Dear fellow patients,
I hope this letter finds you well. I am writing to share my experiences with a condition that I have been living with, known as Mal De Debarquement Syndrome (MdDS). My hope is that by sharing my story, I can help others understand what it’s like to live with this condition.
MdDS is a neurological condition that leaves me with a constant sensation of movement. Imagine spending a day on a deep-sea boat, rocking back and forth with the waves. When you finally return to dry land, you close your eyes in the shower and still feel like you’re moving. That’s what every moment feels like for me, even though I’m not physically moving. This internal sensation of movement is extremely fatiguing and can be quite disorienting.
I have had the following symptoms off and on for five years. The symptoms would come for a day or two and then disappear. However, shortly after a plane flight about 13 months ago the symptoms returned with a vengeance, and I have been suffering from them every day since.
There are certain activities that worsen my symptoms. Walking, for instance, feels like I’m bouncing on a trampoline. Some days it is minor nuisance. Other times I feel like I should not be walking at all for fear of falling. Even though it has been my experience that I WILL NOT fall, I must convince myself of this fact daily when the symptoms are severe.
Using a computer for more than two hours makes me extremely dizzy, to the point where I must lay down and either sleep or wait until my sense of motion returns to its baseline.
Watching moving images on a screen is particularly challenging. For example, the moving screensaver on Apple’s iOS called Sonoma, or the opening to the Stephen Colbert show where the camera follows him into the theatre, can make me nauseous. Point-of-view snowboarding cameras from the X Games are also difficult to watch. When symptoms are severe, I am light sensitive and sound sensitive. Laying in a quiet room and letting your brain reset is often the best remedy. Usually, I will fall asleep for some time.
The most provoking activity, however, was unfortunately a significant part of my professional career – performing colonoscopies. The act of advancing a video scope through a patient’s colon triggered such an extreme sense of motion that I would have to brace myself against the gurney. If I continued with the procedures, I would start to sweat profusely, become very lightheaded, and if I kept going, I would have to throw up in between cases.
Interestingly, the only time I feel near normal, and the sense of motion is very limited or almost non-existent is when I drive a car. Driving is so therapeutic for me that when I googled “I am dizzy except when I drive a car,” I was able to diagnose myself instantly. It’s a strange relief, but one that I am grateful for.
Over the years, I have tried numerous medications to manage my symptoms. These include blood pressure medications, migraine medications, and anxiety medications. Unfortunately, none of these have worked for me. However, I am currently on a medication that does seem to help. It cuts down the motion sensation by about 20-30%, which makes a significant difference in my daily life.
Another thing that seems to help is performing extremely strenuous exercise to start my day. It’s as if the physical exertion helps to ground me and reduce the internal sensation of movement. It’s not a cure, but it’s a coping mechanism that helps me navigate through my day.
As a gastroenterologist, a significant part of my job involved performing colonoscopies. However, due to the extreme motion sensations triggered by this procedure, I was unable to continue performing this essential duty. Consequently, my employer placed me on mandatory medical leave. This has led to a drastic reduction in my income, despite receiving disability benefits. One of the many curve balls that MdDS has thrown my way.
Another significant change in my life is the need for midday naps. I now must take up to 2-hour naps during the day. Once I wake up in the afternoon, I start feeling a little better as the dizziness is always worse in the morning. My afternoons are now filled with high amounts of caffeine to keep me awake during the hours I am less dizzy. When I was working full time, I went from drinking no caffeine after noon to consuming between 300 to 500 mg to make it to the end of my workday.
Although physical therapy, vestibular rehabilitation did not work for me, it seems it can be helpful for some. I also tried vestibular focused Acupuncture – no help. I was able to take part in a research study for MdDS at Mt. Sinai. Although it did not help me, I really appreciate the fact that the staff at Mt. Sinai and other institutions are desperately trying to find effective treatments for MdDS.
Living with MdDS has certainly altered my life in ways I could not have anticipated. But I believe that by sharing our experiences, we can foster a greater understanding and empathy for those living with this condition.
Best regards,
55 year old GI doctor who has been diagnosed with MdDS
Stories like this show how important our work in seeking treatments that end the suffering from MdDS are — but we need your help.
An all-volunteer nonprofit foundation, we seek treatments and a cure for MdDS, a chronic neurological disorder causing the feeling of rocking and swaying. A donation today helps us continue this critical work.
Hi Dr. Costanza, thank you for your sharing your story, thank you for your letter, God willing will see you in 3 years or sooner, I had an experience out in San Felipe, Baja California some years ago, took a boat ride and experienced dizziness for a while, felt better after a nap. it was an awful experience; I can’t imagine what you are going through. My late aunt Lupe recommended strugeron forte 🙂 lol, Get well soon, keep driving!!!
Thanks so much for sharing your story. I’m sorry to hear that MdDS has negatively impacted your career. I was very interested to read that you also suffered in front of a computer screen. My symptoms began after a flight, resolved spontaneously a little after 6 weeks, then returned after another overseas trip, and lots of boating. When the symptoms came back, and lasted more than 12 months, I think the rocking sensation was more manageable than my complete inability to spend more than about 5-15 minutes in front of my computer screen. This severely impacted my ability to do my job.
Because I’d previously been diagnosed with probable Meniere’s Disease my doctors just assumed that was my issue when I explained feeling out to sea all the time. But, I knew that the rocking and rolling, combined with the complete lack of symptoms when driving around more likely pointed to another issue. I wonder, is MdDS more common in those with other issues such as Meniere’s / Vestibular Migraine?
It’s good to hear you’ve found some relief with the right medications.
Vigorous exercise has also worked wonders for me! So much so, that I now work in the fitness industry!
I hope that your symptoms continue to improve.
The refresh rate (flickering) of computer screens and quick movement of scrolling is troublesome to many. Here are some coping tips you may find helpful for using computers.
It’s interesting that you are a gastroenterologist. The only physician who immediately understood what MdDS was when I said I had it (four times, this last time without relief since 2019) was a gastroenterologist. It was because he had a number of other patients who reported it.
The first time I felt the recurring symptoms of still being on the boat was when I would sit on the toilet. They would disappear when I got up, but for a week every time I sat on the toilet, I felt like I was on a boat.
Each time since, though, it took longer and longer for the MdDS to resolve itself (a full year the time before this occurrence, and had I known about my condition I probably would not have cruised again)… sitting on toilet made it worse.
Even now when I first get up in the morning, I’m not on the “trampoline” until I have to go to the bathroom. But as soon as I have to go, the boat starts rocking for the day. For a long time I thought it was because I was sitting over water. LoL
But it’s interesting how many women my age have gastrointestinal and bladder problems, so my MD was very empathetic about my experience.
Thank you for sharing your story! I wanted to validate your experience during colonoscopies. I’m an OR nurse and I have to help in Endo with our GI doctors some days. I have problems watching the advancement of the scope with the combination of the movement of the water during the procedure. The procedure rooms are small and then add in the smell of formalin once biopsies start. It makes me nauseous to think about it.
My story is similar to yours. I also traveled to Mt Sinai for treatment which was unsuccessful long term. Luckily, as an OR nurse, I had some other options working in surgery.
Best wishes to you! I hope you find a little happy in each day.
Thanks for sharing this letter ! You are talking about a medication that helps you… Can you please tell us more about it ? many thanks
Clonazepam. Low dose in the am works best for . Once daily.
I have had MdDS for two years now and will be starting medical school this summer. I discussed my experience with MdDS in my application, so my program knows about the symptoms that I experience to some degree, but I do have some anxiety about how my symptoms will be exacerbated by certain parts of medical school, like sitting through lectures (thankfully most will be optional), and training related to some procedural specialties (I fortunately have never wanted to pursue a procedural specialty long-term). Thankfully, my symptoms are generally milder and, while annoying and distracting to some degree, do not prevent me from doing a full day’s work. I am very sorry that MdDS has affected your career in the way that it has; I guess it’s an unfortunate reality that MdDS does need to be an important factor in choosing a specialty. I hope that you can find a way to continue treating patients that does not trigger your symptoms as severely.
Thank you so much for sharing your experience. I am of the same thought process now that I will not limit traveling because the symptoms are present whether I travel or don’t. I also would like to.know the name of the medication.
I am taking Clonazepam and some days it seems to help but sometimes it does not.
Also, when you mention strenuous exercise, could you share more about that. I cannot go on a stationary bike or I feel that I will fall off. Looking to improve the symptoms with tried and true methods.
Clonazepam also for me. Low dose. Once daily. Exercise is run/walking stairs in AM. I put on 40 extra pounds of weights. 24 pound vest and 8 pound weight in each hand. It 30 minutes extreme and would not recommend it unless you get cleared by a doctor first. I definitely feel like I am going to fall over during the last ten minutes. However if I don’t push the limits the rest of the day I will be more dizzy.
I am so, so sorry that you are afflicted with this horrible, invisible illness. I have had MdDs since 2015 & have been to NYC twice for treatments. As with the stages of grief, I am now in the acceptance phase. I developed Vestibular Migraines after MdDs. I know my triggers & yes, one always feels better in motion, but then it rebounds once you stop. I manage my VM/MdDS on meds that I have found that helps a lot, through trial & error. I am a pharmacist but no longer work in the field due to the unpredictability of the syndrome. Last year, I did go on a power boat to reach a friend’s cottage that was on a remote island, however it was a calculated risk – I took clonazepam & went blindfolded as I am very visually triggered. The first 4 months were terrible! I was bedridden quite a bit, I had to wear sunglasses if I ventured into brightly lit stores & would “bob” up & down when walking through high aisles. This has mostly gone away now 🙂 I manage as best I can now with the help of meds. Some feel that it is a variant of migraine. What works for me is: Effexor XR [redacted] mg daily, Co-enzyme Q10 [redacted] bid, amitriptyline hs, magnesium [redacted]mg hs & clonazepam before any extended travel – long car ride, plane ride, etc. Dr. Dai felt that walking outdoors is very good. He said to avoid tread mills & ellipticals and felt that it was the small, enclosed space of elevators that triggered symptoms so I simply close my eyes & hold on to the rail. I live in Canada & have paved the way for others as I qualify for the DTC (Disability Tax Credit). I wish you the best & hope that you can get some relief soon.
What medication is the writer on? I am trying to help my daughter, and would like to know in case it might benefit her.
Clonazepam. Once daily. Low dose. Take first thing am.
you keep answering this question. Are you in fact the OP authoir?
We are confirming that he is the OP of this story.
This is a horrible condition. The descriptions herein are accurate. My wife developed MDdS in 2012 following a 5 day cruise to Alaska and a subsequent plane flight back to CA. It has not subsided at all. We’ve been to Manhattan (Mt Sinai hosp) for Dr. Dai’s experimental treatment and to the Brain institute in Tulsa for experimental treatment. Nothing has worked.