In September 2017, my husband, my two sons (ages 20 and 21) and myself went on our first cruise, two weeks before the canaries Portugal Spain. All was well on the cruise, none of us were sea sick, but we did have rough days around the bay of biscay.
On return home, my two sons had no adverse affects at all from the cruise, my husband was wobbly for a week, myself however was wobbly from debarkation till today, which is 111 days later!!
I went to see my doctor after 2 weeks – was told I had Labyrinthitis, even though I told him about the cruise, and that I felt like I was still on the ship, swaying unbalanced fullness in ears, etc. Doc prescribed anti nausea meds — lol I wasn’t feeling nauseous — and nasal spray, hence 2 weeks later I am back at the docs, saying I am going crazy, crying , feeling depressed. Next doc prescribed something for people with Ménière’s; this did nothing for me either. I then went to see a chiropractor as I thought he might be able to help. He ruled out a few things by doing rotary test, hall pike manoeuvre, and other tests. I kept searching the Internet by using my symptoms as a guide,
Why do I feel like I am on a boat? Voila MdDS.
I ended up back at my doc, saw an ent doc at hospital, and showed her my notes. She agreed with me about mdds, so now I have just had a MRI, to check my inner ear, I take prozac, also I have gone back on my hrt medication, my symptoms have subsided slightly, I don’t rock , leg gravity is not as bad all the time, light and sound sensitivity is bad, I am hoping I will be one of the lucky ones, who will go into remission, and never get mdds again, this is what we all want. I for one will never go on a cruise again, this syndrome tears families apart
I am lucky to have a very loving supportive husband and sons, I have had to stop working as a childminder, I have also been in touch with royal Caribbean cruises about my mdds, needless to say they have not replied to my email.
Elizabeth Taylor Greenwood
Birmingham, England
A Note from the MdDS Foundation
Please leave a comment with the word phrase you used to find this website. Maybe it was something like, “I was on a cruise and still feel dizzy.” Your exact responses will help us to optimize this site, so that others who are suffering without knowing they have MdDS may find us and get the help they need quickly.
God Bless you and Be with you and all of you
I start a couple of months ago to feel this way to. So I will be writing to you.
I just turned 60 in August and for 11 months I had a lot of stress
I will surely read about this
Thank you and May God Bless You
Francine
Francine, you may be interested in joining one of our Support Groups. Our members from around the world have many experiences to share and can provide advice.
I have had mdds for 12 or 13 years. like so many I was on a cruise and went to Ent speciliest and he diagnosed me with mdds and treated me with clonazepam tablets, which helps a lot. But since I was in a car wreck and got a whiplash it has gotten worse. I am 78 years old. Had to white singing in my church choir due to the dizziness or swaying also had to white nursery keeping babies. It has limited my ability to do much but I keep on trying. I use a cane and it helps me with my balance but seems like it’s gotten worse lately. Glad to hear I am not by myself in this terrible condition
I am wondering if your specialists at Stanford was helpful at all?
My MdDS started after an airplane trip. It subsided after a few days. In 2009 I was on a motor home trip to the foothills in California. A motor home sways. MdDS was triggered ;and hasn’t entirely gone away. After many trips to various doctors, I am going to Stanford on the 10th of July to a specialist. The thing that has helped me the most is to sit and do a calming activity. I colored for a year. I have crocheted and quilted. Luckily I am retired. I would not be able to work with this condition. Many of the activities that I loved doing are very difficult for me to do. Depression is bad at times. Today is a good day.
Take care everyone, you are not alone. Roberta
Hello! Thank you for sharing this! My experience is little different. On Janurya ( 2018) I was full of stress. And my blodpress was not normal. Doctor gave me some Hydrex semi medication. Diuretic. I eat it few days and I feel dizzy al the time. I stopped eating . But dizzines won’t go away. I swingging all the time. I went panic and I go to the ear-nose doctor. He didn’t know what is wrong. MRI says that my brain is ok. Fysiatric-doctor says, that comes from your neck. But my fysioterapist says, that’s not the hole truth about this. OK. But I foud this MdDs paiges and I think I have this syndrome. I dont know yet, how doctor here in Finland relate this. I hope you have strength with this MdDs! ( Sorry, my english is not good😉)
Satu from Finland
We are glad that you found our website, Satu. We have enabled the Finnish translation feature so that your doctors can visit mddsfoundation.org and learn more about MdDS.
Have you joined our online support group on Facebook, MdDS Friends? Our members are from around the globe, and you may find others from Finland. Your English is wonderful so please join us and share experiences.
Kathleen, I’m also from the Central Valley like yourself. I’m looking for a physician to help me with this diagnosis. Can you recommend one? Thank you, Terena, [redacted]@[forprivacy].com
Thank you, Elizabeth & all who commented
I wish I could think clear enough to send in my story, but I’m 81 with severe mdDs & have had it now for twelve years with no remission so I can empathize with all of you & pray for a cure in my lifetime . I no longer have a supportive husband ( he passed away 5years ago ) & although I have six children who understand now what a struggle I’m having, they all but my youngest (55) son live out of town & out of state. I still live alone in my 53 yr. old house & can’t even fathom moving because of all the stuff we’ve acquired ,not to mention all the piles of paperwork I can’t sort, file or toss because of this awful MdDs.
Sorry this sounds like a downer so I will just sign off but know I pray everyday for all of us. For those of you who go into remission, I rejoice & hope I could have just one day without all the symptoms that accompany MdDs
I have had MdDS for ten years. We went on a cruse to Hawaii for our 50th and haven’t been on one since. We’re looking at our 60th in July and would like to go to Alaska but this MdDS is holding us back.
I really hate what this has done to our lives. I’ve been to aboout 8 Doctors, had two MRIs taken, numerous meds, and none of it has helped. My doctors are empathetic, but they are mystified by my symptoms and have no concrete solutions. I went on a diet and lost 40 lbs and I felt better, but it didn’t change anything . My husband and I often wonder is this is my new normal.
The rocking feels like the whole house or ground is shaking. Some days are better than others but the swaying and bobbing never stop. I feel like something is pushing the back of my head, and my ears continually buzz.
I use a walker to give me stability, otherwise I would walk like I am intoxicated. I look normal, so people must think I’m faking this, but it is real.
My husband is a gift. I don’t drive anymore; I don’t sing anymore; l don’t quilt anymore. I exercise in water aerobics three times a week, attend worship and participate and lead a bible study in our home.
Thank you for this opportunity to share my story. It is good to be able to vent. Much love and prayers to all you MdDSers.
Kathleen Martens, Clovis, California
Kathleen, you are welcome to join our online support group and vent all you like. You will find many caring members who understand your situation and questions.
Thank you for sharing your story.
I wish more doctors would be familiar with my far-from-scientific equation: Feeling like the patient is still on the boat after days or weeks on land= possible MdDS. Just knowing to consider this would be a huge step forward for doctors and therapists who we see during our desperate search for a diagnosis.
Have you considered trying vestibular therapy with an occupational therapist? They know a great deal about disorders that affect the brain. I was diagnosed with MdDS during the first five minutes.of my first appointment. The short explanation for me is that my eyes and my brain don’t communicate well. I do daily exercises to work on this and VRT has brought me into remission a few times. After a few episodes , I now do the exercises every day without fail in an attempt to stay in remission. With others, they can also be an issue of integration between the ears and the brain.
I’m grateful for the MdDS Foundation and the power of the internet that allows us to communicate with others who have this rare disorder.
Elizabeth, thank you for posting this, as my experience was exactly the same
I went on an Alaskan cruise with my husband two and a half years ago. We had 17 foot waves but I did not get sick on the ship
The moment I got off the ship I felt Rocky and disoriented, and it never stopped
Two weeks later I went to Doctor Who gave me sea sick meds , it did not work
I was nauseous lost 10 pounds My sensitivity to light was nearly unbearable
Fortunately a few months later I found an ENT that diagnosed me With MdDS My anxiety was so horrible that my primary doctor put me on Effexor, an antidepressant .
Now, 2 1/2 years later, after physical therapy, consistent exercise, and loyal use of Effexor , my symptoms are very mild.
It does not have to ruin your life It Did test my family relationships for a while, but everyone has learned to become supportive and it helps that I’ve been able to manage the symptoms
I’ve come to except that this is my new normal If I continue to get better that would be a delight Like you, I will never go on a cruise again
I’m proud of you for contacting the cruise line. You have inspired me to contact the cruise line I went on as well
Please keep us posted on your well-being
Nina