“I don’t want anyone to go though what I had to go through.”

Person falling down

Lauren Stiles story with dysautonomia began in a familiar way – a sudden, mysterious and debilitating decline

(Athletic and healthy, Lauren Stiles was suddenly felled by a mysterious illness in the middle of ski trip that left her unable to walk. It took years, but Lauren’s doctors ultimately found that an autoimmune disease had attacked her autonomic nervous system, which had resulted in the symptoms of dysautonomia. Not wanting anyone else to go through what she did, Lauren created Dysautonomia International in order to bring attention to a prevalent but under diagnosed condition.

Many studies have documented autonomic nervous system problems in ME/CFS/FM.  From postural tachycardia syndrome to blood flow problems  to muscle issues  to poor blood pressure regulation to sleep and the emotions the ANS is showing up again and again in chronic fatigue syndrome and fibromyalgia.

Now, to celebrate Dysautonomia Awareness Month, Lauren Stiles gives us a tour of the complex world of autonomic dysfunction – one many doctors are unaware of – in Dysautonomia 101 for ME/CFS/FM)

What is Dysautonomia?

Dysautonomia is an umbrella term that means any dysfunction of the Autonomic Nervous System (ANS).  The ANS controls the involuntary functions of the body like heart rate, blood pressure, breathing, digestion, sweating, kidney function, dilation and constriction of the pupils and more.

autonomic issues chart

One reason dysautonomia is under diagnosed is because it can cause so many different symptoms (Copyright (c) 2012 Vinik)


When there is damage to the ANS, or if it is not functioning properly, a person can experience symptoms impacting any one or more of these bodily systems, and sometimes all of them at once.

Common symptoms of dysautonomia include lightheadedness, fainting, dizziness, shortness of breath, chest pains, abnormally low or high blood pressure, abnormally fast or slow heart rates, palpitations, sluggish pupils that don’t constrict properly, which can cause headaches and sensitivity to light, gastrointestinal motility problems, which can result in diarrhea, constipation, bloating, feeling very full after meals, reduced or sped up movement of food through the GI tract, bladder dysfunction, which can cause a person to have to go often or to have trouble emptying their bladder, problems regulating body temperature, which can make a person very sensitive to warm or cold environments, excessive or reduced sweating and much more.

Not every person who has dysautonomia has every symptom, and not every symptom on this list is always caused by dysautonomia.  Additionally, not every malfunction of the ANS means a person is “sick” with dysautonomia.  For example, fainting is usually caused by a temporary imbalance in the ANS, but fainting once or twice in your life is pretty common, even in totally healthy people.

Is “Dysautonomia” a Disease?

No, “dysautonomia” is not a specific disease or diagnosis.  If your doctor has told you that you have “dysautonomia,” ask your doctor which kind of dysautonomia you have, or what’s causing it. There are a number of different medical conditions that are considered to be primary forms of dysautonomia, such as:

  • Neurocardiogenic Syncope
  • Postural Orthostatic Tachycardia Syndrome (POTS)
  • Autoimmune Autonomic Ganglionopathy
  • Pure Autonomic Failure
  • Multiple System Atrophy
  • Baroreflex Failure
  • Familial Dysautonomia

Family Matters


If a family member also has autonomic issues, you probably don’t have Familial Dysautonomia

It is important to note, having relatives who also have dysautonomia symptoms doesn’t mean you have “Familial Dysautonomia.”  Familial Dysautonomia (“FD”) is a very specific inherited form of dysautonomia that only impacts about 350 people in the world.  It is seen in people who are born to two Ashkenazi Jewish parents who both passed on a specific gene mutation.  FD patients usually have severe disability from the time of early childhood, and often have developmental problems and distinct facial characteristics. While there have been advances in the treatment of FD that prolong life, FD patients often do not survive beyond 20-30 years.

If you have dysautonomia and another relative does too, it is very unlikely that you have FD. Many other primary forms of dysautonomia can run in families, such as Neurocardiogenic Syncope and Postural Orthostatic Tachycardia Syndrome. Additionally, there are secondary causes of dysautonomia, explained below, that can also be passed down through families – such as diabetes or Sjögren’s Syndrome.

Secondary Forms of Dysautonomia

Secondary forms of dysautonomia are diseases and conditions that don’t always cause dysautonomia, but can in some cases.  For example, diabetes is not considered to be a form of dysautonomia, but if diabetes causes damage to the autonomic nerves, as it does in about 20% of diabetics, it can cause the symptoms of dysautonomia.  Doctors call this Diabetic Autonomic Neuropathy.

Many other underlying diseases and conditions can cause damage to the autonomic nerves which results in dysautonomia symptoms – Pre-Diabetes, Sjögren’s Syndrome, Lupus, Anti-Phospholipid Syndrome, Multiple Sclerosis, Parkinson’s, Lyme Disease, HIV, Guillain-Barre, Paraneoplastic Syndrome associated with some forms of cancer, certain chemotherapy and other drugs that can cause autonomic nerve damage, vitamin deficiencies, heavy metal poisoning, alcoholism, mitochondrial diseases, genetic diseaes and more.

This is why it is so important to see an experienced autonomic specialist if you have symptoms of dysautonomia.  Identifying and ruling out potential underlying causes can be a complicated process, and make take the expertise of several specialists in different fields.

In some cases, no underlying cause of the autonomic neuropathy can be found.  This would be called “idiopathic autonomic neuropathy” or “idiopathic dysautonomia.” Some doctors use the terms “autonomic neuropathy” and “dysautonomia” interchangeably. Autonomic neuropathy means that the autonomic nerve fibers have been damaged.  Dysautonomia can refer to the damage that has occurred to these nerves.  Dysautonomia can also refer to a malfunction of the Autonomic Nervous System when the autonomic nerves fibers are intact.

Is Dysautonomia Rare?

Nope! Dysautonomia might not be well known, and might be misunderstood by a majority of the medical profession, but it is not rare at all. Some of the primary forms of dysautonomia are considered rare diseases, such as Familial Dysautonomia, Autoimmune Autonomic Ganglionopathy and Multiple System Atrophy, but other forms, such as Neurocardiogenic Syncope and Postural Orthostatic Tachycardia Syndrome (POTS) are relatively common.

Dr. Philip Fisher, Chairman of Pediatric and Adolescent Medicine at the Mayo Clinic, is a prominent POTS researcher.  He has estimated that POTS impacts about 1 out of every 100 teenagers.  Looking at the 2010 Census data, this would equate to just about 500,000 teenagers having POTS in the US.  We know that POTS impacts adults as well.  Other experts estimate that POTS impacts between 500,000 and 1,000,000 Americans.

Dysautonomia is common - and under diagnosed

Dysautonomia is common – and under diagnosed

Of course, POTS is not just an American problem.  As awareness increases within the medical profession, people are getting diagnosed with POTS all over the world and POTS research is now occurring on several continents.  If we used the conservative estimate of 500,000 Americans having POTS, and if we assumed that the same percentage of the population was impacted worldwide (which may or may not be the case), that would mean that roughly 11 Million people on planet earth have POTS.  The number would double if we used the higher 1,000,000 Americans estimate.

While the precise statistics have not been determined yet, it is clear that POTS is not rare.

Secondary causes of dysautonomia are even more common.  For example, the 20% of diabetics who develop autonomic neuropathy discussed above translates into 69 Million people worldwide. Dysautonomia was thought to be a rare complication in Sjögren’s Syndrome, until very recently when researchers in the UK determined that over 50% of Sjögren’s patients had dysautonomia.

Perhaps most interesting to the readers of this website, the more dysautonomia symptoms the Sjogren’s patients had, the more fatigue and pain they had as well.  Sjögren’s is estimated to impact up to 35 Million people worldwide.  If 50% of those individuals have symptoms of dysautonomia as a result of their Sjögren’s, that’s another 17.5 Million people who have dysautonomia. Combining all of the primary and second forms of dysautonomia together, dysautonomia is a very common.

How is Dysautonomia Diagnosed?

“I was misdiagnosed by several doctors, but the disorder causes so many symptoms that it mimics other illnesses,” Lauren Stiles

Some aspects of dysautonomia can be easily diagnosed based on symptoms and a routine office visit exam that includes checking your pulse and blood pressure lying down, and then after 5-10 minutes of standing still.  This is called a “poor man’s tilt test.”  More extensive work ups can be performed at specialty centers that focus on autonomic disorders.  These specialty centers are often staffed by neurologists, cardiologists, or electrophysiologists that have a focus on autonomic disorders.

world map

Check out Dysautonomia International’s World Map to find doctors, support groups and other resources

Autonomic specialty centers use a combination of tools to evaluate patients with suspected dysautonomia.  This may include a tilt table test, a QSART (quantitative sudomotor axon reflect test), a thermoregulatory sweat test, radio-labeled blood volume analysis, Valsalva testing, cold pressor hand grip analysis, gastric motility testing, skin biopsies to evaluate small fiber sudomotor nerve density (also called the Sweat Gland Nerve Fiber Density test), pupillometry and other tests.  Not every patient will need every test.

While dysautonomia as a whole is fairly common, many doctors are not adept at recognizing it or diagnosing it. Unfortunately, this lack of awareness often causes a lengthy delay from the onset of symptoms to the time of diagnosis.  Dysautonomia International’s interactive map  provides the name and location of many doctors who have experience diagnosing different forms of dysautonomia.

How is Dysautonomia Treated?

Any underlying condition that could be causing the dysautonomia should be treated, as this will often help improve the dysautonomia symptoms.  If no underlying cause can be identified, the goal is to reduce the patients’ symptoms through non-pharmacological methods, lifestyle adaptions, and medication if necessary.  The specific treatment depends on the symptoms of dysautonomia that the person is experiencing.

Non-Drug Approaches

Common non-pharmacological measures include increasing salt and fluid intake, wearing compression stockings or an abdominal binder, getting regular reclined exercises like rowing, recumbent biking and swimming (exercise helps build up blood volume, improves hemodynamics, and prevents deconditioning which can make dysautonomia symptoms worse), learning counter-maneuvers that can help prevent a faint from occurring, sleeping with the head of the bead on an incline, eating smaller meals more often throughout the day, reducing intake of refined flours, sugars and other low nutrient high carbohydrate foods, avoiding hot showers, wearing a cooling vest in the summer, and wearing extra layers in the winter.

You can find dysautonomia friendly exercise tipssalty food ideas and products like compression stockings that some patients find useful on the Dysautonomia International website.


water glasses

Both ME/CFS and dysautonomia patients often drink increased fluids with salt

Medications may be added to help minimize symptoms.  The medications used depend on the particular requirements of each patient, but may include beta blockers, midodrine, Florinef, clonidine, Mestinon, SSRI or SNRI drugs (not just for their anti-depressive effects, but for their regulation of neurotransmitters used by the autonomic nervous system), octreotide or Provigil. Outside of the United States, ivabradine is sometimes used instead of beta blockers.  Ivabradine is not approved in the U.S.

In urgent situations, IV saline can be used to help increase blood pressure and improve hemodynamics, but experts warn against using IV saline as a regular treatment due to the risks of blood clots and infections that come with any infusion method, particularly PICC lines and chest ports.

Where Can I Find More Information?

dysautonomia international

Formed in 2012, Dysautonomia International has three offices, an interactive map and an informative website

Dysautonomia International is an all-volunteer 501(c)(3) non-profit focused on improving the lives of people living with dysautonomia through research, education, advocacy and patient empowerment.  Our website offers lay person and physician oriented information on many different forms of dysautonomia, dozens of peer-reviewed journal articles, educational videos, patient stories, coping tips, and resources for family, friends, employers and educators.

You can find out about the latest dysautonomia related news, events and research by “Liking” our Facebook page, www.facebook.com/dysautonomiainternational, and following us on Twitter @Dysautonomia. You can also find dysautonomia related support groups, awareness events, meet ups, and doctors who specialize in autonomic disorders on the Dysautonomia International Interactive Global Dysautonomia Map.

Dysautonomia Awareness Month

This October has been the second annual Dysautonomia Awareness Month. While you’re “thinking pink” for breast cancer awareness each October, don’t forget to “make some noise for turquoise!” Turquoise is the color used by Dysautonomia International and several other groups to represent dysautonomia awareness.  This past month volunteers from around the world have been holding dysautonomia awareness activities, fundraisers, and educational events to help spread the word about dysautonomia.

StilesHeadshotAbout the Author: Lauren Stiles, Esq. is the President and co-founder of Dysautonomia International, an all-volunteer 501(c)(3) non-profit that seeks to improves the lives of individuals living with disorders of the autonomic nervous system through research, education, advocacy, and patient empowerment. While working as an environmental attorney based in New York, she took an interest in dysautonomia advocacy after being diagnosed with POTS secondary to Sjögren’s Syndrome in 2011. 

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