Be your own advocate.
I am 65 years old and live in Atlanta, Georgia. In June, 2010 MdDS changed my life.
My symptoms started while my husband and I were aboard a ship waiting to disembark from a long anticipated one week Alaskan cruise to celebrate our 40th anniversary. During the month before our trip I experienced vague and intermittent symptoms of dizziness and headaches. The headaches were no big surprise; I am from a family of migraneurs and had previously had a few episodes of migraines. The dizziness was odd, but I thought maybe it was a virus. No need to cancel the trip of a lifetime for a few mild symptoms!
Alaskan cruises provide an opportunity to see amazing scenery and wildlife through a variety of motion experiences – 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 Mal de Debarquement Syndrome.
Minutes after my ship docked I sensed that it was still moving. Within a week, I was dizzy, confused, my head ached, and I could barely walk.
I was fortunate that my internist quickly referred me to a neurotologist. At the neurotologist’s office I was asked some very strange questions. Had I recently been on a cruise? Did I feel that I was still “on the boat”? Was I dizzy? Was I rocking? After the fourth “yes” I was diagnosed with an illness I had never known existed.
My pleasant life as a young, active retiree and grandma quickly vanished. Before MdDS I was taking adult education classes, enjoying a book group, participating as an active member of a women’s organization, exercising at the gym, and spending time with my granddaughters. After the rocking began I dozed most of the day, tripped on stairs, walked into walls, and suffered from unbearable headaches. Instead of looking forward to my son’s wedding and later the birth of his son, I worried about not being able to enjoy his wedding, and not being able to carry his baby safely.
My first bout of MdDS lasted five months. Early diagnosis, compliance with prescribed eye and balance exercises, medication, and good luck brought about a remission. The vestibular migraine headaches that often accompany MdDS have been more difficult to treat.
After being rock-free for two years, the physical stress of an unrelated illness set the stage for a second bout of MdDS. This bout lasted for eight months.
MdDS is an insidious illness. Outgoing, active, productive members of society can quickly become housebound. Cognitive abilities are often diminished, and can become further diminished by medicines used to treat the disorder. Automatic tasks turn into nearly impossible chores. Severe exhaustion sets in. Some people spend years dealing with weird symptoms and being shuffled from specialist to specialist. Since most ENT’s and neurologists have never seen a case of MdDS, they order many expensive tests that reveal nothing. No wonder anxiety and depression often come into play!
MdDS has taught me that both patients and their medical providers have responsibilities.
- PARTICIPATE IN THE PROCESS: Keep a medical journal with your health history, symptoms, and notes from previous appointments. Bring it to all appointments, and use it to jot down questions that occur to you between doctor’s visits.
- BE YOUR OWN ADVOCATE: Read peer-reviewed studies by well-respected medical researchers and bring them to your doctor’s attention. You don’t have to be a scientist to understand the abstract and the conclusion of a study.
- GET SUPPORT: Look into traditional face-to-face support groups and online support groups. Listen to advice that seems right to you, but realize that each case is unique.
- LISTEN TO US carefully. Don’t dismiss our symptoms. Many of us have severe depression and/or anxiety, adding an additional layer of difficulty and complication to our lives. Please remember that we’ve been blindsided by a vestibular disorder that has significantly altered our quality of life.
- BELIEVE US when we describe our debilitating symptoms. Understand the desperation that comes from not being able to do the things we used to do easily, from complete exhaustion, and from having an illness that is poorly understood by our families, friends, employers and physicians.
- DON’T GIVE UP ON US when our medical problems are not quickly resolved. We also wish that our condition required less of your time.
- Since little is known about MdDS, there is no accepted protocol for treatment. Work with us to develop a treatment plan, and be prepared to try other approaches when appropriate.
- Please don’t dismiss us by saying “there is nothing I can do,” or “just live with it.” If you cannot help us, please try to help us find another viable option for treatment.
The suggestions above describe ways to help make the treatment for MdDS and other vestibular disorders more effective. After all, metaphorically, we are all in the same boat.
For more information on MdDS:
Click here to read VeDA’s publication on MdDS.
Click here to visit the MdDS Foundation website.