Journey to diagnosis: 5.8 years

There are many different causes of POTS, and although each patient has their own journey from symptom onset to diagnosis, we wanted to get a better picture of the process. We used the POTS Patient-Powered Survey to ask a few questions about it, starting with the following.

Gradual, 119 Sudden, 113 In-between, 158

Next, we asked participants to list the approximate dates when they first experienced POTS symptoms, when they first saw a doctor about the symptoms, when they became confident they had POTS, and when they were officially diagnosed. Because we had also collected information on month and year of birth for each participant, we were able to calculate the age at which these milestones occurred. Below are the average ages.

Age of first symptoms, 21.0 Age of first doctor visit for these symptoms, 23.0 Age when patient became confident they had POTS, 26.4 Age at official POTS diagnosis, 26.8

This means that the average POTS patient had symptoms for 2 years before consulting a doctor, and then waited another 3.8 years for a diagnosis.

As we reported in more depth here, we also asked participants how many doctors they had consulted before they visited the one who recognized POTS. The average answers are below:

  • Mean number of doctors seen before the doctor who recognized POTS: 8 doctors

  • Range: 0-50+ doctors

For many patients, getting a POTS diagnosis is not the end of their quest for answers, but the beginning. Here are our survey findings about underlying causes of POTS. We have lots more findings here, or to receive occasional email updates on new findings, you can sign up on our homepage. Be well!


doctors onset symptoms