Living with Dysautonomia

If you are like most of the public, the term dysautonomia probably means little or nothing to you.  Despite more than 70 million people with this condition around the world, most of the general public and a large fraction of the medical community is unfamiliar with it. What you should know is that dysautonomia is a class of conditions that involve a dysfunctional autonomic nervous system. There is no cure for any dysautonomia condition but there are treatments to help manage symptoms.

Dysautonomia as a Class

Dysautonomia is an umbrella term for a variety of disorders that involve an improperly functioning autonomic nervous system. The autonomic nervous system (ANS) governs involuntary physiological functions that include

  • Blood pressure
  • Heart rate
  • Respiration
  • Digestion
  • Body temperature
  • Bladder function
  • Hormonal function
  • Sexual function

Anyone can develop dysautonomia at almost any age. You may be born with a dysautonomia condition, or you may develop it gradually or quite suddenly at any age. Dysautonomia may appear independently, or it may arise as a secondary health problem related to a primary health condition like

  • Diabetes
  • Lupus
  • Parkinson’s disease
  • Multiple sclerosis
  • HIV
  • Lyme disease
  • Amyloidosis
  • Guillain-Barre syndrome
  • Crohn’s disease
  • Ulcerative colitis
  • Celiac disease

There are many causes of dysautonomia which is, at its most basic, an inability to properly communicate with the ANS. In some cases, there may be some kind of damage to the peripheral nervous system, i.e. nerves outside of the brain and spine, which interferes with nerve signal transmission. Some forms of dysautonomia may be inherited, while others may result from autonomic disorders.

Although there are no cures for dysautonomia, some varieties may disappear on their own, while others may stop worsening. In most cases, however, you will have to manage symptoms through medications or lifestyle changes.

Common Types of Dysautonomia

Some of the most common kinds of dysautonomia include

  • Postural orthostatic tachycardia syndrome—POTS is a heart condition in which the heart rate rises to 120 beats per minute upon standing for 10 minutes. Most POTS patients exhibit symptoms like fatigue, headaches, shakes, nausea, fainting, chest pain, heart palpitations, or shortness of breath. Symptoms may be mild or so severe that they are debilitating. POTS may afflict from one to three million Americans, with 80 percent being female. Treatment includes various medications and lifestyle changes like drinking more fluids.
  • Neurocardiogenic syncope—this is the most common variety of dysautonomia, affecting tens of millions of people around the world. In healthy people, the autonomic nervous system adjusts the heart rate and muscle tension to maintain blood flow to the brain, but this system falters in people with neurocardiogenic syncope. If blood flow to the brain is interrupted, this may cause fainting. Common triggers include stress, dehydration, high temperature environments, tight clothing and alcohol use. Medications and pacemakers may be used to manage this condition.
  • Multiple system atrophy—this condition develops in about 2 to 5 people in every 100,000, mostly after age 55. MSA causes deterioration of regions in the brain which can lead to speech problems, motor issues, balance difficulties, high blood pressure or bladder control problems. MSA is often mistaken for Parkinson’s disease. This condition is managed with medications and lifestyle changes.
  • Autonomic dysreflexia—this is a secondary dysautonomia condition usually brought on by a spinal injury. The spinal injury prevents pain signals from reaching the brain, but the autonomic nervous system responds disproportionately and produces large spikes in blood pressure.  This can present with symptoms that include headache, red face, slow pulse, nausea, clammy skin near the injury site, or blotchy skin.
  • Diabetic autonomic neuropathy—almost 20 percent of diabetics, or 69 million people globally,  suffer from diabetic autonomic neuropathy. This condition causes the nerves regulating heart rate, blood pressure and blood glucose levels to malfunction. This may produce a variety of symptoms including increased resting heart rate, hypotension while standing, constipation, respiratory issues, erectile dysfunction, or digestion issues.
  • Familial dysautonomia—although not a common form of dysautonomia, familial dysautonomia is noteworthy because it is entirely hereditary. Limited to a few hundred Ashkenazi Jews from Eastern Europe, FD appears in infancy or childhood as slow growth, respiratory issues, kidney and heart problems, loss of bladder control, and frequent lung infections. Although life expectancy has improved due to advancing medicine, familial dysautonomia is still a fatal condition in most cases.

Diagnosing Dysautonomia

It is not always easy to distinguish dysautonomia from other health conditions, so diagnosing dysautonomia may become a long and involved process. If you have risk factors like diabetes or you are on nerve damaging cancer drugs, it is more likely that your physician will consider dysautonomia as a potential condition.

If there are no clear warning signs that you are suffering from dysautonomia, then your doctor may have to perform one or more tests including

  • Autonomic function tests—measures heart rate and blood pressure during exercises
  • Tilt-table test—measures heart rate and blood pressure while you are in various inclined positions
  • Thermoregulatory sweat test—assesses your perspiration response to changes in temperature
  • Bladder function test—analyzes bladder and urinary function

Treating Dysautonomia

Although there is no cure for dysautonomia at this time, it is still possible to manage many of these conditions. There are two primary approaches to treatment of dysautonomia: treating the underlying cause and managing symptoms. Because dysautonomia is so often a secondary health condition brought on by another primary health issue, if the primary condition can be slowed or remediated, then the dysautonomia can also be slowed or resolved. A common case is managing blood sugar levels so that dysautonomia progression can be slowed.

Managing the symptoms of a dysautonomia condition may require a multi-tiered strategy. For example, you may need medications to restore autonomic function, but this may need to be supplemented with lifestyle changes that include diet, exercise and symptom-specific activities.  This might include drinking more fluids and ingesting salt if you have blood pressure or heart rate issues, or adopting posture changes to help support blood circulation if fainting is an issue.

Article written by: Dr. Robert Moghim – CEO/Founder Colorado Pain Care

M.D. Disclaimer: The views expressed in this article are the personal views of Robert Moghim, M.D. and do not necessarily represent and are not intended to represent the views of the company or its employees.  The information contained in this article does not constitute medical advice, nor does reading or accessing this information create a patient-provider relationship.  Comments that you post will be shared with all visitors to this page. The comment feature is not governed by HIPAA and you should not post any of your private health information.