Who I am?
Female, 55, five years post menopause. Non-smoker, very light alcohol drinker, no recreational drug use
History of present illness:
- developed constant rocking motion in early December 2015 after long haul plane flight with more than usual levels of turbulence
- noted this immediately on disembarkation, considered it to be a form of "land-sickness" that would pass, but symptoms continued
- also experienced fatigue, left sided sinusitis with severe headache and left-sided trigeminal neuralgia within a week of return from trip which resolved after around ten days
- symptoms were initially annoying but not disabling, 3-4 on symptoms severity scale, 5-6 at worst
- just under three months after return from trip experienced a severe exacerbation of symptoms after a one hour car journey as passenger, symptoms became severe and disabling making me cry with frustration at times. Constantly 8-9 on symptom severity scale. Also experienced left sided "pins and needles" sensation in left chin, lower lip and forehead, with normal touch sensation. Went to GP who prescribed Stemetil 5mg three times daily for a month with no effect noted. Referred for brain MRI and neurology consult
- severity of symptoms began to improve somewhat around six to seven weeks after exacerbation, moderate rather than severe at time of neurology assessment
- assessed by neurologist who suggested I had MdDS (still awaiting letter confirming this with his follow-up recommendations)
- vary from 4-5 on the MdDS Foundation symptom severity score to 8-9
- almost constant sensation of physical movement, either up and down or side to side. No sensation of spinning at any time
- balance issues, falling backwards, forwards, or to the side, at least twenty times a day
- unable to walk safely unless I have something to hold onto, need to use a wheeled walker to walk outdoors
- seem better able to process information re moverment and position through touching with my hands compared to signals from ears, eyes, or feet
- frontal headaches of variable severity, worse on left side
- difficult concentrating
- memory issues
- difficulty finding the right words, "losing" words
- tinnitus (not constant)
- sometimes visual disturbance, difficulty with focus
- fatigue and reduced exercise tolerance
- sleep difficulty due to constant sensation of movement
- clumsiness, drop things, walk into things, difficulty judging distance
- unable to multi-task
Symptoms worsened by:
- standing still
- after stopping other forms of movement eg car trip or walking
- taking a bath or shower makes movement sensation almost intolerable
- flickering lights
- a lot of movement around me, eg being in a crowd or in a busy supermarket
Symptoms improved by:
- movement, eg car or bus trip, walking using my walker (but worsened after!)
Past medical history:
- overweight, post menopausal, generally well
- irritable bowel syndrome, well controlled by dietary management
- unexplained recurrent miscarriages (seven pregnancy losses from 6-18 weeks gestation, no live births)
- episode of similar symptoms after a long haul flight in 2010 (also had sinusitis at time) but no movement sensation. Resolved after about a month
- prolonged movement sensation after boat or car travel as a teen, eg took a day or two longer than other family members to lose movement sensation after weekend family boat trips (most weekends for around five years)
- discovered by my GP on consultation re balance issues to be mildly anaemic (Hb 11.5), borderline hypertensive, and to have a new heart murmur. Home monitoring BP, awaiting cardiac investigations for murmur
- iron and B12 supplements
- valerian to help sleep
Current treatment for MdDS:
over 4 years agoSix and a half years after a sailing trip I rock and sway. Life is a constant struggle.
Luckily I found a support group associated with the MdDS Balance Disorder Foundation where there are wonderful people willing to talk about their condition and offer hope to each other. They talk about the current research a lot!
about 5 years agoDuring the long weekend of Sept 1, 2010 we went for our 3rd annual houseboat trip on the Suswap Lake BC. We were gone for 5 days. The weather was great and the lake flat calm. But when I got home I did not feel well at all. I just could not get my land legs back which was odd for me as I grew up boating and have never been sea sick or bothered by long stays on the water. I was treated for flu. Which did not help. Doctors focused mostly on the headaches - brain fog and generally feeling unwell. I just could not get anyone to hear me regarding the rocking and unsteady feeling ground under my feet. Until I fell in March 2011 and dislocated and fractured my left shoulder. Many tests later (MRI, CT scan, Lumbar Puncture - countless blood tests) and they could still find nothing. At this point - doctors were treating me like I was having a burn out! Very frustrating because if was burned out from the MdDS and not the other way around. It was my cousin Nicole who diagnosed me as she too has MdDS. I found a specialist who could officially diagnose me. It was a relief to get the diagnosis. I now had a name for what I had. Getting treatment was another adventure (and not the fun kind). Drugs (3 different kinds: Topamax, Gabapentin and Clonazepam) which left me doped up and depressed. Vestibular therapy that increased symptoms. Out of sheer frustration and out of a deep need to have a quality of life that was worth getting up in the morning for - I got off the drugs (Clonazepam by then) - lost 35 lbs by switching to a clean diet and I quit smoking. I still have very bad days. But the good days are really good. I have found different things to feel fulfilled (cooking - baking and photography). I have the most incredible supportive husband, family and friend. Life is good - in spite of the rock.
about 5 years agoI stepped off a cruise ship after a week long adventure with my wife into the Bahamas at the end of January, 2011. It was both of our first time on a cruise...and, though I had been on water (kayaking, ferry, sailing, canoe, etc) countless times prior, something felt "swimmy" in my head within minutes of the ship taking off. And then fairly quickly, I acclimated to the motion, and only noticed feeling strange during the shore excursions. I had felt this for a number of hours at a time previously, following long train trips...a sort of lack of balance, and a sensation that everything around me (but particularly the ground beneath my feet) was moving...not spinning, but just moving. I attributed this feeling (during the shore excursions) to just needing to get my land legs back. And then, when we debarked from the ship after a week, I had the feeling still...but it was extreme. I couldn't lean forward without losing my balance, I felt very strange when I walked (like I was walking on a trampoline or a mattress), I felt like I was fighting with gravity when I laid down in the bed, or when I tried to roll over, sit up, stand up...and I felt more tired than I had ever felt in my entire life. For a couple days, I assumed that I was just working on getting my land legs back. And then, when it didn't go away within a couple days, I hit the internet. I typed in "Dizzy after a Cruise." Fairly quickly, I happened on information about Mal de Debarquement Syndrome, but when I read that it can last for weeks, months, or years, and that there was no known cure, I quickly dismissed the information, saying, "No, that's not me."
We flew home a few days after the cruise, me still feeling not at all right. Driving ourselves home from the airport, I thought for sure that we had a flat tire. I got out to look, but the tires were fine. Everything about my experience, the sensations of doing normal things, was off. I truly wondered whether I was going to be able to drive us the 45 minutes home. I did my best. This was the first time I would notice something that's most common with this syndrome. In motion (in the car), I began to feel relief from the symptoms...and then, rounding a corner, or coming to a stop, I felt "strange." When I still didn't feel right after being home a couple days, I called my friend, who took me to Urgent Care. There, I was examined, and given an antibiotic in case I had an ear infection, though the examining doctor had not been able to see anything except possibly a very mild barotrauma in my ear. A week later, still not feeling well, I went to see my PCP, who also didn't know what was going on with me. She prescribed me two Scopalamine patches, and said I should feel better in three days. Three days later, the symptoms still intense, my wife researched my symptoms online, and found a YouTube video, which we both watched. The woman featured on the video exhibited almost exactly what I had been feeling for the past two weeks. It was then that I was 90% certain what I was dealing with was Mal de Debarquement Syndrome...the good thing was, there was a very good chance the symptoms would resolve on their own; the bad thing was, there was no known cure. So, I went to my doctor, told her what I thought I had (I would not be able to get in to see anyone at all in Albuquerque for definite diagnostic purposes for 5 1/2 months), and what the recommended protocol was...vestibular therapy and Klonopin. She willingly prescribed both, and so I began to try for "remission" with the use of Klonopin (which helped me a LOT for two weeks, then stopped working...I went round and round with this cycle many times over the months to follow) and began seeing a vestibular therapist (who had no experience with MdDS). I didn't last long in my first attempts at vestibular therapy...about three or four sessions of eye and head movement exercises was not only not doing anything to help me, it was making me worse. I began connecting with people online with the syndrome...that was my biggest lifeline...to simply know that there were others out there experiencing every bit of the weirdness and difficulty I was going through. I found out there were others who had a much more severe experience than I did...many of them couldn't walk at all! In that initial few months, I tried acupuncture, I tried a cleanse, I tried exercise, I tried a gluten free diet, I saw a chiropractor, I tried taking hormone supplements...anything I could to try and get well, I did it. I tried just about every single suggestion that made it's way into my head. Five and a half months after the onset of symptoms, I underwent a rigorous inner ear exam by the only ear surgeon (and the only person every ENT clinic told me to see) in NM. He knew about MdDS, and sure enough, diagnosed me with MdDS. He also had heard that MdDS usually goes away on it's own...so, I continued to hold out hope. I stopped using Klonopin entirely (except for trips), per his recommendation, and I worked hard with the various exercises he had prescribed for me. Still, the symptoms lingered. The other big thing that I had noticed, not long after the cruise, was that what had once been episodic migraines had now turned into ones of a more chronic nature. Each time I went on an extended trip (more than an hour in the car, on the bike, by air, etc), I would get a long lasting (13-16 days) migraine.
Time went by, the migraines and chronic sense of motion continued,and the longer I had it, the less the chance was that I would be lucky enough to go into remission. After about ten months of symptoms, they started to ease up some. What had been extremely difficult (pushing a shopping cart through the store, getting out of bed in the morning, busy crowds) began to not be quite as challenging. And on the symptoms rating scale, my symptoms went from being consistently at about 7-9 (out of 10) to 5-6. For awhile, I wondered and hoped I was indeed going into remission. I tried another round of vestibular therapy, to no avail...but still, my "rocking" symptoms (other than migrianes) faded more into the background. A few months later, symptoms were down to a 3-4.
For much of this past 44 months, after the initial horror filled months, my rocking symptoms have been in the 3-4 range of severity. And it's only a big trip, or a lot of stress, or overdoing things, that will get the symptoms high again. I am able to function pretty normally in many respects. I was lucky enough, a year ago, to find a new vestibular therapist, in our new hometown in North Carolina, who has had experience with MdDS, and had a very different approach to therapy. With her version of therapy for MdDS, which focuses more on stability and grounding exercises (she is also NOT of the mindset that more pain equals more gain...at least not with MdDS), I have even found myself at a level 2 on the scale at times. Shortly after the syndrome started, I had to say goodbye of my home renovation projects. No longer could I climb a ladder and trust my brain to coordinate with my feet properly (I fell once from a tree testing the matter), no longer could I squat down with ease, or crawl into tight spaces. I had to accept that life would be very different...this is still a big challenge at times. I still push myself too much (with a long hike, a trip, a dance) at times, and am still learning. What is enough of a push, and what is too much? The fine line between the two continues to be somewhat arbitrary and mysterious.
The hardest part for me has been the migraines. I have now been on every single preventative medication that is known of (except perhaps one or two?), including Botox injections. It has been a LONG and exhausting road with the migraines...and each activity that involved being in the car, on the bike, aboard a plane for more than an hour triggered a bout of migraines. The longest bout I had lasted nine weeks, following our move to NC. That bout seemed to trigger a bunch of shorter lived bouts that followed for several months.
What has done me the most good? I avoid certain things...I still avoid boats when at all possible, I largely avoid big and noisy crowds...these things still, to this day, really set me off into feeling terrible. I am trying to incorporate more travel into my life again, though it is limited. And when I do travel, I take Klonopin (though I'm pleased to say I don't need it for road trips any longer), which helps me avoid getting "the bouncies" after a flight. I walk as much as I can, outdoors...this may not always feel good, but it does help me overall. I am still working on the acceptance piece...now utilizing a mindfulness approach. For migraines, I have been taking Magnesium for about six weeks, and have found a huge amount of relief from the migraines...a trip that, before, would have triggered weeks worth of daily and severe migraines, has now resulted in a drastically reduced number of migraines.
Do I still hope for remission? Of course, but for me, given that it's been a few months shy of four years, the chances are slim. So, I am doing my best to rely on my support system, to modify life to the best of my ability, and to accept what is. I always believe in any and all research that is done for this condition. There is still no known cure. There have been new developments...maybe one day...all of us on this never-ending boat ride (not everyone gets it from being on a boat, either) will truly dock on terra firma again.
about 5 years agoI am 46 years old and got the following symptoms after going on a 10 day cruise (debarked August 10, 2014). Dizzy/swaying/tingling/trampoline walking feeling in head, headache, headache when focusing on computer, sensitivity to complex light, fatigue, feeling like it's difficult/painful to focus eyes, difficulty staying on task. I feel more normal riding/driving in a car. Quality of life has decreased dramatically...it's been difficult trying to work full-time as well as to be a mom. I am hoping and praying for a remission for myself all the others affected by this.
about 5 years agoI am currently 2 weeks into my second episode of MdDS. My first was in May of 2011 after a 7 day cruise. I knew something didn't feel right as soon as I set foot on land, but I figured it would pass within a few hours once I got my "land legs" back. It did not pass, it got worse as the days went on. That episode lasted 2 months. I was in remission for a little over 3 years and thought I'd be alright as long as I didn't go on any more cruises, take any real long boat rides, or long flights. I went kayaking, paddle boating, rode amusement park rides, and took short ferry rides over the past 3 years. I never hesitated before floating on a raft in my new swimming pool this year. That's what triggered this episode! Now, everything I do is altered or modified in some way. I feel a constant gravitational pull, as if the room is slanted and the floor feels uneven when I walk, and feels sort of like walking on a boat or a dock. I have to lean against the shower wall to wash my hair, I have to prop my knee against my bathroom cabinet to dry and style my hair, I have to lean against the kitchen counter or hold on to something to prepare my family's dinner, I have to focus on my destination and visually prepare my path before walking across the room or across a store or restaurant, etc. My cognition and short term memory seem to be more affected this time. I have had a migraine for 2 solid weeks now. All because I floated on a raft in my pool that day? And nobody can really tell us why...that might be the most frustrating part of all. Nobody can say, "this is why it happens, this is what is going on in your brain, this is what to expect, this is how long it will last, it will go away, it won't go away, it will come back, it won't come back, this is how we treat it...." Nobody can tell us these things. I am an RN and am currently off work on short term disability. I cannot safely take care of my patients right now. Short term disability only lasts so long, so I'm hoping this episode passes quickly. My husband and I also own a pizzeria, and I'm having a very difficult time functioning in the kitchen. I've been creating more confusion than anything. It's very frustrating for my family and takes a toll on my marriage. I am beyond ready to get back to my life.
about 5 years agoWent on a 7 day cruise beginning of June 2014 and have now rocked continuously for 3 months. Taking Valium 2mg 2x/day keeps my symptoms at a 3/4. Without Valium they are at a 5/6. Main symptoms include rocking, gravitational pull, fatigue, nausea, some sensitivity to flickering lights. I am able to work 40 hours a week, plus lots of volunteer hours at my church. So, I am able to keep doing life, but I feel crummy almost all the time. Hoping for more research to help us get off the boat!
about 5 years agoI have always been somewhat motion sensitive. In my 20s I worked on fishing boats in the Bering Sea twice for two months at sea each time. After those stints it took me about a month to get my land legs back (and quit smelling like a fish). Train trips left me feeling like I was still on the tracks for a couple of weeks. Then in March 2014, I flew home from Maui to Portland, OR. Since them I haven't stopped rocking. I've had PT, CAT and MRI, showing nothing wrong. I've had to cut my work as a teacher back to half-time this year, and am lucky my district is supporting me in a 50% disability. Teaching a full day left me too fatigued to function when I got home. I am not doing any medication for this, and since I've joined the Facebook support group, I have found that my symptoms are not as severe as many others. But it does cause me alarm for the quality of my life as I am on the cusp of retirement and was looking forward to fishing trips in Mexico with my husband. I feel like I walk on the surface of a trampoline all the time and also feel gravitational pulls regularly. But I haven't had nausea, vision or migraine problems that some people have. I find daily walking to be important to help me keep up my stamina for balancing. I find putting music on in my classroom (I teach technology) and putting rhythm into my steps as a circulate among students helps keep my soul happy and my mind off the MdDS. I will go for Dr. Dai's treatment at Mt. Sinai in November and am scheduled to participate in Dr. Cha's study in Omaha in the spring. Knowing that if I don't go into remission within a year that I might have this the rest of my life is scary. I've got too much living left to do, and I'd rather not do it rocking.
about 5 years agoWas diagnosed after almost 2 years of constant rocking, swaying, bobbing and dizziness and imbalance. I experience the symptoms whether moving around or sitting down and they are only eased when driving in a car or lying flat on my belly.
It is a cruel illness which has days of ups and downs (literally) and once you feel like you might see a light at the end of the tunnel, that light is quickly snuffed out within moments to a day.
Some experience remissions during this illness. I never have.
I describe this illness as trying to walk on a raft in the middle of the ocean during an earthquake in the dark.
In other words: exhausting, stressful, debilitating and both mentally and physically draining.
It is not a feeling one can 'get used to'. Feeling like your world is tilting, moving, rolling under you isn't something your body naturally adapts to and there is a constant struggle for balance and calm waters.
My hope is that enough people speak up about this illness, one which is very difficult to diagnose, and that more and more research will be done so years from now no one has to suffer this incredibly cruel illness.
about 5 years agoRocking and swaying for almost 11 years. Delayed onset after flying home from an island vacation. Walked up a hill on a cloudy day, one step, life changed forever. The need for research is extreme as more and more people are diagnosed and come forward with these symptoms. If it were not for the work of the MdDS Balance Disorder Foundation, there would currently be no active patient based international research.
about 5 years agoEdited and updated Jan 2019
In 2003 I took a long-haul + short hop flight from the UK to Zanzibar and was triggered with what I later found out is called Mal de Debarquement Syndrome (MdDS). The doctor I saw there said the symptoms would go in 3 weeks, which they did, and I wasn’t re-triggered by the flights home. In 2006 I was triggered by a train+car trip combination and this time the symptoms persisted for 8 months. During this time I was diagnosed - remarkably quickly - via ENT. The diagnosing consultant told me I would always have MdDS but wouldn’t always have the symptoms. Subsequently I had motion triggered episodes roughly once a year, varying in severity and length. Remission would usually be like an ‘on/off’ switch - one day I’d have symptoms, the next I wouldn’t. However sometimes I’d get alternate days of symptoms then no symptoms before going into full remission. These days I have symptoms most of the time and my neurologist thinks I have only a small chance of going into sustained remission now.
Like many people with MdDS the rocking symptoms abate when I am re-exposed to passive motion (eg on a train or in a car) and I can also switch off the symptoms by putting my feet on a TENS machine. Certain audio frequencies also reduce or remove symptoms but others make them worse. Other factors that can hike symptom levels for me include changes in altitude and air pressure, lux level changes and flickering lighting, exposure to enclosed spaces (although thankfully that doesn't affect me so much now) or bland or busy visual environments and disembarkation, even from short journeys.
Medications and treatments:
After the train+car trigger our family doctor prescribed a travel sickness medication which made the symptoms worse so, on the advice of my father (a retired GP) I stopped taking it. The diagnosing doctor wrote ‘I would probably advise her not to take vestibular suppressants’ but unfortunately I wasn’t able to read this until I bought my medical record, many years after diagnosis. So far I haven’t taken any other medications for MdDS other than vitamin and mineral supplements. Vestibular rehabilitation wasn’t effective for me the first time I tried it and, when it made symptoms worse the second time, I was told not to do it unless I got back into remission. I would like to try the opto-kinetic protocol for MdDS but can’t afford it.
I took part in the UK 100,000 Genome Project and hope that the roll-out of genetic medicine here will help people with MdDS, especially those who have familial MdDS.
Thanks to the increased understanding about MdDS I am now aware that I had several contributing factors which might have contributed to onset after the flights. I have a previous history of minor head injuries, which may be a factor. I was pre-menstrual during the flights and also on polio and malaria preventatives and, again, these may have been pre-disposing factors for me. The long-haul part of the flight was turbulent and this seems to be a common trigger factor for some of us. When I saw a neuro-otologist she also mentioned an operation I’d had as a child (to correct a squint/‘lazy’ eye) as a factor. The tests I had then showed I had a broken smooth pursuit system (especially at high frequencies) and ‘soft, central vestibular signs’. I think my original tests might have shown something similar but my health literacy wasn’t very good at that time and I didn’t understand what the technician told me, especially as it seemed to contradict what the ENT consultant had told me. IE the consultant said it was to do with ears but the technician said it was related to vision/visual processing.
After years of mediocre/very poor care, I now have an excellent primary care doctor and a great neurologist. I wish I could clone them for everyone who has to live with MdDS - or any rare condition. Charities such as Findacure and the Cambridge Rare Disease network have been very helpful to me and I am very grateful to them. I’m also very grateful to the intrepid MdDS Researchers who have made astonishing progress recently. It’s great that one of them won an Early Career Award in 2018.
Many thanks to the RE(ACT) Community for all you’ve done to help raise awareness about MdDS.
about 5 years agoMay 2009 thru Feb 2010 - Under extreme stress due to faulty home construction; later found out I also had mold, carbon monoxide and natural gas leaks in home. Feb 8, 2010 - Drove 12 hours to Ft. Lauderdale, FL. Feb 10, 2010 - Disembarked from 18 hour cruise / boat trip (rough seas; 2 hour shifts, sleeping midship, on the floor, over the engine room; lots of vibration on a 54' boat; no meds before, during or after cruise). Experienced land sickness constantly for three days and it subsided. On fourth day after cruise I had no rocking, bobbing, swaying. Boarded a plane for 1 hour 40 min. Changed planes; next flight was 35 minutes in very turbulent weather. Arrived at destination airport late at night, completely exhausted and stressed. Taxi ride home for 45 minutes and went straight to bed around midnight. Woke up on Feb 15, 2010, with the constant and persistent land-sickness feeling that has continued now for 4 1/2 years. My only relief is driving in a car or other passive motion. After many doctors and exclusionary tests, I now know it is an unknown cause and unknown cure of MdDS. I am here, bearing all, because I know there is a cure out there somewhere and we can connect the dots!
Complications of symptoms set in at 4 weeks - Levels were 8 - 10, Extreme fatigue, muscles were like jelly, totally off balance, brain fog - could not concentrate, total confusion, memory was difficult, sensitive to loud sounds - any sudden loud noise or anxiety would skyrocket high levels of rocking, gravitational pull - felt like I was wearing weights on my neck, ankles and shoulders, neck was weak and very sore, computer use triggers higher levels, etc. After about 6 months depression set in. Now, I control my levels with mental and physical exercise. My baseline is at 4-5.
Diagnosis - After 2 weeks onset of persistent land-sickness, I started getting worried & went to ER. CT scan and blood tests were all clear. Went to ENT for other tests e.g. VNG, VEMP, etc. - all clear. Had MRI - all clear except pan sinusitis. Had another CT - almost all 4 sinus were showing infection. Put on antibiotics & steroid for 20 days. Still rocking. Diagnosed BPPV and went to PT for 8 weeks. Still rocking and PT diagnosed MdDS.
One year after onset diagnosed with shingles and still rocking - GP ordered more blood tests - all clear except MCV High at 98, MCH High at 34, Glucose Low at 64, Herpes Simplex Type 1 Specific - 11.49, Herpes Simplex Type 2 Specific - 5.37, Varicella-Zoster IGM -0.24. Went to Neurologist - all clear. Went to cardiologist - all clear. Went to another ENT at Vanderbilt in Nashville - diagnosed MdDS.
Two years after onset diagnosed with Osteopenia.
Three years after onset diagnosed with severe arthritis in the neck.
Treatments past and current - Past treatments include sparingly use of valium for travel. Currently under the care of an Atlas Orthogonal Chiropractor (4 treatments so far) and also on 30 day course of AMOX/K CLAV 875 mg for a sinus infection. Developed huge rash and itching after one week and after another week, have little scabs.
Dated Sep 5, 2014. PG - Revised Sept 9, 2014