While NORD defines “rare” as fewer than 200,000 cases in the US, MdDS is not as rare as previously thought. Nor is it a woman’s disorder. More and more men like Russ are reporting their cases. Please read and share. And if inspired, you can share your story, too. Please review the Submission Guidelines, and we’ll publish as many as we can for Rare Disease Day, February 29, 2020.
A Busy Day at the Lake
I had just spent two days of the Memorial Day weekend on a boat and dock. After departing from the lake, I stopped to get dinner with my wife. I finally sat down for the first time since that morning and felt “it.” Like many sufferers, I did not know what “it” was… looking back I now know the drive from the lake to the restaurant had masked any symptoms. I looked at my wife and asked,
“Does the floor feel like it’s moving?”
Obviously it was not, and so began my experience with recurrent episodic MdDS.
What had triggered this?
The lake was very busy that weekend as my family and I sat on the bobbing and swaying dock. After two days, my body could not adjust back to solid ground. I was living on a dizzying, rocking dock around the clock for the next three months.
I scoured the Internet for answers, and I came across many blogs and message boards pointing me to mddsfoundation.org. Armed with this knowledge I was able obtain the diagnosis of MdDS. With diagnosis comes acceptance, but the hardest realization was coming to terms that my dreams of a jet setting, high paid consulting career were over. My new focus was to avoid retriggering this affliction and still grow in my career to support my wife and future children.
I thank the MdDS Foundation for providing me with the knowledge I needed to get a diagnosis. So many of us are out there, and some may have given up hope for a diagnosis because they are unaware of MdDS.
As another MdDS sufferer said, we still deserve the best life we can live. With this in mind, we need to make it our mission to spread awareness. By submitting my story I hope that others will find their way so they can begin to heal and cope.
I have had three episodes since that busy weekend in 2016. For each occurrence, only time has given me remission. I could not even drive for two hours without possibly having another triggering event. After diagnosis and help from my doctor, I have been able to avoid future episodes during my very limited travel.
Russ
Age 32 at onset
Age 32 at onset
Thank you for sharing your story Russell, I too get it from being at the lake. We have a lake house outside Yosemite and a boat and dock. My experience is similar to yours. I got MdDS initially from a 10 day cruise in 2016 (my first cruise too), It took a month for symptoms to go away. Then it hit again from being on the boat/dock for up to 5 days the following summer, which it took a few weeks to go away. And now I just got it again this past Memorial Day from just being on the boat 2 days! UGHHH, its not too bad this time, but I am avoiding the boat and dock right now. You mentioned that from help from you Doctor you were able to avoid future episodes, does that mean you just avoid boats and docks now? Or is there a special treatment your received?
I am sorry you are dealing with this. Mine started last November when I got off a paddle boat we had been on for a Mississippi river cruise. The water was very calm and I had taken 3 or4 ocean cruises before so I was very surprised to feel so dizzy after getting off boat. It has lasted for over 3 months now and affects my daily living . I have my first neurologist appt. tomorrow and I’m hoping to get some help.
Marilyn,
I hope your appointment goes well. I forgot to mention in the article that a vestibular exercises regimen may help you recover faster if you have episodes like I do. They will NOT cure you but they will help.
Can you share what kind of exercises? Many therapists do different exercises that are not specific to mdds because most have not heard of it.
Hi Russell, how do you avoid future episodes? What did your doctor tell you to do?
Hi Yami,
I’m not sure how much detail I can provide but traveling less and if driving taking breaks helps.
Thank you for sharing. This is how I got MDDS as well. A weekend at a lake and a pontoon boat. 7 months and counting. Best of luck to you!
Hi Jennifer,
Who would think that fun weekend on the lake would have done it? Did you notice it on the first day of your weekend?
I am hopeful for your remission. Have you considered contacting Mt. Sinai for their therapy?
Please note that there have been many changes to the program and personnel at Mt. Sinai. Both Drs. Dai and Cohen passed away, and Dr. Mucci is no longer involved with the program or MdDS research. As of October 2019, there is a new screening and intake procedure in place. For the most up-to-date information, contact Mt. Sinai directly by email to balance@mssm.edu.
I have contacted (Mt. Sinai)and asked for them to provide treatments as they have not scheduled since last October. I feel the only hope we had may not be available
Hi everyone, I got MDDS for like almost a year now and I tried many exercises but finally found a treatment that helped me reduce it. I got the syndrome from a long flight. I now use RTMS treatment and it helps me and I see the future much brighter now. Please look it up, it might help you too.
We are encouraged to learn that you were helped, Tess. Repetitive transcranial magnetic stimulation (rTMS) has been used in experimental protocols to treat Mal de Debarquement Syndrome (MdDS). You can read about the first group of participants subjected to rTMS in 2011 in this Physician’s Perspective blog post. https://mddsfoundation.org/research/resting-state-functional-connectivity/
Additionally, rTMS has been discussed in much of the biomedical literature available through this website. https://mddsfoundation.org/?s=rTMS
So sorry you have this problem. Thankful you found information to help manage any future episodes( which I hope don’t occur). Well written and informative.
I am so sorry you and others have to deal with this.