In January of 2013, my husband and I went on a 7-day cruise to the Southern Caribbean. A life-long traveler, I have been on long duration flights (with and without turbulence) and little sunset cruises, roller coaster rides, Jeep rides across rough terrain… I have never suffered from any form of motion sickness. While on the cruise, we did have some rough weather where we were tossed about a bit but I was fine. When we got off the ship in Aruba, I noticed the sensation of rocking but since I figured I was getting my “land legs” back, I was fine. Once back on board, I didn’t notice any symptoms. After docking back in Ft. Lauderdale, we spent the night and then flew home early the next morning. I felt okay until we landed in Chicago. After the car ride home, I felt awful; exhausted, dizzy, and a bit nauseated.
That following week at work, I was so miserable that I started calling my GP out of pure desperation to figure out what was wrong with me. I was terrified that I had a brain tumor or something really serious. I was in tears over the sensation because I’d never felt something so awful. And I was exhausted, purely exhausted. The rocking and rolling sensation was so bad I literally had to hold onto walls and furniture when walking. My GP called in Scopolamine to see if that mitigated my symptoms. When that failed to work, she prescribed Meclizine; it did nothing for my symptoms.
When I did finally get in to see her, I was told they couldn’t help me and was referred on to an ENT. It was hard to force the ENT’s office to schedule me immediately but I was able to get in several days later. The ENT saw me for a few minutes and confirmed that it was not an inner-ear issue and initially diagnosed me as having MdDS. The ENT prescribed Clonazepam twice daily and referred me on to Dr. Hain. I promptly filled the script and began taking it with the hope that I’d feel better. I was so desperate. I was very disconcerted when I felt completely drugged up by the Clonazepam. The type of work I do requires being mentally sharp and on top of my game at all times. This did NOT work for me. So after two days of being stoned with no reduction of symptoms, I stopped taking the Clonazepam.
Dr. Hain’s office couldn’t get me in for 3 weeks. When I finally got in to meet with him, I was having what I called a “bad” day. I was rocking and rolling all over the place and feeling very discouraged. He ran me through a battery of tests and confirmed that I suffer from migraines and have MdDS. I gathered from our meeting that I could be a poster child for MdDS: female, perimenopausal, late 40s, “high-strung/type A,” suffers from migraines, etc. After much discussion, we decided that I would try to take Venlafaxine ER (Effexor) to see if that would help with my symptoms. I started taking the medication and gradually increased my dosage as Dr. Hain suggested. To date, my symptoms have gotten a bit better but they have not gone away completely. Some days are better than others but I live in a high rise, work in a high rise, ride elevators daily, ride public transit to work, ride in cars, etc. Motion is a part of my everyday life.
Work has been very understanding. When I’m having a bad day, I still go into work and do the best I can. I sit a lot at my job so it’s okay. My symptoms are worse when I am standing or walking.
My husband has also been very supportive, and we’re trying to find the best way to cope with it all. He does get frustrated but not with me, more with the symptoms and my obvious discomfort. He’s been very understanding. We used to go dancing a lot but that’s a bit of a challenge for me now so we just dance when I feel good enough to try.
I try to keep on exercising because it helps with my stress level and some days I actually feel better afterwards. I’ve discovered that the elliptical machine, due to movement of legs and arms, seems to reduce my suffering. I may try to go riding on my bike along the lakefront path this spring and summer. I’m a bit nervous but I refuse to stop doing what I love to do.
I have to watch my sleep and make sure that I don’t get overtired. I tend to exhaust faster than I used to. I also try to eat very healthy and do whatever I can to avoid headaches. Busy patterns really bother me, and I’ve learned to steer clear of places where there will be a lot of noise as I’m very sound sensitive. In fact, all of my senses are a bit “heightened.” Bizarre but true.
I hope for remission and still hope to travel. With careful planning with Dr. Hain, I expect to continue my life as close to normal as I can. I stay positive because, while living with MdDS is challenging, I could be worse off.
7-day cruise, 2013