In July 2011, I returned to the U.S. via airplane from a trip abroad. The flight was unremarkable, and I disembarked without an issue, unpacked my things and prepared myself mentally for the return to work. I was a little under the weather on my trip. I had a mild cold and for the first time ever, experienced the joy of spinning vertigo. Needless to say, I wasn’t feeling relaxed and rested. And I was returning to a very stressful work situation. As I sat down in my office Monday morning, I started to feel the heavy-headedness. I got up to walk to the office kitchen, then BOOM, I was listing forward, then to the left. I powered through the day but was alarmed.
I’ll roll quickly through the nightmare of getting to a diagnosis. Went to see a GP who hypothesized labrynthitis, an ENT who wanted to test me for atypical Meniere’s, another ENT who could find no nerve damage or sign of inner ear issues who referred me to a neurologist. A neurologist who felt it might be basilar migraine. I had two MRIs, an ECOG, an EEG, vestibular rehab. I took a series of medications that made me increasingly ill. My symptoms were getting worse and worse, and then migraines started kicking in after two months. By four months after onset, I was unable to work or to care for myself properly.
Thankfully, my family and friends helped me connect with Dr. Zee’s office at Johns Hopkins who, in turn, referred me to a doctor at Mt. Sinai in NYC. The doctor reviewed all my medical documents, did her own work-up and diagnosed me with MdDS. That same day, she introduced me to Dr. Dai and invited me to participate in his research protocol.
When I found out that his approach involved no meds and was non-invasive, I was happy to raise my hand and give it a shot. The protocol involved measuring my perceived and actual imbalance. The first step was to measure my perceived rocking by attaching a sensor to my wrist and using my arm to demonstrate the tempo of my rock. The second step involved standing on a Nintendo Wii board (no kidding) and measuring my actual imbalance as I wobbled around on the board with my eyes open and then closed. The third step involved wearing a pair of goggles that recorded my eye movements while the doctor moved my head gently back and forth.
Dr. Dai took all of these measurements and used them to create a custom “treatment.” I was asked to sit in a chair and to keep my eyes open to view black and white stripes on a wall, while Dai moved my head back and forth. My treatment lasted all of two minutes. Afterward, I was pretty disoriented. After all, I was very sensitive to complex visuals and had been suffering from intense migraines for the past two months. So I had to get my bearings after leaving the chair.
Dr. Dai asked me how I felt and to take a walk down the hallway to adjust. The first thing I noticed was an immediate lifting of head pressure on my right side that had been plaguing me for nearly five months. And though I felt a little out of it, I thought maybe, just maybe, my balance was better. Much better. It seemed kind of miraculous but too soon to declare it a success.
I skipped across Central Park on my way home that day, looking silly but hey, it’s NYC and no one cares there. The relief was noticeable. I walked into the lab at a level 7–8 symptom-wise and left on a level 4.
As the days went on, I felt pretty ill and my symptoms rose. Looking back on it, we think the treatment likely triggered a migraine, like so many other tests had in the past. But eventually things settled. I came back to visit Dr. Dai a month after the first treatment. He put me on the Nintendo Wii board, and my rocking had diminished considerably. My balance was pretty much normal. And when I went to close my eyes and march in place, I no longer drifted significantly to one side.
Dr. Dai’s research “righted” something in my brain. I have never returned to that acute level of symptoms that I was experiencing before diagnosis. I’m not symptom-free, and while I’ve worked with Dai to try to eliminate my residual symptoms, I’m still at a level 2–3 these days. Regardless, Dr. Dai gave me a new lease on life after an incredibly painful and bewildering period.
Today, 2.5 years after onset, I’m debating whether to accept my new normal and build my life around this or to continue to fight for remission. Before MdDS, I had no health issues. I was very active and ran marathons. I travelled internationally quite a bit. I also built and ran tech start-ups for a living. My work and personal life were “always on” as you might expect from someone who lives in the city that never sleeps.
Now I sleep quite a bit. Life has slowed down considerably, and I am no longer working full-time, which is difficult for me to accept. I’ve also left NYC for a sunnier, more laid-back climate.
I think I’m healing albeit very slowly. When I have a “bad day,” it usually means that I have increased pressure in my head, a very jittery gaze, overwhelming fatigue and brain fog. I feel a pulsation on the right side of my head constantly – it never goes away but sometimes it gets “louder.” I have chosen the no meds route because I am so med-sensitive, but I do take valium when traveling or when I’m really feeling rough. I’ve only had three zero-symptoms days since onset and I can’t tell you why they happen, but I can tell you that I was absolutely euphoric when they did. I do gentle flow yoga, which sometimes helps reduce anxiety and improve my energy levels. I’ve also started a new vestibular therapy regimen in the hope that I can re-train my stubborn brain that refuses to unlearn this rocking business.
On the flip side, in the past couple of years, I’ve also managed to run a few (wobbly) races again, travel all over the U.S. and even abroad, spend more time with my family and get engaged to a very supportive gentleman. I know how fortunate I am and credit Dr. Dai with enabling me to enjoy life more fully in spite of my diagnosis.
MdDS has rocked my world. I’ve had to re-evaluate everything and at a certain point, I feel like it’s a bit of overkill on the soul-searching. I’m not sure I’m that much wiser or better for having this condition but I think ultimately, it will help me prioritize what really matters in life – health, family, friends. I’m thinking of all of you friends going through this and wishing us all steadier days ahead.
Trans-Atlantic flight, 2011
To learn about typical and atypical symptoms and the MdDS Symptom Severity Scale, please click here.
The MdDS Foundation encourages research and clinical studies such as the one mentioned here. By publishing this story, no endorsement by the MdDS Foundation is implied. For further information, please read our Medical Disclaimer