Our causes of POTS

There are many different possible underlying causes of POTS. The Dysautonomia Information Network website lists 31 different categories of them!

Many of us search for the cause of our POTS, and it's a common topic in online support groups, so we used the POTS Patient-Powered Survey to more efficiently share some answers. For starters, here's how many respondents reported knowing the cause of their POTS:

Yes, 107 No, 157 Possibly, 182

The fact that only about 1/4 of patients knew their underlying cause was a testament to how mysterious POTS can be. Next, for those who answered "yes," we asked them about the specific causes listed below, and whether each one was "unlikely," "maybe," "likely," or "almost definitely" the cause of their POTS.

EDS or other connective tissue disorder, 60 Autoimmune disorder, 15 Infection including Lyme Disease, 12 Injury or head trauma, 7 Mast cell disorder, 9 Surgery, 4 Pregnancy, 4 Mitochondrial disease, 3 Vaccination, 1

One thing to keep in mind about these prevalence rates is that they also reflect how easy or common it is to identify each of the underlying causes. For example, some Lyme disease tests are famous for their relatively high rate of false negatives, making it trickier to diagnose.

Next, we asked those same 107 confident patients if they had other suspected causes, besides those listed above. Here are the write-in answers (we included all, even though some fit in the above categories):

  • Growth spurts (mentioned by 3)
  • Vitamin B12 deficiency
  • Car accident
  • Diving accident, getting the bends
  • Physical and emotional stress
  • Chemical exposure from chemotherapy for Leukemia
  • Chemotherapy-induced neuropathy
  • Behcet's disease
  • Meningitis
  • Mono
  • Myalgic encephalomyelitis
  • Flu and pneumonia
  • Chronic kidney and bladder infections
  • MS spinal relapse
  • Celiac disease
  • Reaction to the drug Avelox, caused autoimmune reaction
  • Gardasil vaccination
  • Appendicitis combined with surgery and extreme emotional abuse

Wow...So many ways to get POTS! As I read each cause, I couldn't help but think of the long tough journey that somebody experienced with each and every one. This syndrome isn't boring. I'll give it that.

Some patients have made the observation that triggers may be different than causes: for example, a concussion might trigger POTS, but an autoimmune disorder might have set the stage. To allow for both to be registered with this survey, we let participants report multiple causes and/or triggers. Maybe someday we'll be able to separate the causes from the triggers...so that we can avoid both.

We have lots more findings here, or to receive occasional email updates on new findings, you can sign up on our homepage. Be well!


underlying causes