Don't Write Off These Symptoms As "Just Anxiety"

Photographed by Alexandra Gavillet.
When Rachel Romu, a 24-year-old from Toronto, was around 16 years old, she remembers starting to randomly feel really off. Her heart would race rapidly, she felt dizzy when she stood up, and sometimes she would faint and black out. Her doctors said her symptoms must just be a panic attack or sign of an anxiety disorder. "I was getting sent home, and I was getting ignored," she says.
But Romu sensed that her fainting episodes were something bigger than panic attacks, because they often left her unconscious, but when she was able to lie down, her symptoms would improve. "I didn't know how to manage or identify [my symptoms], nor how to allow myself to take the time to deal with the symptoms day to day," she says. At the age of 23, a whopping seven years later, she got a diagnosis: she had dysautonomia and Ehlers-Danlos syndrome.
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Dysautonomia refers to a group of disorders that affect a person's autonomic nervous system, which controls "all the stuff you don't think about," like heart rate, blood pressure, body temperature, bowels, bladder function, and more, explains Blair Grubb, MD, a medical advisor for Dysautonomia International. When a person has dysautonomia, all of these otherwise involuntary bodily functions can stop working, which contributes to a host of vague but sometimes debilitating symptoms. "The things you take for granted that will happen automatically no longer occur," Dr. Grubb says.

[Dysautonomia] doesn't mean we can't do things, it just means we need to do things differently, and it means that we might need rest in ways that seem strange.

Rachel Romu
Since "dysautonomia" is an umbrella term for several different illnesses, its scope is pretty broad, Dr. Grubb says. According to Dysautonomia International, an estimated 70 million people worldwide live with various forms of the disorder. One of the most common forms is postural orthostatic tachycardia syndrome aka POTS, and the majority of people with POTS are young women, between the ages of 13 and 50, according to a 2014 study. The female to male ratio for POTS is 5 to 1, and an estimated 1 to 3 million adults in the U.S. have it, according to the National Institutes for Health.
Usually, dysautonomia is diagnosed through a series of tests that measure autonomic system functioning, although it can vary based on the specific disorder that someone has. For POTS in particular, doctors use something called a "tilt table test," in which a patient's blood pressure is checked while they're lying down, then at varying angles, according to Dysautonomia International. If their heart rate increases 30 beats per minute or more, or over 120 bpm within the first 10 minutes of standing, they'd be diagnosed with POTS.
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There is currently no cure for dysautonomia, which means people diagnosed with it simply have to learn to manage their symptoms. Some find that keeping their head elevated while sleeping helps with the dizziness, while others are careful to eat a high-salt diet, drink lots of water, and occasionally get an IV of saline; this helps increase blood volume which can be low in POTS sufferers. Careful exercise may also help to manage the symptoms, according to Lauren Stiles, president of Dysautonomia International, who also suffers from the disorder.
These days, Romu says she is constantly fatigued, lightheaded, and frequently struggles with a racing heart. "These sort of symptoms get aggravated to where it can wreck my whole day," she says. Recently, she fainted in her bathtub despite taking very cautious measures to ensure it wouldn't happen. "It's as involuntary as a sneeze, like you can't make it not happen, but there's certain things that, lifestyle-wise, I have to do to mitigate risk," she says.

The majority of patients with dysautonomia have their symptoms blamed on some version of, 'it's all in your head.'

Lauren Stiles, president of Dysautonomia International
For example, Romu drinks special soda water to ensure that she's getting enough sodium. As a result of her EDS, and a spinal tumor she had removed, she uses a cane to get around.
"[Dysautonomia] doesn't mean we can't do things, it just means we need to do things differently, and it means that we might need rest in ways that seem strange," she says. Romu still needs to have more tests done to confirm that she has POTS, although symptomatically she seems to fit the description.
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The average time it takes to diagnose POTS in a patient is four years and two months, says Stiles. When she was 31, she sustained a concussion while snowboarding. Within a few days, she couldn't stand up without fainting, but no one could tell her why, she says. The majority of patients with dysautonomia have their symptoms blamed on some version of, "it's all in your head," Stiles says. Over the course of two years, Stiles was mostly bedridden and saw dozens of doctors.
There are a couple of reasons why it takes so long for doctors to diagnose dysautonomia. For starters, there aren't a lot of specialized autonomic treatment centers around the country, and since symptoms can arise after another traumatic event, like an injury, accident, or even pregnancy, it can be hard to pinpoint. And, because the symptoms can seem vague or random, it takes time for patients and doctors to realize that there is an autonomic component to even look into specialized clinics for testing, according to Lucy Norcliffe-Kaufmann, PhD associate director of NYU Langone's Dysautonomia Center.
Romu had a similarly frustrating experience when she first sought treatment. "I found that, as a woman in particular, you go into the doctor's office screaming or really complaining, and they try to diagnose you with an anxiety disorder," Romu says. "Realistically, when you do have your heart start to race it can aggravate anxiety-style symptoms, but it was a physiological response they were missing the whole time."
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Dr. Grubb agrees that dysautonomia doesn't get the attention it deserves because it disproportionately affects women. "If men were affected more, then it would become more important — but unfortunately because it affects women, it makes it seem 'less important,'" he says. At the moment, there's a real need for more research funding for dysautonomia, and also awareness among medical professionals. "Talk to your doctors about this and ask them if they've heard of POTS," Stiles suggests.
It's also important to advocate for yourself as a patient. If you think you're being disbelieved by your doctor, go to another one until you feel heard — after all, nobody knows your body like you.
October is Dysautonomia Awareness Month. To learn more or find out ways to help, click here.
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