After touring the world for years as a skater with Disney on Ice, I knew that ice skaters rarely got dizzy, having been trained to spin faster and faster. So last year when, while coaching, I simply turned around and suddenly felt dizzy and off-balance, I knew something was very wrong. In the days that followed, I felt short of breath just reading to my toddler. I went to the ER when I felt my heart beating out of rhythm and was so weak I could barely hold my head up. The doctors found that my thyroid levels were off and I was dehydrated, but they didn’t know why.
Over the following months, I experienced more symptoms—including ringing in my ears, tremors, and blurred vision—but the doctors still couldn’t figure out what was wrong. During a pulmonary function test that involved blowing into a tube, I ended up slumped over, hyperventilating, and barely able to respond. At another exam, during a hearing test, the entire left side of my body began to go numb and the room started spinning. The next morning, the left side of my face drooped. I went through more than 30 tests, but based on the results, nothing was wrong with me.
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The winding path to diagnosis
At this point, I was too dizzy and my heart was too unpredictable for skating, so I stopped teaching indefinitely to focus on recovering.
Then, several months later, my primary care provider mentioned a condition called dysautonomia in which the autonomic nervous system—which controls things like the heartbeat, digestion, circulation, and breathing—doesn’t work properly. I found a neurologist who specialized in the condition, and he ran several tests, including a tilt-table test and one in which I wore a blood pressure cuff overnight. He confirmed the diagnosis. I learned that there is no cure for dysautonomia, but as a skater I was used to falling down and then getting right back up, so I asked my doctor, “Now that we know what it is, how can I improve my symptoms?” He said, “You just need to drink water and rest, because any physical exertion triggers the symptoms.” So I passed nine months knitting, watching TV, and spending time with our 4-year-old daughter, which was a real gift.
Then I was referred to the Abilities Research Center at Mount Sinai, in New York City, and that was a game changer. We are working on slowly reintroducing activity while managing flare-ups and triggers. The program Stasis has been incredibly helpful too; it teaches people to use breath work to calm the autonomic system, which lowers heart rate, making it easier to breathe and manage symptoms. I continue to rest, drink 170 oz of water a day, take 4,000 mg of sodium through electrolytes, and wear compression stockings to help keep my blood flowing through my system.
How I manage my condition today
With dysautonomia, there are flare-ups, setbacks, and moments of feeling better. I’ve started coaching again, but instead of 65 students, I have two, and I love every moment with them. I’m staying positive, and I feel so fortunate to have found a direction for my energy. At one point I saw someone at the Center on a treadmill and said to my doctor, “That’s my dream, to be able to do that again.” She told me that a long time ago he’d been where I was. I have no doubt that I’ll eventually be on that treadmill again too.
What is dysautonomia?
Dysautonomia is an umbrella category for a number of diagnoses that involve an imbalance of the autonomic nervous system, which controls functions such as heartbeat, breathing, and digestion, explains Amy Kontorovich, M.D., Ph.D., an associate professor of medicine and cardiology at the Icahn School of Medicine at Mount Sinai. Though it’s estimated that dysautonomia affects more than 70 million people worldwide, it is often misdiagnosed or missed altogether. “There is no biomarker or objective test that can diagnose dysautonomia at large, though some tests can diagnose specific subtypes,” Dr. Kontorovich says. Dysautonomia can occur by itself or can be related to another disease such as diabetes, a connective tissue disorder, or lupus. It can be triggered or exacerbated by a virus and has been associated with long COVID. Symptoms of dysautonomia tend to get worse with physical and mental exertion.
Symptoms can include:
- Dizziness Fatigue
- Balance problems
- Shortness of breath
- Heart palpitations
Right now there’s no cure for dysautonomia. But a regimen that focuses on improving blood volume and circulation through the patient’s wearing compression garments, taking in sufficient fluid and sodium, and doing rehab can improve the symptoms and in some cases resolve them completely, Dr. Kontorovich says.
TELL US ABOUT YOUR DIAGNOSIS Did you have symptoms that took a while to get properly diagnosed? We’d love to hear your story. Write to [email protected].