Learn About Dysautonomia – Doug Lindsay’s Disease

Here are excerpts from Resource (1) from CNN on the outstanding researcher Doug Lindsay.

Here are excerpts:

Doug Lindsay was 21 and starting his senior year at Rockhurst University, a Jesuit college in Kansas City, Missouri, when his world imploded.

After his first day of classes, the biology major collapsed at home on the dining room table, the room spinning around him.
It was 1999. The symptoms soon became intense and untreatable. His heart would race, he felt weak and he frequently got dizzy. Lindsay could walk only about 50 feet at a time and couldn’t stand for more than a few minutes.

The former high school track athlete had dreamed of becoming a biochemistry professor or maybe a writer for “The Simpsons.”

Instead, he would spend the next 11 years mostly confined to a hospital bed in his living room in St. Louis, hamstrung by a mysterious ailment.

He researched his problem and connected with clinicians and actually designed his own treatment. His story is inspiring and you can watch his TED talk to learn the full story.

He theorized that he had a disease of the autonomic nervous system  (a Dysautonmia) and he began researching that possibility.

What is Dysautonomia:

Dysautonomia is a general term used to describe a breakdown, or failure of the autonomic nervous system. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment.

Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted. These conditions are often misdiagnosed.

Over one million Americans are impacted with a primary autonomic system disorder. The more common forms of these conditions include Postural Orthostatic Tachycardia Syndrome (POTS) / Orthostatic Intolerance (OI), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure (PAF) and Multiple Systems Atrophy (MSA).

So Doug Lindsay researched his problem and came up with the solution by working with sympathetic clinicians. Again watch the complete TED talk where he explained how he reached out to and established a working relationship with an endocrinologist. Over the subsequent two years, they determined that he had either Primary Hyperepinephrinemia or Adrenal Medullary Hyperplasia.

In researching the literature, Mr. Lindsay could only find 35 documented cases world-wide of Adrenal Medullary Hyperplasia and only 5 cases of Primary Hyperepinephrinemia.

Mr. Lindsay designed a surgery that would remove the adrenal medulla thus removing the diseased tissue that was over-secreting epinephrine.

Eighteen months after coming up with the surgery idea, Mr. Lindsay underwent the surgery at The University of Alabama Birmingham.

He had been sick eleven years when he got the surgery. Before the surgery he had only been able to walk a few feet. Within several months of the surgery he could walk several miles.

Mr. Lindsay’s TED Talk is inspiring. Watch it.

For educational materials geared to patients see Resource (2) below.

And for a resource geared to physicians and to patients who want in-depth knowledge of the Dysautonomias see the outstanding free e-text book in Resource (3).

Resource (4) is a link to the professional scientific society dedicated to the Autonomic Nervous System.


(1) This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself. By Ryan Prior, CNN Updated 11:40 AM ET, Sat July 27, 2019

(2) Educational Materials from Dysautonomia International:

Dysautonomia International is a non-profit that seeks to improve the lives of individuals living with autonomic nervous system disorders through research, physician education, public awareness and patient empowerment programs.

(3) Principles Of Autonomic Medicine v. 2.1 [Full Text PDF, 723 pp.]by David S. Goldstein, MD PhD, 2017.

Here is a link to Dr. Goldstein’s complete table of contents.

(2) The American Autonomic Society:

The American Autonomic Society has been established to bring together individuals from diverse disciplines who share an interest in the structure and function of the autonomic nervous system and in the pathology, treatment, and prevention of its disorders. The Society sponsors annual meetings and provides a point of contact among the many interested clinical and basic scientists who wish to communicate across disciplinary lines.

(4) Diagnosis and Treatment of Adrenal Medullary Hyperplasia: Experience from 12 Cases [PubMed Abstract] [Full Text HTML] [Full Text PDF]. Int J Endocrinol. 2014;2014:752410. doi: 10.1155/2014/752410. Epub 2014 Aug 27.


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