My name is Rena.
I have been suffering from Mal de Debarquement Syndrome on and off for over five years. My first bout started after a flight home to Canada from the UK. I caught a nasty cold on the flight, and after weeks of feeling off kilter I went to my doctor to complain in that my “jet lag” was going on for too long. After months of typing “dizzy” into the Google search bar (which was futile), I typed “bobbing and swaying.” Bingo! I finally found a site that matched the symptoms I was experiencing.
My doctor had never heard of Mal de Debarquement, and besides, after 2.5 months my symptoms went away. But after receiving literature from the MdDS Foundation, I was able to get my doctor on board with my care. My ENT ordered a dizzy test that ruled out vertigo. An MRI revealed bulging discs at my C4–C7. I’ve had several car and cycling accidents over the years that have impacted my upper back and neck, and I wonder if there’s a connection there. I am also in menopause.
I am grateful to have found the Facebook forum for those affected. It’s reassuring to know I’m not alone in this syndrome and that I’m not just “going crazy.” I am also grateful for this website, where I hope that my story might add some clues to possible causes.
I have not been in remission for over three years but my hope is to keep looking at the bright side, especially when this condition really drags me down. The hardest part of living with MdDS has been the “slowing down” part. Every movement is braced for. Stairways are slow going. I expend so much energy staying balanced that I get exhausted easily. My house has never been in such a disarray. It’s the worst when I feel like I’m drunk and hungover at the same time. I can no longer remember what it feels like to feel still, and some days when I feel like I’m never going to escape this condition, I am pushed to tears.
But when I’m really, really down… I tell myself that I have a superpower.
My superpower is that I am able to feel the wobble of the earth’s rotation, and that’s why I feel the way I do. It’s silly, but sometimes it’s a bit of comic relief that pulls me from despair. Self-empowered, I have managed to set a new course in my teaching career. I’m teaching part-time and there’s just enough days for me to recover a little bit. What about you? Have you figured out your superpower?
Helaas ook ik heb mdds. De diagnose heb ik nog steeds niet. Ik trek het niet om weer een arts te zien die mij niet kan helpen. Heb een doorverwijzing nodig om naar Mert in Houten te gaan, alleen mijn KNO arts kent mdds niet, en beweert dat de klachten door een angststoornis komen. Na het lezen van zijn brief was ik echt heel erg verdrietig, en weet niet meer wat ik moet doen. Heb geen angststoornis, had juist een goed leven voor het geschommel, en deinende gevoel begon. Ook mijn familie vond het belachelijk wat hij schreef.
De KNO arts zei dat ik ademhalings oefeningen moet doen, hij kent mdds niet. Na 2 sec lezen op Google zei hij, nee dat is het niet.
Ik ben 37, en loop er inmiddels 8 maanden mee rond. De symptomen: deinend, wiegend gevoel, heftige reactie op het zien van water, in een pan roeren, in bad gaan, handen wassen. Het is de hele dag aanwezig. Met autorijden voel ik me goed, tenzij ik stil moet staan bij een stoplicht. Mijn evenwichtsorganen functioneren goed. Heb een onderzoek met water, en strepen gehad. Het is bij mij vanzelf ontstaan zonder te reizen. Vanaf het moment dat het begon tot aan nu heb ik verhoging, terwijl ik van mezelf altijd een lage temperatuur had. De huisarts dacht daarom aan een virus, en zei dat ik uit moest zieken.
Als iemand een goede KNO arts of neuroloog (in Gelderland of Utrecht) kent die wel bekend is met mdds reageer dan op dit bericht. Heb echt een diagnose nodig, anders worden de behandelingen niet vergoed :(.
We hope you will join MdDS Friends. Members are from around the world and can offer the support you need.
I was sure the tub enclosure was loose and swaying when taking a shower. Walking around I wondered why my slipper soles felt so spongy…is one foot shorter than the other? took a few days for me to realise I’m the one swaying. Still cannot understand why having a shower whilst standing in the bathtub feels the worst. It’s going on for the past 3 weeks. Am hoping it goes away on it’s own.
You are not alone! It’s not clearly understood why, but the closed space of the shower is troublesome for many. Touching the walls may help with spatial orientation. Many find a shower stool, massaging tub mat, grab bars, or a clear shower curtain helpful. Find more tips on the Coping Tips page of this site.
Mine started after a cruise and will sometimes return after a long car ride or travel. I have suffered with MDDS for 5years on and off. I went to vestibular therapy to rule out vertigo and realized any motion made me feel better. I constantly sway and it gets worse throughout the day. I look as if I am drunk and I work at a bar! As much as driving helps, the more I drive, the worse my swaying becomes, after. So I do short drives when I need a break. I have found ways to manage it for months at a time, with physical therapy on my neck, and vestibular therapy with walking on focusing on one object. I also have c4-c7 disc issues and have found doctors that correlate that to MDDs, along with age and gender. Mostly women between 40-60 are affected. [sic] I’m 51 and it started at 46. I still travel and go on cruises, but if long, I need to do the therapy after and it usually goes away after 4-6 weeks until the next time it suddenly happens. I also feel a correlation to coming back when I travel sick( maybe immune system) or travel when drinking alcohol ( cruise ship, for sure! But plane as well!) it may just be the motion, but seems to come on worse. I am so thankful to my therapist who took a 3 day course to learn more about it, after my diagnosis. She had not heard about it and wanted to learn how to better help me. The more we get it out there, the better it will be for those suffering undiagnosed!
Statements like, “Mostly women between 40-60 are affected,” are based on incomplete data. A more accurate statement is, “MdDS is reported mostly by women, usually aged 30-60.” A patient registry (under construction) aims to collect statistically significant data to answer questions about MdDS both longitudinally and across the entire MdDS patient population. It will be a global study, open to all who suffer with MdDS. Subscribe to this blog or our newsletter to be among the first to know when the registry launches. Provide your email address in the sign-up form below.
I was in the US Navy, and you are correct. It’s mostly reported by women aged 30-60. But I know plenty of men of all ages who have had it including myself. I’ve had this on and off since I was 45. When Dr. Hain wrote about this in a paper decades ago, he mentions a bias in his data because the method of extracting data was a self-report write-in from a publication aimed at middle aged women, so of course it would seem like this only impacts middle aged women. He seems to have forgotten that, but those around him also encourage that fallacy in his thinking.
We already have a problem as men [shy] from seeing doctors or seeking medical care at all. I’ve seen men fall off of piers or walk with a swagger for months and insist nothing is wrong. Tough it out mentality.
When you add that to the myth that only middle aged or menopausal women get it or that it’s some period nonsense, men will be ten times more resistant to admitting they have this disorder. There are medics and doctors in the Navy now that won’t diagnose properly because they think it’s a middle aged woman problem and they sneer at you because if you have this, you must be on your period. Those men will never write in to the patient registry.
The registry will still have this issue. In the Merchant Navy, I’ve known men who were put off by patient advocates in the UK that blamed their estrogen levels with no proof. They would never write in to the registry. My wife contacted the Belgians and they also insisted that it’s a menopausal problem despite the fact that they get the average age of menopause wrong in their paper. She also contacted a researcher who I hesitate to call a researcher. The quack insisted that it was impossible for men to get this disorder. She still puts her name on MDDS papers to this day. Men who come across those groups will be discouraged to participate in any research. I’ve spoken to a few.
Some of us in the Navy have some form of engineering or science background. If we look at the literature, we see that when it comes to gender and hormones, the figures don’t support the conclusions the papers draw. There is nothing we can do about it. Then we look at patient posts and comments in places like this that gift those papers credulity instead of forcing them to earn it, and it comes at a huge cost of alienating patient populations.
I am glad that you are trying to correct that here.
But until those ideas can be corrected and the biases can be dismantled, any self-reporting study will probably elicit the same skewed outcome of it being a middle aged menopausal woman disease. And the cycle will continue.
You are absolutely correct about this issue, John. I am so glad to see this…written by a man! Thank you!!!
I’m sorry you have experienced MdDS, too. Despite the challenges that you describe regarding the reluctance of men to be a part of the solution, the Patient Registry is exactly what we need! To collect the data that will better reflect ALL that are affected. Soon, the MdDS Foundation will be undertaking a major campaign to better educate everyone about MdDS, research data collection/privacy, and the importance of contributing your individual story. Then, the picture should become more complete.
In the meantime, thank you for your comments. I look forward to your continued suggestions that will encourage participation by men who have MdDS!
Linda McManus
PI MdDS Patient Registry
Er zijn ook veel mensen boven de 35 die dit hebben gekregen, of nog jongere mensen na een zwangerschap. Misschien heeft het met hormonen te maken?.
The role of hormones in the worsening/remission of MdDS symptoms is not understood. Research is needed.
Wordt de rol van hormonen bij de verergering/remissie van MdDS-symptomen niet begrepen. Onderzoek is nodig.