You’re not in the boat alone.

NancyAHello. Let me start by saying I have NEVER in my life participated in any type of blog, etc. But I find sometimes this disorder gets to be more than I can handle and I find great comfort looking at the stories. Like others, I feel I am not crazy when I identify with almost every story I read. 

I have not been officially diagnosed, and I have not undergone MRIs, cat scans, or neurological testing. The farthest I have gone was my GP, ENT, who sent me to a physical therapist, who basically did some maneuvers and said, “Well, we ruled out the scary stuff but I can’t help you.”

Mine started while on a 7-day cruise in Hawaii in September 2015, a dream all-expense-paid vacation from my husband’s employer for his 30 years of service! MdDS is the souvenir I brought home with me. I thought I was going nuts! My boat never stopped rocking, bobbing, swaying, pulling. I felt like I was constantly walking on a trampoline. And those aisles in a grocery store… forget it! This lasted for a year and a half. Then I got a really bad ear infection. My ENT cauterized something in my ear and treated me with steroids and antibiotics. And my world became still! I stayed this way for about 10 months. Then I dealt with a severe setback with an autoimmune disease I also have, right in the middle of an extremely stressful time. I was distraught with these other things in my life, and the rocking, swaying and bobbing began again. This time it lasted for about 10 months. 

Then it just stopped.

I was hesitant to go white water rafting for the first time last summer with family and friends. But I thought, “Screw it! I am not gonna live my life in fear,” and it was great! So I got a reprieve for another ~10 months. Something has triggered it again, and this time is more bothersome and exhausting. I don’t even know what could’ve brought it on, other than we have been doing a lot of DIY home improvement and I have been climbing up and down ladders and stools.

I am like the happy dog going for a ride just because it gives me a break.

Even before I started researching this condition, I knew my only reprieve or sense of normalcy was riding in a car. Sometimes on my lunch break, I just drive! I refuse to let this rule me. And as I prepare for my first grandchild in August, I refuse to let this stand in my way of being active and involved in her life!

I know there are so many more devastating and debilitating diseases that people deal with so I try not to feel too sorry for myself. And I do find comfort in reading your stories, and knowing that I am not alone in the boat. I hope my story helps you know that neither are you.

Nancy A.
Cruise-triggered, 51 at onset

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Discussion Policy
  1. Teresa Thorne

    I am not a blogger, either. MdDS was also the result of a seven day cruise 18 months ago. I self-diagnosed at first and did all of the vertigo exercises I could find (I am a yoga teacher with a strong sense of body awareness). Practicing and teaching yoga make the swaying WORSE- not better. My meditation practice has come to a halt for the same reason. Everything that has kept me healthy and balanced for the past 30 years now has the opposite effect.
    I had the Epley maneuvers and do not have vertigo. Saw an ENT who diagnosed amitriptyline. The side effects of that were TRUE vertigo – I literally bounced off the walls and fell several times. Saw a neurologist and she suggested Topomax, saying that MdDS is part of the migraine syndrome (I don’t have migraines but do get carsick easily. I was NOT sick on the boat.) Same effects as amitriptyline plus strong withdrawal symptoms. My MRI is clear and excellent. The Physical Therapist I saw said he couldn’t help but suggested a clinic in Chicago that an otologist had opened. But it has closed down due to lack of effectiveness of that technique.
    I’ve tried accupuncture – there is a clinic in Taiwan with a specific protocol for MdDS that my body worker found and tried. I had a few initial positive days and then was back on the boat. Also have tried feverfew, gingko biloba, melatonin and CBD oil – all with no effects.
    The only marginal relief I get is from Valium – low dose of 2 mg in the am and pm. No adverse affects but still sway. It just softens the blows.
    I have never had it just stop. Fortunately there is the car and the lawn mower. And I can read as long as I stay still.
    Are there any suggestions out there?
    People just don’t realize how this changes your life. Never in my wildest dreams would I have imagined such a result from a lovely vacation.

  2. Nancy

    Hello Nancy!

    Fellow Nancy here. Thank you so much for posting this email [sic] and letting every reader find comfort in your words. I have been working through this awful “floaty” feeling with the help of my physiotherapist. I haven’t been diagnosed with MdDs but when I read about it, it’s crystal clear this is my issue. There truly isn’t that much out there for it. It started while on a 4-hour commute on a coach bus and a stuff nose later that night. I was experiencing some sinus issues (for the first time) as well, but over the course of my experience in the last 3 months. I’m part of a support group as of yesterday and it’s been so helpful to hear others going through this specific experience. Thank you for sharing <3


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