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What do you know about POTS? Chances are you hadn’t heard of this condition before, but it caught your attention in late June when Christina Applegate shared her 13-year-old daughter Sadie’s diagnosis. Or you may have even seen a video about it on TikTok, where numerous people living with POTS have been creating content to help educate and raise awareness. It’s not as uncommon as you might expect!
Still, hearing about Sadie’s diagnosis may have you rattled as a parent. POTS was something you were only mildly aware of (if at all) — you didn’t realize it was something you needed to worry about afflicting someone as young as your tween or teen. So, you’ve got questions. What is POTS? What are POTS symptoms? How do they test for it? Does this condition ever go away?
We asked Joan Quinonez, PT, DPT, a district director at ATI Physical Therapy, to share some insight on what you should know about a POTS diagnosis.
What is POTS?
POTS stands for postural orthostatic tachycardia syndrome, explains Quinonez, which is “a condition characterized by an abnormal increase in heart rate upon transitioning from a lying down to an upright position. This dysregulation can result from decreased blood volume or an impaired ability to pump blood back to the heart.”
Basically, your body’s autonomic nervous system, or ANS, is supposed to balance your heart rate and blood pressure to ensure your blood flows at a healthy pace. However, the autonomic nervous system of someone with POTS can’t balance those things, leading to blood pressure irregularities.
Recently, researchers have begun to describe POTS as an autoimmune disorder, but there isn’t currently much research to confirm its exact origin. According to the NIH, though, it seems POTS often develops after pregnancy, major surgery, trauma, or viral illness.
What are the symptoms of POTS?
Quinonez says people with POTS often experience:
- Heart palpitations
- Dizziness upon standing
- Fainting or near-fainting episodes
- Significant fatigue
- Limited aerobic endurance
- Brain fog
The Cleveland Clinic says it can also manifest as:
- Feeling nervous or anxious
- Shortness of breath
- Chest pain
- Headaches
- Bloating
- Feeling sick
- Disrupted sleep
- Purple discoloration of the hands and feet if they’re lower than the heart
The most common, or at least the most recognizable, symptom of POTS is fainting after standing up due to the drop in heart rate.
How is POTS diagnosed?
Although POTS can be difficult to diagnose, physicians utilize several methods, from asking questions about symptoms and medical history to performing a physical exam.
Physicians diagnose POTS primarily by testing how a person’s heart rate and blood pressure respond to position changes. One way they do this is through a simple standing test. Here, the patient lies down and relaxes in the physician’s examination room, during which their heart rate is monitored. After a brief period of time, the patient is asked to stand, and the physician will recheck their heart rate. If it jumps up more than 30-40 beats per minute, it can strongly indicate POTS.
At that point, the physician may order more tests or labs, as well as potentially refer you to a specialist.
Is POTS common in young adults?
Surprisingly so! It affects 1 to 3 million people in the United States. “POTS is relatively common, typically manifesting in early teens (12-15 years), and predominantly affecting females — approximately 75% of those diagnosed,” says Quinonez.
She also notes that POTS diagnoses seem to be popping up more frequently in recent years: “With the rise of POTS cases post-COVID infection, understanding this condition has never been more pertinent.”
What should you do if your tween or young teen gets diagnosed?
If diagnosed with POTS, Quinonez emphasizes the importance of a coordinated care approach. This includes:
- Wearing compression clothing to prevent blood pooling in the lower extremities
- Ensuring proper hydration with electrolytes
- Maintaining balanced nutrition
- Gradually increasing aerobic and muscular conditioning under the guidance of a knowledgeable physical therapist
During acute flare-ups, she recommends:
- Lying on the back with legs elevated
- Utilizing compression on the legs and slowly changing positions
- Hydrating and adding salt to alleviate symptoms
Sometimes, a person’s physician may prescribe medicine to help your autonomic nervous system better adjust to movements and keep your system stable. These medicines might include fludrocortisone, midodrine, or beta-receptor-blocking agents. However, many physicians (including Quinonez) recommend lifestyle adjustments.
Of course, you should always consult with your primary care doctor anytime you begin a care plan.
Does POTS ever go away?
According to Johns Hopkins, once you have POTS, you always have POTS. But symptoms can come and go, and a good treatment plan can mitigate them when they do flare.
If you, your kiddo, or any other loved one has just been diagnosed with POTS, rest assured that there is a ton of information and helpful resources available to you. And never underestimate the power of a follow-up doctor’s appointment or simply sending your physician an email or MyChart message. Their job is to help you be healthy, and that means working with you to tackle any health issues that come up.
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