My name is Jessica and I am 29 years old. I am from New York and I have had MdDS for 6 months. This is my story.
July 2013, I went on a family vacation to the Dominican Republic. The vacation started out great. The third day we were away, we decided to take a snorkel trip. This would turn out to be a life-changing decision. The trip was aboard an old pirate ship and was to be a 4-hour tour in the Atlantic. The moment we boarded the boat I felt something was terribly wrong. Something in my body was telling me to get off this boat, I was incredibly anxious, but I didn’t listen. I looked at my friends and family, and everyone seemed to be having a good time. So I took a deep breath and told myself to relax. I pressed on with the excursion and made the best of it. What I didn’t know was what was waiting for me onshore would be nothing less than a complete and utter nightmare.
I have been on many boats in my life. I have been aboard several week-long cruises. I have flown all over, been on every amusement park thrill-ride imaginable. I have experienced the extended length of time that it takes a normal person to regain their “land legs” after a trip aboard ship. As soon as I disembarked the ship, I felt that “sea leg” feeling, but just shook it off and told myself it would go away. The rest of the week I kept complaining about how “off” I felt and everyone just looked at me like I was crazy. I tried taking Dramamine thinking it might help reverse my “sea legs”. It did help me sleep, but did little for this sensation of rocking, swaying, and bobbing.
As soon as we returned home from our trip, I knew something wasn’t right. To top off my rocking, swaying and bobbing, I had a terrible cold. I went to my PCP who told me I was dehydrated and thought I might be fighting something, she prescribed me an antibiotic and told me to rest. By day 3 of the antibiotic none of my symptoms were improving and a co-worker suggested I see an ENT. I called that afternoon and was able to see the ENT that day. This was the first time I heard the words, Disembarkment Syndrome. I had never heard of this syndrome, although he assured me I need not worry, as the symptoms usually dissipate in about 2-3 weeks. He said if the symptoms did not go away within a month to call back for further testing. That was a huge relief to me. He scoped me and told me I had a sinus infection and prescribed a stronger antibiotic for the infection. I left his office feeling relieved, I wasn’t crazy.
I wish I could say things got easier from that moment, but somehow things just kept getting worse. My sinus infection had cleared up, but my rocking, swaying, and bobbing were still quite evident. I was also noticing weird sharp headaches, bouncing eye movements, a cloudy brain, and trouble finding words. I wasn’t sleeping, my anxiety was at an all-time high, and I was emotionally fragile. I couldn’t eat and had dropped around 15 pounds. My husband thought I was a lunatic and I was even questioning my own sanity. At this point I had done my research and knew that if my symptoms weren’t gone yet, I may be looking at a more long term situation.
I found a Neuro-Otologist at NYU who could diagnose Disembarkment Syndrome. I made an appointment and was able to see him quickly. He ran the typical battery of tests an ABR and VNG. Everything came back normal. He told me I would get better and recommended vestibular therapy. I went to a balance center 2 times a week for 2 months, did everything the vestibular therapist told me to. She was compassionate and supportive, and was as confounded by the diagnosis as I was. I was losing hope and vestibular therapy was doing little to help my symptoms. I even started having some seriously questionable thoughts. Thoughts that I never could imagine I would think at 29, newly married, and otherwise very healthy.
I made an appointment with a neurologist and he laughed when I told him my symptoms and diagnosis; he had never heard of such a diagnosis. He prescribed Klonopin and recommended I have an MRI/MRA of the brain. I had the tests done, and everything turned up normal. I was struggling with my job and my relationship from lack of sleep and extreme anxiety. I didn’t want to take the Klonopin but felt I had no other choice. The Klonopin did help. I was sleeping better every night, but my vestibular therapist was very against it and it was doing little to rid me of my symptoms. She believed it would make my symptoms last longer, the very last thing I wanted, but I was desperate. That’s when I stumbled upon an announcement on the MdDS Foundation website of a new research study. I really wasn’t sure what the study would entail, but by this point you could have told me you were going to electrocute me and I’d have been fine with that.
Dr. Mingjia Dai contacted me shortly after, regarding my inquiry into his study. We set up an appointment at his office, at Mount Sinai Hospital Center. I was hesitant to go, but my vestibular therapist encouraged me to at least see what it was all about. I did go see Dr. Dai, and I can honestly say it was the best decision I have made thus far.
Dr. Dai not only knew of MdDS but he actually understood how I felt. I felt I was talking to someone who knew what was wrong with me and thought they could help. I only sat for one treatment with Dr. Dai, and the entire appointment was not more than 45 minutes. He had me do a few exercises I had done in vestibular therapy. He asked me to stand still with my eyes closed and my arms crossed, wanting to know which way I felt my body rotating. I had never realized that my body had an internal rotation. When I closed my eyes, my body started moving forward then to the right, back and left. Dr. Dai then had me sit in a dark booth as he watched the nystagmus in my eyes, movement other doctors had missed.1 Then he started his treatment. He had me watch a pattern of light on a dark wall for three minutes as he moved my head in an opposing direction. As soon as it began, the treatment was over. I felt fine after the treatment with a level between a 2-3. However, I left with my head feeling fuller than I have ever experienced. As I drove home to Long Island, it felt like my head was going to pop off my shoulders and float away. Once home, I waited for the magic to happen. I panicked the next day when I still felt all of my symptoms ever present. Dr. Dai, amazingly, agreed to meet with me in his office on a Sunday to try another treatment. After an exam, Dr. Dai attributed the elevated symptoms to the driving and convinced me that they would subside in a month or so. As a result, he did not give me any further treatments. As he said, my symptoms would reduce over time.
I am now 4 months post treatment. When I met Dr. Dai my symptoms were a solid 5-6. I can confidently say my symptoms are at a steady 0-2. When I am at my worst, my symptoms are a 2. When I am at my best, I am practically symptom free. I do notice things that trigger my symptoms to a level 2, which include staring at a computer screen for too long or sitting in an idling car for extended periods of time. Prior to this diagnosis, you would find me at the gym or taking an exercise class, I always tried to keep myself physically active. I am not quite back to the gym, but at Dr. Dai’s urging, I have forced myself to walk. I try to walk 2-3 miles outside, a few times a week.
I know I am getting better every day, and I attribute this to Dr. Dai. It is so rare that we find people who even try to understand MdDS. There are so few treatments, and he is trying to find one that works. I truly believe Dr. Dai has helped me get my life back. I can’t say that I am 100% but I know that I am getting close.
Family vacation, July 2013
1 Bouncing vision and nystagmus are typically not associated with MdDS. To learn more about symptoms most frequently reported and the MdDS Symptom Severity Scale, please click here.
The MdDS Foundation encourages research and clinical studies such as the one mentioned here. By publishing this story, no endorsement by the MdDS Foundation is implied. For further information, please read our Medical Disclaimer
Do you have an email address for Dr. Dai? I am struggling with some severe undiagnosed balance issues and I want to talk to him about them. I’m in virginia so it’s far for me to travel to see him
Please see this post, information provided by Dr. Dai’s team at Mt. Sinai. https://mddsfoundation.wordpress.com/2014/11/01/mount-sinai-school-of-medicine-vor-readaptation/
I’m glad I’m not alone. Does anyone know if there are any other doctors, I live in Vancouver, BC, that perform the same treatment? I saw one Dr. who knew of this but there was essentially no treatment, just wait it out.
Congratulations to Jessica. I’m 80, have struggled with MdDS for over four years and will see Dr. Dai in two weeks. When results are known, I send the whole story to this web site. My primary similarity with the other’s stories herein is Tinnitus – for 35 years. God Bless all of you who are battling the rock. And please, anyone who sees Dr. Dai, publish the results here. Bill Hazen
Your story is my identical story. The only exception is that my MDds was brought on by an airplane ride looking out the window taking pictures of the clouds through an I phone. The minute I got off the plane I had to grab my husbands arm. I also had an upper respitory infection and thought I had fluid in my ears. My doctor gave me an antibiotic and I had a head ache that would not go away. I felt the rocking bobbing and swaying 24 hours a day.
My sister in law suggested that I go see someone who did acupuncture and a chiropractor a couple miles down the road from our home… I told her that I’ve been everywhere and I doubt very highly if they could help me … I told him everything that was happening from headaches to my eyes twitching to the bobbing in Rocking and swaying… I decided to do back to back treatments . To my surprise I am getting great results! I just tried this one month ago and I have days where I am down to a one meaning I barely can feel the symptoms of them DDS !!! However I noticed when the barometric pressure changes here in Michigan or if I scroll on my iPhone or on a computer it’s bikes it right back up again .. Hi believe if I can try to stay off my computer which is very difficult and myself own and if I continue with these treatments I will be on my road to recovery .. The last thing I want to tell you is that I too was dehydrated and my chiropractor said if you do not get hydrated these treatments will not work .. Sense then I carry a water bottle wherever I go .. I truly hope that this will help you and pray that you will be on solid ground before the spring so you can have your life back 100% — Sincerely, Tammy from Farmington Hills Michigan
Tammy, a very short version of your comment has been approved. We try to limit the amount of scrolling required of our readers. Also, between your brain fog and your autocorrect, we could not make sense of quite a bit of your story. It is interesting though, and you are invited to submit your own “Faces of MdDS” story by emailing your narrative to firstname.lastname@example.org. Send a photo, too, so that there is a face to go with the story.
I have had MdDS for 3 years now, and have just contacted Dr. Dai about scheduling a treatment. I had been misdiagnosed for several years, and am finally feeling like there may be light at the end of the tunnel. I would love to hear about how you are doing now, and if there are any dietary/exercise treatments that helped you. I’d love to share stories, and am happy to give you my email address, if you are willing to do that.
Claire K (26 years old, NYC)
Hi just wondering about this condition,as for three years now i am left with constant rocking and swaying sensation.I had a head injury the week before hand. I do get relief from driving in a car.MRI and ct scan are clear.doctors say post concussion syndrome. But there was a lot of travelling prior to onset as well.
Your blog is extremely helpful. I am looking for where I can schedule an appointment with Dr. Dai and am not having any luck. Do you know if he is still practicing.
See this post, provided by Mingjia Dai, PhD., Mount Sinai School of Medicine: https://mddsfoundation.wordpress.com/2014/11/01/mount-sinai-school-of-medicine-vor-readaptation/
To contact Dr. Dai you go through his patient coordinator:
Zelinette La Paz, Patient Coordinator
Icahn School of Medicine at Mount Sinai
Department of Neurology
1468 Madison Avenue
Annenberg Bldg 2nd Floor
New York, NY 10029
I am scheduled to see Dr. Dai In March. Unfortunately I can’t get in sooner. Can anyone describe the treatment procedure. Watching optokinetic stimulation w stripes moving (right for me) the opposite of the stepping test indication (i turn left), while head rolls from side to side at a .2 hz velocity. Do you watch the stripes (follow each strip as it moves), Or focus on sort of looking through the rotating stripes while they move?
PD, you are welcome to join either of our Support Groups where this treatment has been discussed a great deal. You can search through the messages and also ask others about their personal experiences. Links to the Foundation-supported groups are at the bottom right of this page.
Hi Gretchen – I do feel pretty good now. My symptoms range from 0-2 on any given moment or day. I am a bit disappointed that I am not 100%, however, I have come to terms with the fact that 100% may not be in my future. I’d say I’m 90-95% and I’m very grateful for that! I have done other things since posting this article. I’ve seen an atlas orthogonal chiropractor as someone else suggested, I practice gentle & yin/yang yogas~2-3x a week, and most recently I started seeing an integrative medicine doctor who started me on gluten free as well as a few other self-specific food avoidances. I have to say most recently is when I have truly felt my best. But who knows I’m always going to be looking forward to a better tomorrow! I wish everyone the best of luck on here! It definitely is a trial and error but in my opinion it’s better than sitting around and waiting for something to happen!
I am considering a trip to NY to see Dr Dai. I am from Iowa, so it will cost me a small fortune but if his treatment works will be well worth it. I worry about plane ride home though, having setbacks from it. I have been struggling with this for almost a year now. Love to hear other peoples stories. Makes me feel like I am not alone and not crazy!
Posted as a request from Dr. Cohen:
Please read this notice if you are attempting to contact the team at Mt. Sinai for treatment.
A formal input procedure has been put in place. People who have or may have MdDS and are interested in having a consultation and/or possibly treatment should contact Zelinette La Paz (Zelinette.email@example.com – 212-241-2179) to start the input process.
The MdDS Foundation does not endorse this treatment nor does it have any financial interest at this stage.
Hi Jessica- I would love to know how you are feeling now. Please let us know. Thanks so much- you are a strong young woman!!
Jessica, you are so lucky to be in the New York area where you can take advantage of Dr. Dai’s research! I live in Florida on a very inadequate fixed retirement income. Can’t get to New York. And there are no research studies being done nearby that I can go to. We are told ”you gotta expect these symptoms when you get old” or we’re tagged with a psychosomatic title! I’ve had MdDS for years and years and I’m tired of it! Hang in there, girl, better days are coming. Spread the word – get the Foundation brochures and hand them out to anyone who never heard of MdDS!
Holly, I could use more of them to keep spreading the work…
Brochures are on the way, Granny. For those looking for brochures, you can find a downloadable PDF in the main website Library, or you may send a request via email. Let us know how many you need and your mailing address.
Hi Jessica – Our stories are so similar right down to the treatment from Dr. Dai. I wish I had still been in NYC when you were diagnosed so we could meet and swap stories in person. I’m glad you responded well to Dai’s treatment and are enjoying zero symptom days.
How have you responded to Dr. Dai’s treatment? I still have my good days and bad days unfortunately and am approaching 8 months in.
Hope you are fairing better.
Hi Jessica –
Sounds like I’m in the same boat as you with good days and bad days. Dai’s treatment brought me down from a 7 – 8 symptom level to 3 – 4. Over time, I’ve enjoyed even lower level symptom periods but I’ve also had flare-ups. I’ve never gone back to the levels I experienced prior to seeing Dai though. He definitely improved the quality of my life, and I feel really fortunate to have met and worked with him.
Wishing you a bunch of good days in the months ahead.
Jessica – I had this last year for a month. The feeling is awful and I feel very sorry that yours latest longer. I had dizzy symptoms again at the start of the year, but nowhere near as bad. Both times though, I had to fly, was a little stressed and had some sinus issues. I really think sinuses and stress cause MdDS… especially when you have to get on a boat. Good luck!
While sinuses and stress may play a role, current research indicates that MdDS is neurological at its core. We need further research to fully understand what is causal versus correlational. Published findings may be found in the Professionals area of this website.
Thanks for sharing your story Jessica! I hope you continue to improve!
Thanks so much for telling your story .
It encourages all of us to have hope and try different things.
together we are strong
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