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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  1. Nancy

    Hello Nancy!

    Fellow Nancy here. Thank you so much for posting this email 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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