POTS: People Oppressed by Treatment Shortages

Postural Tachycardia Syndrome (POTS) prevents the body from maintaining blood pressure and blood flow to the brain and other major organs when a person stands.

 

Here’s what you need to know:

  • It’s estimated the syndrome affects at least half a million Americans
  • Symptoms include:
    • poor concentration
    • throbbing or discomfort in the head or neck
    • tiredness or weakness
    • nausea
    • shortness of breath
    • fainting

According to Dr. Blair Grubb, POTS is the result of poor evolution:

“When humans stood upright, our system of blood vessels evolved to tighten and push blood upward to the heart and brain when we’re in a vertical position. In those with POTS, the system is malfunctioning and their blood vessels fail to tighten when they stand.”

As far as Dr. Geoffrey Heyer (who runs the POTS clinic at Nationwide Children’s Hospital in Columbus, Ohio) is concerned, “the syndrome is under-treated.”

POTS, you see, doesn’t have it’s own FDA-approved treatments. Instead, doctors rely on a trial-and-error approach with drugs intended to treat blood pressure or fluid retention, or with antidepressants and stimulants.

There are, however, lifestyle remedies as well:

  • Increase salt intake to 2000 to 4000 mg/day
    • Salt helps keep fluid levels in the body balanced while also affecting nerve impulses and muscle function
    • Of course, the American Heart Association recommends no more than 1500 mg of salt each day. More than that can increase the risk of heart disease and stroke.
      • The AHA also cautions that “if you have a medical condition or other special dietary needs or restrictions, you should follow the advice of a qualified healthcare professional.”
  • Exercise
    • At least 20-30 minutes of aerobic activity each week
    • Weight training for the lower body
  • Drink eight 8 oz. glasses of water each day
  • Wear compression stockings

So while some things can be done to manage symptoms, having no “gold standard” treatment is concerning. Beyond the syndrome itself (and its effects), what are the long-term health challenges for those living with POTS? A diet high in salt can’t be good, neither can the side effects of so many medications that weren’t ever intended to treat this in the first place.

Better treatments are clearly needed. So for those of you living with POTS, what are the management solutions you’ve discovered?