It’s common. It’s treatable. And it’s easily screened. So why is postural orthostatic tachycardia syndrome (POTS) so often misdiagnosed? And why are many patients left struggling for answers?
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POTS recently made national news when Nick Voles, Eagles quarterback and Super Bowl MVP, revealed how his wife Tori struggled to find a doctor to take her symptoms seriously. Initially, doctors told her that she had a virus and problems with anxiety and depression. It took six weeks for doctors to discover that she actually had POTS and recommend an effective treatment plan.
Here neurologist Robert Wilson, DO, provides some key insight on understanding this condition that affect’s the body’s circulation — and how diagnostic accuracy and speed are vital for symptom relief.
Q: What are the symptoms of POTS?
A: The most common symptom of POTS is chronic fatigue. Other symptoms include body aches and exhaustion. About a third of patients faint. Other patients are plagued by adrenaline symptoms such as chest pain, racing heart rate (during sleep), sweating and difficulty breathing. POTS feels like having the flu, but having to drink coffee to get through the day.
Q: Why is POTS often misdiagnosed?
A: Many of the symptoms described above seem very cardiac-driven. However, at the hospital or ER, the doctors will find that the POTS patient’s heart is fine. It’s actually the adrenaline that’s producing a lot of these symptoms to compensate for a neurologic problem.
Often, patients have so many symptoms and are consulting so many different specialists that there’s no cohesive assessment or treatment. In addition, POTS symptoms are often misdiagnosed as adrenal fatigue — a term used to describe a group of symptoms when nothing else can be used to explain it.
Awareness of POTS in today’s medical culture is limited. Recently, however, there’s been a growing awareness of POTS that’s evolving across the board. As the general population is learning more about it, the medical community is being educated as well.
Q: Why is clarity of diagnosis so important?
A: Knowing what’s going on is half the battle for patients with POTS. Once you find out that the suffering was not all in your head and that it has a real diagnosis, that’s what really jumpstarts the healing process and helps give you hope.
Q: How is POTS tested/assessed?
A: Seeking answers from a medical center with autonomic expertise will give you a better chance of receiving an accurate diagnosis. If you think you may have POTS, it’s important that your doctor rules out other conditions, including thyroid disease.
Your autonomic medical specialist will use a special tilt table test to diagnose your condition. The tilt table test is designed to measure heart rate and blood pressure as you change your body position from lying flat to a 60- to 70-degree angle. The title table is the best way to confirm a POTS diagnosis.
Q: How is POTS treated?
A: Treatment plans for POTS may include the following:
- Multidisciplinary patient education, including shared medical appointments.
- Self-help tools for patients to use to improve their body through diet and exercise (including a cardiac rehab therapy model of exercise).
The good news is that several wellness tools have proven much more effective in managing POTS than expensive supplements.
Q: What are the risk factors for developing POTS?
A: Anyone can develop POTS. However, it’s more common among women than men. Sometimes, we see POTS develop after a chronic health issue (such as mono) or an injury to the head, spinal cord or autoimmune system.
Q: Is there any research being conducted in support of POTS disease management?
A: We recently completed a biofeedback study that revealed some very useful data. Over the summer, we are offering a summer wellness program that focuses on nutrition for POTS disease management. Next year, we may be conducting a yoga study in support of POTS treatment.
Q: What should you do if you think you may have POTS?
A: Discuss your condition with your family doctor who should schedule a proper POTS evaluation or refer you to an appropriate specialist, such as a neurologist or cardiologist, who has autonomic experience.