My name is Diane Morley. In 2012, my husband and I went on a 8-day cruise to see the fiords. We thought we would do a short cruise to see if we liked it before doing a big one. We had a wonderful time but the second day on board we had a storm hit us. The tables had cling film on them to stop drinks falling off. We went to bed, and it was like being in a washing machine. The following day it was fine, and we finished our trip. On getting off-ship in Dover I was fine. Later that day I did not feel ok. I thought I had vertigo. The feeling of being on a ship was there all the time.
Went to my GP, who sent me to ENT. I was told I had ppbv [sic] which causes this feeling. I was given an Epley Maneuver to put the crystals back into my ear [sic]. It never worked; I had more Epley Maneuvers. They made me feel worse. Then I was lucky to see a consultant that knew about MdDS; I was diagnosed. I went to a London hospital seeking treatment but nothing has worked.
My husband has found it very hard to help me. He has struggled to understand just what is happening. We had bad times and tears, but then unless you have this it’s hard to understand just what it is like. After looking online, l found the MdDS support site and applied to join. From there I got so much help.
Life has changed so much, no remission. Never been back on a ship. Can’t go in swimming pool or never water. Taking a bath is a nightmare. Can’t go on the swings with my granddaughters as the soft matting ’round them makes me ill. Have trouble wearing shoes that have not got hard soles; can’t wear them with the padding in. Noise and lights effect me also. A few weeks ago I had ear infection and have ended up with tinnitus. My whole world seemed to have ended. No balance now no silence. Again, MdDS Friends online helped me. They’ve given me hope that one day I will come home from the sea and be me once again. Being in touch with others can help you, too. Here is where to find MdDS Friends: www.facebook.com/groups/MdDSfriends
~Diane Morley
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Hi Diane, l am Linda Birge. I was diagnosed with MdDS in 2012 after an Alaska cruise. I have been to Drs from Dallas,TX to Lubbock,TX and in June, 2018 I went to NYC to Icahn School of Medicine at Mount Sinai. I saw Dr Mingjia Dia and Dr Sergei Yakushin. I had 5 treatments but I didn’t respond to the therapy that they had developed for MdDS. Have never been in remission. Did not take any medication for my symptoms. Sure hope someday to stop the motion of rocking, bobbing and swinging.