On ADD, OSA, and the current state of American medicine

I recently shared some of my personal medical history here (see the “My cancer” series), not because my case is special or more important than that of anyone else, but because it could benefit millions of others. Here’s another, earlier personal-health story I’ve shared widely, for the same reason (and especially when my audience includes medical and educational professionals). It concerns two diagnoses, the first of which was made when I was 42, after my wife Debbie heard a show on our local NPR station (WHYY, Philadelphia), an episode of Dr. Dan Gottlieb’s “Voices in the Family,” about children and adults diagnosed with “Attention-Deficit Disorder,” and its hyperactive cousin, ADHD. She said to herself, “Hmmm...they could be talking about my husband.” I was persuaded to get a diagnosis, done at the VA hospital in Coatesville, PA.

Like most maladies which present in the behavioral sphere, the diagnoses are based on collections of symptoms rather than any physical problems, although there are potential physical problems which must be ruled out in the process of diagnosis. The VA was thorough in ruling out any such problems (except for one: that was to be the second diagnosis, two decades later).

I took the usual medicines for ADD (Ritalin, and Prozac for the depression which usually dogs those with ADD), for 20 years, before I got a second diagnosis, again spurred by Debbie, who complained about my snoring. The VA tested me for OSA (Obstructive Sleep Apnea), and gave me a CPAP machine (an acronym for Constant Positive Airway Pressure), with instructions to use it for a month and report back.

When the month was up, I decided to try stopping the ADD medication, to see what differences it might make to my cognition, behavior, and overall well-being. I could tell no differences, and never again took those medicines. Today, thirteen years later, I feel that I’m doing better than I have at any other time of my life.

At no time during my educational “career” was I diagnosed, or treated, for this or any other condition that might have caused my behavior and performance (or lack of it) in school. I must confess to my Swarthmore High School classmates that if I were to represent myself as a “graduate of SHS,” I would be exhibiting as much mendacity as "45," aka "Agent Orange," did when he called himself a “stable genius.”

I did progressively worse between 9th and 10th grades, and finally flunked eleventh grade, primarily from an inability to complete homework and reading assignments (from an inability to focus and concentrate). I repeated the eleventh grade, but failed a second time. I then spent part of the next year getting a GED from a now-defunct Philadelphia diploma mill, Lincoln Prep, after the rest of you graduated. I had the good fortune to have a father who owned a business (John Spencer, Inc., commercial printers in Chester, PA.) who provided me with gainful employment. I had already learned all the mechanical skills of the trade during the summers between the misery of going to school.

This “disorder” had a different name when I was at Swarthmore Elementary, “Minimal Brain Damage.” (A full timeline is at https://www.healthline.com/health/adhd/history.) Since then, a syndrome (collection of symptoms) has been labelled as ADD and/or ADHD. There are health professionals who have built careers on diagnosing, treating and providing talk therapy for those given this diagnosis. Many books have been written on ADHD-related topics, magazines founded, self-help groups established, and even tests devised to produce CT and PET scans to show physical differences between the brains of “normal” and afflicted individuals. 

These scans have been cited as proving the reality of the “disease” as a real physical phenomena, rather than a “mere collection of symptoms.” However, other studies have shown that behavioral change resulting from any cause, physical or not, will show up as brain changes in scans. Billions of dollars have been made by the pharmaceutical industry to treat the symptoms, with no one claiming a cure.

Meanwhile, medical specialists in pulmonary health have settled on a universal cure—the CPAP machine (although there are alternative approaches, usually involving surgery, to keep the airway open during sleep).

I was astonished to learn what few are aware of: the symptoms of ADD and OSA are virtually identical. What happens to those with untreated OSA? Each night, usually while sleeping on their backs, the musculature and tissues at the back of the throat totally relax, blocking off the airway. Breathing, and blood oxygenation, stops; CO2 builds up in the lungs, which triggers the autonomic system to release adrenalin—enough to make the person roll to one side and reopen the airway, but not enough to awaken the OSA victim. The two main consequences of this cycle, which can recur a hundred times per night or more, are the loss of enough quality sleep to restore normal brain function, where short-term memory is processed to sort wheat from chaff and establish long-term memories, while the subconscious can process experience into organized concepts essential for problem-solving. The other main consequence of OSA is the cumulative negative effects of perhaps a hundred surges per night of adrenalin. Those experiencing substantial OSA can get eight hours of sleep without the restorative benefits that “normal” people get, always feeling tired, falling asleep on their feet, unable to concentrate on tasks—in short, all the usual symptoms of ADD. Those with ADHD compensate by daytime adrenalin surges, with accompanying negative consequences.

Unfortunately, the medical professionals in each specialty are “siloed” and seldom recognize that they are each treating people with the same sets of symptoms. When I’ve had the opportunity to tell my story to these professionals, they’re almost always surprised to hear it. My strong belief is that many, if not most, people diagnosed with ADD/ADHD actually suffer from OSA. 

So far, my efforts to get the attention of these siloed professionals have fallen on deaf ears. Few studies have been done to determine the extent of this symptom-overlap and fewer still done to determine the extent of misdiagnosis. One reason for the opacity of the silos is the financial and psychological disincentives to even recognize the problem, let alone fix it. Few want to admit to an error on which their whole career has been based, or kill the golden goose of their profession, just as most politicians don’t support getting money out of politics.

Because of the Covid-19 pandemic, my high school class reunion was held via Zoom meetings, where I saw a presentation by a classmate, Bill Ryerson, who has made a career of advancing global human welfare, focusing on women’s rights and population control. His most successful venue to pursue these goals? Entertainment. If you watched any of “East Los High” on Hulu, a top-rated, award-winning show, you’ve seen the fruits of some of his best work. Please visit https://www.populationmedia.org/projects/east-los-high/ to see it (and the rest of the work of the organization he founded, the Population Media Center). 

I welcome any suggestions you may have, dear reader, on how to get my ADD/OSA story out to a wider audience. Professional groups (medical and educational) remain siloed. Hulu? TedX? A YouTube channel?