'Land Sickness': Mal de Debarquement (MdDS, disembarkment syndrome)
So, you survived sea sickness, maybe even got your sea legs, and now that you are back on dry land all your troubles are over. Or maybe not...?
An interesting comment was sent by Patty M. on August 10 2014: Researchers at the Icahn School of Medicine, Mount Sinai, have developed a new successful treatment. For more information see here and here.
Please read this comment submitted by TStone on February 21, 2015 on how to possibly treat MdDS yourself. Any feedback on how it worked for you welcome!
See also: An interview with Jane Houghton, MdDS sufferer since 2001 and founder of UK support group mdds.org.uk. Update:here is an article published about Jane in December 2020 in the UK newspaper The Guardian.
Whereas many people will briefly experience reverse sea sickness (or drunken sailor syndrome) when they disembark, for a small minority these symptoms can be severe and prolonged. This is known as mal de debarquement syndrome (MdDS, disembarkment syndrome).
MdDS is relatively rare, but is extremely distressing and debilitating for those who suffer from it. It occurs because the brain, having adjusted to the movement of the ship as normal, now finds the sensations of being on firm land unfamiliar and abnormal. Everything feels too stable, leading to dizziness and uncontrollable lurching feelings. Sufferers tell me that they feel like they are constantly walking on a trampoline, and they have to struggle to keep their balance. In some cases there are also nausea and a continuous rocking sensation. The only way to get relief from these symptoms is to go back on a boat, or travel by car or bus.
Mal de Debarquement Syndrome often lasts several weeks, but can last months or even years. Medically MdDS is considered to be a 'self-limiting' - in other words temporary - condition, however the symptoms are likely to become more severe and longer lasting with each subsequent trip on a boat (or sometimes plane). A friend who suffered the symptoms of MdDS for around a week after a two-week cruise several years ago, recently had MdDS for well over a month after another similar cruise.
A video to encourage awareness and learn about what it's like to live with MdDS.
It is impossible to predict whether you will suffer from disembarkment syndrome after a cruise or voyage, although those who have little problem adjusting to the motion of the sea seem to be more susceptible. To try to prevent MdDS it is a good idea to start your sea sickness precautions a couple of days before you board, and then continue them for a few days after returning to land - for example if you are taking ginger, start to take it before you board and continue the same dose throughout your trip and for a few days after disembarking. The same can apply to any medications that you may be taking, although do speak to your doctor first.
If you do suffer MdDS symptoms then it is worth trying the remedies, treatments and medications used for sea sickness and other forms of motion sickness (see this overview of the options available). Many people, however, report that they don't do much to help. To make matters worse, many doctors know very little about MdDS.
There are a number of websites and support groups online:
I had what I believe was Disembarkment Syndrome... I was willing to try anything to get my life back after it made me fear that someone would think I was drunk while out feeding my horses, or that I'd seriously hurt myself, like the day I fell hard into the horse's metal gate and cracked a rib.
A friend told me to take Black Cohosh, Valerian Root and Gingko Biloba and within a week of taking them, I was normal. The stuff worked. I have 42 animals, a full time job and 92 acres to mow and I was scared to death to get on my Commercial mower for fear I'd fall off into a ravine.
Those three herbs were a Godsend and when I saw the Medical Mysteries show on TV I knew I had to tell someone what worked for me. It only took a few days, and once the MdDS was gone it was gone. I haven't had to take the herbs again since.
I'm sharing this so that others can at least try it and see if it helps. To my knowledge there are no side effects to any of these herbs and I just got well. I thank God for the gift of balance. It's funny what you can become grateful for.
K on October 27, 2012:
How long did you have the symptoms before you were cured?
How much of each of the Herbs did you take?
Lucy @ Motion-Sickness-Guru.com replies:
Hi K, I contacted Margo to ask similar questions and this is what she replied:
My Disembarkment Syndrome is back, only slightly, but I'm laying in bed and feeling the room start to spin while I'm not doing anything, just lying on my back in bed, and that's the first sign of it. If I tilt my head back it feels like when I was young and drank too much and the room spins. It's not yet as bad as it was before, but I'm not going to wait that long and am starting with the remedy now.
I take them just each just like the bottle recommends: Valerian root, three capsules 30 minutes before bedtime. My thoughts about this is, Valerian Root helps you sleep and if you achieve REM sleep your body heals in REM and the Valerian helps you achieve REM sleep.
Ginkgo Biloba 120mg once a day. Ginkgo Biloba increases blood flow, that's why it helps people whose brains are aging. Anytime more oxygenated blood cells can feed and regenerate cells it heals them. If REM sleep is achieved, then increased blood flow, it increases healing while you're basically shut down, like turning off a cell phone and putting it on a battery charger.
Black Cohosh one pill three times a day. I'm not sure what it does, but it got me normal with no side effects.
I did the research on everything before taking it and found little info on the Black Cohosh, so and was cautious with it to assure I wouldn't have an allergic reaction.
I heartily recommend anyone considering any of these herbs try each, one at a time and make themselves aware that they don't have an allergic reaction to any of them and if they do they'll know which one they are reacting to. I slept well, I healed and now when I can feel it coming on, I can just take it again for about a week. I just quit taking it when my symptoms subsided. Not sure why it's back, but I feel confident that it will solve the issue again. I don't want to be falling over in the barn lot anymore anyway.
I hope this helps. Margo
Margo Reid on November 2, 2012:
Hello again...
I think I have determined what, at least my, Disembarkment Syndrome is being caused by, by concentrating on when it actually appears for me. I have 102 acres and 60 of them must be mowed to keep grass for my horses. I pass the time on my mower by downloading books on tape and use earbuds to listen to them for sometimes 6 hours at a time on my IPod. When I insert the earbuds, they put pressure on the small bones inside my ears. Our inner ear is where we derive balance control. Anyone who's had an inner ear infection has stumbled around when they've had one, due to swelling, causing misalignment. I think, at least some of us, are experiencing our issues by pushing the earbuds in, which pressures the tiny bones out of their proper alignment, thereby causing this fine balance within the ear to be pushed out of level. I suggest simply, ask anyone who currently uses earbuds to stop their use completely for a month and see if their body heals and rights itself and the small bones inside the ear don't shift back to level again. I think my personal remedy sped up my ear's recovery, as my balance is almost normal again. I'd encourage those, with this condition, who use earbuds, to stop completely and replace them with common headphones again, to keep from applying undo pressure onto these delicate bones and causing their misalignment and the malfunction of our inner ear's delicate function.
I'd love to know how many ailing people use earbuds. It may be like anything else, some people have a susceptibility with just one hour's use or it could take 6 hours a day for 6 days for another's inner ears to malfunction. Omitting earbuds for a month might give us all a clue if these are too dangerous to be used, and it could cause the manufacturer to modify them, to make them more suited to the delicacy of these bones within our inner ear.
I hope it's as simple as that. Should this be the culprit, I'd love for someone to get the word out, as there are lots of folks using earbuds and if this is the problem, some may have already done too much damage and will be unable to recover and heal their inner ear bones back to their normal position. That would be sad, since this illness effects you, even while you are asleep.
Have a blessed weekend...
Margo
DaveK on November 25, 2012:
My story/cure: Went on a 10 day cruise. Came back and went to work. Knew something was not right. Told my wife that I was concerned because I didn't feel "right" or "all there" in the present due to these sensations of rocking. Thought maybe it was a side-effect of a stroke or something. She suggested we go right away to our doctor. On the way there, I told her no need as the sensation stopped (which is common when driving, I find out later). Ended up going to the doctor later. I was PROPERLY
diagnosed. He then sent me to a neurologist and also to an ear nose and throat (ENT) specialist. The neurologist agreed with my doctor while the ENT doctor said it was tennitus. I asked the ENT dr why then, did it stop when I was driving in a car? He had no answer, was NOT familiar with the term of "disembarque syndrome" and, apparently, unwilling to learn about it so he dropped the ball at that stage.
So, my family dr. properly diagnosed me and there it sat. I had difficulty "really" concentrating on anything because of the nagging sensation and it seemed to get worse when I was tired.
SO, for 2+ years I walked around in this state. Couldn't trust myself on any type of ladder either. Now, I am going to tell you what age I was when all this happened as it is relevant later. I was about 47 yrs old. I also need to disclose some other SEEMINGLY irrelevant data. I've been to TWO concerts in my life. One, when I was about 17, at which point I decided I
didn't LIKE going to concerts and then, the other I attended when I was 49yrs old. WHY would a 49 yr old, who doesn't like concerts, BE at a rock concert at the age of 49 you ask? Well, when he has a 16yr old daughter who he won't let go to a concert unsupervised, that's why.
The group, Shinedown (not relevant other than knowing it wasn't a classsic symphony type of cure). The seating, wasn't "seating". It was standing (MAY have been relevant in making my brain continue to have to balance myself). I believe the standing is affectionately referred to as a "mosh pit". Hope you don't bruise easily. Anyway, 2 hours later, we walked out of this concert and my ears were RINGING LOUDLY. So loudly, that when my daughter spoke to me it was like how, in the movies, what a soldier
would hear from his partner right after a bomb would go off and all he would hear is the SOUND of a voice but not the actual words they were saying.
The next morning, I woke up and the rocking sensation was simply GONE along with the loud ringing I went to bed with. The realization of WHY things felt different didn't hit me until I had been up for a while.
I put two and two together and realized what had happened.
I immediately went to all the websites I had uncovered when looking for a cure to get the word out and posted my cure experience. I wanted to help other people but not a single response from anyone or site administrators. Not even to ask any follow up questions. So much for ".org" sites. Maybe there's more money in being part of the problem than in the cure. Over the
years, I came across multiple "band aid" projects like "vibration pads", for example. All of them seemed to deal with the SYMPTOMS of MdDS but NOT the cause.
What I experienced was a "sensory reset" - plain and simple, and it addressed the CAUSE via sensory overload and recalibration. I can't be cured twice, so I'm left to wonder if something as simple as loud headsets for 2 hours (same as concert time) could do the same thing. But my conclusion is that it needs to be something loud and for a significant duration of time that the brain tries to again, learn to compensate for it JUST as it compensated to create the problem in the first place.
Colleen on December 14, 2012:
DaveK, I am VERY interested in your cure, as I believe I am still suffering the effects of car sickness experienced yesterday. My head is swimming and my body tends to sway whether I'm sitting or standing... the nausea is unbearable at times. I will be trying this sensory overload of sorts this evening because something has to give! I can't stand 2 days, let alone 2 years!
andres on January 19th 2013:
davek... interesting story. Not sure people in here appreciate what you are saying. I got MdDS 20 years ago, and it lasted 5 years... then one day disappeared. The problem is I didn't know it was MdDS, and no doctor ever got the diagnosis OK.
So, I went in a cruise on January 6... and now I have it back again. I'm so worried, especially because the sites say that the subsequent times last longer. So I assure you I will try your formula, because I know what it's like to be sick for years. Willing to do anything to cure it.
DaveK on January 22, 2013:
Colleen... Andres... Any luck?
G-m Nan on February 21, 2013:
I am so thankful I finally found some site that is up to date on MDDS. It is so interesting to hear your stories. Two years ago I was finally told I had mdds after all my life, or most of it, thinking I was a bit crazy.
I am 74 and when I was in high school I belonged to Mariner Scouts and we would go out on a boat and when I would get back on land a few hours later, walking on land I was so unsteady. It never seemed to go away. At times it was worse - like I was rocking, and waves would be worse at times.
I keep going because I thought sometime odd was going on. Finally I told my doctor. I had lots of hearing tests, rotating tests, MRI, just about everthing you could think of. All were normal. Finally she sent me to a neurolgist and he knew what was wrong, but nothing much can be done about it, live with it!!
Riding in a car does not help me, it is worse. I have bad days and worse days. It is nice to hear I am not alone. My mdds has lasted for years and years. Just was at my doctor and she knows very little about it, but says I will have it the rest of my life.
I just wanted to know if anyone had migrane headaches? I also had them since I was 6 yrs old.
I hope some doctor would look into a cure. Please let me know if anyone hears any news on a cure.
Blessings to each one of you. Nan
Karen on March 8, 2013:
Have been dealing with this sensation the past 11 months. I woke up with racing heartbeat and extreme dizziness. Cardiologist says heart is fine but something impinging on vasal vagal nerve in neck. I found that I lost the curve in my neck and problem with c1 and c2. Neurologist confirms issue with neck but not serious enough to operate, is advising physical therapy with neck traction to alleviate symptoms. I feel like I am walking in a moonwalk as a 45 yr old is negatively affecting the quality of life!
Stephanie K on April 2, 2013:
I got Disembarkment Syndrome from a cruise I went on in Dec 2005 (I was 28 years old at the time). Clonazepam was the only thing that would mask the symptoms. It isn't a cure and it is very addictive. I went on another cruise in 2008 thinking it would reverse the effects (big mistake). That does not work. I can't take clonazepam forever because I am ready to start
a family. I got pregnant in Jan 2013 and that has been the only natural rememdy. My "cruise vertigo" went away entirely... then I miscarried in March 2013 and it came back. I sit here at work feeling it right now. I am thinking it is hormonal especially knowing most people who suffer from it are women. I have suffered from this for over 7 years now!
Stephanie K on April 2, 2013:
BTW I have tried every type of remedy out there with no help. I have tried herbal things, repositioning crystals in my ears, balance therapy, another cruise, exercise... the only thing that has helped are driving and being pregnant. Sometimes if I wake up on the weekend and am in constant motion all day I won't feel it until I stop. Sitting behind a desk a work all day makes me feel it all day and it gets worse as the day goes on.
Eileen on June 9, 2013:
I have had the condition for ten years,not permanently but after ferry trips and gradually getting worse e.g. lasting 2 months. Recently returned from Kenya - I had given up on boat travel - but now I have it again. Definitely worse when relaxed or tired. The rock concert treatment sounds a good idea as long as I don't end up with permanent ringing in my ears.
KiwiKaz on June 14, 2013:
Went on a cruise in 2000, very rough almost everyone had seasickness, I didn't. It hit me when I got on dry land. 2008 operation to neck, damaged c1/2, c2/3, c4/5, c5/6... unsure if all is connected. After spending 5 years recovering I am heading off on another cruise this week. I am now a little scared. I have also have experienced bad ear/hearing after flying and concerts. All seems connected...
Sabrina on August 13, 2013:
I'm new to MdDS. Just two weeks ago I went on a summer family cruise. I was fine on the boat but as soon as I walked on land it started. The sensation of the gravity pull is so strong. I am going to try the herbs. Thank you for speaking out on this and sharing.
Eileen on August 14, 2013:
I'm a different Eileen (to the one who commented above). I went on an 8 day cruise in 2002 and was fine... until I disembarked! The swaying... almost a gravitational pull like the tides... and heavy body sensation... started immediately and lasted for many months. After an MRI etc., the doctor diagnosed me with reverse seasickness and showed me some exercises (which didn't really help). It went away eventually and I told myself "NEVER AGAIN FOR A CRUISE!"
Well, eleven years is a long time and I forgot about it. I just returned from my second cruise in my lifetime and IT'S BACK!!! Aye Yai Yai! I'm so mad at myself. My brain is floating back and forth in my head, I feel drawn to the ground, am fatigued, can't get much done... etc. etc. etc.
Survivingandwondering on September 4, 2013:
Hello everyone,
How in the world do you absolutely know for sure if you have this - IF you have NOT been on any travel, plane, boat-- ?
MikeB on January 5, 2014:
As I read DaveK's description of his cure, my first reaction was to attribute the cure to the mosh pit, not the sound level. I suffered the symptoms of MdDS after a cruise last year, but my symptoms cleared up after two to three days without any special intervention (other than a few naps during the workday). I just returned from a 7-day cruise and stumbled on this site while looking for MdDS prevention tips.
Anyway, back to the mosh pit theory: though I am 48 years old, I still like the type of music that inspires mosh pits at concerts and have been in mosh pits off and on for over 25 years. If DaveK's cure was related to the concert (and not just a coincidence), then I think the most likely explanation is the type of physical activity that occurs in a mosh pit. It sounds like DaveK was not actually slam dancing. It sounds more like he was standing in a crowd where mosh pits were probably spontaneously forming and dissolving. The effect on a passive participant would be the need to balance against people pushing, sometime aggressively, from different directions and quite often unpredictably. I can image that action for two hours could prompt the balance circuitry in the brain to "reset" as DaveK described it. The loud music may have helped, but I doubt loud music alone would have any effect.
Dee on January 29, 2014:
Hello everyone,
I have had all of the symptoms of Disembarkment Syndrome for over a year now including not being able to drive and or ride a bike without experiencing the symptoms very bad. I get my worse symptoms when I walk and am spacey and kind of floating when I am still, sitting or laying down. I have had all of the usual tests that have all come back normal. I did not take a cruise or plane flight when all of this came on!!?? Is it possible to have all the symptoms of this syndrome without taking a cruise or flight????
Beth on February 26, 2014:
Dee, yes you can get MdDS without being on a cruise! I am spontaneous, 3 years now without any relief. May have to try the concert thing and see if it works. Would love to hear how DaveK is doing now.
Elaine Young on April 25, 2014:
I endured the symptoms of this horrible sickness for the first time in 2013 by going on a really turbulent flight (the landing was aborted due to inclement weather - really scary!). The symptoms passed after about 6 or 7 weeks. I then got the same sickness for the 2nd time by going on a mini cruise to Holland in January 2014. It was a really rough crossing to Holland and back to the UK.
I still had the symptoms of walking on a sponge plus an up-and-down feeling while sitting or lying down in March. In March I went on a flight to Miami from the UK then a 11 night cruise (rough waters) plus a turbulent 8 hour flight back home. I thought I would be really suffering when I got back, but all the symptoms have completely disappeared. So now I am wondering if going on a turbulent flight or cruise again actually resets the brain. No symptoms at all now. It's really strange. Thought I would share it with you.
Pat on May 6, 2014:
Hi All,
I've suffered with this for many many years and hate it. The awful tiredness, falling, banging myself, and the moving of everything around.
Dee, the difference is that with vertigo etc. the room spins, and with MdDS it feels like the floor is coming up to meet you, e.g. like trying to walk on a turbulent airplane.
I've had many episodes and this illness is really miserable. One thing that has helped me is to use eardrops/oil to clean out my ears the week before a long journey. I actually went on a train journey last week and didn't have to have any time off work. I don't know if my ears were filled with wax or it's in my mind but it's really helped loads.
Beth on July 30, 2014:
Hi, I was diagnosed about 3 years ago after my second bout of symptoms after a boat ride. The first time I had symptoms it lasted about a month and my Dr kept telling me I must have had an inner ear infection - jeez the amount of antibiotics she put me on! We assumed, when the symptoms went away, that her diagnosis was right. Then a year later after another boat ride the symptoms came back, much worse!
My doctor referred me to an ENT this time and he diagnosed me with MdDS and basically said there was nothing he could do. I was a mess. Tired, depressed, nauseous and no support from anyone because it's "all in your head". The symptoms finally went away and I stayed away from boats!
A year ago I went on a boat but loaded up on Dramamine first and the symptoms didn't come back. BUT then a few weeks ago I slept overnight on a friend's boat (I didn't THINK that in dock would be as bad) and now the symptoms are back full force. No one really understands or has any sympathy and I can see myself falling apart again. I was thinking maybe this group had some advice?
Barbara on July 31, 2014:
I returned from an 8 day cruise ten days ago and have had a rocking feeling almost constantly since returning. I am posting this today because I want to add my name to the list of people who have this condition. I have another cruise scheduled next weekend with my husband to celebrate our anniversary.
If this does not go away then I will cancel it. I have never had motion sickness of any kind and have been around the water all of my life. I am hoping this is temporary. Good luck to everyone. I will repost if and when this goes away.
First was diagnosed MdDS after sleeping in a houseboat during very stormy weather about 5 years ago. Side effects lasted 3 months. Then off to the Bahamas two years ago for a rocky boat ride... side effects lasted 6 weeks. Have had great sucess this entire summer while boating and flying by taking behind the counter sudafed if I have any sinus congestion, then about 1/2 way through boating or plane ride take 3 Advil and 1/4 full-strength Dramamine. No lingering issues at all. Feels great to participate in activities my family enjoys.
Cindy Jean on September 13, 2014:
I had mal de debarquement symptoms for almost 2 weeks following a Caribbean cruise in March 2014. I had pre-planned an Alaskan cruise with my family of 4 in August 2014 and was very worried that I would get the rocking and dizziness again and that it might last a longer time. So I read everything I could to find out how to prevent it as I really did not want to cancel the trip. I even asked my doctor for the tranquilizer. I didn't really want to take them but really worried about the rocking. She refused to prescribe them anyway as she had never heard of this preventative treatment. She suggested trying magnets.
To prevent: I wore a magnetic bracelet on each wrist, I took a ginger capsule each day starting 2 weeks before the cruise and until 3 days after, exercised vigorously for 40 minutes or so in the gym almost every day of the cruise and if I started feeling headaches, like my head was trying to adapt to the ship, I moved around or shook/tapped my legs. I did my best to try not to adapt to the ship's motion and looked at the horizon when we were near the coast, as much as I could.
The result? I was fine. On the second day post cruise I felt a mild, pleasant rocking for a few hours but nothing like the 2 weeks of Hell I went through last time. I hope my suggestions work for others.
Harriet on September 23, 2014:
My sister has had this feeling now for nearly 8 weeks and seems to worsen with stairs and tight corridors, she has moved house now and is restricted to hang out in her lounge room or be in bed. I am worried for her and her GP has referred her to a neurologist, which she is waiting for - the appointment is in a few weeks. I fear she is getting very depressed and feels helpless as she was a very active working woman.
Has anyone here tried the Epley Manoeuvre to help??
Is this what the Mount Sinai hospital treatment is? I read the article but don't understand what / how to perform the Mt Sinai treatment...
Equijen on September 27, 2014:
Was just diagnosed today. Went on a 7 day Caribbean cruise in late July that required a cross-country plane ride there and back. Getting off the plane ride home I had a 'ringing of the ears' that lasted for four weeks, sometimes loud enough that I couldn't hear people on the phone. After the first two weeks, went to my GP and he thought it was my sinus and prescribed an antihistamine which didn't work. Then the vertigo started. It was mostly when I heard loud or sharp noises, like a dog barking. I would be walking down the hall just fine, the dog would bark and I would be 'kissing the wall'. I went to Urgent Care and the doctor tried all kinds of silly physical tests but everything was normal. Scratching her head, she prescribed Meclizine, told me not to drive, and said to see my GP asap.
Meclizine did nothing, and my GP gave me a referral to an ENT. The morning of my ENT appointment, now four weeks from our return from the cruise, I had a severe vertigo attack. I couldn't move without the whole room spinning and tipping. I had nausea and cold sweats. Somehow I made it to the bed. It got worse quickly, I couldn't even move my eyes without the symptoms raging. I felt like I had been poisoned. My husband called the paramedics and after they asked a lot of questions and took a lot of readings they assisted me in an agonizing move from bed to wheelchair to gurney to truck. Then an equally agonizing ride to the emergency room. It wasn't the bumps that bothered me so much as the swaying turns. At the hospital, they gave me meclizine and valium, and within an hour or so I was better. Went home and woke up the next morning and it was all gone. It hasn't returned since. Finally made it to the ENT and he told me what it was.
Deppy on October 6, 2014:
I have the same thing going on with me right now... I recently went to Catalina Island on a boat for 2 nights. It's a 1 hour boat trip from Long Beach CA. I was pretty much ok when I first got there but I could still feel that unpleasant feeling. The second day I was there, I went on a 45 minute submarine ride and I think my situation worsened right after that.
Before I got on the boat to come back the following day, I could still feel that rocking motion while standing. It's been 3 days that I've been back and I still feel like I'm on that boat. I'm going to see a doctor today because I think I have some sort of ear infection and from what I understand, your balance comes from your inner ear. My ears get itchy at times and my earwax has this really foul smell. When I sit, my body keeps swaying from side to side. I can't imagine myself living like this for years and hope it goes away soon. I have been on a few 3-4 night cruises in my life and remember having the same problem that lasted 4-7 days.
Carla M. on October 27, 2014:
Is it possible to get MdDS from amusement park rides? I went to Universal Studios at the end of July. I had a dizzy episode at the park one day and a couple short ones thereafter, now I am on week 11 of constantly feeling like I am on a cruise ship for the 1st day. From day 1 when it hit me hard riding in a car has helped, walking helps some, but I still feel the brain fog feeling when I walk. Riding in a car makes me feel almost normal though.
I find my symptoms are much worse when I am at work. I work on a computer with fluorescent lighting. Any insight on if this could be what I have is appreciated! I just want answers! According to the ENT he does not think it is inner ear related and my MRI was perfect. Thanks!
Joyce on October 29, 2014:
I came back from my third cruise 2 weeks ago. I was fine on the ship but have been swaying and bobbing ever since I got off. This cruise was a test for me to see if I could do it without incident. 6 years ago when I disembarked everything was spinning so bad, car sick, nausea, anxiety; couldn't walk without holding onto the walls. I was on short term disability for 4 months. My symptoms subsided after 3 1/2 months but my doctor wanted to make sure that I was ok before going back to work (accountant) as my boss had stressed me out big time when I tried to work at the onset of my symptoms but was not able to.
So here I am 6 years later after a 5 night cruise, swaying... but functioning... sitting here at my desk swaying... but this isn't nearly as bad so I am hoping and praying that it will subside. From what I read, the last time I was at a level 10... this time I am 3-4.
Laura on November 16, 2014:
Since August I have had nearly daily headaches. Then, about 2 months ago I experienced what the doc described as classic vertigo. It was a short lived episode & thankfully I didn't experience any of the nausea. I was camping / hiking at the time and as result was very active for the next couple of days. Ever since, on a daily basis, I feel the motion, I feel the ground swells (like a boat ride), there is a constant back & forth movement in my body, my head in particular. Sometimes I feel a sudden jolt in the head. My symptoms are not as severe as many of the posters here as I feel able to function most of the time. Definitely good days & bad days. I had an MRI just to be sure and results will be given next week. I plan to ask my neurologist about this. Could the vertigo be the "motion" event? I haven't been on a cruise in years.
Aurora on November 16, 2014:
Hello, I am Aurora, 36 years old, French, and i have MDDS i think since 30 sept 14, i did a 2 days trip on a small boat and since i can not stop rocking, except when i drive and when i sleep. I went to see ENT, did all tests scanner, MRI... all is normal. I am doing at the moment vestibular therapy, but all doctors don't know mal de debarquement (even if it is a French name). I found it myself on internet. I don't take any medicine but it is very difficult to cope with.
Hannah on December 24, 2014:
Hello everyone, My name is Hannah, I'm 21 years old and while I have not been officially diagnosed with mdds, everything I have read describes my situation to a T. I first noticed an off-balance feeling 2, almost 3 years ago. I originally thought it was something with ear wax build up.
It was during the spring time of 2013 that I was diagnosed with depression/anxiety and was put on Zoloft. While it helped tremendously, eventually the rocking came back. It wasn't affecting me enough to seek help and so I went on with my life. I transferred schools in September 2014, and the feeling didn't bother me until I came back from break. I read earlier about the ginkgo biloba, valerian root, and black cohosh. I'm wondering if anyone else has tried it and if it actually has worked?
Tom Conroy on January 2, 2015:
My wife has MDDS. We have heard about a cure at Mount Sinai Hospital. We're going to see them. We will keep you informed of our progress.
Emily on January 19, 2015:
I have never been on a cruise or plane but mine started all of a sudden 5 years ago. I constantly feel like I'm moving. Doctors have just told me its anxiety. I didn't have anxiety until after this started. I'm so miserable every day.
Lucia on January 19, 2015:
Hi, my husband developed MDDS after a cruise several years ago. He had success with Gabapentin and Citalopram. However, after a long haul flight, the MDDS returned with a vengeance. Colds and other viruses also make the condition return. He is hoping to try the treatment at Mount Sinai Hospital and would love to hear from anyone who is also going to attend the clinic.
Lisa on January 28, 2015:
Hi, who do you contact at Mt Sinai for treatment? I would like to set up an appointment asap. Mine got worse from roller coasters, now it won't go away! :( had for years but always went away eventually now sick as dog all the time. It's promising to see a possible cure, let's think positive.
Lori on January 31, 2015:
I returned Sunday from a three day Mexican cruise. On board, I took Bonine and sea bands and did not get sick. Upon my return to land, I have had extreme vertigo as well as doctor diagnosed Land Sea Sickness. I put my sea bands back on, trying a glass of ginger ale and hoping this goes away! This feeling is miserable and I feel sorry for all those suffering. I would be interested in the study too as I don't want this to last another moment. I was supposed to go on another cruise in 10 days, no Way!
Marsman on January 31, 2015:
We're from Holland and my wife has had the symptoms of MdDS for over six moths now, started after a two day car drive back from our holiday in France. We saw every docter (ENT, Neurologists, etc.) and none of them could give us a proper diagnosis. Finally, when searching the internet for information, we stumbled upon MdDS. Every piece of the puzzle fell into place. Especially the notion that it stops or is far less worse when she's on a bike or driving or walking at a steady pace. It's really hard to read it sometimes lasts for years and years. On the other hand, we're glad we can finally put a 'label' on this thing.
Now, of course, we're trying to find ways to cure her. In the States they're further than here, at least they're working on a treatment (Mt Sinai). I read something about Australia too. Of course, for us it might not be smart to get on a plane for ten hours or more ;-)
So all we can do is try self-medicating and find out how many people in The Netherlands have this. Because I'm sure the number is much bigger, as so many docters here have never heard of this and many people with the symptoms are just left to their own devices.
Good to read about other cases. We'll check this blog regularly in our search for a remedy.
Carter on February 4, 2015:
Hi, I have had the feeling of constant motion, bobbing, floating for about 2 1/2 years now. Has anyone else tried the ginkgo biloba, valerian root, and black cohosh to see if that cures theirs? I think I might give it a try.
Angie on February 8, 2015:
Just arrived back from my 7th cruise 5 days ago. After my last cruise I had MdDS for about a week after but just thought it was a flu or something. Now, having it again after this cruise, I realize it's no flu. Symptoms are exact. Start out feeling not too bad in the morning but worsens throughout the day and some days worse than others. Have spent two of these days literally in bed. I cannot imagine this not going away soon. I have not even been well enough yet to fully unpack. Can't work like this. I'm going to pray it gets better but would love to hear more about these possible cures.
TStone on February 21, 2015:
I was on a 7 day cruise with my family and came back on Feb. 7. After a day being on land I realized something was very wrong. I ended up at an ENT who diagnosed me with MdDS and gave me a sea patch to wear. It did nothing for me then he prescribed meclizine, which also did nothing. This has been a very terrifying experience. My symptoms were pretty severe and I travel and work at a computer for a living. I experienced a very dizzy feeling constantly, my vision was significantly impaired, I was extremely fatigued and had trouble concentrating. I went to my chiropractor who also does accupuncture. After my first session I did not feel any change in the symptoms but did feel calmer, which was definitely needed. At my 2nd session I took in the Mt. Sinai article on treatment and asked my Dr. to read it. He did and told me that he knew how to help me. So listen up because this has changed my life again. He had me download onto my phone an app called OKN Strips (have also seen it under OPK and other names) He then had me march in place while holding my hands out in front of me with my eyes closed. While I did NOT roll in any direction, I FELT like I was always being drawn to the right. Therefore, he had me turn on the stripes also moving the right. I held my phone out in front of me and watched the stripes move for 3 minutes to the right. I then would tilt my head 20 degrees to the right for a minute or so, then do a minute back to the center, then a minute to the left, then a minute back to the center. After repeating this every 2 hours I began to notice an improvement. At the end of the first full day my world had stopped tilting as much. I am now beginning my 3rd day and would say I am about 50% better in 2 days. Please try this and let me know how you do. I will continue on with this and am believing and praying for a complete recovery of this horrifying illness. Please note, the last two mornings I felt like I had regressed, however, by the time I did the exercises 2 times I had my improvements back.
I did a trial of the optokinetic head tilting with my PTs (I have had MdDS for almost 8 months). I seemed to turn left when I marched so they had the stripes move to the right (opposite). I tilted my head about 20 degrees toward one shoulder and then the other shoulder (with about 3-4 seconds for each "rock" from one side to the other). It's supposed to mimic the Mt Sinai treatment. I did it for 3 to 5 min and then stopped. We tried for 4 days in a row. I think it may have helped a little. You could try to replicate it using the OKN strips (I have tried at home). I think mine got like it was getting better until I got my period and then I got worse again. Anyways it might be worth a try. Seems harmless. I'm giving it another try next week and will report back.
Lesley on March 7, 2015:
I have had Mal de Debarquement now for almost 3 years without even a break. I am at my wit's end as it seems to be getting worse. When I rest at night in bed I am rocking and swaying and during the day it's a nightmare. Now due to see a Neurologist in London's Queens Square next week. I have seen 6 sets of ENT specialists and this is my second hospital to see a Neurologist. Will it ever go I ask myself? I now suffer from panic attacks. I was so fit and healthy 3 years ago and can't think what made this start as I didn't even go on a boat!
Marjan ten Wolde on March 9, 2015:
What I want to know - do you keep marching when you look to the stripes?
rockymama on March 11, 2015:
Nope. You sit while you watch the stripes. And be sure to not really look at the stripes. Just sort of watch the pattern moving. You should feel like you are moving too. Do it for 3 to 5 min about 3 to 4 times a day. I do it in the morning and I really think it helps. If you feel worse you may have the stripes going in the wrong direction. You can try the other direction to see if it helps. I believe the thought is that it corrects a mal adapted vestibular ocular reflex.
Rocking continues on March 12, 2015:
Hi, I was hoping someone could clearly describe the strips thing. It might be helpful to others and myself if just given some precise directions. Thanks so much!
Marjan ten Wolde on March 13, 2015:
Where can you find clear instructions? Because it is still not clear to me. PS - I am from Holland and have intermittently now for 4 years.
rockymama on March 18, 2015:
Put the app on in front of you.... maybe a foot away. You tilt your head from one side (ear toward shoulder) and then over slowly to the other side (in the middle your head would be straight up and down). Rolling from one side to the other should take about 3.5 seconds. The stripes on the app should be black and white and go the second to lowest speed. If you do the fudaka marching test on yourself, the stripes on the app should go the opposite direction of the way you turn doing the fudaka marching test. The idea is that we internally rotate one way so the idea is to correct the rotation by watching the stripes rotate the opposite way while rolling your head from one side to the other. Do it for 3 to 5 min then stop. Repeat about 3 or 4 times each day for 4 days. If you feel great improvement (greater than 50 percent) they say you can stop sooner.
FLGIRL on March 23, 2015:
I have had these same symptoms for almost 2 years now. I did not take a trip anywhere. However mine started with a battery operated nasal flush. I used this to clear out a stuffy nose. Once I used this my head started spinning and never stopped. I am extremely tired now and also have muscle aches specifically in head and neck. I had a spinal fusion at c5/6 and a replacement at C3. This did NOT help. Does anyone else have the muscle pains? I have gone to many ENTS, neurologists, GPs, you name it. All tests are normal. It is so upsetting as I have a young daughter and my life has pretty much been turned upside down. I have called and made an appointment with Mt. Sinai for Aug/15. Wondering if anyone has done it? I have taken so many meds as well. I am taking now 1/2 .5mg of klotopoin which seems to help sometimes. Just feeling so upset at this point. I just want my life back. Drs here just tell me I am ok or it is stress. I was not stressed when this happened, but feel it now. Very lonely feeling.
rockymama on March 26, 2015:
When you tilt your head to each side you only need to do it about 20 degrees from the middle (which is your head straight up).
rockymama on March 26, 2015:
I am trying Effexor at the moment. Just started a few weeks ago. If I feel any benefit I will message back. They say it can take 4 to 6 weeks to build up.
Has anyone tried birth control pills or other hormone treatment to see if it helps?? I'm on Effexor and it has seemed to help some. Overall the dizziness is less. But it's still there. I'm thinking of trying BC pill but wanted to see who else has tried this before.
Courtney on May 17, 2015:
Thank you everyone for your posts. I got back from a cruise 3 days ago and I still feel like I'm on it. We had perfect weather except for the last 36 hours which was very rocky with high swells. A lot were very sick but not me, I felt queasy but still able to do everything including eat. Or arriving back 3 mornings ago I have basically stayed on the couch and my head is spinning, I feel light headed and exhausted. I went to the gym this morning as trying to get back into my normal routine and I felt like I was going to vomit, everything was moving so I came home. I am back to work tomorrow and wondering when this will go. I'm so sorry to hear that this has lasted some of you months and years. I couldn't imagine having this for more than a few days. I am hoping this goes soon as my job is physical and I have kids to look after. I haven't tried anything yet, but I will start with the herbs and continue with the rest if they don't help. Also I have been on 2 previous cruises and never had any side effects of motion or land sickness at all. Thank you for your posts.
Donna on June 14, 2015:
I am so confused...I have downloaded the ONK strips and have been trying to follow your instructions BUT Tstone , in your instructions you say to have the strips going in the same direction that you turn when marching on the spot with your eyes closed. Rocky mamma , you suggest to have the strips go in the opposite direction to the one that you turn. So this is confusing....I have been trying both ways but this is probably doing more harm than good. Is there any written instructions for the strips or is it a trial and error type thing?
Thank you so much to both of you for passing along this info. I got off a cruise 7 weeks ago and just can't imagine this going on and on. Good luck to everyone affected by MdDS. I will post with updates as I improve!!!
Anna on June 27, 2015:
Have any of you tried taking Shisandra? I just got back from a cruise and have been a vegetable on the sofa for the last week with dizziness, nausea and everything in-between. I have always had issues with vertigo but none this extreme. I decided to try taking shisandra, which I take to aide with jetlag on trips. It's helping. Less pressure and headache and not feeling the room moving. I have eaten a meal, after turning down food for days. I have taken it for two days and still feel pretty good. Not perfect, but good.
rockymama on June 29, 2015:
I was told by my PTs who had contacted Dr Dai to understand more about their treatment that you should watch stripes that go the OPPOSITE of the way you feel you are turning internally (...if you march left, stripes should go to the right). I do believe the VOR is maladapted but I don't know why it happens and if there is possibly a hormonal treatment that we should be trying. Just too obvious that we are almost all perimenopause or have huge hormone changes and we get this syndrome. I'm also wondering if less hormones is better (causes remission) as people I know who are getting into menopause seem to have remission. I have had this for 11 months (believe for some reasons that my hormones crashed) but that since my hormones rebounded, my symptoms have continued. Just a thought. I need to figure out how to 'reset' my brain. Any thoughts??
Becky Hutner on June 30, 2015:
I so appreciate this article & the helpful suggestions in the comments! I'm 8 months into my first relapse of MDDS. First episode followed a 3 day cruise & lasted 10 days. This time, the trigger was a stressful move involving multiple elevator trips (?!). I've tried so very many things including Dr. Dai at Mt Sinai. The only things that provide some relief so far are Lorazepam, Alcohol & being super absorbed in a task. When symptoms get bad, a nap helps too! I wish fellow sufferers the best of luck & may check in periodically for additional comments.
Jos on July 1, 2015:
I have suffered with MDDS since 2008. This started when I disembarked a plane to the Maldives. It eventually went away but have had this twice since with this bout lasting a year now. I didn't get on a boat or plane, it just started out of the blue. I have been having VRT (vestibular rehab therapy) which has helped slightly but my brain doesn't seem to want to compensate to get my 'land legs' back again. The last episode i had of this I had for 6 months and I went on a plane to Mexico and it miraculously disappeared. I was without any symptoms for 18 months and then BAMM! I have just been to Egypt for a week and was desperately hoping it would go away again but it hasn't so will try anything to get rid of this. It's so difficult doing every day things apart from driving or lying down, those 2 things are my saving grace. One thing I do use is Lemon Balm which helps with my anxiety which then lessens the symptoms as anxiety doesn't help MDDS symptoms. I am also continuing with the VRT in the hope that it helps...
Cheryl on July 3, 2015:
I had these symptoms while walking or just standing still - swaying and losing my balance and feeling nauseated - about 10 years ago and never been on a cruise. I went to my regular MD then and he prescribed Transderm Scop, a patch to wear behind your ear for seasickness. Like I said, I'd never been on a cruise. Worked like a charm, had to wear it for several months or a year. Now I feel it returning, today I was 2 stepping when I swayed. I have been feeling nauseated again. I am going to my ENT to make sure that it's not related to an ear infection. If not I am going back to the patch. Make sure your insurance covers it, I think it is pretty expensive. I have seen that they may have it in generic, research and ask about cost. Good luck to everyone, hope this may help some of you.
Sue on July 8, 2015:
I'm about to try the OPK stripes. First I read up on the Fukuda Stepping Test. Please do so. It can be misleading in terms of direction and severity. My situation is complicated by Post-concussion syndrome. I have had great success for that with Upper Cervical Chiropractic treatment (NUCCA) and this seems to have helped the MDDS, tho' not solved it. Agree with everyone, this is singularly wretched.
Allan on July 11, 2015:
Go to the MDDS Foundation website and join the Facebook Support Page... we need more people to come forward and demand Research.
Karen on July 20, 2015:
I am 11 days post 5-day houseboat trip and still land sick. I decided to research and found your site. I was irritated about having to purchase an APP, but figure it was worth it if it helped.
I feel SO much better! I did the Fakuda Step Test and was truly surprised to be over 45degrees different. I bought the APP, did the exercise with some questionable positive results. I repeated it maybe an hour later. Within 3 hours I feel the best I have felt in 11 days! No nausea, no dizziness, my brain feels clear and I can concentrate. I repeated the Fakuda and had ZERO turning. I was sceptical, but am now a true believer. THANK YOU ALL for all of your input!
delemma on July 23, 2015:
I have had a cruise-induced MDDS for two years now, with it escalating after a rash on my skull. I started having these sort of spasms, where the top half of my body would start swinging around like helicopter blades. If I close my eyes and put my arms out they would move automatically up and down like the robot on Lost In Space. Everything would still disappear when I was driving. so I am sure it's still MDDS which the neurologist said I had. I would also have these uncontrollable head movements where my head would go from side to side, like the clown ball game at fairs. I was having these spasms at work, which in the end they told me to go home and not come back unless you're normal again. By this time I had enough and was contemplating finishing myself off. But as I was hitting this new low, my GP realised and put me on avanza, with the clonzepam, which we all have. Also the wafers for the nausea. I also met a few MS sufferers who thought I was one of them as my rocking and swaying was like theirs. When I told them I had MDDS and not MS, they gave me an illegal green leaf to try as this is what they did. I did not rock for three days after this. I occasionally visit them once a fortnight now, and with the GP's meds as well, I am now running, swimming and playing football. I am also back at work, in a shopping centre which you all would know is one of the worst places to visit. I have the occasional bad day, but I have most of my life back. Different things will work for different people. Just give each a go and find out what suits you. Good luck all.
rockymama on July 25, 2015:
So happy the app and exercise helped you Karen!! I think it probably helps that you started it right away. I think doing that, plus calming yourself in any way possible, would be the goal. Some people get better if they take Valium within a few weeks of onset. But I'd check with a doctor before you try this, or see if the head exercise will sort you out.
Gaia on July 26, 2015:
Greetings and thank you all for your comments. About to order the OKN app and wondered if there were any updates from those of you who have tried it? Karen, do you continue to feel good? Also, has anyone actually seen Dr. Dai and had any success with his treatment? Many thanks.
rockymama on August 1, 2015:
I've been trying my own form of treatment based on what I know about Dr. Dais treatment. I sit on the edge of a bed and circle my head to the right (opposite my fudaka test). I lean just about 20 degrees while I circle and I close my eyes. It takes about 7 seconds to make a full rotation. It seems to be helping but will know soon either way.
rockymama on August 2, 2015:
One other thing I've been trying that I think is helping ..... so the optokinetic app and head rocking exercise should ultimately make you feel like you're turning (so for me, since my fakuda test showed I turn left I use stripes going right on the app). Instead of using the app, I roll my upper torso in a circle (one full rotation every 7 seconds), leaning at about a 20-30 degree angle as I circle. I sit on a bed while I do this and I turn in a circle for maybe 5 min at a time. I repeat once or twice. I believe it is helping. I'm trying to do it twice a day and may start doing it for longer each time. I thought I wld share this in case anyone wants to try it.
Patricia on August 6, 2015:
I've had dis. syndrome a number of times now - think it started from weekend boating trips (bobbing in the waves), but it would go away in 3 to 4 days. That was when I was in my 30s. When I hit mid-40s, I tried bus tours (7-10 days) that sometimes included flying and boating. My dis. synd. would stop 3 months (practically to the day) from when I arrived home. I finally just quit traveling - which is depressing.
Sherion on August 19, 2015:
I was diagnosed with MdDS two years ago after staying on a houseboat for a week. The symptoms lasted for over a month. Last year I went on a cruise and the symptoms were back but didn't last as long. I just got back from San Francisco this weekend and after spending short amounts of time on ferries, the symptoms are back. I'm considering myself lucky though because it seems my symptoms aren't as bad as many of yours and they haven't lasted as long. One thing I have noticed is whenever I stay in a tall hotel near an ocean I can feel the symptoms when I'm in my room. I have wondered if any of this is due to the seizure medications I take.
Blissrusty on August 20, 2015:
How'd you figure out the right speed for the ON stripes on the app? Do you start slow and then accelerate... or the reverse?
Anne on August 20, 2015:
How do you determine the right speed in the stripe app? Start slow no ghe. Increase or reverse order?
Dizzydar on August 20, 2015:
Have been suffering with this for 2 years! Really wish there were support groups or at least more professionals that would believe you had a legitimate condition. Have not been able to work and not sure if Disability recognizes this condition. I am not sure where to go or what to do anymore...really need some help!
Rob on August 23, 2015:
Howdy all, my partner has recently been diagnosed with MDDS by our neurologist. She has been experiencing a disorientation feeling constantly for two months since getting off a cruise ship. Her cruise was 10 days, but she noticed something was not right 3 days in when getting off at her first island.
Recently, we have been experimenting with the OKN stripes app on our TV (assuming the bigger the picture the better). The marching test suggested Left, so we have done stripes to the Right. 5 second head tilt for a complete cycle (thought to be the average?), left to right. We have now tried both directions of stripes, as there is no clear indication of improvement or deterioration? 3 x 5 min sessions per day x 5 days one way. After reading the Mount Sinai paper (continuously), it seems the two readings that one hopes to understand about a patient is the perceived direction that one feels and the frequency of bobbing or swaying/rocking. As far as movement goes (swaying or bobbing or rocking) I'm not too sure of how to calculate. I can however tell what I have observed. Firstly, my partner constantly nods her head. Sometimes rapidly. Around 1 sec per nod. if she doesn't the disorientation gets worse. Secondly, when standing still eyes closed her movement back and forward (trying to balance) is often long and elongated (great displacement). As long as times go maybe 5 - 12 seconds for a complete cycle, sometimes longer. So, direction? Frequency? We will of course keep trying this Stripes idea, as it appears to hold some weight. If anyone has had similar observations or a better understanding of the science and interpretation we would be all ears.
Thanks. Regards Rob
Nancy on August 23, 2015:
I first suffered from MdDS in 2012 after walking round a museum with very uneven floors. I've had further episodes usually after train journeys. Vestibular exercises have usually sorted me out but I'm struggling to totally recover from the latest attack because I work night shifts. I've had to be signed off work but have a holiday travelling by a short ferry ride already booked. Will my symptoms get worse if I travel? Someone has suggested taking Sturgeon which is a vestibular/travel sickness drug. I'd appreciate any advice.
Yelena on August 25, 2015:
Hi all. I started to experience swaying and disorientation about 5 months ago after doing 20 units of Botox on my forehead for wrinkles. I have done Botox previously one time and everything was fine. Have been to ENT, neurologist, ophthalmologist, internist etc... While everyone stated that the Botox cannot cause this the ophthalmologist said it can be a side effect. I felt this way after boats but then it went away. I am feeling like I'm swaying forward and back and sometimes the room spins, but most of all I don't feel like myself. I feel more depressed and my family thinks I am losing my mind which doesn't make things easier. I started to go to a holistic chiropractor which has been giving me some PT. So far I had 5 sessions and still no relief. I am glad that things have gotten better for a lot of people here, but I don't know if I can live like this for the rest of my life. Any suggestions would be great!
Madison on September 2, 2015:
What is this app that everyone is referring to? Where do I get it?
rockymama on September 7, 2015:
OK so as far as speed on the OKN app, I go the second to lowest speed. Too fast is not good. And remember to lean your head left (ear toward shoulder but only about 20 degrees from your head being straight up) to right with a full side to side lasting about 7 seconds. Or 3.5 seconds toward one shoulder and then 3.5 seconds toward the other shoulder. So it will be slow.
rockymama on September 7, 2015:
Do any of you take amitriptyline or any migraine meds?
Posey on September 19, 2015:
Trying the stipes today has anyone had any success and if so how long did it take to see improvement?
Agne on September 25, 2015:
Has anyone found any relief from using the OPN stripes?
Linda on September 28, 2015:
I have discovered an unusual remedy for my motion sickness. Previously I suffered motion sickness for up to two days after a car ride. Now, when I have motion sickness I go to the swimming pool and float for 20 - 30 minutes. I use a pool noodle under my neck to keep water out of my ears. The result is no less than amazing. I now use my "float therapy" nearly every day. It won't prevent motion sickness but it is a wonderful and effective treatment!
Lessy on October 2, 2015:
Survivingandwondering, to answer your question - DEFINITELY not always to do with bloody boats, planes or viruses! Nancy - I've tried Stugeron, didn't even notice I'd taken it. But it's worth a try.
I have had MDDS since 2007. Originally started around the time I had an allergic reaction to a laundry water softener, and having to take 150mg of antihistamine (I also have urticaria). It has become less of a problem over the years, I don't hug walls just to walk about now, I'm not constantly tired and I can use knives without fear of suddenly stabbing myself in the face (or something weird). I used to travel by air a lot but not in 2006/7 so unconnected. I hadn't been on a boat in over a decade so not related to that. I don't do concerts. I can drive no worries, but have issues being a passenger. I have issues walking about (too much information or movement, I hate food shopping or closely packed clothes shops). I have been to see 2 ENT specialists both treated me like a hypochondriac. I diagnosed myself after being told there was nothing wrong with me and the 3rd time I saw one of the specialists he just agreed with me and then quoted verbatim the first website he'd come across the night before. I've not been back to see that waste of air.
Nothing really makes it better, but I find doing lots of sports helps to some degree, it makes it bearable and sometimes ignorable. But sport can also make it worse, colds make it worse, TV, flashing lights (including through trees, I'm very light sensitive and often have to wear shades inside and look like a moron), being thirsty, slightly hungry (I eat every 2 hours to avoid this!), too hot (anything over 18C), tired, or overdone the exercise (hiits, or just too many squats), stressed, having a cold, can all make it worse.
I find I get more colds than I used to and they last longer (weeks rather than a week at most). The cures that most doctors (or anyone who says they've had labyrinthitis I did this and it cured it have you tried it? ugh drives me nuts) tell me to try make me worse, no matter how long/often I try it for. I have read that it could be a form of migraine and that menstruation could be one cause (I do get period migraines). However, I started getting these years after the MDDS appeared.
I'm wondering if there is no one cure because there is no one cause. As with most 'cures', what works for one person won't work for someone else because it was triggered by one thing that did particular damage to that one person, and epigenetics making us all unique means that even if another person had the exact same circumstances causing MDDs the same cure wouldn't work. Trial and error I think is the best way, don't just listen to the doctors without researching it yourself, you are the expert here not them, it's your body, they only hear your description of what you are feeling.
Katie on October 19, 2015:
I've had MdDS twice in the last year - the first time after spending an hour on a pedalo and the second time this summer after a week on a canal boat. Last year it went away on its own but took over 2 months. This time I have tried some of the alternative remedies that other people have suggested, they felt like they were having some effect but then it got worse again after about 6 weeks. So I gave in and tried the OKN stripes app, which I used about half a dozen times and my dizziness has gone. It is such a relief! I still feel a little lightheaded if I walk for a long distance (which was always the time I felt the worst) but as soon as I stop I feel absolutely fine again and definitely not dizzy. I would recommend trying it to anyone who is suffering. I followed the directions given by TStone above.
Stewart on October 19, 2015:
I live on a sailboat and spend most of my time on board. The debarkment syndrome doesn't seem to last more than a few minutes when on land. As I write this, docked at a marina, high variable winds and strong tide are moving the boat in every direction, there is no steady rhythm. It is somewhat disorienting and uncomfortable. At sea, the rhythm would be at least bi-directional: the axial pitching from forward motion over waves and rolling side to side, and somewhat predictable. From this unpredictable (and unusual) movement today, I found that the effect was not as severe when I briefly went on land. Perhaps the brain can't really adapt to non-rhythmic motion as strongly and thus the land effect is subsequently lessened.
Jos on November 5, 2015:
Hey Katie. How are you feeling now since trying the app? Is the dizziness still gone? Can I ask how often you used this app? You said about half a dozen times. Was this over a week, say? Any advice would be appreciated. Thanks so much :)
Jeff on November 23, 2015:
Hii everyone ! Im from Belgium and now suffer from mdds about for 4 months after i was on a boat trip on rough sea. Desperate trying to find something to cure me like everybody here. I want to know if there are some things to cure me like the stripes app. Does it help or not ..?? Get well soon everyone! And mentally we have to be strong X
Tim on December 8, 2015:
Hi there, glad I found this site. Reading all your comments and finding other people who have suffered or are suffering from this too. Mine started week of Thanksgiving, traveling up 17 stories in an elevator set mine off I think. Went to NYC got up to my hotel room and started to get headlight and dizzy. Nothing really spins, but I get the feeling that I'm floating all the time. Makes me nauseous, really not happy about it. Found it interesting though when traveling up 70 plus floors in the elevator doesn't bother me. Never felt sick while up, empire state, top of the rock or one world trade center. But the moment I went back in the elevator to my hotel room it all started again. That week I traveled on planes, trains, automobiles and boats. Now back in Florida and the feeling remains. Hoping it goes away on its own within another week or two. If not heading to the doctors to see what they say. Was told I should find someone who offers the "Epley Maneuver". Has anyone tried that? Kind of curious to see if it worked. Thanks TimH
CathyB on December 20, 2015:
In September 2015 we sailed to the Canaries from Southampton, experiencing the tail end of Hurricane Henri. It was extremely rough for the first 48 hours. I was fine! I fell in the middle of the cruise and badly bruised my kidneys, any connection we do not know. After that I felt quite dizzy, in the gym I could not balance properly. After returning the GP was unhelpful. Then the real dizziness started, vertigo, nausea, had a really bad fall in the house, where I passed out and badly hurt my neck and chin and all down my body, went to see another GP who decided to run neurological and blood tests; now need to see a Neurologist for balance problems. This will be in February! Saw yet another GP and was given medication, which caused symptoms of blood clots, am now waiting to see if a clot has developed (serious past history of clots) and have a further scan on Christmas Eve. What I want to know is did the dizziness start on the cruise, did it come after we returned, and I picked up some virus (now told labrynthitis is "doing the rounds"), or is it MdDs? Our GPs do not seem to want to deal with problems, just give the first tablets they think of, and hang the consequences!
rockymama on December 22, 2015:
For those of you out there still suffering, I've had MdDS for almost a year and a half. It's not as bad as when it first started but it's always there. The things that have helped me are exercise (running, yoga) and I take Effexor and amitriptyline. Small doses of both. They have helped tremendously. Klonopin or Valium has been very helpful with travel. I encourage anyone who has the syndrome to try and sign up in the clinical trials done by Dr. Cha. I think we need as much research as possible to get answers to this bizarre, and debilitating, illness. But just know that it can, and will, get better.
CathyB on February 14, 2016:
Had my appointment with Neurology, it is an inner ear problem, and probably will be permanent imbalance, so cruising may be difficult in rough weather. I need to see ENT now! Fed up with being dizzy all the time, don't know when it will come on, so anyone got any ideas? Local GPs not really interested, but the Neurologist was so helpful! He diagnosed this correctly.
Amy on February 28, 2016:
Hey I had this horrible problem following a boat trip. Symptoms have settled within 3-4 months but I am due to go on holiday end of March, only an hour and a half flight but I'm now becoming increasingly anxious. Do you have any advice?? The doctor advised to avoid boat travel but seemed to think air travel would be okay?? Would really appreciate any advice X
Liz on March 1, 2016:
Has anyone tried the OPK strips treatment on their own and had success? I am trying it, but don't think I am doing it right. I have tried left and right and just feel worse. Any advice? Has anyone tried strips going up or down?
Tamsin on March 6, 2016:
I have MdDS and get it for weeks on end after 'plane or boat travel. For the past 3 weeks I have been having radiotherapy every day and at the hospital was using a lift at least twice a day - I now have MdDS back again and have had it for over a week now which is very depressing. What a strange affliction it is. It is rather depressing too :-( I have not tried any remedies yet but thanks for the helpful hints on this page to try.
angela on March 20, 2016:
Hi, thank you to everyone for taking the time to write about your individual experiences with this syndrome. I am not officially diagnosed with MdDS yet but believe it is what I have. I am 38 years old, female and I am currently experiencing symptoms for the 3rd time in 1 year. All three times have been triggered by air travel. The first two times symptoms lasted 5 weeks. My GP sent me to the ENT, MRI is normal. Did spinning tests, blood work etc., all normal. Just got back from a long plane trip and experiencing the same symptoms for 4 weeks now. Yoga helps bring relief. Car travel also helpful. Acupuncture seemed to help me the 2nd time I had symptoms. I'm going to try this stripe test you recommend and also wondering for those that have been to Mt. Sinai - how hard was it to get an appointment? Thanks, best of luck everyone. I know how hard this is!
BrownDoggie on April 3, 2016:
Has anyone had success with amitriptyline? My neurologist prescribed it for MdDS which I have had for 6 months. I read a post that said I would need to get up to 150mg. Is that true? I'm on 40mg and I have only been taking it 2 1/2 weeks. I had ONE, just ONE, precious day that I felt better, no symptoms. The rocking came back the next day. If there is ANYONE out there that has had success with it will you post how much you had to take? Thank you.
Dizzy in Miami on April 10, 2016:
I also believe I have MdDS. I believe this since I have always suffered from motion sickness my whole life. I believe I got this when I was working between my tablet and laptop for 8 hours for 5 days without taking breaks. It was right after that intense session that the bobbing, magnet pulling feeling started. I have had this for 8 months and have been in contact with Dr. Dai. The only medication that helps me is Valium.
Keeping active helped too. I am as foggy as before and the panic attacks have stopped since my body has adapted to its balance confusion. I was also diagnosed with a problem with my left eye. Prism glasses help with the annoying rich visual patterned environments like the mall.
I will keep everyone posted if I go to see Dr. Dai. Also consider Dr. Staab at the Mayo Clinic in Minnesota. Blessings to all!!
Graeme on April 28, 2016:
The MdDS website is down. I need to know what's wrong with me it's been like this for 2 years! Had all the vestibular tests and MRIs etc. but still constant swaying making my life hell! Seen ENT etc. Is there anywhere I can find answers or support? I'm suicidal with this thing, I can't cope.
Monica on May 18, 2016:
DaveK were you active (jumping up and down) during the 2 hour period? I'm very curious on how I can exactly recreate this to try it!
paulapie on May 25, 2016:
I have been suffering from self-diagnosed MdDS for 10 weeks, following a 7-day cruise. I've read all the comments and found several interesting points. First, it does appear that different treatments work for different people, so if you try one and it doesn't work, don't give up! Try another. Second, stay positive and stay hopeful. My daughter told me last night to "embrace it." While that sounds a little nutty, I know what she means. At any rate, I'm going to try the phone app and see if it helps. And maybe the "floating in the pool" treatment. I like the guy who said "Alcohol helps." Yes, I'll try more of that too. Hang in there everyone!
UhOhMeToo on May 30, 2016:
Sure am worried. Day 4 after nightmare overcrowded Carnival Cruise to Bahamas. Last night I awoke to the strongest tugging sensation -- even stronger than when I was on the stupid boat. Was I not supposed to exercise while on the boat?
Anecdotal evidence would indicate this has to be hormone related, especially for women. We're mostly middle-aged and for those who aren't, being pregnant seems to put it in remission. Here's a question for the middle-aged women: did you have hot flashes BEFORE the cruise and did you have hot flashes AFTER?
I find I don't get near as many as I did BEFORE the cruise. Maybe this crap replaces hot flashes and, if so, maybe we need treatment for hot flashes as our own experiment. As we know, being a woman with a crazy syndrome will take years to be addressed. It's a man's world.
So... Off to the doctor next week (GP)... Wish me luck!
KMax on June 7, 2016:
Hello, fellow rockers and bobbers. 47-year old male, first symptoms of MdDS were in October 2015 (8 months ago) after a plane trip to the Bahamas. While I did not go on any boats, I did a "lazy river" 1-mile inner tube ride for several hours over a 3-day period, and went down some very fast and spinny water tube rides, some on inner tubes and some not, and some for stretches in complete darkness where you don't know which way you will turn next. I think it was either the river ride, which was not all "lazy" either -- there were some sections where huge waves of water are pushed down to create large waves that swell down the river and carry the inner tubes. So, I was on my back in the inner tube, with my head leaned way back, while the tube spun on the water but also surged up and down with the waves while being pulled down the river. Sounds like an MdDS trigger to me!
Anyway, I didn't really notice the MdDS symptoms until returning home to NYC from the trip. Part of that is because I had a drink in my hand for most of the vacation, and as many of us know, alcohol can greatly reduce or dull the symptoms. (Too bad it's not a cure!)
I thought I just had "land legs" or "sea legs" or whatever, and was not too concerned until a couple of days went by and the symptoms did not go away. I feel the ground surging under my feet, or the feeling of standing in a small boat on water. If I close my eyes my balance goes pretty fast. It is a weaving or pulsing or someone said "magnetic" pulling feeling, and it doesn't really have a direction, it seems random and all over the place. Tilting my head down is bad, reaching for items on a low shelf, or tying my shoes. I was calling it "vertigo", because I had never heard of Mal de Debarquement Syndrome (MdDS).
So, about 2 weeks after the trip I did some internet research and came across Benign Paroxysmal Positional Vertigo (BPPV). This type of vertigo apparently can come about when some crystals come loose in part of your inner ear, and can be fixed by a simple head roll (the Epley Maneuver) performed by a doctor, chiropractor, or even a physical therapist. So I went to a chiropractor who knew all about the Dix-Hallpike test, which is used to identify BPPV by observing latency of eye movement (nystagmus) following head roll, and he also had performed the Epley maneuver on other patients with success. Dix-Hallpike was negative, but we did the Epley maneuver on two separate occasions because it seemed harmless enough. Nothing, no effect.
Oh, I forgot to mention that I have played drums most of my life (not since getting MdDS) and I have had tinnitus (persistent ringing in the ears) for over 10 years.
So, my next step was to go to a neurology clinic. The first Neurotologist did the Dix-Hallpike test and ruled out BPPV. To be continued... [see below]
Leggzzzz9 on June 8, 2016:
I just got off a cruise ship yesterday after a 6 day cruise. I couldn't figure out why I was stumbling down my hotel hallway / the room was moving way too fast; but after researching all night why I was dizzy and restricted to bed I found this site. Thank God!!! So far I've worked out this morning and I feel much better. Walking, Elliptical, take a break (cup of coffee), walking ... it's a work in progress but I'm coming along. It's only when I lay down that I start to feel spazzy again. I'm going to take some Ginko Biloba when I can get my hands on it. I will try running next week but I believe if I'm patient with myself my stability will come back 100%. Good luck everyone.
KMax on June 9, 2016:
(Part 2) ... Neurotologist #1 sent me to his colleague the audiologist / ear specialist. No findings except some high end hearing loss. They sent me for a head MRI. Nothing - normal findings. Finally they sent me to a third specialist, also a neurotogist, and she told I have Mal de Debarquement Syndrome. Yay, finally an answer. Now I have something to read about on the internet. They sent me to a physical therapist for vestibular therapy, and I went a couple of times over the next few weeks but it seemed pointless. The PT had not heard of MdDS but was eager to learn. But, after the diagnosis I also immediately went to the internet and found all the articles about Dr. Mingjia Dai and his treatment clinic at Mt. Sinai in New York City, which had recently achieved a 70% success rate in significantly improving the symptoms of 17 of a group of 24 MdDS sufferers.
I applied to the clinic, filling out a lengthy questionnaire. I was accepted in mid December, and was able to go for the 5 day treatment in mid-January (5 months ago). You can read elsewhere about the "spinning room" (google Timothy Hain MdDS - he has a clinic in Chicago) and the various tests that they do before trying out different directions, speeds and durations of visual stimuli, mostly black and white stripes on the wall. Bottom line: watching the stripes seemed to have an effect, sometimes positive, sometimes negative, depending on direction, speed, etc., but we never seemed to nail onto the right pattern or frequency. But I think they are onto something for sure. I am going to go back this summer and try again.
Dawne on June 29, 2016:
After returning home from a 7 day cruise in May of 2016, I was suffering once again from what is known as MdDS, Mal de Debarquement Syndrome. I called it EXTREME vertigo on a roller coaster. I knew that I just could not deal with this horrible syndrome again, so I sought out help from Dr. James K. Tang, Chinese Acupuncturist in Arlington Texas. He helped me where no other doctor would or could. Upon my first visit with Dr. Tang, I walked into his office as if I was drunk, holding onto the walls/furniture for balance. He did electro-acupuncture for dizziness/balance. After that visit I walked out without having to hold on to the walls/furniture, still a bit dizzy, but nothing like I first walked in. After my second visit my world was completely was back to normal! The swaying, bobbing was completely gone. I went back two more time to make sure that the treatment stuck. I was not taking any chances of the symptoms coming back!
Previously, last year, I had suffered a severed balance disordered for about 5 months back in May 2015. It began once I returned home from a from a 4 day cruise. I sought help from my primary care, VA doctor, ENT doctor and one other MD. They all just shrugged their shoulders, said that they never heard of the problems I was experiencing and ignored my complaints. I was practically on my own with this. I also saw my chiropractor, at least he tried. But I continued swaying side to side and bobbing back and forth. Other problems were that I could not watch TV or looked at a computer screen for more than 5 minutes. Reading was even worse. Everything in front of me would start swaying or bobbing, it was horrible. The only remedy that would help, as crazy as it may sound - was to drive my car! For months I had researched my symptoms and everything I read pointed to MdDS. After about five months of suffering with these nauseating symptoms it finally subsided. Was it due to the chiropractor helping me? Maybe, but I cannot say for sure. Everything I had read told me to stay away from boats of any kind, flying, elevators, escalators or even going to the beach. Well as you can see, I didn't listen. From now on before I go on vacation I will pre-set an appointment with Dr. Tang for when I return from vacationing near water, flying or anything that starts my world swaying or bobbing.
I am so glad this helped me. Just wanted to share my story. Dr. Tang made no promises when I first met him. He is just a very humble doctor from China who was able to help me.
Barto on July 9, 2016:
Hi, does anyone know of a specialist anywhere in the UK?
Dave H on July 28, 2016:
I'm glad I found this site as it helps knowing "I'm not alone"! I am a merchant seaman. I have always had the feelings of rooms and hallways swaying after a trip, but it always subsides in a couple days, at the most. This year it hasn't. As I look back, it has been over 4 months now. I had 2 MRI's both neg. Hearing test - significant left ear hearing loss? I seem to hear fine/the same in both ears? I'm going to re-take the hearing test. I just had a balance test yesterday so I won't have results for almost 2 weeks. A neurologist suggested but doubtful it was "post cruise" syndrome, which is what led me to this site. I believe it is MdDS. I'm hopeful the herb remedy will help. I waited ‘til after the balance test. I dread seeing more specialists and more tests. I'll see what my ENT Dr says when he gets balance test results. I hope he is familiar with MdDS and will consider a diagnosis already. I'm afraid to go back to work "at sea". I will let you know about results with Valerium, Gingko and black cohosh and also my follow up with ENT.
Gooks on July 31, 2016:
Hi. Can we do jogging with MdDS with constant swaying motion all the time? I think I have this for last 10 days. Did paragliding 1 month back and possibly it caused that. I am from India and ship coasts are 1000 miles from here.
Kim on August 2, 2016:
So glad I found this site- the information about the app really intrigues me, now that I know the Mt. Sinai treatment is so expensive ($2500). Has anyone else found relief from their symptoms by sleeping on the ground, such as when tent-camping? It seems to be making a difference for me, so I'm going to try it a few more nights.
Kelly on August 20, 2016:
Just got back from a 7 day cruise yesterday. Thank you everyone for position your experience. Kinda freaking out. Does anyone have statistics on home many people this effects and how long symptoms typically last?
iris on August 20, 2016:
Fascinating comments! I was diagnosed with Meunieres 10 years ago- occasional episodes for 5-10 days duration. Went sailing 10 days ago and I am a total mess - disoriented, dizzy, fuzzy brained, nauseous, and other symptoms. Different from vertigo - like the transdermal patch idea. However, I am afraid to drive - when I'm in car with my husband, I get dizzy and nauseous.
Kelly on August 29, 2016:
I also recommend to stop wasting your money on doctors just to have a diagnosis. All symptoms are very accurate on mdds site and if yours fit in, why go to doctors? No doctor ever offered a treatment that works, except may be Dr. Dai.
Kelly on August 29, 2016:
There 2 Facebook groups: mdds research and spontaneous mdds. May be more, but these 2 are all you need. And no, nobody found a cure yet. PONS device is being tested like forever. May be it will help, maybe not. But it resets your brain for sure, but then again there are no PON specialists in existence who would train you. You can watch PONS presentations on YouTube.
Wendy on July 25, 2016:
Mark Cuban explains a cure he has found on this web page. He saw doctors at www.dizziland.com. I am going to look into it. One week post cruise and definitely have MdDS.
Lunch on September 6, 2016:
Hi everyone, My wife suffered from this for about three months after our first cruise, and it went away on its own. After spending some time at a cottage a year later (this past August), whether from being on the dock, or taking boats out on the lake... it came back. HOWEVER, last week we went to a large fair (CNE) with rides like 'tilt-a-whirl' and 'the scrambler'... things that really shake you and move you around a good deal. Lo and behold, the next day she realized that she was no longer 'rocking'. I hope this is of help to anyone here, I've come back to this message board frequently and wanted to share our experience. Get to a fair!!!
TLK on September 7, 2016:
Try the cawthorne-cooksey exercises, my GP told me to try them and they are working!
Pregnant MdDS on September 20, 2016:
Hi all, I have suffered from MdDS on and off from plane flights for years. I found a great DR in Cincinnati who diagnosed me and then gave me some exercises and a prescription for Lorazapam. I literally have only had to take three pills and it was gone. I also typically take it before a flight and I don't get it anymore. Unfortunately now I'm pregnant and can't take it. I flew last week and am suffering terrible from this once again. If anyone has dealt with this during pregnancy I would love any suggestions.
Lyn on September 29, 2016:
I have had this problem for 7 years. Have seen numerous doctors. One GP suggested land sickness which I mentioned at my next Consultants appointment. He sniggered, laughed and said what's that I have never heard of it. Asked to see different consultant and discovered that despite dismissing it he'd now put it down as my diagnosis. Needless to say I was most unimpressed that his ego had failed me. Back to GP today and told that I'll have to live with it. I already do! Feeling very low at moment and don't have any faith in the medical profession.
MdDS worrier on September 30, 2016:
A rare male here and I think I may have this. 12 days after a trip to London, coming back on the underground for an hour followed by a 6 hour drive, and I'm still rocking, bobbing and swaying, tired, brain fog, feel fine when driving, all that. I could have almost written the symptoms list on MdDS myself. I think a contributing factor was that I was very stressed with work during the journey.
I have a question for those who have had remission after a few weeks or months - did it go away suddenly? Like you woke up one morning and bam, it's gone? Or was it a gradual fading of the symptoms?
I'm wondering at this stage what the best way to handle this will be, since my doctors didn't even know what it was and just started Googling the same stuff I'd already looked at. Shall I try and ask for some medication or just ride it out?
dizzyjean on October 3, 2016:
Hi all, I'm new. Came back from a cruise 3 weeks ago with land-sickness. I did the Fukida stepping test, and cried at the results. Way off to the left. So I downloaded the OKN stripes app, and have been using it every couple of hours, with the stripes going the opposite way from the stepping test results. I think it's working for me. When I spend time on the computer, the dizziness gets worse. It does get better in the car.
KMax on October 7, 2016:
Hi spinners, I'm back. 47 yr old male, I last posted in June. Have had MdDS for 1 year, from river raft wave ride and water slides at Atlantis. I had done Dr. Dai's spinning room treatment in January 2016, to no effect though I think it has promise. I try the OKN stripes to the left from time to time on my computer (my Fukuda step test has me moving right) but no real help. So, I went another neurologist recommended by Dr.Dai, mainly for anxiety which I believe is MdDS caused. My hands shake some times. At least the Dr. said I don't have Parkinson's. The new Dr. did lots of manual eye tests, reflexes, etc. and recommended I get a full contrast MRI. I had had a regular MRI showing no negative results a year ago. I declined, I do not want to be injected with ink and lie still in a box for an hour. Anyway, I was prescribed 2 mgs twice per day of Diazepam (Valium) and 25 mgs once a day of Sertraline HCL (Zoloft). I was warned of adverse sexual side effects of Zoloft and sure enough, after a couple days, things stopped working "down there". I'm done with that, I would rather have MdDS. So, off the Zoloft, and I can have sex again, yay. I like the valium, it seems calming though I only received a one-month prescription. 2 mgs is a pretty small dose. Once I tried 4 mgs at once and felt weird and sweaty then clammy. Only have 10 pills left and am taking only one a day. I think I will try the herbs next. Anyway, I appreciate updates from old posters on how you are faring and what you are trying. I find heavy exercise and sex to be the best for anxiety relief, and red wine the best for spinning relief. Really! Also helps me sleep, though I try hard not to overdo it sometimes I fail. We will get through this!
KMax on October 12, 2016:
I have been trying the OKN stripes app on my computer off and on since January, and I always had the stripes moving left because in my Fukuda step test (march in place with eyes closed and arms pointing forward for 1 minute). I had always turned right. Well 2 nights ago, I did the step test four times by myself, 100,100,100 and 200 steps. All 4 times I turned left, once by almost 90 degrees. Very strange! So, I am going to reverse the OKN stripes so they are moving left and I will try that. Also, I have started taking gingko biloba, black cohosh, and Valerian root as a poster here recommended. The Valerian is taken before bed. I also take a magnesium caplet because some MdDS doctor on another website is convinced that magnesium deficiency can cause MdDS. He recommends injections/infusions though, and often. Not for me!
Tanya on October 12, 2016:
I have experienced this on numerous occasions after flying for long periods, ferry rides, RV trips and now after an 8-day cruise. We just returned on Saturday. I had done the maneuver to reset my ear crystals before after experiencing this prior and had some help. This time, no help. I did however experience some relief yesterday after drinking a detox tea that I made. I used 2 tbsp apple cider vinegar, 2 drops lemon essential oil, 1/2 tsp ginger, 1/2 tsp cinnamon, 1 tsp honey and about 12 oz hot water. I drank this tea one time and also took a decongestant and voila, so far so good today. I was really bad having to hold onto my kid at grocery store, feeling really nauseous all the time, really dizzy/wobbly. Hope this info helps someone. I plan to keep drinking the tea daily for a week to make sure I am done with the land sickness.
KMax on November 22, 2016:
I stopped taking the valerian root, ginkgo biloba, black cohosh and magnesium tablets. One or more of them does not sit well with my stomach. Saw Dr. Dai again for one day last month, and going again soon for a day. Trying different techniques in the spinning room. The 2 mg valium twice a day does help, I think, but I may get off it soon for at least a couple weeks just to see the difference. I cut out coffee / caffeine almost completely and that has helped. I had a diet Coke a couple days ago and felt more spinny / wobbly for a couple hours afterwards. I think heavy salt, like a lot of soy sauce on sushi, is bad, but I don't know if others have had similar experience.
Linda on December 15, 2016:
The first time I had this it lasted a year and a half. I just went deep sea fishing last week. As soon as I got off the boat I knew I was not right. Yesterday I decided this was not going to stop my life like before. Last time it even cost me my marriage. I went to exercise class tonight. It was very active and fast paced. The amazing thing is after class I realized my head is clearer. Maybe I will wake up in the morning totally clear and able to function.
Linda on December 28, 2016:
I found something that helps. Acupuncture.
Kim on January 5, 2017:
Hello, all! Started looking up whatever I had going on with this constant "walking/riding on a boat" feeling and I honestly believe I have MdDS. I was on a 3 day cruise to Mexico for the first time a few days ago and had to fly to/from to it. I've always had motion sickness from unstable movies (those ones that are shaky all the way through), to rocky road trips/ferry rides, and even when riding elevators, but not as much on escalators and short amusement park rides (maybe some dizziness, but only for a few minutes). I read about eating and drinking ginger in the past and I was fine when we were ashore in Mexico, but now I feel the movement hardcore and am going to try the herbal combo posted on here and considering going to either an acupuncturist or masseuse (and hope they show me which pressure points help this lessen or maybe even go away). Oh, and I'm a 28 year old female and had a pretty heavy flow during the whole cruise, so maybe that had something to do with it.
Bun on January 8, 2017:
I just came back from a 7-day cruise to Bahamas. It's been two weeks now that I am feeling this wobbly rocking sensation. At first I thought I was only tired, lack of sleep. But it has been two weeks and it's not going away. I went to see my GP and I thought maybe I had vertigo, but he said no. Nothing he could do so I only took gravol at night time to get some rest. During the day, I feel dizzy, feel like everything around me is rocking, but when I am in the car, I feel better. I have been on cruises many many times, and only this time experienced a day of terribly rough sea. But even when I was dealing with that, I didn't have too much motion sickness. Now I feel that my world is always rocking. I can't focus and I feel so sick of this sensation. I am sure this is what is called the disembark syndrome. I can't wait for it to go away on its own. Any good suggestions out there? Acupuncture, osteopath, ginger tea? Anything helps?
Getmeoffthisboat on January 24, 2017:
Hi! I just got off a cruise 10 days ago and have been wobbly ever since. My husband and our friends are all ok. I did get a bad cold at the end of the trip that I am just now getting over. I went to my GP this morning and she prescribed a ZPAK, and some prednisone to open me up. I decided to try Sudafed first hoping that helps. Also started some Flonase. I am terrified about this condition and I am fine when sitting or laying in bed but as soon as I get up I feel like my equilibrium is off. I have never had this before as this was my first cruise ever and my last after this episode. It's been very depressing and I am so scared I am never going to be the same. I am a 38 year old mother and wife to 2 young children and I need my life back.
linda on January 27, 2017:
Avoid Qtips. I found when I stopped using Qtips my vertigo went away.
Ana on January 28, 2017:
Okay, I tried the OPK therapy (found it on You Tube). Left works for me! I already feel better. Thank god! Just looking at the OPK for a few minutes has already made a difference. I think it will still be a few days till I feel 100%, but I am so grateful I found this. Phew.
So I just did this intuitively, right no good, left yes. And I can feel all sorts of realignment going on in my ears and sinuses wow! Crazy!
Bun on January 29, 2017:
I just came back from a 7-day cruise to Bahamas. It's been two weeks now that I am feeling this wobbly rocking sensation. At first I thought I was only tired, lack of sleep. But it has been two weeks and it's not going away. I went to see my GP and I thought maybe I had vertigo, but he said no. Nothing to do so I only took gravol at night time to get some rest. During the day, I feel dizzy, feel like everything around me is rocking, but when I am in the car, I feel better. I have been on cruises many, many times, and only this time experienced a day of terribly rough sea. But even when I was dealing with that, I didn't have too much motion sickness. Now I feel that my world is always rocking. I can't focus and I feel so sick of this sensation. I am sure this is what is called the disembark syndrome. I can't wait for it to go away on its own. Amy good suggestions out there? Acupuncture, osteopath, ginger tea? Anything helps?
Shan on February 11, 2017:
This has been going on for 4 years for me. I have had it before getting off a boat and it would last up to a week. The last time. I never got off the boat 4 years ago. Many doctors, specialist. I try to see what is different in my life style. The last couple of weeks I have gone out with my friends and noticed after about 5 beers I feel better. So what is in beer that makes it slow down? I have been taken out of work. Bad episodes sometimes can't get out of bed. But like tonight I went to my friends, moving like crazy and had 5 beers and I feel better. Tell me why? I need my life back.
Hello on February 13, 2017:
I have this from high speed lifts. As a child I experienced it mildly from trampolines and body surfing. I don't get sea sick or car sick. I am experiencing the sensation that occurs when the lift stops, sort of up then down sensation - but I feel it just walking along, not in the lift. I don't have head or neck aches, only that nausea imbalance sea sickness feeling while walking around. It occurs at random times when walking. Trying ginger, and also wondered if anyone has ever used SeaBands that are placed on the acupressure points on the wrists, or acupressure/puncture? Thanks for all the info.
Adams! on March 12, 2017:
Ah lads, was in a long haul flight 3 1/2 & 2 1/2 weeks ago, feeling as if I'm on a boat for 3 weeks now, walking as if I'm drunk and exhausted from it all. Not feeling nausea but not feeling well at all. Driving is my only relief :-(
MdDS on March 12, 2017:
I also went on a 7 day cruise and then hopped on an airplane for 5 hours that ran into turbulence on top of that. I came off the ship January 7, 2017 and today is March 12, 2017. I am still rocking and swaying to this day.
Things I have learned: I feel like some days are worse than others. I have this feeling of bobbing up and down all the time. Some days it feels like I am on a high wave and some days a little wave but still there. When I walk it is as if I am on a trampoline and trying to keep my balance. I keep going though. I decided not to just sit this out but try to use humor when I can. I tell everyone that who else can take a free boat ride all day and some of the night? Keep smiling, know you are not alone and never ever give up searching for what can help you. Like others I have been to my doctor, chiropractor, ENT specialist and now I have just been sent to my town's Physical Therapy department. My PT checked me for Bvvp but I do not have that. He has heard of MdDs in his classes and told me he is going to try to learn along the way on what works best to get this stopped. I have copied and pasted in a long note - things that we are going to try. Prayers: that something helps but if not, I will not let this stop my life. I will be stronger because of this. At least I am not in terrible pain except from some headaches and not sick to the point I live in my bathroom either. Keep your faith. I will let you know if we find something to stop this also:)
Needthisgone on March 17, 2017:
Got off boat yesterday, now feel this land sickness. Have put bands back on and taking calm sickness pills. Felt good on ship...!
mary ann on April 2, 2017:
I went one a cruise 30 some yrs ago. It was for only 2 days but it was enough to give me the condition. I have lived with it 30 yrs now. I haven't found a way to get rid of it. I would love to go on another cruise but I'm so scared that I will get it back full force. It seems to have slowed down.
Tina on April 4, 2017:
For all of you having MdDS symptoms, I would just like to let you know that there is an MdDS Facebook forum that is a fantastic resource. It is private, so you can ask your questions, without your friends and family reading your posts. There is a ton of support and information sharing that goes on there. You can post your questions, and get many responses, because the FB format makes it easy.
Vertigo on April 5, 2017:
Any successful stories...? Has anyone tried nucca chiropractic?
Dan on April 9, 2017:
I think I've got this but haven't had a diagnosis. In 2015 I went on a boat for about six hours while on holiday, and a couple of days later I flew home which took around five hours. For the next month or so, I felt dizzy and a slight rocking sensation. I went to see my GP and was told that it would just take a bit of time for my vestibular system to get back in sync. I just got on with it and it went away. I did try Stugeron which did nothing for it.
I was fine until 23 February this year, when Storm Doris hit the UK. I was in work and my building was shaking quite a bit. In the afternoon I started feeling dizzy, and I'm still feeling it over six weeks later. It affected me much worse this time and I've been terrified that this time it's here to stay. I'm feeling better mentally now but there is no difference in symptoms really. It seems a bit worse than last time. I have a constant kind of lightheaded feeling and when I walk my legs feel very heavy and kind of feels like they're rocking.
It doesn't stop me from doing anything but it is very annoying and I'm trying to decide whether to just give a bit longer (as I believe relapses tend to last longer than the initial episode), or try to get a referral and a diagnosis. I know that there is a man in Sheffield called Chris Bowes who trained with Dr Dai in Mount Sinai and offers the same treatment, so I may end up giving that a go if it doesn't go away. This time I've tried Stemetil and Serc (not for very long though) and they made no difference. I'm also on Citalopram 20mg as I was very anxious and I'm taking vitamin D/multivitamins. I may try the valerian root/ginkgo biloba/black cohosh suggestion or see if I can be put on a different antidepressant. This just needs to go!
Miss chow on April 27, 2017:
I started having symptoms of internal shaking, and feeling like I am on a boat when lying down, for several weeks now. Cannot sleep properly at all. Have had a sensation of always feeling to fall for several months now. Everyone is saying it's anxiety but I must feel anxious if I have been feeling weird and awful for so long. I need help. I have my whole life ahead of me and 2 young sons to look after. I must get over this.
Gina on May 12, 2017:
Does anyone know how to get an appointment with these doctors who treat MdDS at Mt Sinai??? I can't find any contact information.
Mj on June 5, 2017:
5 years ago sailed an Alaska cruise for 7 days. Took about a week to feel normal. At that time I knew nothing and thought it was just me. Just finished a Hawaiian cruise and the rocking is here again. I feel like a sleepy, tipsy girl. Hopefully it will only be a week or so again. So scary to hear the horror stories of long bouts that some of you suffer. Good luck, God bless.
Fran on June 6, 2017:
I get off balance sometimes have to hold on to something when I walk. Hasn't happened in about 2yrs. I would love to go on a cruise. Scared but booked one for 9 nights. Am exited but scared. My friends and sister and mother and son have gone - nothing happened to them. Want to go to have a great time. Anything you can recommend to help prevent from happening to me?
Liz on June 11, 2017:
I took my first cruise (5 days) and experienced seasickness. Only on-board acupuncture worked. The acupuncturist treated me for MdDS as well. The first couple of hours after disembarkment weren't too bad, but my symptoms progressively worsened as the days progressed. Driving helped, but made me sleepy. I went to doctors and acupuncturists who weren't able to help or even recognize MdDS. I kept researching. Someone on a different website said to try floating and tumbling in a swimming pool or the ocean for "a long while". At first, I felt worse (like I was going to vomit in the pool), but I stayed in the water with the kids. I was exhausted when I exited the pool. However, after 10 months, my symptoms were significantly less, significant enough to feel with the first step on solid ground. I slept good that night and have not had a symptom since. Maybe it will work for you? I wish I had tried it months earlier!
Enough Already on July 13, 2017:
Hi! Just did a six day houseboat first of June. Didn't have any issues on the boat (or ever for that matter on any boat, plane, car, roller coaster, etc.). We docked, hopped in a car and drove two hours, stopped to eat and when I sat down in the booth, felt the motion and here six weeks later, still feeling the dizziness, some days worse than others! This is THE worse feeling ever! UGH! Scheduling an appt with my ENT to see if I have a sinus infection or if this is indeed related to MDDS and this boat trip. Seems like if I'm moving I'm totally okay. It's when I'm stationary it seems the worse! I've been in tears over this!! I feel for all you going through the same thing!
Phil on July 22, 2017:
Here's one: as a healthy mid-thirties male, I rented a jet ski for 3 hours, and had no motion sickness at all as I raced around. Driving back to my motel, though, motion sickness slammed me, especially on curves, to the point I had to stop, lie down on grass in a cold sweat, and wait for it to pass. Eventually on the drive back the sensation lessened. Taking a Bonine made all the discomfort go away.
Twenty years later, almost every time I go windsurfing, I experience something similar: when OFF the water, for a day or so, everything feels like it's gently rocking, no nausea though. Something I learned to live with, I always assumed it's what sailors meant by "getting your land legs back."
Heather K on August 11, 2017:
So 2 years ago I got Mal de Debarquement from being on a catamaran in Curacao. The sea was extremely rough that day and it didn't faze me at all, I was too concerned with my kids who were throwing up from seasickness. The ship was also billowing huge amounts diesel smoke. I have always been sensitive to smoke. I usually get sinus infections from them. After we got to our island destination everyone was happy I relaxed had some drinks and did a bunch of dives off the boat with my kids. (I used to dive a ton in high school) but now I have some arthritis in my neck from it. Anyways over the next few days my sinuses started to get really congested and when we were on the airplane I felt a ripping feeling in my left ear and back of my head. It was like the worst headache I've ever experienced. Once home the mal de debarquement kicked in. It took 2 months to figure out what it was. Then it took an additional two months to cure it. Ultimately, what I think fixed it was a lot of vitamins, ginkgo biloba and eastern medicine like acupuncture and c upping. But it only seemed to slowly get better. What I think really fixed it was flying again and then immediately the next day going in for acupuncture. It's like he hit the right points and all of a sudden a huge amount pressure in my head was released. It was like the timing was right and he reset me. Anyways fast-forward two years later, two weeks ago I was on a boat in a lake (drinking, had fun once again diving into the water, stupid me) and guess the inevitable. But this time I am not messing around. I'm doing yoga, drinking bone broth, doing the vestibular exercises Cawthrone Cooksley, getting my hormones checked getting acupuncture and cupping, taking ginkgo biloba and B12 shots. And if necessary I'll get in an airplane and come back down again and get acupuncture done right after. Suffice to say what I've learned after all this research I've read over the years and that is this particular syndrome seems to be vestibular-cerebellum problem. And I believe that's connected with our hormones and possibly even psychological. Somewhere throughout all the things I've researched I read that there is a three alarm system that's malfunctioning going off in our brains. Basically your brain has three sets of alarms that are set off. The first one is due to your hormones which may be off or you may have some sort of sinus issues both are interconnected and they can put pressure on your vestibular/inner ear area. The second is you have either an autoimmune disorder or a previous injury near your neck or brain even possibly TMJ (My arthritic neck made diving a bad idea). And thirdly there needs to be some sort of psychological component which in my case could be the drinking and/or experiencing some anxiety or knowing the smoke would make me concerned I would get a sinus infection. So how many of you drank on your cruise ship/flight/after a long car travel? And do you have sinus hormone autoimmune or above neck injuries?
Puddlejumper on August 12, 2017:
Hi there - thought I should leave a comment as I have found everyone else's such a help. Husband & I returned from our first cruise, from Newcastle to Norway for 7 days, on the 10th August. We both felt jaded after the cruise, but my husband soon shook it off after a sleep. I however, although shattered, couldn't sleep, my heart seemed to be pounding & lurching, I felt sweaty & very unstable, although not physically falling, just internally!! I felt very nauseous, & was apparently very ashen looking. Having read the advice on this forum, I paid for the OKN Strips App, had my husband witness my marching exercise, which proved a tendency to the right) so set the black & white stripes to pan right to left & dipped my head slowly towards my shoulders whilst watching the stripes move slowly on my tablet. Did this 3 times yesterday & repeated my marching this morning & am showing much more stability - hurrah!!!
Went to Holland & Barrett with, I thought the carefully noted recipe suggested above for the herbs, but found that I must have left it on the kitchen table even though this was my sole mission - head fug, confusion etc. etc. Thankfully I could remember the valerian & ginkgo & got as far as "Black something" - thankfully the girl was very helpful & knew I must be referring to Cohosh - she then suggested that I should consider replacing this with a sage supplement, on the grounds that the Cohosh, to be effective, should be taken during the night & at the same time, which could be difficult to manage. As the principal function of both herbs is to manage sweating (& directed to menopausal symptoms) I took her "sagely" advice (tee hee) on board. So far, have taken a sage tablet daily, am aiming for 3 ginkgo biloba during the day & valerian in the evening. Had a great night's sleep (9 hours with a toilet trip around 2:30am) although this could have been that I was so exhausted from previous night.
My husband informs me that I now look like I might be returning to "the land of the living" & am now not paper sheet white. I still have a bit of an internal upward swell motion, fuggy head & pressure around my eye sockets but feel so much improved I thought I should share this with you & offer some hope for those who felt as awful as I have in the last 48 hours.
Today, I'm aiming for some fresh air & hopefully a bit more solid food !! It could be that my symptoms may have naturally alleviated during the time passed between now & Disembarkation, but as ill as I felt, I could not run the risk & was willing to try all suggestions to make progress. So, thanks again for the advice & support, without which I would have been clueless & possibly now desperate!!!
Thank the Lord for Holland & Barrett too in the UK (plus, the penny sale!!). Good luck all xxx
LoopyLou on August 22, 2017:
After I had the whole floating/swaying/bobbing sensation for 4 days after a 90 min boat trip, I stumbled across the comment from Tstone about the head tilting/app treatment. As I was stuck bobbing around my hotel room without the luxury of the app, I tried modifying the method, which seemed to help, especially when repeated every couple of hours:
- find a full length or half-body length mirror. You need to see your head, arms and upper torso.
- stretch your arms out in front of you like a zombie.
- tilt your head to one side about 20 degrees.
- while watching your own eyes/face, keeping your head tilted, march on the spot for a minute or two. You may need to experiment with marching speed to optimise the effect - I found marching slightly faster than my pseudo-swaying gave the best results.
- stop and repeat the marching in the mirror with head tilted 20 degrees to the other side.
You may need to repeat this a couple of times, but it really reduced my swaying symptoms for several hours and it becomes less and less noticeable with repeated sessions every few hours.
Hope someone else finds this helpful!
Recovering Bobber on November 8, 2017:
I am so grateful I stumbled over this website and realized what my health problem was. I was on a 10 day cruise, my third one and it wasn't until a full week later that I became violently ill with the "flu". I am rarely if ever sick so it really disturbed me.
Since reading the differing options, I have tried quite successfully to combat the swaying and dizziness. Try standing on one foot and stare hard at a distance immovable object. Keep thinking of hitting the re-set button for your balance and whenever you are walking and feel the floor moving, lift your eyes and focus on something farther away that is stationary. It is helping, along with not using q-tips for the next while. Inner ear problems has always been a cause of balance issues, so it makes sense to leave the inner ear alone until things "right" themselves.
I am finding light exercise is also helpful, but going a lot slower as the ground keeps moving! I have only started to drive again after two weeks, and have to remind myself to move my head very slowly when shoulder checking. Any quick movement brings the dizziness right back. Hang in there folks and keep finding that stationary object to focus on. It is helping a lot!
2swank on January 23, 2018:
I have just gotten off of a four day cruise yesterday, so I have literally been off about 24 hours. I am not sure if my swaying will leave but I am sure praying to God that it does because at this time it is bothering me enough to want to find a solution. Thank you all for your comments.
Tracey on January 26, 2018:
I'm interested to hear people's experiences with Mal de debarquement syndrome and exercise. I was a very active athlete prior to diagnosis and I am struggling mentally with a lack of activity.
Does research suggest exercise such as running helps or hinders recovery? And what are others' experiences?
Thanks in anticipation.
Phyllis N. on May 11, 2018:
I have been looking for help for 5 months. Thank you all so much. Mine started with severe coughing and flu symptoms. I was in bed for 2 months. I have been to so many doctors. They know nothing. I am worse when I am tired (exhausted all the time). I am going to try the 3 herbs. Thank you all so much.
Lori on June 17, 2018:
I had mal debarquement after a short cruise of 5 days. This cruise also included a train ride, bus rides and plane home. It lasted 3 months. I waited several years for another cruise. I have had several since and did not get it. I always spend a day in a hotel after flight before cruise, I also spend a day after the cruise before flying home. I try to get my feet on ground at each stop. Get lots of rest. So far it has worked for me.
Michelle on July 15, 2018:
I too took a 5 day cruise and began the rocking and swaying as if still on the ship. I am only six days out from return to land. But also was diagnosed with fluid in the ears and an ear infection. This was my first time experiencing this. I will never cruise again. Also the exercises listed with the OKN strips app do work. I did them today and feel much better. I will continue to do them three times a day until I am healed. I also work a desk job and cannot afford to miss work due to this. Praying for God's healing. Remain calm and we will all beat this in Jesus' name.
Cindy on September 5, 2018:
Can anyone explain further how to do the OKN strip exercise? How do I know which way to watch?
Angie on October 14, 2018:
I recently went on a 4 day cruise (my first) and experienced this land sickness. Not debilitating but did not like the feeling at all. I tried taking the rest of the Dramamine I had and it was no help. A co-worker mentioned that she uses essential oils for her car motion sickness and it works great. She had it in the car and let me use it yesterday. Worked within 5 minutes. Applied it 2 more times that day and woke up this morning feeling normal!!! Devertigo from Walmart. Or you can make your own blend if you are an essential oil user. Hope this helps!!
2true on January 1, 2019:
I'm in month 10 of without doubt Mddb & have made great strides in feeling much better past couple of months - HERE IS A GOOD TRUE SOLUTION: I need to post these videos on line, but basically you watch these series of dots/lights go across, up & down, & diagonally across the screen (1 min each) for about 15 mins/2x a day. Then build on with back and forth & up & down head movements, also separately doing side to side head turns w focus spot & up down too, then head side to side keeping eyes focused on spot & up down too. By grace I found the Midwest Dizziness & Balance Institute, which seems to be an off shoot of Newport-Mesa audiology. Someone needs to post these videos for free on line... it is a good way to make great improvement if it's really Mddb. For me, it was horrible for many months with bobbing, dizziness, & nausea, and I tried everything & saw lots of doc's and ENT's, but this is what works! Best of luck to you!!
Freya on February 12, 2019:
For all the people commenting here and also everyone that will read this in the future: if you are suffering from symptoms similar to these or the same as people with the disorder that is discribed in this page, but without having been on a cruise, boat or a plane, than it is likely you may have vertigo.
Vertigo is similar in symptoms to travel sickness or reverse-seasickness, only there is usually no relief when in a car or a boat. Vertigo can be mild or severe, be continuous or you can have episodes. It can be that you have an episode for 30 minutes or a few hours but also a few days or weeks continuously, though even during an episode it doesn't be the same level of bad through the whole episode.
I have vertigo myself and I am now 30 years old and female. My vertigo is most likely caused by an hereditary inner-ear problem (my mother has it as well). There is a balance organ in both your ears which is also part of the problem with any kind of motion sickness. My inner-ear problem causes hearing problems and mild tinnitus and also balance issues, dizzyness and nausea, in other words vertigo. Sometimes I see the world spin a bit and if I feel like that I often lose my balance. I will look like I am drunk when walking or moving and need to watch out to not get hurt. It can also be that I don't necessarily see the world spin but that as soon as I move my body or even my head that I get really dizzy and feel really weird, etc. It is a degree less bad because it is less bad when I sit still and don't move my head. There is also a degree below that which is what I suffer from most often. I won't see the world spin and will be less dizzy but my digestive system seems to think that I a'm in a constant roller coaster or on a ship on rocky water. I can be dizzy with this or very little. It feels so weird when this happens and it makes me feel ill, though not as weird and ill as other worse stages.
There are days when I barely have any vertigo or maybe only later in the day when I am tired. I also have chronic fatigue syndrome so I tire easily and have a weak immune system. I know that my vertigo flares up when I am tired, exhausted, have pushed myself too hard, when I am stressed or have been stressed, when I get a cold or virus, etc. It happens or gets worse when you are not a 100%, when your immune system gets weaker or when you haven't been taking good care of yourself.
It can also worsen when you have been hearing sounds that are too loud for your ears, at least in my case, though that can depend on what is wrong with your ears and doesn't have to be true for everyone with vertigo. So be careful with in-ear headphones, loud music in general and construction sounds and things like concerts. It is better to use on-ear headphones. Also when doing construction, for example while drilling, wear ear protection. At a concert wear protective earbuds.
Freya on February 12, 2019:
Follow up from my first comment, because it didn't all fit into one comment ;).
Know that the tubes of eustachius (if that is the correct spelling) can also wreak havoc for vertigo sufferers. There is fluid in those tubes and that is neccessary and functional. If the consistency of that fluid changes temporarily then vertigo can get worse. This can happen when you get too little fluids or too little or too much salt. This often happens during hot weather or after (intense) exercise but it can also happen for some people simply because they ate a salty snack like potato chips or because they drank less water than usual.
Vertigo can be tricky and also has causes in the ear but can probably also be a neurological problem or a problem with both a neurological and an ear cause.
There are often no easy cures but being healthy, happy and balanced does help. Eat and drink right, sleep well, manage stress, try natural remedies.
Myself I have been using Sea-Bands for years to combat the dizzyness and nausea and they work really well 😁! They won't cure me but they make it livable most days. I also use them for motion sickness and when I have a stomach bug. They can be used for any kind of dizziness and nausea. Because I have small wrists I prefer to use the wristbamds for children because they fit me more snugly and then they work better.
The sea bands can we worn when needed for short times but also for long times like days or weeks even. You can wear them
when swimming or during a bath or shower. If I wear them when showering I take them off for a moment to wash them well before putting them back on.
You can wash them by hand like the manufacturer suggests but I have also washed in the washing machine on 30, 40 or 60 degrees celsius without problem. Just be sure to wash them in a wash bag.
Another tip when I feel ill and my vertigo is getting worse, is too take more vitamin C. I take them as 1000mg tablets and take 4 of those when I am starting to feel worse. And then 2 more every 2 hours or every few hours, to help my immune system.
I do take valerian root, I prefer them in drops from A. Vogel. I will try some of the other suggestions I have read here on this pages like the ginko biloba.
I think there isn't one cure for all since our bodies are all different, but with some mixing and matching I hope we can all feel at least better to some degree.
Btw I think this website could also benefit from a vertigo page, even though that isn't standard motion sickness, because it is similar and has similar symptoms and causes and it would greatly benefit people to read about it and know about it. I have seen several people here in the comments on this page that I believe might have vertigo.
Feu on April 23, 2019:
Hi, I'm a 41 yr old female who doesn't take any hormones and has no sign of menopause yet. I do not generally get travel sick, though I have been known to develop a headache if I try and read when a passenger in a car, or spend too long below deck when sailing (in motion, not in dock). I do have sinus problems during the winter and mild tinnitus.
I first got the symptoms noticeably after a trip to Florida, we went out snorkelling and then flew home that afternoon. I had the symptoms for the next three weeks or so and put it down to doing both in the same day.
Then I went on a two week sailing trip in Thailand and got it for another three weeks when I got home. There was a two night break in the middle of the trip on land and I was practically begging to be let back on a boat!
Now I just sailed to France over the bank holiday weekend and it's come back this morning. :-( I'm expecting swaying, slight nausea, exhaustion and dizziness for the next week or so at least, so I don't know how long it would take for the various remedies being mentioned to take an effect, especially the herbal ones? Going to try the OKN strips first and see if it helps.
Thanks to everyone who has given their symptoms and remedies before, for helping me realise I'm not going mad, and that there may be ways to cure it. Although mine isn't chronic or persistent, I foresee a time when the three weeks could go on longer, so I might start to give these activities a wider berth - I was planning on going for my RYA yacht courses, but I think I need a different hobby!
Jr on May 7, 2019:
Re 2Trues post in Jan 2019... anyone know what kind of app he is speaking of regarding the light dots? Please?
John on July 18, 2019:
I don't do long travel very often. Whenever I do I get travel sick. However recently I travelled 300 miles to London and back in just 2 days. I took travel sick tablets. Had no travel sick. However, 2 days later I have a terrible pain in my right forehead, feel physically nausea, then wanted to get sick but couldn't. I don't feel as if I am travelling, or any swaying. Just the headache. Doctor said it was sinus. But I keep getting a chill feeling down my back, hot and sweaty flushes, then nausea, wanting to get sick. Feels like travel sickness!
After 6 yrs with MdDS (first two years, lots of misdiagnosis), I had what I call a happy accident. Have DDD in my back with another level going bad and was given gabapentin (neurontin) for the neurological pain. 300 mgs 1st prescribed, but I am small and medication sensitive. Asked if there was a lower dose and was given 100 mgs capsules. Pain slowly got better, but I also noticed my MdDS symptoms improving! I kept working my way up to 300 mgs and then was prescribed Gralise, a new extended version of gabapentin. My MdDS is markedly better, which even surprised my neurologist! I have a fantastic primary care doctor and it makes sense to me to use a drug targeting your neurological system, as this is a neuro disorder! I encourage anyone suffering from this to keep trying to get better answers. Antidepressants are not the cure all they are touted to be. There maybe a better answer for you!
Stargirl93 on October 1, 2020:
I developed this for a month after a 3 night boating holiday in Norfolk in the UK. I just turned 27 and I could not stop rocking and swaying 24 hours a day. I noticed this strange feeling the afternoon the same day as disembarking the boat. Sitting at my desk I was rocking and having a shower felt like the floor was moving; even sitting on the toilet I would feel the rocking and the floor moving up and down. My body and head felt like they were being pulled to one side with almost magnetic force. It was if I were walking on a trampoline accompanied by the constant brain fog. Symptoms gradually dissipated and were more or less completely gone in a month though I still suffer unsteadiness and imbalance on occasion. What helped me was walking, long walks - I had to force my body and brain to keep myself upright and moving forward - keeping my head up and looking at the horizon. I believe moving helps no matter how much you want to stay in bed. I will never get on a boat again. All the best to everyone suffering from this horrible syndrome. It is something I do not wish on anyone as it is debilitating to daily life.
Mike on November 22, 2020:
STRIPES APP QUESTION -- there seem to be conflicting directions here. Do you put the stripes going in the direction that you pull? Or the opposite direction? Also black or red? THANK YOU!
bindibam on June 16, 2021:
I have had this now for 3+ months. Came on spontaneously. I haven't been on a boat or cruise.
I have noticed that first thing in the morning, especially after a good sleep with 5mg of valium, I have an hour or two with minimal/no swaying. Gets progressively difficult as the day goes on. Walking outdoors at a decent clip is easier than walking around in my small apartment. Interesting. I will try the app and above mentioned techniques.
Thanks for all the info. And knowing I am not alone is especially helpful.
jules on December 5, 2022:
I suffer this every time I fly east or west, but never north or south? It lasts about 4-6 weeks and makes me feel as if I am constantly moving. MRI clear, ENT no issues so now waiting to go to a Balance Clinic. It gets worse and lasts longer, each time I travel. Epley manoeuvre doesn't work and neither do the BPPV exercises.
Cinnarizine has helped to reduce the symptoms but I take this for a week before I travel and continue until at least a week after I am back home.
Robert on January 19, 2023:
Hello,
This is all very interesting. I am having the same issues which is causing a lot of anxiety at work. I was in the Navy for 5 years and did one 5 month deployment on a ship. When I finally got off I got this syndrome which went away shortly after. This was around 15 years ago. I never got sea sick. However since then, everytime I hear a fan that sounds like the ship, or I am in a building with confined spaces, I start to rock and sway. But, the thing that brought it all back and it won't go away is elevators. My new job has me go in elevators frequently and it has been devestating. Went I get home it is still with me. It makes it tough to want to do anything. I am hoping it goes away eventually. PS. don't ride elevators.
Heather on March 6, 2023:
I have had MdDS twice. Both spontaneous. For 3 months in 2020. For 5 months in 2022. Both times went into remission. I tried many things so don't know the "cure", but both times I leaned into low doses of benzodiazepines, recommended by both my western and functional medicine doctor. No flying or long travel during condition and a few months after. Benzodiazepines are a vestibular suppressant. They don't stop the MDDS instantly. It still takes time. I also worked with my functional medicine doctor to address other issues potentially tied: methylation of hormones and neurotransmitters. I think optimism is a huge piece. Stop reading the negative stories of people who don't recover. Believe in your body's ability to heal. This was a huge part of it for me as well.
laceytreigh on April 28, 2024:
I have experienced MdDS several times now post cruising. I got back from a 12 night cruise where I contracted Covid - I did not suffer from MdDS post this cruise. 3 weeks later I went on a 3 night cruise. Post this cruise, I had MdDS for 3 weeks. I have no idea of the relevance of this information, as interesting as it is (to me anyway). My GP wasn't interested.
A friend told me to take Black Cohosh, Valerian Root and Gingko Biloba and within a week of taking them, I was normal. The stuff worked. I have 42 animals, a full time job and 92 acres to mow and I was scared to death to get on my Commercial mower for fear I'd fall off into a ravine.
Those three herbs were a Godsend and when I saw the Medical Mysteries show on TV I knew I had to tell someone what worked for me. It only took a few days, and once the MdDS was gone it was gone. I haven't had to take the herbs again since.
I'm sharing this so that others can at least try it and see if it helps. To my knowledge there are no side effects to any of these herbs and I just got well. I thank God for the gift of balance. It's funny what you can become grateful for.
How much of each of the Herbs did you take?
Lucy @ Motion-Sickness-Guru.com replies:
Hi K, I contacted Margo to ask similar questions and this is what she replied:
My Disembarkment Syndrome is back, only slightly, but I'm laying in bed and feeling the room start to spin while I'm not doing anything, just lying on my back in bed, and that's the first sign of it. If I tilt my head back it feels like when I was young and drank too much and the room spins. It's not yet as bad as it was before, but I'm not going to wait that long and am starting with the remedy now.
I take them just each just like the bottle recommends: Valerian root, three capsules 30 minutes before bedtime. My thoughts about this is, Valerian Root helps you sleep and if you achieve REM sleep your body heals in REM and the Valerian helps you achieve REM sleep.
Ginkgo Biloba 120mg once a day. Ginkgo Biloba increases blood flow, that's why it helps people whose brains are aging. Anytime more oxygenated blood cells can feed and regenerate cells it heals them. If REM sleep is achieved, then increased blood flow, it increases healing while you're basically shut down, like turning off a cell phone and putting it on a battery charger. Black Cohosh one pill three times a day. I'm not sure what it does, but it got me normal with no side effects.
I did the research on everything before taking it and found little info on the Black Cohosh, so and was cautious with it to assure I wouldn't have an allergic reaction.
I heartily recommend anyone considering any of these herbs try each, one at a time and make themselves aware that they don't have an allergic reaction to any of them and if they do they'll know which one they are reacting to. I slept well, I healed and now when I can feel it coming on, I can just take it again for about a week. I just quit taking it when my symptoms subsided. Not sure why it's back, but I feel confident that it will solve the issue again. I don't want to be falling over in the barn lot anymore anyway.
I hope this helps. Margo
I think I have determined what, at least my, Disembarkment Syndrome is being caused by, by concentrating on when it actually appears for me. I have 102 acres and 60 of them must be mowed to keep grass for my horses. I pass the time on my mower by downloading books on tape and use earbuds to listen to them for sometimes 6 hours at a time on my IPod. When I insert the earbuds, they put pressure on the small bones inside my ears. Our inner ear is where we derive balance control. Anyone who's had an inner ear infection has stumbled around when they've had one, due to swelling, causing misalignment. I think, at least some of us, are experiencing our issues by pushing the earbuds in, which pressures the tiny bones out of their proper alignment, thereby causing this fine balance within the ear to be pushed out of level. I suggest simply, ask anyone who currently uses earbuds to stop their use completely for a month and see if their body heals and rights itself and the small bones inside the ear don't shift back to level again. I think my personal remedy sped up my ear's recovery, as my balance is almost normal again. I'd encourage those, with this condition, who use earbuds, to stop completely and replace them with common headphones again, to keep from applying undo pressure onto these delicate bones and causing their misalignment and the malfunction of our inner ear's delicate function.
I'd love to know how many ailing people use earbuds. It may be like anything else, some people have a susceptibility with just one hour's use or it could take 6 hours a day for 6 days for another's inner ears to malfunction. Omitting earbuds for a month might give us all a clue if these are too dangerous to be used, and it could cause the manufacturer to modify them, to make them more suited to the delicacy of these bones within our inner ear.
I hope it's as simple as that. Should this be the culprit, I'd love for someone to get the word out, as there are lots of folks using earbuds and if this is the problem, some may have already done too much damage and will be unable to recover and heal their inner ear bones back to their normal position. That would be sad, since this illness effects you, even while you are asleep.
Have a blessed weekend...
Margo
So, my family dr. properly diagnosed me and there it sat. I had difficulty "really" concentrating on anything because of the nagging sensation and it seemed to get worse when I was tired.
SO, for 2+ years I walked around in this state. Couldn't trust myself on any type of ladder either. Now, I am going to tell you what age I was when all this happened as it is relevant later. I was about 47 yrs old. I also need to disclose some other SEEMINGLY irrelevant data. I've been to TWO concerts in my life. One, when I was about 17, at which point I decided I didn't LIKE going to concerts and then, the other I attended when I was 49yrs old. WHY would a 49 yr old, who doesn't like concerts, BE at a rock concert at the age of 49 you ask? Well, when he has a 16yr old daughter who he won't let go to a concert unsupervised, that's why.
The group, Shinedown (not relevant other than knowing it wasn't a classsic symphony type of cure). The seating, wasn't "seating". It was standing (MAY have been relevant in making my brain continue to have to balance myself). I believe the standing is affectionately referred to as a "mosh pit". Hope you don't bruise easily. Anyway, 2 hours later, we walked out of this concert and my ears were RINGING LOUDLY. So loudly, that when my daughter spoke to me it was like how, in the movies, what a soldier would hear from his partner right after a bomb would go off and all he would hear is the SOUND of a voice but not the actual words they were saying.
The next morning, I woke up and the rocking sensation was simply GONE along with the loud ringing I went to bed with. The realization of WHY things felt different didn't hit me until I had been up for a while.
I put two and two together and realized what had happened.
I immediately went to all the websites I had uncovered when looking for a cure to get the word out and posted my cure experience. I wanted to help other people but not a single response from anyone or site administrators. Not even to ask any follow up questions. So much for ".org" sites. Maybe there's more money in being part of the problem than in the cure. Over the years, I came across multiple "band aid" projects like "vibration pads", for example. All of them seemed to deal with the SYMPTOMS of MdDS but NOT the cause.
What I experienced was a "sensory reset" - plain and simple, and it addressed the CAUSE via sensory overload and recalibration. I can't be cured twice, so I'm left to wonder if something as simple as loud headsets for 2 hours (same as concert time) could do the same thing. But my conclusion is that it needs to be something loud and for a significant duration of time that the brain tries to again, learn to compensate for it JUST as it compensated to create the problem in the first place.
So, I went in a cruise on January 6... and now I have it back again. I'm so worried, especially because the sites say that the subsequent times last longer. So I assure you I will try your formula, because I know what it's like to be sick for years. Willing to do anything to cure it.
I am 74 and when I was in high school I belonged to Mariner Scouts and we would go out on a boat and when I would get back on land a few hours later, walking on land I was so unsteady. It never seemed to go away. At times it was worse - like I was rocking, and waves would be worse at times.
I keep going because I thought sometime odd was going on. Finally I told my doctor. I had lots of hearing tests, rotating tests, MRI, just about everthing you could think of. All were normal. Finally she sent me to a neurolgist and he knew what was wrong, but nothing much can be done about it, live with it!!
Riding in a car does not help me, it is worse. I have bad days and worse days. It is nice to hear I am not alone. My mdds has lasted for years and years. Just was at my doctor and she knows very little about it, but says I will have it the rest of my life. I just wanted to know if anyone had migrane headaches? I also had them since I was 6 yrs old.
I hope some doctor would look into a cure. Please let me know if anyone hears any news on a cure.
Blessings to each one of you. Nan
Well, eleven years is a long time and I forgot about it. I just returned from my second cruise in my lifetime and IT'S BACK!!! Aye Yai Yai! I'm so mad at myself. My brain is floating back and forth in my head, I feel drawn to the ground, am fatigued, can't get much done... etc. etc. etc.
How in the world do you absolutely know for sure if you have this - IF you have NOT been on any travel, plane, boat-- ?
Anyway, back to the mosh pit theory: though I am 48 years old, I still like the type of music that inspires mosh pits at concerts and have been in mosh pits off and on for over 25 years. If DaveK's cure was related to the concert (and not just a coincidence), then I think the most likely explanation is the type of physical activity that occurs in a mosh pit. It sounds like DaveK was not actually slam dancing. It sounds more like he was standing in a crowd where mosh pits were probably spontaneously forming and dissolving. The effect on a passive participant would be the need to balance against people pushing, sometime aggressively, from different directions and quite often unpredictably. I can image that action for two hours could prompt the balance circuitry in the brain to "reset" as DaveK described it. The loud music may have helped, but I doubt loud music alone would have any effect.
I have had all of the symptoms of Disembarkment Syndrome for over a year now including not being able to drive and or ride a bike without experiencing the symptoms very bad. I get my worse symptoms when I walk and am spacey and kind of floating when I am still, sitting or laying down. I have had all of the usual tests that have all come back normal. I did not take a cruise or plane flight when all of this came on!!?? Is it possible to have all the symptoms of this syndrome without taking a cruise or flight????
I still had the symptoms of walking on a sponge plus an up-and-down feeling while sitting or lying down in March. In March I went on a flight to Miami from the UK then a 11 night cruise (rough waters) plus a turbulent 8 hour flight back home. I thought I would be really suffering when I got back, but all the symptoms have completely disappeared. So now I am wondering if going on a turbulent flight or cruise again actually resets the brain. No symptoms at all now. It's really strange. Thought I would share it with you.
I've suffered with this for many many years and hate it. The awful tiredness, falling, banging myself, and the moving of everything around.
Dee, the difference is that with vertigo etc. the room spins, and with MdDS it feels like the floor is coming up to meet you, e.g. like trying to walk on a turbulent airplane.
I've had many episodes and this illness is really miserable. One thing that has helped me is to use eardrops/oil to clean out my ears the week before a long journey. I actually went on a train journey last week and didn't have to have any time off work. I don't know if my ears were filled with wax or it's in my mind but it's really helped loads.
My doctor referred me to an ENT this time and he diagnosed me with MdDS and basically said there was nothing he could do. I was a mess. Tired, depressed, nauseous and no support from anyone because it's "all in your head". The symptoms finally went away and I stayed away from boats!
A year ago I went on a boat but loaded up on Dramamine first and the symptoms didn't come back. BUT then a few weeks ago I slept overnight on a friend's boat (I didn't THINK that in dock would be as bad) and now the symptoms are back full force. No one really understands or has any sympathy and I can see myself falling apart again. I was thinking maybe this group had some advice?
If this does not go away then I will cancel it. I have never had motion sickness of any kind and have been around the water all of my life. I am hoping this is temporary. Good luck to everyone. I will repost if and when this goes away.
To prevent: I wore a magnetic bracelet on each wrist, I took a ginger capsule each day starting 2 weeks before the cruise and until 3 days after, exercised vigorously for 40 minutes or so in the gym almost every day of the cruise and if I started feeling headaches, like my head was trying to adapt to the ship, I moved around or shook/tapped my legs. I did my best to try not to adapt to the ship's motion and looked at the horizon when we were near the coast, as much as I could.
The result? I was fine. On the second day post cruise I felt a mild, pleasant rocking for a few hours but nothing like the 2 weeks of Hell I went through last time. I hope my suggestions work for others.
Has anyone here tried the Epley Manoeuvre to help??
Is this what the Mount Sinai hospital treatment is? I read the article but don't understand what / how to perform the Mt Sinai treatment...
Meclizine did nothing, and my GP gave me a referral to an ENT. The morning of my ENT appointment, now four weeks from our return from the cruise, I had a severe vertigo attack. I couldn't move without the whole room spinning and tipping. I had nausea and cold sweats. Somehow I made it to the bed. It got worse quickly, I couldn't even move my eyes without the symptoms raging. I felt like I had been poisoned. My husband called the paramedics and after they asked a lot of questions and took a lot of readings they assisted me in an agonizing move from bed to wheelchair to gurney to truck. Then an equally agonizing ride to the emergency room. It wasn't the bumps that bothered me so much as the swaying turns. At the hospital, they gave me meclizine and valium, and within an hour or so I was better. Went home and woke up the next morning and it was all gone. It hasn't returned since. Finally made it to the ENT and he told me what it was.
Before I got on the boat to come back the following day, I could still feel that rocking motion while standing. It's been 3 days that I've been back and I still feel like I'm on that boat. I'm going to see a doctor today because I think I have some sort of ear infection and from what I understand, your balance comes from your inner ear. My ears get itchy at times and my earwax has this really foul smell. When I sit, my body keeps swaying from side to side. I can't imagine myself living like this for years and hope it goes away soon. I have been on a few 3-4 night cruises in my life and remember having the same problem that lasted 4-7 days.
I find my symptoms are much worse when I am at work. I work on a computer with fluorescent lighting. Any insight on if this could be what I have is appreciated! I just want answers! According to the ENT he does not think it is inner ear related and my MRI was perfect. Thanks!
So here I am 6 years later after a 5 night cruise, swaying... but functioning... sitting here at my desk swaying... but this isn't nearly as bad so I am hoping and praying that it will subside. From what I read, the last time I was at a level 10... this time I am 3-4.
Now, of course, we're trying to find ways to cure her. In the States they're further than here, at least they're working on a treatment (Mt Sinai). I read something about Australia too. Of course, for us it might not be smart to get on a plane for ten hours or more ;-)
So all we can do is try self-medicating and find out how many people in The Netherlands have this. Because I'm sure the number is much bigger, as so many docters here have never heard of this and many people with the symptoms are just left to their own devices.
Good to read about other cases. We'll check this blog regularly in our search for a remedy.
Thank you so much to both of you for passing along this info. I got off a cruise 7 weeks ago and just can't imagine this going on and on. Good luck to everyone affected by MdDS. I will post with updates as I improve!!!
I feel SO much better! I did the Fakuda Step Test and was truly surprised to be over 45degrees different. I bought the APP, did the exercise with some questionable positive results. I repeated it maybe an hour later. Within 3 hours I feel the best I have felt in 11 days! No nausea, no dizziness, my brain feels clear and I can concentrate. I repeated the Fakuda and had ZERO turning. I was sceptical, but am now a true believer. THANK YOU ALL for all of your input!
Recently, we have been experimenting with the OKN stripes app on our TV (assuming the bigger the picture the better). The marching test suggested Left, so we have done stripes to the Right. 5 second head tilt for a complete cycle (thought to be the average?), left to right. We have now tried both directions of stripes, as there is no clear indication of improvement or deterioration? 3 x 5 min sessions per day x 5 days one way. After reading the Mount Sinai paper (continuously), it seems the two readings that one hopes to understand about a patient is the perceived direction that one feels and the frequency of bobbing or swaying/rocking. As far as movement goes (swaying or bobbing or rocking) I'm not too sure of how to calculate. I can however tell what I have observed. Firstly, my partner constantly nods her head. Sometimes rapidly. Around 1 sec per nod. if she doesn't the disorientation gets worse. Secondly, when standing still eyes closed her movement back and forward (trying to balance) is often long and elongated (great displacement). As long as times go maybe 5 - 12 seconds for a complete cycle, sometimes longer. So, direction? Frequency? We will of course keep trying this Stripes idea, as it appears to hold some weight. If anyone has had similar observations or a better understanding of the science and interpretation we would be all ears.
Thanks. Regards Rob
I have had MDDS since 2007. Originally started around the time I had an allergic reaction to a laundry water softener, and having to take 150mg of antihistamine (I also have urticaria). It has become less of a problem over the years, I don't hug walls just to walk about now, I'm not constantly tired and I can use knives without fear of suddenly stabbing myself in the face (or something weird). I used to travel by air a lot but not in 2006/7 so unconnected. I hadn't been on a boat in over a decade so not related to that. I don't do concerts. I can drive no worries, but have issues being a passenger. I have issues walking about (too much information or movement, I hate food shopping or closely packed clothes shops). I have been to see 2 ENT specialists both treated me like a hypochondriac. I diagnosed myself after being told there was nothing wrong with me and the 3rd time I saw one of the specialists he just agreed with me and then quoted verbatim the first website he'd come across the night before. I've not been back to see that waste of air.
Nothing really makes it better, but I find doing lots of sports helps to some degree, it makes it bearable and sometimes ignorable. But sport can also make it worse, colds make it worse, TV, flashing lights (including through trees, I'm very light sensitive and often have to wear shades inside and look like a moron), being thirsty, slightly hungry (I eat every 2 hours to avoid this!), too hot (anything over 18C), tired, or overdone the exercise (hiits, or just too many squats), stressed, having a cold, can all make it worse.
I find I get more colds than I used to and they last longer (weeks rather than a week at most). The cures that most doctors (or anyone who says they've had labyrinthitis I did this and it cured it have you tried it? ugh drives me nuts) tell me to try make me worse, no matter how long/often I try it for. I have read that it could be a form of migraine and that menstruation could be one cause (I do get period migraines). However, I started getting these years after the MDDS appeared.
I'm wondering if there is no one cure because there is no one cause. As with most 'cures', what works for one person won't work for someone else because it was triggered by one thing that did particular damage to that one person, and epigenetics making us all unique means that even if another person had the exact same circumstances causing MDDs the same cure wouldn't work. Trial and error I think is the best way, don't just listen to the doctors without researching it yourself, you are the expert here not them, it's your body, they only hear your description of what you are feeling.
Keeping active helped too. I am as foggy as before and the panic attacks have stopped since my body has adapted to its balance confusion. I was also diagnosed with a problem with my left eye. Prism glasses help with the annoying rich visual patterned environments like the mall.
I will keep everyone posted if I go to see Dr. Dai. Also consider Dr. Staab at the Mayo Clinic in Minnesota. Blessings to all!!
Anecdotal evidence would indicate this has to be hormone related, especially for women. We're mostly middle-aged and for those who aren't, being pregnant seems to put it in remission. Here's a question for the middle-aged women: did you have hot flashes BEFORE the cruise and did you have hot flashes AFTER?
I find I don't get near as many as I did BEFORE the cruise. Maybe this crap replaces hot flashes and, if so, maybe we need treatment for hot flashes as our own experiment. As we know, being a woman with a crazy syndrome will take years to be addressed. It's a man's world.
So... Off to the doctor next week (GP)... Wish me luck!
Anyway, I didn't really notice the MdDS symptoms until returning home to NYC from the trip. Part of that is because I had a drink in my hand for most of the vacation, and as many of us know, alcohol can greatly reduce or dull the symptoms. (Too bad it's not a cure!)
I thought I just had "land legs" or "sea legs" or whatever, and was not too concerned until a couple of days went by and the symptoms did not go away. I feel the ground surging under my feet, or the feeling of standing in a small boat on water. If I close my eyes my balance goes pretty fast. It is a weaving or pulsing or someone said "magnetic" pulling feeling, and it doesn't really have a direction, it seems random and all over the place. Tilting my head down is bad, reaching for items on a low shelf, or tying my shoes. I was calling it "vertigo", because I had never heard of Mal de Debarquement Syndrome (MdDS).
So, about 2 weeks after the trip I did some internet research and came across Benign Paroxysmal Positional Vertigo (BPPV). This type of vertigo apparently can come about when some crystals come loose in part of your inner ear, and can be fixed by a simple head roll (the Epley Maneuver) performed by a doctor, chiropractor, or even a physical therapist. So I went to a chiropractor who knew all about the Dix-Hallpike test, which is used to identify BPPV by observing latency of eye movement (nystagmus) following head roll, and he also had performed the Epley maneuver on other patients with success. Dix-Hallpike was negative, but we did the Epley maneuver on two separate occasions because it seemed harmless enough. Nothing, no effect.
Oh, I forgot to mention that I have played drums most of my life (not since getting MdDS) and I have had tinnitus (persistent ringing in the ears) for over 10 years.
So, my next step was to go to a neurology clinic. The first Neurotologist did the Dix-Hallpike test and ruled out BPPV. To be continued... [see below]
I applied to the clinic, filling out a lengthy questionnaire. I was accepted in mid December, and was able to go for the 5 day treatment in mid-January (5 months ago). You can read elsewhere about the "spinning room" (google Timothy Hain MdDS - he has a clinic in Chicago) and the various tests that they do before trying out different directions, speeds and durations of visual stimuli, mostly black and white stripes on the wall. Bottom line: watching the stripes seemed to have an effect, sometimes positive, sometimes negative, depending on direction, speed, etc., but we never seemed to nail onto the right pattern or frequency. But I think they are onto something for sure. I am going to go back this summer and try again.
Previously, last year, I had suffered a severed balance disordered for about 5 months back in May 2015. It began once I returned home from a from a 4 day cruise. I sought help from my primary care, VA doctor, ENT doctor and one other MD. They all just shrugged their shoulders, said that they never heard of the problems I was experiencing and ignored my complaints. I was practically on my own with this. I also saw my chiropractor, at least he tried. But I continued swaying side to side and bobbing back and forth. Other problems were that I could not watch TV or looked at a computer screen for more than 5 minutes. Reading was even worse. Everything in front of me would start swaying or bobbing, it was horrible. The only remedy that would help, as crazy as it may sound - was to drive my car! For months I had researched my symptoms and everything I read pointed to MdDS. After about five months of suffering with these nauseating symptoms it finally subsided. Was it due to the chiropractor helping me? Maybe, but I cannot say for sure. Everything I had read told me to stay away from boats of any kind, flying, elevators, escalators or even going to the beach. Well as you can see, I didn't listen. From now on before I go on vacation I will pre-set an appointment with Dr. Tang for when I return from vacationing near water, flying or anything that starts my world swaying or bobbing.
I am so glad this helped me. Just wanted to share my story. Dr. Tang made no promises when I first met him. He is just a very humble doctor from China who was able to help me.
I have a question for those who have had remission after a few weeks or months - did it go away suddenly? Like you woke up one morning and bam, it's gone? Or was it a gradual fading of the symptoms?
I'm wondering at this stage what the best way to handle this will be, since my doctors didn't even know what it was and just started Googling the same stuff I'd already looked at. Shall I try and ask for some medication or just ride it out?
So I just did this intuitively, right no good, left yes. And I can feel all sorts of realignment going on in my ears and sinuses wow! Crazy!
Things I have learned: I feel like some days are worse than others. I have this feeling of bobbing up and down all the time. Some days it feels like I am on a high wave and some days a little wave but still there. When I walk it is as if I am on a trampoline and trying to keep my balance. I keep going though. I decided not to just sit this out but try to use humor when I can. I tell everyone that who else can take a free boat ride all day and some of the night? Keep smiling, know you are not alone and never ever give up searching for what can help you. Like others I have been to my doctor, chiropractor, ENT specialist and now I have just been sent to my town's Physical Therapy department. My PT checked me for Bvvp but I do not have that. He has heard of MdDs in his classes and told me he is going to try to learn along the way on what works best to get this stopped. I have copied and pasted in a long note - things that we are going to try. Prayers: that something helps but if not, I will not let this stop my life. I will be stronger because of this. At least I am not in terrible pain except from some headaches and not sick to the point I live in my bathroom either. Keep your faith. I will let you know if we find something to stop this also:)
I was fine until 23 February this year, when Storm Doris hit the UK. I was in work and my building was shaking quite a bit. In the afternoon I started feeling dizzy, and I'm still feeling it over six weeks later. It affected me much worse this time and I've been terrified that this time it's here to stay. I'm feeling better mentally now but there is no difference in symptoms really. It seems a bit worse than last time. I have a constant kind of lightheaded feeling and when I walk my legs feel very heavy and kind of feels like they're rocking.
It doesn't stop me from doing anything but it is very annoying and I'm trying to decide whether to just give a bit longer (as I believe relapses tend to last longer than the initial episode), or try to get a referral and a diagnosis. I know that there is a man in Sheffield called Chris Bowes who trained with Dr Dai in Mount Sinai and offers the same treatment, so I may end up giving that a go if it doesn't go away. This time I've tried Stemetil and Serc (not for very long though) and they made no difference. I'm also on Citalopram 20mg as I was very anxious and I'm taking vitamin D/multivitamins. I may try the valerian root/ginkgo biloba/black cohosh suggestion or see if I can be put on a different antidepressant. This just needs to go!
Twenty years later, almost every time I go windsurfing, I experience something similar: when OFF the water, for a day or so, everything feels like it's gently rocking, no nausea though. Something I learned to live with, I always assumed it's what sailors meant by "getting your land legs back."
My husband informs me that I now look like I might be returning to "the land of the living" & am now not paper sheet white. I still have a bit of an internal upward swell motion, fuggy head & pressure around my eye sockets but feel so much improved I thought I should share this with you & offer some hope for those who felt as awful as I have in the last 48 hours. Today, I'm aiming for some fresh air & hopefully a bit more solid food !! It could be that my symptoms may have naturally alleviated during the time passed between now & Disembarkation, but as ill as I felt, I could not run the risk & was willing to try all suggestions to make progress. So, thanks again for the advice & support, without which I would have been clueless & possibly now desperate!!!
Thank the Lord for Holland & Barrett too in the UK (plus, the penny sale!!). Good luck all xxx
- find a full length or half-body length mirror. You need to see your head, arms and upper torso.
- stretch your arms out in front of you like a zombie.
- tilt your head to one side about 20 degrees.
- while watching your own eyes/face, keeping your head tilted, march on the spot for a minute or two. You may need to experiment with marching speed to optimise the effect - I found marching slightly faster than my pseudo-swaying gave the best results.
- stop and repeat the marching in the mirror with head tilted 20 degrees to the other side.
You may need to repeat this a couple of times, but it really reduced my swaying symptoms for several hours and it becomes less and less noticeable with repeated sessions every few hours.
Hope someone else finds this helpful!
Since reading the differing options, I have tried quite successfully to combat the swaying and dizziness. Try standing on one foot and stare hard at a distance immovable object. Keep thinking of hitting the re-set button for your balance and whenever you are walking and feel the floor moving, lift your eyes and focus on something farther away that is stationary. It is helping, along with not using q-tips for the next while. Inner ear problems has always been a cause of balance issues, so it makes sense to leave the inner ear alone until things "right" themselves.
I am finding light exercise is also helpful, but going a lot slower as the ground keeps moving! I have only started to drive again after two weeks, and have to remind myself to move my head very slowly when shoulder checking. Any quick movement brings the dizziness right back. Hang in there folks and keep finding that stationary object to focus on. It is helping a lot!
Does research suggest exercise such as running helps or hinders recovery? And what are others' experiences?
Thanks in anticipation.
Vertigo is similar in symptoms to travel sickness or reverse-seasickness, only there is usually no relief when in a car or a boat. Vertigo can be mild or severe, be continuous or you can have episodes. It can be that you have an episode for 30 minutes or a few hours but also a few days or weeks continuously, though even during an episode it doesn't be the same level of bad through the whole episode.
I have vertigo myself and I am now 30 years old and female. My vertigo is most likely caused by an hereditary inner-ear problem (my mother has it as well). There is a balance organ in both your ears which is also part of the problem with any kind of motion sickness. My inner-ear problem causes hearing problems and mild tinnitus and also balance issues, dizzyness and nausea, in other words vertigo. Sometimes I see the world spin a bit and if I feel like that I often lose my balance. I will look like I am drunk when walking or moving and need to watch out to not get hurt. It can also be that I don't necessarily see the world spin but that as soon as I move my body or even my head that I get really dizzy and feel really weird, etc. It is a degree less bad because it is less bad when I sit still and don't move my head. There is also a degree below that which is what I suffer from most often. I won't see the world spin and will be less dizzy but my digestive system seems to think that I a'm in a constant roller coaster or on a ship on rocky water. I can be dizzy with this or very little. It feels so weird when this happens and it makes me feel ill, though not as weird and ill as other worse stages.
There are days when I barely have any vertigo or maybe only later in the day when I am tired. I also have chronic fatigue syndrome so I tire easily and have a weak immune system. I know that my vertigo flares up when I am tired, exhausted, have pushed myself too hard, when I am stressed or have been stressed, when I get a cold or virus, etc. It happens or gets worse when you are not a 100%, when your immune system gets weaker or when you haven't been taking good care of yourself.
It can also worsen when you have been hearing sounds that are too loud for your ears, at least in my case, though that can depend on what is wrong with your ears and doesn't have to be true for everyone with vertigo. So be careful with in-ear headphones, loud music in general and construction sounds and things like concerts. It is better to use on-ear headphones. Also when doing construction, for example while drilling, wear ear protection. At a concert wear protective earbuds.
Know that the tubes of eustachius (if that is the correct spelling) can also wreak havoc for vertigo sufferers. There is fluid in those tubes and that is neccessary and functional. If the consistency of that fluid changes temporarily then vertigo can get worse. This can happen when you get too little fluids or too little or too much salt. This often happens during hot weather or after (intense) exercise but it can also happen for some people simply because they ate a salty snack like potato chips or because they drank less water than usual.
Vertigo can be tricky and also has causes in the ear but can probably also be a neurological problem or a problem with both a neurological and an ear cause.
There are often no easy cures but being healthy, happy and balanced does help. Eat and drink right, sleep well, manage stress, try natural remedies.
Myself I have been using Sea-Bands for years to combat the dizzyness and nausea and they work really well 😁! They won't cure me but they make it livable most days. I also use them for motion sickness and when I have a stomach bug. They can be used for any kind of dizziness and nausea. Because I have small wrists I prefer to use the wristbamds for children because they fit me more snugly and then they work better.
The sea bands can we worn when needed for short times but also for long times like days or weeks even. You can wear them when swimming or during a bath or shower. If I wear them when showering I take them off for a moment to wash them well before putting them back on.
You can wash them by hand like the manufacturer suggests but I have also washed in the washing machine on 30, 40 or 60 degrees celsius without problem. Just be sure to wash them in a wash bag.
Another tip when I feel ill and my vertigo is getting worse, is too take more vitamin C. I take them as 1000mg tablets and take 4 of those when I am starting to feel worse. And then 2 more every 2 hours or every few hours, to help my immune system.
I do take valerian root, I prefer them in drops from A. Vogel. I will try some of the other suggestions I have read here on this pages like the ginko biloba.
I think there isn't one cure for all since our bodies are all different, but with some mixing and matching I hope we can all feel at least better to some degree.
Btw I think this website could also benefit from a vertigo page, even though that isn't standard motion sickness, because it is similar and has similar symptoms and causes and it would greatly benefit people to read about it and know about it. I have seen several people here in the comments on this page that I believe might have vertigo.
I first got the symptoms noticeably after a trip to Florida, we went out snorkelling and then flew home that afternoon. I had the symptoms for the next three weeks or so and put it down to doing both in the same day.
Then I went on a two week sailing trip in Thailand and got it for another three weeks when I got home. There was a two night break in the middle of the trip on land and I was practically begging to be let back on a boat!
Now I just sailed to France over the bank holiday weekend and it's come back this morning. :-( I'm expecting swaying, slight nausea, exhaustion and dizziness for the next week or so at least, so I don't know how long it would take for the various remedies being mentioned to take an effect, especially the herbal ones? Going to try the OKN strips first and see if it helps.
Thanks to everyone who has given their symptoms and remedies before, for helping me realise I'm not going mad, and that there may be ways to cure it. Although mine isn't chronic or persistent, I foresee a time when the three weeks could go on longer, so I might start to give these activities a wider berth - I was planning on going for my RYA yacht courses, but I think I need a different hobby!
Very odd.
I have noticed that first thing in the morning, especially after a good sleep with 5mg of valium, I have an hour or two with minimal/no swaying. Gets progressively difficult as the day goes on. Walking outdoors at a decent clip is easier than walking around in my small apartment. Interesting. I will try the app and above mentioned techniques.
Thanks for all the info. And knowing I am not alone is especially helpful.
Cinnarizine has helped to reduce the symptoms but I take this for a week before I travel and continue until at least a week after I am back home.
This is all very interesting. I am having the same issues which is causing a lot of anxiety at work. I was in the Navy for 5 years and did one 5 month deployment on a ship. When I finally got off I got this syndrome which went away shortly after. This was around 15 years ago. I never got sea sick. However since then, everytime I hear a fan that sounds like the ship, or I am in a building with confined spaces, I start to rock and sway. But, the thing that brought it all back and it won't go away is elevators. My new job has me go in elevators frequently and it has been devestating. Went I get home it is still with me. It makes it tough to want to do anything. I am hoping it goes away eventually. PS. don't ride elevators.