Though the pandemic has been declared officially over, many people are left with lingering health issues after getting the COVID-19 virus. One illness in particular, dysautonomia, has become common among patients with long COVID and other pre-existing conditions.
Dysautonomia is an umbrella term for a series of disorders that impact the function of the autonomic nervous system (ANS). The ANS regulates our involuntary functions such as heart rate, breathing, blood flow and digestion, among others.
In fact, the growing number of patients with dysautonomia prompted UCLA Health to establish a dysautonomia task force to ensure patients received the proper treatment.
Dysautonomia treatment facilities are a rare find
UCLA Health’s newly assembled dysautonomia task force makes it one of just a few places on the West Coast that offers full-scale treatment for the illness.
William Pittman, MD, internal medicine specialist and UCLA Health extensivist, said treating dysautonomia is different for each patient.
“It takes a village to treat dysautonomia, and the piecemeal approach where they see this person over here and that person over there doesn’t really work,” Dr. Pittman said.
He continued, “Putting together a comprehensive clinic with a multidisciplinary approach where everybody works together is ideal for this disorder and it just doesn’t exist in Southern California.
UCLA dietitians prompt multidisciplinary task force
Nancee Jaffe, MS, RDN, lead dietitian for the UCLA Vatche and Tamar Manoukian Division of Digestive Diseases, and her colleagues noticed they were getting a lot of referrals for patients who were diagnosed with dysautonomia.
“We kept ending up with patients who were either coming straight to us or they were going to a GI doctor (gastroenterologist), getting diagnosed with irritable bowel syndrome and ended up with us,” Jaffe said. “However, we knew there were other things going on when they would talk about their blood pressure dropping or having trouble breathing.
“We reached out to cardiology and neurology and that’s how we ended up building this task force,” Jaffe said. “Now, we have a team of over 20 doctors, dietitians and nurses at UCLA. Before, these patients didn’t have a referral network. Now we are that referral network.”
Common forms of dysautonomia
There are at least 15 disorders that fall under the umbrella of dysautonomia. The most common is postural orthostatic tachycardia syndrome (POTS), according to Dr. Pittman. POTS is a condition in which patients experience lightheadedness or palpitations due to an increase in their heart rate going from a laying to a standing position – sometimes to as high as 120 or more beats per minute, frequently resulting in difficulty performing routine daily activities such as bathing or cooking.
Prior to the pandemic, POTS was diagnosed in roughly 3 million Americans. Now, in a post-pandemic era, it affects close to 6 million Americans.
“We see a frequent number of POTS patients and then we also see a number of patients with orthostatic hypotension,” Dr. Pittman said. “That is when the blood pressure drops upon standing.”
Is dysautonomia curable?
Some types of dysautonomia are more extreme than others. This means there is not one specific treatment that can alleviate the illness.
“It depends on the severity,” said Jaffe. “People can have minor or severe forms of it. We had a couple of patients recently with long COVID where POTS was the main manifestation. Once we got their hydration, sodium levels and blood pressure regulated they got better. So, yes, we’ve seen it go into remission but it depends on each person’s medical needs.”
The UCLA Dysautonomia Task Force’ loosely named by Jaffe, is not an official service line, but Dr. Pittman foresees the growth and importance of the medical unit.
“In terms of where we see this going, its purpose is to create that village of a multidisciplinary clinic or a multispecialty clinic in what’s called a ‘hub and spoke’ model where the patient sees one central person who then refers them out to the appropriate people,” Dr. Pittman said.
“Then, at the end of the day, everybody is coming together to treat the patient in an integrated approach.”
