Thread by @jenbrea

Genuine question: why is it so difficult for doctors to believe patients who are having a hard time breathing, not due to lung or cardiovascular problems, but rather, central apnea? It seems to be a fairly simple problem to demonstrate and measure.

Central apnea was one of my main complaints following my thyroidectomy. When I laid flat on my back, I would become paralyzed and locked in a perpetual cycle of repeated apneas lasting 30-60 seconds.

We had no idea what was going on—it is truly terrifying to not be able to tell your diaphragm muscles to contract at will—and after a few days, it seemed to be getting worse. I stopped being able to sleep, so one night, we went to the ER.

Told the ER doctor that when I turned my head or lay down on my back, I become paralyzed and can’t breath. He examined me and pronounced me ”fine.” They tried to send me home but as my husband tried to transfer me back into my wheelchair, I slumped over, unable to move or breathe

Luckily, someone else saw this, and so they decided to hold me for observation. A really wonderful hospitalist told me, “I know (patients with your diagnoses) have a hard time being listened to or understood, but if you are willing to try again, I’ll do what I can to help you.”

They kept me until a neurologist could exam me. He did the typical exam (which always comes back normal—I now know what he should have done, but they never do...)

The entire time, it was impossible to establish that I wasn’t breathing. Either this didn’t alarm anyone or did not make sense.

Fast forward through many other outpatient neurology consults, I am in a different hospital, this time in the ICU. They keep me overnight. I intentionally do not wear a cervical collar. I fall asleep but keep waking up...not breathing.

I can hear the machine alarming. I can SEE the O2 saturation dipping into the 80s, then the 70s, and back up to 98, over and over again.

The next morning, the ICU doc comes in and says, “Good news is, there’s nothing wrong.”

“What do you mean, I kept have apneas.”

”No you didn’t, we followed you all night, everything is fine.”

“What do you mean everything is fine? I kept waking up paralyzed and unable to breathe. The alarm kept going off. I kept having apneas.”

”There are lots of alarms here. Alarms can go off for all kinds of reasons. We monitored you, you are fine.”

Luckily, a nurse spoke up for me. She explained that their system for continuous recording had actually crashed sometime after 9pm, but that if you looked at the brief window during which they did record me, yes, I was having apnea’s.

My neurosurgeon storms in shortly after and starts asking me about if I have a history of mental illness (this is literally our first encounter). He also tells me I am breathing just fine, but sure, he’ll do the battery of tests required to rule out my ultimate diagnosis.

During the test itself (invasive cervical traction), he asks me about my symptoms. I tell him about when I am and when I am not breathing. Every time I tell him I stopped breathing he says, “No you didn’t.”

It was only, finally, as I was about to pass out (from the readministration of anesthesia), when his PA said, “she’s not breathing” that a doctor *finally observed* that I was, in fact, not breathing: four months after living with near constant apnea.

There is a woman in one of our FB groups with a very similar problem—her brain cannot tell her diaphragm muscle to contract reliably. She sometimes only breathes 3-4 times a minute. Multiple other patients have chimed in saying they have this symptom.

None of them can get this problem documented or get a doctor to take it seriously.

*I do not understand.*

But more to the point—why are doctors so quick to assume their patients are lying?