Home / Blog / Faces of MdDS / Finding My Footing: How I Regained Control After an MdDS Diagnosis Our Blog Faces of MdDS 6.30.26 Finding My Footing: How I Regained Control After an MdDS Diagnosis Eight years ago, I was diagnosed with Mal de Débarquement Syndrome. It all started after what should have been the trip of a lifetime—a guided fly-fishing trip in the Florida Keys. I had a terrible head cold, but I didn’t let it stop me. I spent the entire day standing on the bow of the boat, fly fishing for tarpon and bonefish.The second I stepped back onto land, my world started rocking.It was so intense that I could barely stand. I remember taking a shower the next day and having to brace myself against the walls because it felt like the shower was violently rocking side to side. Like many of you, the only relief I found was while riding in a car. For the first six months, long drives became my escape because they were the only thing that made me feel normal.Those first six months were some of the hardest of my life. I truly felt hopeless.I went from doctor to doctor. My primary care physician didn’t know what it was. I was told it was Eustachian tube dysfunction, then that it was crystals in my ears (BPPV). Deep down, I knew it was something different. Eventually an ENT diagnosed MdDS, but also explained there wasn’t much they could offer in terms of treatment.So I decided to take my recovery into my own hands.Over time I tried just about everything I could think of: acupuncture, improving my diet, regular exercise, yoga, meditation, Reiki, and other forms of stress reduction and healing. I can’t say any one thing “cured” me, but I genuinely believe many of them helped me gradually regain control of my life.Today, I’ve been in remission for quite some time.One of the biggest victories has been getting back out on the water. I even wakesurf again, which is something I never thought I’d be able to say.I’m still careful. Before I go boating, I prepare myself mentally, I keep my time on the water shorter, and I spend much more time sitting than standing. For me personally, standing on a moving boat seems to be a bigger trigger.It’s not completely gone. If I spend an entire day operating heavy equipment like a skid steer or tractor, I’ll sometimes feel those familiar waves trying to return. But they’re manageable now instead of life-controlling.Another thing that has surprisingly helped me is using optokinetic videos on YouTube (the ones with the moving stripes and stationary dot). Again, I know everyone is different, but they’ve made a noticeable difference for me.If I had to credit the things that helped me the most, they would be: Maintaining hope and the belief that things could improve. Acupuncture. Exercise and yoga. The incredible support from my family and friends. I know how isolating this condition can feel, and I know what it’s like to wonder if life will ever feel normal again.I can’t promise that what worked for me will work for anyone else, but I wanted to share my story because I remember desperately searching for success stories when I was in the middle of it.There is hope.I’m incredibly grateful for this community, and I’ll continue to stick around to support others however I can. If my experience can help someone or simply give them a little hope, please let me know in a comment below.—Dakota C. from Northern ColoradoThe MdDS Foundation extends a heartfelt thank you to Dakota for sharing his deeply personal story of resilience and recovery. Personal accounts like his are a powerful reminder of the strength within our community. Sharing this journey is a beautiful way to close out MdDS Awareness Month, leaving us all with a renewed sense of hope and connection. What has helped you find hope or relief on your own journey? Leave a comment and share your thoughts. Related posts: MdDS Insights from a Male Senior Citizen Global Genes Project Features MdDS Patient Story
Thanks, Dakota, for your inspiring story, to everyone who shares their own personal experiences, and to the Foundation for providing a supportive forum for us “rockstars” out there. I know different things work for different people. I write to say don’t overlook the role TMJ inflammation may play in perpetuating the rocking. I have experienced episodes of MdDS and vestibular migraine on and off for the last 20 years. The most recent episode followed a seven day cruise and three short flights within a week thereafter (the last one with a head cold). After five weeks of good days and bad days, I noticed that putting any pressure on the side of my jaw where the TMJ is (lying on my side in bed, chewing, resting my head on my hand, etc.) really intensified the rocking. After a few days of taking Aleve, rubbing a pea size of Voltaren cream right on the joint, eating only soft food, and doing some simple jaw relaxing exercises I found on YouTube, the rocking is GONE!!! Hope that may help someone out there. The important thing is to maintain hope and keep trying different things until something eventually works. Believe me, it will! Just got back from Zumba class, which would not have been possible for me a few days ago. Good Luck and Keep The Faith! Remember – We Rock!!! Reply
I’ve had MdDs for almost 11 months. Every single day, I rock, sway, & bob starting in the am and till I go to bed. About a month ago my symptoms went away & I was thrilled. Sadly this week they have reappeared. I am so discouraged. ☹️ Reply
Kristina, please know that you are not alone. Fluctuating symptoms and feeling disheartened are things that many in our community understand. We hope your symptoms abate again, and that you achieve true remission. Meanwhile, we encourage you to connect with MdDS Friends, our support group on Facebook. It is a helpful space to talk with people who truly get what you are going through. Learn more about the group and how to join here: https://mddsfoundation.org/support/ Reply
I’m sorry to hear this. I was diagnosed today after my cruise in April. I am rocking and swaying all day long. Reply
Your story is one of hope, Dakota. Thank you! Your experiences and perspectives offer heartfelt encouragement. Very helpful for many who are looking for a better tomorrow with their MdDS. We look forward to everyones participation in the MdDS Patient Registry in the near future. Perhaps we will identify patterns or strategies that facilitate positive outcomes for the community. Reply
I too was able to resolve my MdDS symptoms, even after a year the 3rd time that I experienced them. Using physical therapy, exercise, and meditation, I thought I had MdDS under control. Until the 4th time the symptoms started following a trip right before the Covid lockdown. That was 7 years ago and not only has nothing helped this time, my symptoms have gotten more severe. So while I congratulate everyone who manages to enjoy the resolution of symptoms, I ask that we not make assumptions based on what works for any one individual. At one time, I was absolutely certain it would always go away on its own, as it did for me three different times … before it didn’t. Reply
Thank you for sharing your experience, Linda. Your perspective is a reminder of how unpredictable MdDS is, even for the same person over time and why we cannot make assumptions based on individual outcomes. To find clear answers, we need comprehensive data. This is why the Foundation is developing the MdDS Patient Registry, currently in beta testing. By collecting data from the MdDS community, we aim to understand symptoms and modifiers (things that increase or reduce severity), track patterns, and identify evidence-based solutions. We invite everyone to learn more about the MdDS Patient Registry here: https://mddsfoundation.org/mdds-patient-registry/ Reply
Linda, I can empathize with you. I have been dealing with this for 27 years, off and on. Usually, the symptoms would resolve on their own, no matter what I tried. But each time I had them, they lasted longer and longer. The previous event lasted 10 and 1/2 months. This last event has been with me for 2 years and 3 months. Some days are a 10, others a 1 or 2. I keep hoping, but it’s very hard at age 77 (almost). Reply
Thank you so much for sharing! I have been struggling off and on for years. My mdds is definitely triggered by boat and plane, but it has also started simultaneously. I have tried many different therapies and nothing has ever worked. Mine seems to come and go as it pleases. No rhyme or reason. I have not tried acupuncture and that might be my next step. Thank you again – very inspirational! Reply
