Not all in the head: Matt's story
When Matt was 12, he was an A student, an avid cyclist and active socially. But something began to change. He began to have difficulty concentrating and suffered migraines. His grades slipped dramatically. When he stood up, he’d lose his equilibrium, sometimes falling or walking into things. His bicycle went untouched. He no longer went out with friends. He would fall asleep unexpectedly. His teachers became impatient. His perplexed parents had him tested for drugs. Now 15, he says, “I started feeling like an all-around failure. People were thinking it was all in my head.”
His mother, Renee, concluded, “This is not my Matt,” and thus began a two-year odyssey seeking a diagnosis.
Finally, they got an answer. The name of the mysterious illness that had so changed Matt’s life was postural orthostatic tachycardia syndrome, commonly known as POTS. POTS is a chronic condition affecting blood flow that is most often seen in adolescents. It results from a problem with the autonomic nervous system which controls “automatic” functions such as heart rate, blood pressure, body temperature, respiration and digestion.
Various studies suggest that more than 100,000 Americans have POTS. However, because of the complexity of symptoms and frequent misdiagnosis, it is only an estimate. The condition was identified relatively recently and the cause is uncertain. It tends to follow a growth spurt or may be linked to puberty. Many report it starting after a viral infection such as a flu or a cold.
Renee and her son had an unusual reaction to the news. “We just started laughing. We were overjoyed to finally get a diagnosis,” she says. “Once you get a name for something, then you can really go after it.”
Their excitement at getting a diagnosis was tempered, however, when they learned that there is no specific cure for POTS. They would have to wait it out.
But there was cause for optimism when they were referred to Children’s Memorial cardiologist Barbara J. Deal, MD, who runs an Autonomic Dysfunction Center with a POTS clinic with her nurse specialist, Jennifer Winter, APN. Deal says, "POTS really exists, it's a big problem and it's a bit difficult to diagnose.”
Her prescription for Matt includes increased fluid intake to help improve circulation, and exercise as he is able to help strengthen his muscles and regulation of blood pressure..
The regimen seems to be working. Matt has been able to resume his activities, not quite to the extent that he had before, but he’s feeling fairly normal again. His school has allowed him flexible hours and a modified physical education program, demonstrating that understanding is key. With dietary and activity changes, he has made remarkable improvement, and is now back to an “A” student and riding his bike 5-6 miles daily.
There is additional good news for Matt. In his case, it is likely that POTS will resolve in a matter of two to three years. Most patients do recover, but sometimes not until they are in their early 20s.
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