On Crowd.Science we are currently raising funds for research into Mal de Debarquement Sundrome (MddS) through this campaign. Read on to learn more about patient stories, this is the first of two stories that we will be publishing in our blog.
Before 2017 I had never heard of Mal de Debarquement Syndrome. I still wish I never had a reason to know what it is. But on January 6, 2017 my experience with having it began. I was 30 years old. A few days after a New Years holiday to British Colmbia with extended family, which involved flights from the East Coast of the US to the West Coast of Canada, long, winding drives through the mountains, and a snowmobiling outing, I was suddenly struck by a strong rocking sensation that would not go away. It also happened to be the first day of my menstrual cycle when it came on. After trips to my primary care doctor, it was determined that I had a very mild case of the Shingles on my scalp, and this was likely due to that and would pass within a few days to a week.
Fast forward to April, after having seen several different doctors – my primary care and two ENTs – and trying several different tests/therapies – multiple physical therapy sessions, a round of steroids, an MRI and a hearing test, acupuncture, massage – I finally saw an otoneurologist who specialized in dizziness and told me that he suspected I had MdDS. He felt it was caused by a combination of the shingles virus, snowmobiling, and potentially hormonal changes at the time of onset. Up until my diagnosis I was scared and frustrated at having no answers about what was happening, but once I was diagnosed, I was even more scared and frustrated as I tried to understand what this meant and what the prognosis looked like. The information from my doctor was very vague – I didn’t feel like there was an answer to anything I asked. This led me to searching on Google where I encountered very bleak stories that only made me fear the worst – that this would ruin my life and may never go away. What was initially a physical battle with the symptoms quickly became the hardest emotional battle of my life, and took a major toll on my mental health as anxiety and depression set in.
My husband and I had wanted to start trying to have a family as soon as we returned from our trip but put that on hold because of MdDS – now I wondered, would I be able to care for a child? Would I feel this miserable for the rest of my life? What would this mean for my future? What if I could no longer work? I also worried about if this went away, would it come back and what could I do to help avoid it coming back? What sorts of things should I avoid? What would retrigger it? I analyzed every scenario and drove myself crazy wondering. For the next several months, as I struggled through the day to day symptoms, I was drowning in the “what ifs” – not having information about why this was happening and what to do to manage it was isolating and terrifying. How come so many doctors didn’t know about it? Why wasn’t there more information-sharing in the medical community about this? What was going to happen to me? I wanted to have hope, and I wanted to search for concrete information, but I didn’t know how or where – it didn’t seem to exist, and I didn’t want to keep going down the rabbit hole of stories on the internet – there weren’t many hopeful ones. It was also very hard to explain to people since it is a largely unknown, invisible disease.
Eventually I sought the help of a therapist to help me manage the mental health aspect of dealing with this as that had become my biggest problem. Though somewhat torturous, I was managing the symptoms on a day to day basis. I continued to work and socialize but I needed to learn how to cope with the unknowns of having MdDS. The extremely strong symptoms of rocking and gravitational pull from the first few months had lessened and were much more bearable with time. However, it severely impacted a lot of the things I loved – I could no longer do stationary cycling classes or boating, running on a treadmill, and I worried a lot about air travel – I could handle giving the first two up, but what about flying? How much of a risk was this?
Living near New York, I sought the help of Dr. Sergei Yakushin and Dr. Mingjia Dai who were working on a treatment at Mt. Sinai. I took a medical leave from work in order to do the treatment. At the time my symptoms were very low, but what was most helpful was getting some information and reassurance from them. There were no guarantees of what the future looked like for me, but they provided me with a lot of hope and the feeling of talking with someone who actually KNEW a lot about MdDS was such a relief.
Over the course of the next year and a half, my symptoms remained mostly low, coming and going until they eventually faded away. I gave birth to a beautiful daughter in November 2018 and am expecting my second child in September 2020. I am so thankful to have MdDS behind me, but I am still haunted by the unknowns of it, if it will ever come back, and what I can do to prevent a relapse. I don’t know Vivi but I am so grateful to her and the other researchers that are working to demystify this troubling illness and help us find answers, treatments and hopefully a cure. If only I had the means to fund their whole study! I always say that if I were to win the lottery, it is the first thing I would spend my money on – that’s how much it means to me. MdDS has forever changed me and I will continue to support research through donations and advocacy in order to bring awareness to this rare disease and to support these folks as they help us in our fight for answers.
MdDS sufferer – Preferred to be anonymous
If this story resonates with you and you would like to help, please support MdDS research through our Crowd.Science campaign