of klonopin a day. Some days are bad a some are better but they are always rocking. I have learned to live with it. But it’s not easy.

  80. Kathy Tepper says:

    I highly recommend the therapy. I was approximately 30% improved after the first day. I am fortunate in the fact that I have never been prone to vomiting, as most people who are do become sick during the therapy. My therapy started with neck exercises, and progressed to sitting in a chair while looking at a wall with markings making a X, approx. 48 in square. I was to look at the upper left mark, down to the lower right mark, and back to the center mark without moving my head. Then look at the upper right mark, down to the lower left mark, then back to center. This was to continue for 1 minute, then rest 30 seconds, then repeat for about 10 sets. Then we got up to walk while I turned my head left and right, while keeping my eyes fixed on an object in the distance. The therapist had a large belt around my waist to keep me from falling. Then we walked with my head moving up and down with my eyes fixed on the distant object. Then back to eye chart, but moving my head with my eyes moving with it looking at the marks. When I got home that afternoon, I felt the closest to normal I have felt in 9 months. Day 2 involved same walking, except moving my eyes with my head left and right, and the next exercise moving head up and down with eyes moving. Then treadmill for 10 minutes. I am so grateful that something is helping.

  81. Sue says:

    A relative has recently been diagnosed after 18 months. They don’t feel able to drive. Is this common?

  82. For me, the actual movement of the car is my only relief – but at stop signs/lights it can be disconcerting . It took me a bit to get use to it..

  83. So how are you doing now? I did try something similar awhile back, but it really shook me up – maybe I need the therapist to work with me more – I was doing exercises alone at home..

  84. Claudia Spann says:

    Eight years ago, I was diagnosed with Mdds. Dealing with this is no fun. I’m coping, however when family and friends seen to be indifferent or dismissive it really hurts.

  85. Lori says:

    Does anyone know how I can get the programs:
    – Medical Mysteries with John 
Quinones; and
    – The Woman Who
 Could Not Stop Rocking” about another person with MdDS.

  86. Lori says:

    I get relief from being in a car, boat or train. Probably plane too if I flew.

    She could have Meniere’s disease. Some of the symptoms are similar to MdDS, but they are not able to drive.

  87. I understand there is part of the plane which is best for passengers with mal de debarquement to sit. Does anyone know where this is (i.e. front, back or middle!)

  88. Christine St Jean says:

    I have had this syndrome for the past 10 years. In 2007 I did go on a cruise but this did not happen to me until about 5 months after. Driving or riding in a car does alleviate the rocking sensation. At times it’s like being on a lake in a small boat and other times it like being on a very large rough lake in a small boat. I feel like I’m being pushed up on a large roller and then I’m being sucked down as the roller goes away. My concentration span is so short it’s embarrassing. I have been treated and tested in practically every test available . My primary physician said she has never seen this before and my neurologist said he has seen about three patients with this over his career. If anyone out there gets any relief please post it.

  89. Sandra says:

    I was diagnosed after a cruise. (it took about a month after my symptoms started to by diagnosed) I didn’t feel any symptoms until a few days after the cruise and then it started. The constant motion. Night time for me was the hardest when I was tired from the day or anytime I was stressed. I would actually have to use the wall to steady myself when walking down the hall. Very unbalanced, visually I walked like I was drunk. At first, I had no idea what was happening and it was very scary for me! This lasted for 6 straight months. I only had relief when I drove my car. I notice it comes and goes for me. I just got back from a trip and I can’t stop rocking. The only time I was on a boat was an 1 1/2 hour tour around some islands. I’m at the point now that at least I know what it is…and try to deal with it the best I can. I have been hitting the “high waves” as I put it for about a week now. This is something I never imagined and trying to stay positive everyday!

  90. Jepamae Aturdido says:

    Hi! I am from the Philippines.. I have all the signs and symptoms of mdds but I was not diagnosed because physicians here in our country doesn’t even know about mdds so thats the worst part of it..its been 2 yrs and this is my day to day process upon waking up and getting off bed the dizziness is there already until I go to sleep, the feeling gives me anxiety and panic attack and I hate it!I’ve stop working and to make it short my life has totally change from being active person to this boring panicky person.. I don’t know where to get help😭😧

  91. mohamed says:

    I’m 27 years old .. I had trips by car and short trips by boat ( cruise ) and that was 3 or 4 months ago … now since one month I got all theses symptoms of MdDS .. and the only way that it goes when I drive a car or be as a passenger .. and when I’m on escalator . What should I do ?

  92. Robyn says:

    There is a treatment available for MdDS at Mt Sinai in New York. I had MdDS for 6 months following a cruise and the local Drs here at Stanford thought I had vestibular migraines. They were telling me that this was my new “normal” I was fortunate as I found this treatment on line and within a few weeks they had an opening to see me. I also shared the info with my physical therapist at Stanford who was shocked at my recovery and I no longer had to see her.

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