A diagnosis of dysautonomia sheds new light on Sarah’s pain

Sarah in Wyoming after being treated for dysautonomia.

Sarah exudes vivaciousness and warmth. When describing her favorite activities, mainly swimming and rugby, her energy is infectious. It is hard to imagine that someone as lively as Sarah has been suffering from chronic pain her whole life.

Since she was little, Sarah has struggled with Irritable Bowel Syndrome (IBS), a common intestinal disorder that causes stomach pain and colon issues. However, it wasn’t until her junior year of college that she started experiencing symptoms that were no longer recognizable. “My local gastroenterologist kept giving me treatments that weren’t doing anything,” Sarah remembers. “So it kind of occurred to me and my parents after a while that maybe this is more of a brain-thing than a stomach-thing.”

Sarah started experiencing extreme fatigue, nausea, and vertigo. She tried to write off her symptoms as normal bodily functions, but when the migraines started, she knew something was indisputably wrong.

A second opinion from Boston Children’s Hospital

Searching for the cause of her new symptoms, Sarah made an appointment with Dr. Alyssa Lebel in the Headache Program at Boston Children’s Hospital. Sarah’s migraines, in addition to her other symptoms, were a key sign to Lebel that something was awry in her autonomic nervous system (ANS). The ANS controls the body’s vital signs, including internal temperature, breathing patterns, blood pressure, heart rate, digestion, and pupil dilation.

Lebel asked Sarah detailed questions about her symptoms and bodily changes. “Dr. Lebel saw that I had really dilated pupils, I had strong reflexes and my hands were really sweaty,” says Sarah. “She asked all these things that resonated with me that I had never really thought about.”

Unbeknownst to Sarah, migraines and the ANS are closely tied.

“Having migraines disrupts autonomic function,” Lebel explains. “We are wired as humans to have a reactive autonomic nervous system, and that allows us to respond in a moment notice to a stressor that we need to defend against, like the saber tooth tiger.”

However, for patients with pain disorders, their bodies struggle to regulate their ANS.  Patients like Sarah have an increased frequency of ANS activity that reacts to unthreatening stimuli, such as changing posture or gentle exercise. Often, the ANS can fire off on its own without any stimulus. This over-sensitivity is both debilitating for the patient and harmful to the body’s homeostasis.

“Being diagnosed was very empowering. It didn’t make the symptoms better, but it was nice to have a name.”

 

Taking into account all of her symptoms, Sarah was diagnosed with dysautonomia, a spectrum of 15 distinct conditions that affect the ANS to varying degrees. The conditions range from life-threatening disorders in which individuals cannot feel pain or changes in temperatures, to far more mild cases where patients experience symptoms such as lightheadedness, unstable blood pressure and changes in bodily temperature. Dysautonomia is more commonly seen in females and often occurs during puberty, but the disorder can arise at any age.

Sarah falls within the category of mild dysautonomia. Her symptoms are very troublesome, but not life-threatening. Being diagnosed brought Sarah a huge sense of relief. “I had always thought, ‘I’m just really not pain tolerant,’ so it was very empowering,” she says. “It didn’t make the symptoms better, but it was nice to have a name.”

Sarah’s feelings echo those of many chronic pain patients. Chronic pain management is a critical problem in the medical field and many patients struggle to understand their symptoms. Despite the fact that an estimated 70 million people worldwide suffer from dysautonomia, patients can go years without receiving a diagnosis due to lack of awareness.

For Sarah, having a diagnosis was the difference between suffering silently to facing the condition head-on.

Moving forward with dysautonomia

Like most chronic pain conditions, dysautonomia is a lifelong diagnosis. Patients may adopt a sedentary life in order to protect their bodies from the world around them. However, idle living is very harmful to the nervous system.

“You cannot eliminate pain,” says Lebel. “Even if we cut every axon that delivers it in the body. So it is all about developing resilience and a sense of optimism and hope.”

Luckily, Sarah is very resilient.

Sarah explores the outdoors after being treated for dysautonomia.
Sarah on a recent hike in Wyoming.

She is currently combating her fatigue with medication, as it is the symptom she finds the most debilitating. When the migraines occur, nausea pills help to reduce the unpleasantness. But the rest of her medical care is still evolving. Sarah and Lebel are working together to find the most holistic approach that addresses Sarah’s individual symptoms and restores overall balance to her body.

So far, Sarah has tried acupuncture to stimulate different bodily sites, breathing techniques to lower her ANS responses, and meditation to soothe her mind. She finds that meditating while walking has helped calm her down when she is experiencing pain or stress. But Sarah is still working to incorporate these treatment plans into her everyday life.

“I like to emphasize to my patients that we want to make the pain a background noise,” explains Lebel. “You must develop body recognition and know your body’s cues.”

This type of treatment takes a lot of time, but Sarah is hopeful. “Knowing the condition has actually helped me define myself less by it. Now I can say, ‘I’m a strong person, I just have this condition.’”

Learn more about Boston Children’s Headache Program.

About the blogger: Helen Santoro graduated from Hamilton College with a Bachelor of Arts in Neuroscience. She currently works as a research assistant at Boston Children’s Center for Pain and the Brain and manages a brain imaging study looking at children, adolescents and young adults who suffer from post-concussive headaches.