Hello. 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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June is MdDS Awareness Month, and now is the perfect time to share your experiences and tell your story. We’ve put together some guidelines designed to help you write it and be selected for publication here: mddsfoundation.org/stories/#submit-your-mdds-story.
Nancy,
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.
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
Nancy