The cruise was a long anticipated celebration of our 40th wedding anniversary. We had a wonderful time, until shortly after the ship docked at our final port. I sensed that the boat was still moving, despite evidence to the contrary that its passengers were disembarking. Three days of dry land in Vancouver did not lessen that feeling and by the time we returned home I felt quite ill.
Alaskan cruises provide the opportunity to see amazing scenery and wildlife through a variety of motion experiences. We disembarked from the ship at several ports and went on trains, buses, seaplanes, dogsled rides, helicopters, ferries, and fishing boats. A dream come true for most passengers; a nightmare for a passenger whose souvenir is a full-blown case of MdDS.
I was fortunate that my internist quickly referred me to a neuro-otologist. Within 10 minutes, a vestibular therapist in that office diagnosed me with MdDS.
My first bout of rocking lasted five months. I know that I recovered because of early diagnosis; compliance with prescribed eye and balance exercises; medication; and sheer luck. The accompanying severe and disabling migraine headaches were much more difficult to resolve. It took 18 months of hard work, frequent office visits, and many after-hours phone calls for my very patient neurologist to come up with a combination of medications that has worked pretty well for me.
After breathing a deep sigh of relief that I finally had my life back, in the fall of 2012 I became ill with a serious bout of GastroEsophageal Reflux Disease. The stress of this illness brought on the Return of the Rock. Fortunately, the second bout of MdDS was briefer and less severe. The resolution of the GERD and another medicine change were successful in bringing round two to an end.
Because I was no longer working and my children were grown, I did not have many responsibilities. But my very pleasant life of taking adult education classes, enjoying a book group, chairing a committee for a major annual book festival, being an active member of a women’s organization, exercising at the gym, and spending time with my granddaughters seemed to vanish overnight. My time was spent at home on the couch, watching television shows that required no plot to follow, and dozing the day away. The migraine component of the illness was extremely painful and required strong medicines and even more sleeping. Instead of looking forward to my son’s wedding (during my first episode) and the birth of his son (during my second episode), I worried about not being able to enjoy his wedding and not being able to carry his baby safely.
MdDS is a particularly insidious illness. Outgoing, active, productive members of society can quickly become housebound and become a burden to others. Performing daily activities that were once automatic can become nearly impossible chores. Some of us have few outside responsibilities and are lucky to have the time to rest endlessly. Those who have jobs and/or family responsibilities have a much tougher time meeting the needs of their spouses, children, and employers.
MdDS is also an illness that is not well understood by patients and their health care providers. Appointments can be frustrating experiences for both sides. Patients expect doctors to solve medical problems and when they cannot do so, the level of frustration rises. Most doctors have little experience dealing with this rare disorder with a hard-to-pronounce name and strange symptoms. I think that some of this frustration can be lessened by relaying information that would be helpful to both groups.
Some information I think may be helpful to patients is:
- PARTICIPATE IN THE PROCESS — Keep a complete medical journal of your health history, descriptions of your symptoms, and notes from previous appointments. Bring it to every medical appointment along with a written list of questions that occur to you between appointments. We tend to forget medical problems that have been resolved in the past but may be relevant to current problems. This is especially important if you relocate and need to change your physicians.
- BE YOUR OWN ADVOCATE — Read the peer-reviewed studies by leading, well-respected MdDS researchers listed on the MdDS website. The Internet makes it easy to find the papers. Even if you don’t understand the hard science, you can understand the abstract and the conclusion of the study. Avoid articles about individual cases (they reek of sensationalism) and do not overwhelm the doctor with more than one or two articles at each visit. A caring and interested doctor will appreciate the information and your attempt to be a partner in your health care. And if he or she has already read the article, you’ll know you are in the right place! The National Organization for Rare Diseases states that there are over 7,000 rare diseases. No one can know about them all, but the doctor you choose should be willing to understand that you have one of the 7,000 rare diseases and be willing to learn about it. If a doctor dismisses your symptoms, do some research and find one who won’t dismiss your symptoms.
Some information that I think may be helpful to doctors is:
- LISTEN TO US carefully and don’t dismiss our odd symptoms. We move, we tilt, we lean, we bounce, we sway, we rock and we’re dizzy. Our symptoms can change from day to day, even hour to hour. Many of us have severe migraines that add an additional dimension of misery. Our goal is not to involve you in signing forms for disability coverage; we’d much prefer to be back where we were before MdDS changed our quality of life.
- BELIEVE US when we explain how debilitating MdDS symptoms can be and try to understand the desperation that arises from not being able to do the things we used to do easily and having an illness that is poorly understood by our families, friends, and employers.
- DON’T GIVE UP ON US when our medical problems are not quickly and successfully treated. We wish we had a condition that required less of your time and could be resolved with a prescription for an antibiotic.
I cannot agree with those who say that everything happens for a reason. There is no rational way to understand why my life has been derailed for nearly three years. But I can say that MdDS has taught me to be more compassionate about the both the visible and the invisible handicaps that so many people face; to be grateful for the support of my friends and family; and to be amazed at the power of the Internet to bring my story to the attention of doctors and patients alike.