“I feel like I've spent my life wanting, like wanting to be able to tell the story.”
Melanie Caturia is a mom of two in her late 40’s who lives in Minocqua.
She recalls being a sickly child, but the real trouble didn’t start until she was a teenager.
At 19, she started experiencing heat intolerance, a common symptom of Postural Orthostatic Tachycardia Syndrome or POTS.
“I loved sun, so that was very weird for me. I loved heat,” she explained.
She wouldn’t be diagnosed with POTS until years later when she was finally able to get a tilt table test in 2023.
Postural Orthostatic Tachycardia Syndrome:
For most people, your temperature is regulated by your nervous system; when you get too hot, you sweat and that cools you off, for example.
In people with POTS, their temperature is not regulated properly, because there’s dysfunction of the autonomic nervous system, the system that manages involuntary bodily processes like breathing, digestion, temperature regulation and more.
“I couldn't walk, I was very out of breath. It feels like I have ran a marathon. It feels like I'm.. in deep exhaustion, so I couldn't walk from my car to the school,” she said.
POTS is characterized by a dramatic increase in heart rate upon standing, leading to dizziness and sometimes even fainting.
“There are days where I cannot stand up. I'm very lightheaded, very dizzy,” said Caturia.
Since POTS impacts the whole nervous system, symptoms are far-ranging from nausea to headaches to blurry vision to constipation to extreme fatigue.
Comorbidities:
Comorbidities are exceedingly common.
A 2019 study looked at the largest collection of POTS patients then recorded and found that 83% reported at least one other diagnosis on top of POTS.
A quarter of POTS patients also have Ehlers-Danlos Syndrome, a group of heritable connective tissue disorders.
Caturia’s daughter was diagnosed with Hypermobile Ehlers-Danlos Syndrome, and Caturia herself is still being tested.
“For me, it's so validating to hear especially the comorbidities,” said Caturia.
Hypermobile Ehlers-Danlos Syndrome, or HEDS, is a form of Ehler-Danlos Syndrome characterized by joint hypermobility with frequent partial or full dislocations because of defects in a protein called collagen.
People with HEDS are almost always in some form of pain.
“They call it the coat hanger pain. I have a lot of upper upper neck and upper shoulder problems. My hips bother me, but not as bad as the neck. I have more neck problems than anything else,” she said.
Opioids and Addiction:
When Caturia first asked her doctors for help managing her chronic pain, she was prescribed opioids.
After four years, she was addicted.
When they cut her off cold turkey, she turned to heroin for a year.
“I've now been 12 years clean,” she said.
However, she’s treated differently in ERs and by physicians.
Besides her POTS symptoms and HEDS chronic pain, Caturia also deals with cyclical vomiting syndrome,a condition that could be connected to her autonomic dysfunction.
“But I am treated as a drug seeker. My doctors, my ER doctor once wrote in there that he firmly believed that I was seeking drugs. Coming to find out I had a large ovarian cyst with a lot of pain and it triggered a cyclic vomiting episode,” said Caturia.
Since the turn of the century, it’s been widely acknowledged that America, particularly rural America, is embroiled in an opioid epidemic.
Opioids were routinely overprescribedin the management of chronic pain, leading to addiction.
Studies have shown that patients using opioids chronically to treat non-cancer conditions are at risk of developing opioid use disorders.
Paula Hensel is the lead nurse practitioner with Family Marshfield Health Center Drug and Alcohol Recovery.
Hensel asks her clients how they ended up needing to be seated in front of her in recovery and on many occasions, physical injuries or ailments are to blame.
“Addiction does not discriminate, it doesn't care, okay, because it's a brain disease,” she explained.
After being prescribed a pain reliever to recover from a surgery, for example, some people become addicted because their brain is wired to respond to the drug with a feedback loop.
When the body’s mu receptors are filled by a prescription pain reliever like Oxycontin, pain is relieved and some people experience a corresponding sense of euphoria, solidifying a positive feedback loop.
“Now the same thing can happen as well with somebody with a chronic physical ailment, especially if it's something that's a little bit ambiguous and hard to diagnose. But you know, you're hurt. So you get some pain medicine, and then that cycle starts,” said Hensel.
Treatment:
There are treatment programs available for opioid addiction recovery.
Hensel often prescribes Buprenorphine for people struggling with opioid use disorder since it reduces pain levels without a sense of euphoria.
To break down emotional dependency, there’s counseling.
“When I was practicing either in urgent care, internal medicine, I always felt it was really important to figure out the ‘why’. Why are you having so much pain?” she said.
However, there are patients like Caturia, who are no longer in active addiction, who know their ‘why’, who are still denied treatment.
When they come into emergency rooms with legitimate pain crises, they are often mislabelled as“drug-seekers”and refused the care they need.
“I cannot believe some of the care and the treatment that I've had,” said Caturia.
People with complex conditions like Caturia’s need better treatment and care in hospitals and emergency rooms, and they need it as soon as possible.
