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What is dysautonomia?

Dysautonomia, also known as “autonomic dysfunction,” is the improper functioning of the autonomic nervous system. Rather than a diagnosis itself, dysautonomia is an umbrella term, frustratingly vague in the scope of symptoms and diagnoses it covers. The autonomic nervous system regulates most automatic, unconscious functions, including heart rate, blood pressure, digestion, temperature regulation and circulation, amongst others. So, when things aren’t working as they should with the autonomic nervous system, it can present as a wide variety of symptoms. Some of these include body temperature swings, shortness of breath, brain fog, fast or slow heart rate, fatigue, dizziness and fainting. Some of the conditions are rare, while others are common. This is not even close to a complete list.

The most common symptom is orthostatic intolerance. This is when you stand up and not enough blood reaches your brain, leading to dizziness or fainting. One type of orthostatic intolerance is POTS, a common diagnosis under the umbrella of dysautonomia.

What are some other specific types of dysautonomia?

POTS is the most common diagnosis. But, when experiencing symptoms of dysautonomia, you could also be diagnosed with orthostatic hypotension, vasovagal syncope, inappropriate sinus tachycardia, autoimmune autonomic ganglionopathy, baroreflex failure, familial dysautonomia, pure autonomic failure and multiple system atrophy.

Symptoms frequently overlap, and getting a diagnosis can be difficult. On average, it takes over seven years to get a proper diagnosis. Not to mention, over half of POTS patients were told by a doctor that their symptoms were all in their head. Often, patients are labeled with an anxiety disorder before continuing to seek help and receiving a new diagnosis. Of those with dysautonomia, around 80 per cent are women.

Getting a diagnosis is difficult due to a variety of factors. Testing is complex, as there is no simple biomarker. There is a lack of awareness of the disorder, even amongst doctors. And there are widespread, overlapping symptoms because it affects multiple bodily systems.

Although a diagnosis can feel reductionist to patients experiencing a unique manifestation of symptoms, it can be a useful tool to accurately label and discuss the disease, leading to more awareness both in and out of a clinical setting.

What does it have to do with autoimmunity?

Dysautonomia can be secondary to an autoimmune disorder. Dysfunction of the nervous system can frequently co-exist with mast cell activation syndrome, Sjrogen’s disease, diabetes, and celiac disease. This might be due to the immune system specifically attacking the nervous system, thus making the dysautonomia symptoms a result of the autoimmune disorder. Or they might both be resulting from another cause, like a viral infection. Regardless, they often worsen one another by increasing systemic inflammation. It is interesting to note that 80 per cent of autoimmune diagnoses are also women.

If stem cells can help autoimmunity, can they help dysautonomia, too?

One of my previous blog posts discussed the possibility of stem cell therapies for autoimmune diseases. As I wrote and this study indicates, mesenchymal stem cells (MSCs) have been shown to reduce inflammation and over-reactivity of the immune system. It has been proposed that their immunomodulatory and anti-inflammatory characteristics might be beneficial for dysautonomia, especially when it is secondary to an autoimmune disease. However, the clinical research is incredibly early and experimental.

In 2017, a small cohort study was done at the University of Texas. Two young patients received a specific type of MSCs known as ASCs (adipose stem cells) as an intravenous infusion. The first patient had severe dysautonomia symptoms, as well as elevated autoimmune antibodies. After the infusion, she saw a significant reduction in inflammatory cytokines, and she was able to complete a head up tilt table test without syncope (fainting). These remained three months after the treatment.

The second patient had arthritis, hypotension, tachycardia (abnormally fast heart rate) and dizziness, so severe it prevented him from attending school. Three months after the infusion, his symptoms and arthritic pain were practically nonexistent, allowing him to discontinue his other medications (such as anti-inflammatory agents). He also completed the 30-minute head-up tilt table test without syncope.

Because of the significant reduction in symptoms, this study received a lot of attention, particularly from stem cell banking companies. Further research is needed, with many more patients, before MSCs could be considered a safe and effective treatment for dysautonomia.

Other treatments

Currently, efficacious treatments for dysautonomia are lacking. Most include non-pharmacological approaches, such as lifestyle changes and nervous system regulation. Some are listed below.

  • Increase salt and fluid intake to expand blood volume and reduce hypotension
  • Eat small meals frequently
  • Wear compression garments to prevent venous pooling
  • Limit prolonged standing
  • Exercise
  • Get regular and adequate sleep
  • Try yoga, acupuncture, deep breathing, or other stress-relieving activities that activate the parasympathetic nervous system

There are also some pharmacological approaches, but most involve off-label medications. For example, vasoconstrictors and beta blockers are used to ease dysautonomia symptoms but fail to address the root cause. Drugs that lower anxiety or suppress an overreactive immune system are also commonly prescribed.

Despite competing hypotheses, it is unclear what exactly has caused the increased prevalence in autoimmunity and dysautonomia. Studies suggest a combination of environmental factors, like infections, diet, obesity, sleep deprivation, microbiome changes, stress, and air pollution. Dr. Wang at Yale School of Medicine proposes that part of the increase may be chemical use associated with increased sanitization. He says that his patients often experience flare-ups when dealing with stress. If stress plays a role, it is interesting to note the wide gender disparity. It is exciting that fields like regenerative medicine may offer a solution that gets closer to the root cause by alleviating inflammation and immune system over-reactivity.

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Ellie Kroeger

Ellie Kroeger is a writer and researcher currently studying the vaginal microbiome and vaginal microbiota transplants. She holds a B.Sc. in human biology from the University of Southern California. You can connect with her via her website (https://www.elliekroeger.com/).