Traditionally an expert in epilepsy, he has become somewhat of a go-to doctor for local patients with POTS, thanks in part to helping treat Willey.
Willey became Oakley’s patient in 2016, about three years after she started getting POTS symptoms.
“He hadn’t treated many POTS patients before, but my case interested him. I have three- to four-hour appointments with him. He comes in on his days off, tries different meds, asks detailed questions,” Willey says.
She says she likes being able to help her doctors learn about POTS. While many patients may expect doctors to have all the answers, Willey doesn’t. She knows better.
In 2015, the mystery of POTS almost cost Willey her life. During hip surgery, she began bleeding much more than doctors anticipated.
“I almost bled out and needed 5 units of blood and fresh frozen plasma and an emergent procedure to put metal coils in my iliac artery because the bleeding wouldn’t stop,” she says.
She says her doctors think this rapid bleeding was due to POTS. Some research shows that the blood vessels of POTS patients behave abnormally, constricting and loosening in unpredictable ways.
Now that her doctors are aware, they can be extra cautious. But, until POTS is better understood, other patients could face similar danger.
The dysfunction of functional diseases
POTS being little-understood in the medical community and its variance among different patients mean it is also often misdiagnosed. When it is diagnosed correctly — sometimes years after symptoms first appear — doctors may find that they’re forced to treat the symptoms rather than the cause.
“These are challenging symptoms to try to diagnose. They often don’t have a structural cause we can see, we can’t biopsy it or take pictures of it, can’t get a bloodwork panel that demonstrates the symptoms. Think of it as a problem with the functioning of the system. Medicine doesn’t know how to deal with that very well,” Oakley says.
Functional diseases and disorders mean that there aren’t any visible problems in the body — no injuries, tumors or inflammation. Everything looks healthy, but it doesn’t function that way.
Doctors think POTS symptoms stem from an impairment in the nervous system, specifically in the way the autonomic nervous system (ANS) signals to various parts of the body. The ANS is responsible for our fight-or-flight response, things like heart rate and digestion, and reflexes such as sneezing and swallowing.
But why does the ANS start functioning oddly? Research shows that POTS often occurs after a major illness or infection, or even after pregnancy. Still, that doesn’t explain why POTS begins, or why it can be so severe when nothing looks physically wrong with the body.
“It doesn’t mean that the ANS is structurally broken, either,” says Oakley. “Sometimes it may be the ANS is acting appropriately to compensate for other problems, and some symptoms are part of that compensation.”